I meant to get on and wish everyone a Merry Christmas...sorry I missed it. Hope all went well and with the icky icy weather we had here (in MI for sure) everyone was safe.
Ours was well. Christmas eve was my 1st negative hard hit with the SSD (single sided deafness)....I'm figuring that is what it is for sure, even though I still feel swollen and fullness on that side. I sat at a table and conversation was going on amongst about 8 people, and I don't think I got any of it......THAT stunk. Don't help that I'm still off in areas, but wow....that was weird.
Tinnitus has gone down a lot too, just don't understand the swelling felling and fullness. If mastoiditis infection, my antibiotic of 30 days is about up...hmmm
Well, I hope everyone has a Happy New Year!!! A lot of people from our church usually get together play games, puzzles, cards, eat, etc., the kids always love it. Not sure I'm into all that noise this year. Neil is on call that night and works both days but might take the boys for awhile. It will be at one of his cousins houses this year and should be a good time.
So, here's to wishing us all a HAPPY NEW YEAR!!!!!!!!!!!
Tuesday, December 29, 2009
Sunday, December 20, 2009
Been Awhile
Yeah, I know it's been awhile since I've been on. Not actually feeling the greatest. I've been going through a lot and just want to feel better.
Anyways, GOOD news is: I'm pretty sure the facial paralysis is ALL gone. I can even close my eye lid fine. The tinnitus in my ear is still coming and going, and sometimes way worse (enough to make me sick). I'm still trying to be really good and stay very limited. It's too hard to walk around here due to our snow, but I do most of my home exercises I was given. I can't do anything that makes me bend at all....makes me want to pass out. Plus I still walk funny and tire out extremely quick.
I did get into a spinal/physical pain doctor tomorrow due to the fact 3 doctors still think my issues are coming from my neck and all down my spin. Can't wait....she will be the one to check over everything and then refer me to some kind of therapy or something. I'm even now been having numbness pains going all the way from my neck and back to my finger tips...its weird, sometimes like someone is poking me with pins.
Well, like I said, better news, and still working on things. Keep me in the prayers, and for emotional reasons for myself and my family......I DEFINATELY need that! I feel like I've missed out on too much. For those of you who know me, I love to be at anything at school. Well, no awards assembly this year (due to all issues, same with no conferences....luckily Neil had both days off and went), but now the kid Christmas parties are tomorrow. I can't even drive yet, and scared to ask someone to take me incase I start not feeling well....then what? Also, still got a few Christmas things to get/due....ugh! Crude, I just realized stocking stuffers too.....oh man, I just need to feel energized.
Thanks again for EVERYTHING....
With Love, Denise
Anyways, GOOD news is: I'm pretty sure the facial paralysis is ALL gone. I can even close my eye lid fine. The tinnitus in my ear is still coming and going, and sometimes way worse (enough to make me sick). I'm still trying to be really good and stay very limited. It's too hard to walk around here due to our snow, but I do most of my home exercises I was given. I can't do anything that makes me bend at all....makes me want to pass out. Plus I still walk funny and tire out extremely quick.
I did get into a spinal/physical pain doctor tomorrow due to the fact 3 doctors still think my issues are coming from my neck and all down my spin. Can't wait....she will be the one to check over everything and then refer me to some kind of therapy or something. I'm even now been having numbness pains going all the way from my neck and back to my finger tips...its weird, sometimes like someone is poking me with pins.
Well, like I said, better news, and still working on things. Keep me in the prayers, and for emotional reasons for myself and my family......I DEFINATELY need that! I feel like I've missed out on too much. For those of you who know me, I love to be at anything at school. Well, no awards assembly this year (due to all issues, same with no conferences....luckily Neil had both days off and went), but now the kid Christmas parties are tomorrow. I can't even drive yet, and scared to ask someone to take me incase I start not feeling well....then what? Also, still got a few Christmas things to get/due....ugh! Crude, I just realized stocking stuffers too.....oh man, I just need to feel energized.
Thanks again for EVERYTHING....
With Love, Denise
Wednesday, December 9, 2009
More updates 1 MONTH Post Op!!!
Well, I have been being very good. It have been doing VERY good, just like the doctor told us. Pretty much I feel as if I have been doing nothing. Not talking as much either and my jaw muscle is for sure feeling the healing!! ALSO, the facial paralysis is getting a bit better every day....I'll have to post more pictures.
I still have the back and neck pains, but got antoher call yesterday from doctor in Detroit. He said to get started right away to get into someone who does treatment in multiple ways. Well, I was working on it today, then our power went out, and I felt tired. TOMORROW....that 's my job. Of course my kids will be off school or 5 days (today and tomorrow due to blizzardy snow storm and Friday for Teacher Professional Development day....then the weekend). Luckily the noises are a bit better too, otherwise I wear ear plugs :-)
MARCIE, click on my spot that says view complete profile, then under my picture says email. I am doing MUCH better I can talk some, or visit....if call 1st!! :-)
CECILE, thank you sooooo much from a fellow ANer who understands a lot. It helps keep my spirits up and know things can get better!! I too have been having some of the ?vertigo/balance stuff. I have been doing all the exercises they told me, but said NOTHING with bending my head. There is still more than usual pressure in there. I get some headaches, but the come from my neck up and the neurosurgeon said I need to get them looked at a.s.a.p. (probably a lot of my problem)....thanks again, see you on the ana forum soon!
Thank you again and again & BLESS YOU ALL!!
Love, Denise
I still have the back and neck pains, but got antoher call yesterday from doctor in Detroit. He said to get started right away to get into someone who does treatment in multiple ways. Well, I was working on it today, then our power went out, and I felt tired. TOMORROW....that 's my job. Of course my kids will be off school or 5 days (today and tomorrow due to blizzardy snow storm and Friday for Teacher Professional Development day....then the weekend). Luckily the noises are a bit better too, otherwise I wear ear plugs :-)
MARCIE, click on my spot that says view complete profile, then under my picture says email. I am doing MUCH better I can talk some, or visit....if call 1st!! :-)
CECILE, thank you sooooo much from a fellow ANer who understands a lot. It helps keep my spirits up and know things can get better!! I too have been having some of the ?vertigo/balance stuff. I have been doing all the exercises they told me, but said NOTHING with bending my head. There is still more than usual pressure in there. I get some headaches, but the come from my neck up and the neurosurgeon said I need to get them looked at a.s.a.p. (probably a lot of my problem)....thanks again, see you on the ana forum soon!
Thank you again and again & BLESS YOU ALL!!
Love, Denise
Saturday, December 5, 2009
One Month Follow Up Friday!!!
Well, we made our trip back to Novi yesterday. Hit some NASTY winter snow around Grand Rapids, cars in the ditches everwhere. Glad we made it fine!
Seen the neurotologist and he said that the swelling in my brain is a bit more that usual, but not looking as a concern because it has started to come down. Problem is that my healing time is going to go way slower and I NEED to be VERY careful. Basically, need to keep my head up as much as possible, be doing nothing near strenuos at all, and to be getting plenty of rest/relax time. If I don't, it will get worse and I could have more complications.
The paralysis situation is very slowly coming down too, but just need the patience with that. Since I had totally fine facial issues for a week after surgery, that means I will improve (unless I don't rest and take care of myself) ((TRUST ME, I WILL)).
I basically got almost every symptom that could come along after (for me it was one week after for some things) this surgey. Delayed facial paralysis, which includes the eyelid not closing & double vision, that side of nose internal swelling feeling, tinnitus (ringing and noises in the ear), metallic taste (or taste disturbance and mouth dryness), dizzy and balance issues, hearing loss. Well, since most of these things have shown a hair bit of progress that is a good thing (also the fact they were fine in the beginning).
The doctor said it is hard to undertstand why everyones bodies react in such a differnet way. ALSO as many of you know I was having (and still am) pain throughout my lower spine and neck. This cold very well be part of what is going on with my body and not letting it heal properly. Someone asked if I had even been diagnosed with an autoimmune disease becasue they tend to flair bad after major surgeries. Well, after Trenton was born I had been being tested for something, but as time went on I wa better and lab tests started coming back normal (Odd??)
I told Dr. Zappia (the neurotologist) that my family doctor's nurse called after the MRI's and said the radiologist thought I may have a mastoid infection and to get on a specific antibiotic. So, I did get on it and the next day asked Zappia what he thought. He said due to the surgical stuff, the radiologist may not have been knowledgeable about it, BUT to go ahead and stay on it, just in case, plus this time of year is so bad for illnessess. With the major dose of steroids I was on my immune system is down big time anyways. (yesterday was my last day of steroid unless things get worse...yipee!!)
Also Dr. Zappia kept all my MRI CDs and reports that did my entire spine and is gonna run them by the neurosurgeon who worked on me. Basically because my family doctor didn't think there was much to worry about. Even Dr. Zappia said there were notes and impressions on every scan......need to find out more. Neil & I were so excited at how kind they are there and how they take their time, etc. Even after the hearing test came back negative he said I need to go back in 2 months and try again. Due to the swelling so bad, it may come back. But if not they took the time to explain other options. They put a little sample of the BAHA (bone anchored hearing aid) on me and explained how the bones inside your skull work with noises, etc. It was AWESOME....I could actually hear. I said right away....give me more info in case my hearing don't come back. WELL, it is another small surgery where they put a titanium small rod into a bone behind your ear. Then there is a little device that snaps onto it (mine would be the smaller one and it's size looked about like a starburst candy size). With my lovely thick hair and style, you'd never see it. You can't get it wet, etc., but wow...it was neat. Of course, then comes the price $18,000 YIKES. Some insurances will pay for it though. Basically Neil said even if ours won't, we'll be figuring out how to get it. Being young, I'd have a long time, plus between him & the boys I think they are already tired of me not hearing on that side. Like Neil kept saying things on the way down to the doctors, but I didn't hear him (because he was on my left side).
Oh well, now I have some thoughts, and happy to know that there is progress, even though it is really going slow. No driving, no nothing really for awhile. It''s all later because of the excessive brain swelling.
So, we need to keep praying that swelling goes down, and when it does, the hearing progresses too. Also that there is nothing else seriously going on with my body. I can't stand taking these pain meds, but I also can't stand being in the pain.
I still have to limit my talking :-( because my jaw muscle that was cut is also swollen a bit and it is affecting nerves too! Nerves and the brain are the longest and hardest things got heal. SO, I AM going to be very good!! I want to be able to enjoy Christmas and start off the New Year feeling somewhat normal.
I am so thankful that God has given me such a wonderful family, friends, my good ole facebook friends, my Acoustic Neuroma forum friends, and of course, that Doctor who is so patient, caring and thoughtful (along with his caring staff, and other doctors, etc. who have dealt with me)! Now, just need help with this interior of my body stuff ;-)
The doctor reminded us once again that just because one day may be great, DON'T over do it, and the next day may not be as good.....it can take months to heal up.
Well, hope you're enjoying my informative book (not blog) I have been writing!!! Never ever, ever thought it was gonna be this difficult for me. But thanks again for all the comments, emails, facebookd messages, cards and calls!
Love, Denise
Seen the neurotologist and he said that the swelling in my brain is a bit more that usual, but not looking as a concern because it has started to come down. Problem is that my healing time is going to go way slower and I NEED to be VERY careful. Basically, need to keep my head up as much as possible, be doing nothing near strenuos at all, and to be getting plenty of rest/relax time. If I don't, it will get worse and I could have more complications.
The paralysis situation is very slowly coming down too, but just need the patience with that. Since I had totally fine facial issues for a week after surgery, that means I will improve (unless I don't rest and take care of myself) ((TRUST ME, I WILL)).
I basically got almost every symptom that could come along after (for me it was one week after for some things) this surgey. Delayed facial paralysis, which includes the eyelid not closing & double vision, that side of nose internal swelling feeling, tinnitus (ringing and noises in the ear), metallic taste (or taste disturbance and mouth dryness), dizzy and balance issues, hearing loss. Well, since most of these things have shown a hair bit of progress that is a good thing (also the fact they were fine in the beginning).
The doctor said it is hard to undertstand why everyones bodies react in such a differnet way. ALSO as many of you know I was having (and still am) pain throughout my lower spine and neck. This cold very well be part of what is going on with my body and not letting it heal properly. Someone asked if I had even been diagnosed with an autoimmune disease becasue they tend to flair bad after major surgeries. Well, after Trenton was born I had been being tested for something, but as time went on I wa better and lab tests started coming back normal (Odd??)
I told Dr. Zappia (the neurotologist) that my family doctor's nurse called after the MRI's and said the radiologist thought I may have a mastoid infection and to get on a specific antibiotic. So, I did get on it and the next day asked Zappia what he thought. He said due to the surgical stuff, the radiologist may not have been knowledgeable about it, BUT to go ahead and stay on it, just in case, plus this time of year is so bad for illnessess. With the major dose of steroids I was on my immune system is down big time anyways. (yesterday was my last day of steroid unless things get worse...yipee!!)
Also Dr. Zappia kept all my MRI CDs and reports that did my entire spine and is gonna run them by the neurosurgeon who worked on me. Basically because my family doctor didn't think there was much to worry about. Even Dr. Zappia said there were notes and impressions on every scan......need to find out more. Neil & I were so excited at how kind they are there and how they take their time, etc. Even after the hearing test came back negative he said I need to go back in 2 months and try again. Due to the swelling so bad, it may come back. But if not they took the time to explain other options. They put a little sample of the BAHA (bone anchored hearing aid) on me and explained how the bones inside your skull work with noises, etc. It was AWESOME....I could actually hear. I said right away....give me more info in case my hearing don't come back. WELL, it is another small surgery where they put a titanium small rod into a bone behind your ear. Then there is a little device that snaps onto it (mine would be the smaller one and it's size looked about like a starburst candy size). With my lovely thick hair and style, you'd never see it. You can't get it wet, etc., but wow...it was neat. Of course, then comes the price $18,000 YIKES. Some insurances will pay for it though. Basically Neil said even if ours won't, we'll be figuring out how to get it. Being young, I'd have a long time, plus between him & the boys I think they are already tired of me not hearing on that side. Like Neil kept saying things on the way down to the doctors, but I didn't hear him (because he was on my left side).
Oh well, now I have some thoughts, and happy to know that there is progress, even though it is really going slow. No driving, no nothing really for awhile. It''s all later because of the excessive brain swelling.
So, we need to keep praying that swelling goes down, and when it does, the hearing progresses too. Also that there is nothing else seriously going on with my body. I can't stand taking these pain meds, but I also can't stand being in the pain.
I still have to limit my talking :-( because my jaw muscle that was cut is also swollen a bit and it is affecting nerves too! Nerves and the brain are the longest and hardest things got heal. SO, I AM going to be very good!! I want to be able to enjoy Christmas and start off the New Year feeling somewhat normal.
I am so thankful that God has given me such a wonderful family, friends, my good ole facebook friends, my Acoustic Neuroma forum friends, and of course, that Doctor who is so patient, caring and thoughtful (along with his caring staff, and other doctors, etc. who have dealt with me)! Now, just need help with this interior of my body stuff ;-)
The doctor reminded us once again that just because one day may be great, DON'T over do it, and the next day may not be as good.....it can take months to heal up.
Well, hope you're enjoying my informative book (not blog) I have been writing!!! Never ever, ever thought it was gonna be this difficult for me. But thanks again for all the comments, emails, facebookd messages, cards and calls!
Love, Denise
Thursday, December 3, 2009
ONE MONTH CHECK UP TOMORROW
Well, tomorrow is basically my 1 month (a few days sigh) post op of my Middle Cranial approach for the acoustic neuroma removal..
I'v bee having almost every side effec that can go along with it, plus some additional spinal pains. I went for MRI's of every thing Monday, so hope to get some easy news.
I thing I've read in other ANers blogs or caringbridge or forums is patience. BOY are the right! It isn't easy.
Please keep me in your prayers and thoughts and I will try to update tomorrow!
Thank you all, with my heart full of love,
Denise Sanford
I'v bee having almost every side effec that can go along with it, plus some additional spinal pains. I went for MRI's of every thing Monday, so hope to get some easy news.
I thing I've read in other ANers blogs or caringbridge or forums is patience. BOY are the right! It isn't easy.
Please keep me in your prayers and thoughts and I will try to update tomorrow!
Thank you all, with my heart full of love,
Denise Sanford
Wednesday, December 2, 2009
What is AN??
Well, I've had a couple people actually e-mail me to ask what an AN or ANer meant.
AN stands for the Acoustic Neuroma tumor. So, when we mention our fellow ANers, it is referring to the others that we have gotten to know via a forum or something.
Hope that clarifies it :-)
I had also joined a groupon Facebook and she started askinng questions where to go, etc., etc. Well I told her I ended up at Micigan Ear Insitite and Michigan Brain and Skull and loved them.....................well, she lives near Detroit. How lucky!
Seems like I have made a LOT of addtional friends with this blog and using the ANAUSA discussion forum. It is so helpful, and hopefully listing all my truth and experiences will help someone in the future (of course they better not go through the spinal pain.....ugh! that must just be my body....findng out soon though)
Thanks again everyone for the nice comments, emails, prayers, cards, calls, gifts, meals, visits and everything else, YOU'RE ALL AWESOM!!!!
hugs Denise
AN stands for the Acoustic Neuroma tumor. So, when we mention our fellow ANers, it is referring to the others that we have gotten to know via a forum or something.
Hope that clarifies it :-)
I had also joined a groupon Facebook and she started askinng questions where to go, etc., etc. Well I told her I ended up at Micigan Ear Insitite and Michigan Brain and Skull and loved them.....................well, she lives near Detroit. How lucky!
Seems like I have made a LOT of addtional friends with this blog and using the ANAUSA discussion forum. It is so helpful, and hopefully listing all my truth and experiences will help someone in the future (of course they better not go through the spinal pain.....ugh! that must just be my body....findng out soon though)
Thanks again everyone for the nice comments, emails, prayers, cards, calls, gifts, meals, visits and everything else, YOU'RE ALL AWESOM!!!!
hugs Denise
Monday, November 30, 2009
MRI's are Done....thankfully
I know many have said to let you know how the MRI stuff went. Well, I had to take a valium 1 hour before to relax my body. And for sure I needed it because I was having the fullness, tension, etc. today. Also due to the fact of the spinal pain (which was seeming better), they had me take pain medicine.
Once I arrived they (Memorial Medical) were very nice and asked if my body felt real relaxed because the MRIs were gonna last 2 1/2 hours. HUH?? I almost freaked out because I have just been starting to have the back pain coming back, and everything in my head still felt like full pressure. So, I ended up taking ANOTHER of each pill. Due to the noise issues I'm having they put earplugs in each ear, and then put on the big headphones........that worked great.
There was only one point where they could stop and let me stretch my back for a few and have some ice chips (I think all these meds are causing real dry mouth.....or something). Then they finished the MRI, even propped my legs up some to help decrease the pain in my back.
Well, low and behold (due to my luck), when I was done I felt like I could barely move. All the pain in my back side was there, and my head felt like it was swollen like a balloon. There for sure must be something going on in my lower spine. They actually told me to take another darvocet. (GEE, I never knew you could take so much crap.....I really hate it, but know it's to help with the pain and should be temporary).
I made my mom take me into Meijers to walk some to stretch out my back & legs, and to get some fruit. That helped the pain some........but how in the world can I function will all the medicines I had taken????
One thought on the spinal pain is I'm going down on the steroid. The doctors say steroids help with pain too, so it will be interesting what the next few days bring. I think the steroids are causing my face to puff, it feels weird.
Anyways, I said I'd let yas know. Now I'm in tears again because of the pain, but at least what I had done today should help get us some answers.
Thanks again for all the prayers...............we need to be healing better. I am doing basically nothing like I was told.
Oh, I got the CD of all the MRI to take to the dr. on Friday. I'm gonna check it out, the girl said it was o.k.
Once I arrived they (Memorial Medical) were very nice and asked if my body felt real relaxed because the MRIs were gonna last 2 1/2 hours. HUH?? I almost freaked out because I have just been starting to have the back pain coming back, and everything in my head still felt like full pressure. So, I ended up taking ANOTHER of each pill. Due to the noise issues I'm having they put earplugs in each ear, and then put on the big headphones........that worked great.
There was only one point where they could stop and let me stretch my back for a few and have some ice chips (I think all these meds are causing real dry mouth.....or something). Then they finished the MRI, even propped my legs up some to help decrease the pain in my back.
Well, low and behold (due to my luck), when I was done I felt like I could barely move. All the pain in my back side was there, and my head felt like it was swollen like a balloon. There for sure must be something going on in my lower spine. They actually told me to take another darvocet. (GEE, I never knew you could take so much crap.....I really hate it, but know it's to help with the pain and should be temporary).
I made my mom take me into Meijers to walk some to stretch out my back & legs, and to get some fruit. That helped the pain some........but how in the world can I function will all the medicines I had taken????
One thought on the spinal pain is I'm going down on the steroid. The doctors say steroids help with pain too, so it will be interesting what the next few days bring. I think the steroids are causing my face to puff, it feels weird.
Anyways, I said I'd let yas know. Now I'm in tears again because of the pain, but at least what I had done today should help get us some answers.
Thanks again for all the prayers...............we need to be healing better. I am doing basically nothing like I was told.
Oh, I got the CD of all the MRI to take to the dr. on Friday. I'm gonna check it out, the girl said it was o.k.
Sunday, November 29, 2009
ONE MORE NOTE, sorry :-)
Sorry all my posts seem so long. I think this blogging has been the best thing for me. Those who know me know I like to talk :-) But due to the brain swelling and the fact they cut part of a jaw muscle, I'm really limited. (didn't realize that at 1st, but now I know) Anyways, the blog helps me with that! So, just treat it like you're reading a book!!
Trenton's Broken Hand
Well, I said I would add something different!!
I've had lots of people ask how Trenton broke his hand....remember he had to go get a cast on the day of my surgery! Between him and his "injuries", and me and my health, we are keeping the medical people in business!!! ha ha ha!!
Anyways, he had hurt his arm I think the Friday morning before in the kitchen. I thought he said he was just swinging it around and bashed it on the side of one of our very heavy oak kitchen chairs. We were getting ready for school (and we've always made the boys be tough), so I just said hurry up, you'll be fine.
Nope a few hours later school calls. Trenton wasn't crying or anything, but the side of his hand was swollen and she said it was looking green. Sigh.....went to get him, figured it did look oddly swollen so I better take him in. Sure enough, it was broke. The doctor (or whoever) said it looked like a boxer break. Yeah, whatever......I really was dealing with anxiety over the surgery, and he was alive and fine and not crying or anything. We were told he had to wait until Monday to cast it because of the swelling. (yep, I wasn't pulling the greatest concerned mommy that day..............not like I haven't had it a ton with him before....sorry bud!!) Later at dinner we were asking him again how he hurt it. He got up and showed us that he hit the back of the recliner chair.....just like he was punching it!!!! UGH!!! What the heck??? He was just messing around and boxing the recliner. But SINCE IT WAS TRENTON, he had to have hit the wooden part in the chair. Kids.......love them to death, but they sure are ALL boy!
So now I'm gonna try to post the only picture I have of him with it on. This blog thing is new for me, and not sure if I do it all right, but it will work somehow. He has to have the cast on for 1 month, then we go back from there. Sure he'll be done.....last time he broke his other arm they said he was a fast healer.
I've had lots of people ask how Trenton broke his hand....remember he had to go get a cast on the day of my surgery! Between him and his "injuries", and me and my health, we are keeping the medical people in business!!! ha ha ha!!
Anyways, he had hurt his arm I think the Friday morning before in the kitchen. I thought he said he was just swinging it around and bashed it on the side of one of our very heavy oak kitchen chairs. We were getting ready for school (and we've always made the boys be tough), so I just said hurry up, you'll be fine.
Nope a few hours later school calls. Trenton wasn't crying or anything, but the side of his hand was swollen and she said it was looking green. Sigh.....went to get him, figured it did look oddly swollen so I better take him in. Sure enough, it was broke. The doctor (or whoever) said it looked like a boxer break. Yeah, whatever......I really was dealing with anxiety over the surgery, and he was alive and fine and not crying or anything. We were told he had to wait until Monday to cast it because of the swelling. (yep, I wasn't pulling the greatest concerned mommy that day..............not like I haven't had it a ton with him before....sorry bud!!) Later at dinner we were asking him again how he hurt it. He got up and showed us that he hit the back of the recliner chair.....just like he was punching it!!!! UGH!!! What the heck??? He was just messing around and boxing the recliner. But SINCE IT WAS TRENTON, he had to have hit the wooden part in the chair. Kids.......love them to death, but they sure are ALL boy!
So now I'm gonna try to post the only picture I have of him with it on. This blog thing is new for me, and not sure if I do it all right, but it will work somehow. He has to have the cast on for 1 month, then we go back from there. Sure he'll be done.....last time he broke his other arm they said he was a fast healer.
Oh, I seen this picture too in my files and had to add it. It was my favorite for my Christmas cards last year. It even had a good picture of our dog Chevy with them. We lost Chevy in June due to cancer. I still miss her so much. We got her as a puppy when I was 6 months pregnant for Nelson. She was a actually a good dog..............also, Trenton's best friend. (o.k.,gotta stop now, can't see due to crying.........miss you Chevy dog!!!!)
Hugs to everyone and thank you all!
With lots of love from the Sanford Family!!!
Up and Down.....HERE WE GO!!
Well, not sure how else to title it, but on Friday I was on cloud 9. Things were up. Of course that was the greatest situation I've had since being home from this surgery. I've been told by every doctor and other AN people that you need to take it hour by hour.
Well, of course I got up Saturday and felt like I had been ran over. My head felt so swollen and so heavy, the pressure was crazy! Felt like I couldn't hear at all, and my face paralysis felt like a solid brick. I'm finally learning how serious and what they meant by no bending. If I bend only about a 45 degree angle I can feel a rush of pressure going to my head. (not sure if that is normal for everyone with this surgery, or just because when we went to ER a week ago they said my swelling was pretty 'full' still). Or possibly if it is from whatever else is causing my spinal pain.
Of course I have the MRI tomorrow (and NO I can't give you info then, ya know they never tell ya anything), and I have a nice list of questions for when we go to the doctor on Friday. I will probably have to get a copy of the MRI CD to take with me to the doctor like I always have before..............well, OF COURSE I'm gonna peak at it :-) It won't have the report done right away, but I can see what my brain now looks like. interesting! My boys think those CDs are cool! We even got to point out the "rocks in my head" before. hahaha......there for sure better be one less rock!!
O.K., now for the UP NEWS!!! Of course I'm still not sleeping much due to the steroids. I was up when Neil got up for work. I told him I felt different, almost normal for awhile. I had no pressure, and the tinnitus (ringing and noises in the ear) were very light. So, I had him come talk to me in my bad ear while plugging the good one tight. I could just barely hear him. SO then we played that game again like I did with Nelson. ;-)
As Neil was leaving for work I told him to call me from his work cell and I wanted to know if I could here on the bad ear at all (I keep answering the phone on that ear on accident, and it sounds dead like no one is there.....oops) SO, sure enough her called and I could hear him a very tiny bit. Then I took our phone and turned up the hearing volume (it's always on the lowest because it's a loud volume phone). HOLY COW!!!! I could make out what he was saying!!! Sounded like he was whispering, but at least I heard!!!
Now that made it time for the HAPPY DANCE!!!!!! Yah, I don't know what else to say!!! If you've ever been in a situation like this, you get it.
I've noticed I've had a ton of e-mails and positive responses to my blog posts. I'm wondering if it might be good for ANers to post on here. I started this blog just to let people know how the surgery went, etc. BUT, since I've ended up having all kinds of ildssues I'm using it more like a journal and my emotional outing. Knowing someday (in accordance to some e-mails I've gotten..........already) that maybe my blog will be helpful for others to read or follow or give hope. I kept asking Neil how much they told us what all we may go through, but of course I guess I was just thinking, nahhhh, I'll be one of the lucky ones. WELL, I've had every single thing that can go down except for the 2 more life threatening ones (bacterial menengitis, CSF leak). Still doesn't mean I'm out of the woods for those. Just also thought I'd be one that was feeling great by 3 weeks. NOT....tomorrow is 3 weeks. Of course, we all have to remember that I've had additional stuff that has flaired up, like the pain we are not positive what is causing it (that's why full MRI tomorrow), had nice allergic reaction to a pain medicine, AND I got thrush....it went away and came back again!!! ugh!
I basically am trying to do NOTHING! I've noticed that everything seems to feel better when I'm sitting straight up mostly, no noises (unless one thing at a time), take my valium like I was told would help, and NO bending at all! I will probably list another day soon what all side effects there are and put in my notes.
For now this is enough. Also when I started this goofy blog I was thinking of doing it for fun too. To be able to put up pictures of fun things, my family, my crafts....something. Well, I am gonna do one now.
Please keep them prayers coming! And THANK YOU ALL for everything!! I'm amazed how loaded my e-mail box is. Do leave comments here to though if it might be something helpful for other ANer's...thanks
Well, of course I got up Saturday and felt like I had been ran over. My head felt so swollen and so heavy, the pressure was crazy! Felt like I couldn't hear at all, and my face paralysis felt like a solid brick. I'm finally learning how serious and what they meant by no bending. If I bend only about a 45 degree angle I can feel a rush of pressure going to my head. (not sure if that is normal for everyone with this surgery, or just because when we went to ER a week ago they said my swelling was pretty 'full' still). Or possibly if it is from whatever else is causing my spinal pain.
Of course I have the MRI tomorrow (and NO I can't give you info then, ya know they never tell ya anything), and I have a nice list of questions for when we go to the doctor on Friday. I will probably have to get a copy of the MRI CD to take with me to the doctor like I always have before..............well, OF COURSE I'm gonna peak at it :-) It won't have the report done right away, but I can see what my brain now looks like. interesting! My boys think those CDs are cool! We even got to point out the "rocks in my head" before. hahaha......there for sure better be one less rock!!
O.K., now for the UP NEWS!!! Of course I'm still not sleeping much due to the steroids. I was up when Neil got up for work. I told him I felt different, almost normal for awhile. I had no pressure, and the tinnitus (ringing and noises in the ear) were very light. So, I had him come talk to me in my bad ear while plugging the good one tight. I could just barely hear him. SO then we played that game again like I did with Nelson. ;-)
As Neil was leaving for work I told him to call me from his work cell and I wanted to know if I could here on the bad ear at all (I keep answering the phone on that ear on accident, and it sounds dead like no one is there.....oops) SO, sure enough her called and I could hear him a very tiny bit. Then I took our phone and turned up the hearing volume (it's always on the lowest because it's a loud volume phone). HOLY COW!!!! I could make out what he was saying!!! Sounded like he was whispering, but at least I heard!!!
Now that made it time for the HAPPY DANCE!!!!!! Yah, I don't know what else to say!!! If you've ever been in a situation like this, you get it.
I've noticed I've had a ton of e-mails and positive responses to my blog posts. I'm wondering if it might be good for ANers to post on here. I started this blog just to let people know how the surgery went, etc. BUT, since I've ended up having all kinds of ildssues I'm using it more like a journal and my emotional outing. Knowing someday (in accordance to some e-mails I've gotten..........already) that maybe my blog will be helpful for others to read or follow or give hope. I kept asking Neil how much they told us what all we may go through, but of course I guess I was just thinking, nahhhh, I'll be one of the lucky ones. WELL, I've had every single thing that can go down except for the 2 more life threatening ones (bacterial menengitis, CSF leak). Still doesn't mean I'm out of the woods for those. Just also thought I'd be one that was feeling great by 3 weeks. NOT....tomorrow is 3 weeks. Of course, we all have to remember that I've had additional stuff that has flaired up, like the pain we are not positive what is causing it (that's why full MRI tomorrow), had nice allergic reaction to a pain medicine, AND I got thrush....it went away and came back again!!! ugh!
I basically am trying to do NOTHING! I've noticed that everything seems to feel better when I'm sitting straight up mostly, no noises (unless one thing at a time), take my valium like I was told would help, and NO bending at all! I will probably list another day soon what all side effects there are and put in my notes.
For now this is enough. Also when I started this goofy blog I was thinking of doing it for fun too. To be able to put up pictures of fun things, my family, my crafts....something. Well, I am gonna do one now.
Please keep them prayers coming! And THANK YOU ALL for everything!! I'm amazed how loaded my e-mail box is. Do leave comments here to though if it might be something helpful for other ANer's...thanks
Friday, November 27, 2009
GREAT NEWS!!!!!!!!!!
Parts of my body are truly alive :-) (Not sure how else to put it)
I have been doing very very good trying to take care of myself. Today I didn't do any body exercises for my legs and back stretching, etc. (I noticed when doing some of those things I feel extra pressure in the head.............even too hard of a walk has an impact of pressure in my head, all due to the extra swelling of the brain they determined last Friday). I was lucky enough that one of my darling sister in laws took both the boys, so I had lots of quiet time, yipeee!
I have been having the issues with the eye stuff and seemed like nothing was helping me out. When Neil came home on lunch we ran to the eye doctor looking for options. She said my eye was VERY dried already and to use ointment for the whole day. Then, I got that interesting little glasses cover. (I LOVE the way it works to keep the eye covered if trying to focus on something.....and it keeps the air from it..........oh, and it doesn't go anywhere near the eye to scratch or harm the cornea)
So, that's just part of it. Today is the first day that I got along without hardly any pain/inflammation feeling. Then it was like I was hearing something odd. Everything was quiet and I plugged my good ear tightly and had Nelson tell me a little story standing next to me in his regular voice.....(I HEARD IT ALL!!!!!!!!!!) Of course it wasn't fully or perfect, but I could understand it. So excited. It's just hard not knowing, but now I DO know the possiblity is truly there!!!!!!!!!! Yeah, yeah, yeah!!!!
I have been told many times by the doctors and other ANers that I need to take it hour by hour, and I understand that now. BUT, at least now I am HAPPY!!! I know I can still go backwards, up and down, BUT at least now I have a little more hope (and less worry). God granted my prayer just to give me a clue....THANK YOU!! Our prayers are working!! For those who are not ANers, this doesn't mean every day gets better, it just means there is the hope of more recovery.
So happy right now, I had to shout it out to the world, and spend some time with the Lord for thanking him for some kind of sign!!!
This journey can be a long one, and lots of ANers have that 2 steps forward, one step back..........well, I've actually been thinking I was totally opposite, but not now! I think I'm on my way! (just too bad I had it in my head that it was all gonna be easier, what was I thinking.......plus having a few other issues affecting don't help)
O,K., taking it day by day and praying it continues to get better. Looking forward to my MRI on Monday still and hopefully that comes up nothing important. I'd just love for them to say I need a good massage to help deal with the pains I'm having.
Gee, it's gonna be even harder to sleep tonight................I'm so excited!!!!
Thank you everyone for prayers and thoughts and everything else. This situation has been a trying time and this was the first of positive things I've had and it's about 3 weeks!!!
Keep on praying!!!
Denise and family!!
I have been doing very very good trying to take care of myself. Today I didn't do any body exercises for my legs and back stretching, etc. (I noticed when doing some of those things I feel extra pressure in the head.............even too hard of a walk has an impact of pressure in my head, all due to the extra swelling of the brain they determined last Friday). I was lucky enough that one of my darling sister in laws took both the boys, so I had lots of quiet time, yipeee!
I have been having the issues with the eye stuff and seemed like nothing was helping me out. When Neil came home on lunch we ran to the eye doctor looking for options. She said my eye was VERY dried already and to use ointment for the whole day. Then, I got that interesting little glasses cover. (I LOVE the way it works to keep the eye covered if trying to focus on something.....and it keeps the air from it..........oh, and it doesn't go anywhere near the eye to scratch or harm the cornea)
So, that's just part of it. Today is the first day that I got along without hardly any pain/inflammation feeling. Then it was like I was hearing something odd. Everything was quiet and I plugged my good ear tightly and had Nelson tell me a little story standing next to me in his regular voice.....(I HEARD IT ALL!!!!!!!!!!) Of course it wasn't fully or perfect, but I could understand it. So excited. It's just hard not knowing, but now I DO know the possiblity is truly there!!!!!!!!!! Yeah, yeah, yeah!!!!
I have been told many times by the doctors and other ANers that I need to take it hour by hour, and I understand that now. BUT, at least now I am HAPPY!!! I know I can still go backwards, up and down, BUT at least now I have a little more hope (and less worry). God granted my prayer just to give me a clue....THANK YOU!! Our prayers are working!! For those who are not ANers, this doesn't mean every day gets better, it just means there is the hope of more recovery.
So happy right now, I had to shout it out to the world, and spend some time with the Lord for thanking him for some kind of sign!!!
This journey can be a long one, and lots of ANers have that 2 steps forward, one step back..........well, I've actually been thinking I was totally opposite, but not now! I think I'm on my way! (just too bad I had it in my head that it was all gonna be easier, what was I thinking.......plus having a few other issues affecting don't help)
O,K., taking it day by day and praying it continues to get better. Looking forward to my MRI on Monday still and hopefully that comes up nothing important. I'd just love for them to say I need a good massage to help deal with the pains I'm having.
Gee, it's gonna be even harder to sleep tonight................I'm so excited!!!!
Thank you everyone for prayers and thoughts and everything else. This situation has been a trying time and this was the first of positive things I've had and it's about 3 weeks!!!
Keep on praying!!!
New Eye Covers
Here are a couple pictures of things I got for eye covers. Since my eye won't close on its own, and taping it hurts my skin I tried a few other things. I got the clear patch from the doctor which is nice for keeping in the lubrication, and can be used in the shower to keep shampoo out of my eyes. But, most patches are to big to wear under my glasses. So today I asked at the eye doctors office and they said to try this little material thing. Cute :-) It's actually for kids, but it fit over my glasses perfectly and it can be trimmed if needed. Well it works out great for keeping the bad eye dark so my good eye has total & clear focus. The fabric doesn't touch the eye at all, so I don't need to worry about it scratching the cornea. Gee, I thought it was a unique idea compared to all the things I've found so far. I could make my own and even do them in different colors or holiday, etc. I usually only need it covered dark when trying to focus clearly with the other eye (like when on the computer, tv, etc.) It also can go down the sides and helps protect it from air. Interesting hey???
Protecting the eyes is a very important thing to due with this facial paralysis. The eyelid won't close, and dries out fast and can get the cornea injured. Even though I've only had this paralysis thing about 1 1/2 weeks, the dry eye and not closing hurts fast. This morning I forgot it wasn't closed and got shampoo rinsed in it. Ouch!! I've researched on the eye patches, covers and weight things too, but nothing seemed as comfortable.
Today has been a good day! My speech has been better and the only time I've had the pressure in my head is when I bent over putting clothes in the drier. Need to be more careful!
Fellow ANers, let me know what ya think.....through my searching, I found nothing like this. And it came from my eye doctors office. She said just to be sure to wear plenty of lube under it. Of course I will. I think I like the looks of this better than the pirate patch.
Thursday, November 26, 2009
More info.
Sorry that some people may not like the pictures. I decided to post them for helping out fellow future AN patience that may be wondering things. Also my e-mail is listed if anyone wants to chat.
I'm having my share of issues, but hope to get some answers by the end of next week.
Hope all had a HappyThanksgiving! I had a nice plate brought home to me, and got a bit of sleep while they were gone. The one thing I am truly additionally Thankful for this year is finding the Acoustic Neuroma association forum/support. Thanks guys so much!!
Denise
I'm having my share of issues, but hope to get some answers by the end of next week.
Hope all had a HappyThanksgiving! I had a nice plate brought home to me, and got a bit of sleep while they were gone. The one thing I am truly additionally Thankful for this year is finding the Acoustic Neuroma association forum/support. Thanks guys so much!!
Denise
Some Pictures from the Middle Cranial Fossa approach, and Delayed onset of facial Paralysis!
Day 3 face, neck, eye swelling............
...............Later day 3 removed bandage
4th day eye swelling down............
............neck, head, and no paralysis
2 weeks stitches removed, scar..........
.............my nice thick hair covers the scar
other view of scar at 2 weeks.........
.....................Delayed Onset of Facial Paralysis, raising eyebrows
2.5 weeks biggest smile..............
.....................and scrunching face
Big smile with eye patch on, need to keep eye lubricated because it won't close
The paralysis should be temporary, but not sure how long. Follow up appointment
in Detroit next Friday!
...............Later day 3 removed bandage
4th day eye swelling down............
............neck, head, and no paralysis
2 weeks stitches removed, scar..........
.............my nice thick hair covers the scar
other view of scar at 2 weeks.........
.....................Delayed Onset of Facial Paralysis, raising eyebrows
2.5 weeks biggest smile..............
.....................and scrunching face
Big smile with eye patch on, need to keep eye lubricated because it won't close
The paralysis should be temporary, but not sure how long. Follow up appointment
in Detroit next Friday!
Hit the Bottom
Well, this whole experience has been putting me through a lot. I know a lot of the fellow ANer's understand and have gone through some of the same. I truly had all the positive thoughts that things were gonna turn out just great. Instead, seems like I've been getting plenty of the surgery side effects and in addition other health things. I didn't really want this blog to turn into some sob story, but for me it truly helps me with emotions being able to journal it and have additional support. Thank you, and sorry to be a ?????
We were reviewing a lot of the stuff from post surgery tonight and it is so hard not knowing any answers. I had felt so good when leaving the hospital, but after being home a few days, everything started going down hill. The pain was my 1st issue, and got some things started to find out what is going on.
Then, I got that lovely Delayed onset of Facial Paralysis, and the bit of swelling in the brain still. The facial paraylsis is dealing with that whole left side of my face. It causes issues to the eye too because it won't close, so I'm round the clock dealing with eye stuff. Seems like we've already spent a fortune in eye drops, ointments, etc. trying to see what works the best. Then, the facial paralysis has caused the swellling, etc. and nerves by my left side of nose are swollen inside. Well, I have a deviated septum that with that combo ends up blocking off the breathing there. sigh.... We also thought I originally had my hearing preserved, but it to isn't working and sometimes feels like there is a heavy rock in that part of my head. The tinnitus, which is the ear noises, seem to be getting worse also. I can't stand multiple noises right now. Too much can give me headache and make me feel nauseous.
Do have to say though that the eye sight has been back good and normal overall. Due to the dry eye and the lid not closing on the left side, I need to block it off and keep it moist. At least I don't have the double vision and spins anymore. I also seem to have a pretty good balance back overall. I've been told I walk a little crooked once in awhile, but that is getting better too. The sleep is still very on & off, but it's not like I need to be anywhere (or like I could stand it much anyways), so I get the rest as soon as I need it.
Sorry for what sounds to be negative, I really hate to be that way. I've had many comment on me being strong, but last evening I hit the bottom again. Neil is there for me and I am very thankful. I've also got lots of family and friends helping out with the kids, etc. With it being 1/2 days of school and the holiday long weekend and Neil working, I've actuall asked people to help out with the boys (something we don't usually do). But I want them to be still having a nice time and not stuck here with me wanting the quite time, etc.
Being Thanksgiving day, I want to wish you all a Happy one! I want to let everyone know how THANKFUL I am for everything. I also want to put out a super, big, special THANKS to the helpful members of the ANA forum/support site. You guys have been through a lot of it too and understand.
Have a nice day! And even though I'm gonna spend my Thanksgiving alone (which I NEED to do), I am very Thankful to the Lord for all of the wonderful people and things he has sent my way! For the rest of you, please be sure he too is on the top of your list!
Love, Denise
P.S. Please don't take this to negative, it is helping me with my emotional part of this crazy journey!!
We were reviewing a lot of the stuff from post surgery tonight and it is so hard not knowing any answers. I had felt so good when leaving the hospital, but after being home a few days, everything started going down hill. The pain was my 1st issue, and got some things started to find out what is going on.
Then, I got that lovely Delayed onset of Facial Paralysis, and the bit of swelling in the brain still. The facial paraylsis is dealing with that whole left side of my face. It causes issues to the eye too because it won't close, so I'm round the clock dealing with eye stuff. Seems like we've already spent a fortune in eye drops, ointments, etc. trying to see what works the best. Then, the facial paralysis has caused the swellling, etc. and nerves by my left side of nose are swollen inside. Well, I have a deviated septum that with that combo ends up blocking off the breathing there. sigh.... We also thought I originally had my hearing preserved, but it to isn't working and sometimes feels like there is a heavy rock in that part of my head. The tinnitus, which is the ear noises, seem to be getting worse also. I can't stand multiple noises right now. Too much can give me headache and make me feel nauseous.
Do have to say though that the eye sight has been back good and normal overall. Due to the dry eye and the lid not closing on the left side, I need to block it off and keep it moist. At least I don't have the double vision and spins anymore. I also seem to have a pretty good balance back overall. I've been told I walk a little crooked once in awhile, but that is getting better too. The sleep is still very on & off, but it's not like I need to be anywhere (or like I could stand it much anyways), so I get the rest as soon as I need it.
Sorry for what sounds to be negative, I really hate to be that way. I've had many comment on me being strong, but last evening I hit the bottom again. Neil is there for me and I am very thankful. I've also got lots of family and friends helping out with the kids, etc. With it being 1/2 days of school and the holiday long weekend and Neil working, I've actuall asked people to help out with the boys (something we don't usually do). But I want them to be still having a nice time and not stuck here with me wanting the quite time, etc.
Being Thanksgiving day, I want to wish you all a Happy one! I want to let everyone know how THANKFUL I am for everything. I also want to put out a super, big, special THANKS to the helpful members of the ANA forum/support site. You guys have been through a lot of it too and understand.
Have a nice day! And even though I'm gonna spend my Thanksgiving alone (which I NEED to do), I am very Thankful to the Lord for all of the wonderful people and things he has sent my way! For the rest of you, please be sure he too is on the top of your list!
P.S. Please don't take this to negative, it is helping me with my emotional part of this crazy journey!!
Wednesday, November 25, 2009
Loose screws udate
For the fellow ANers, Mike from Loose screws updated his blog too. He TOO got the delayed facial stuff now too. Hopefully we'll all be doing well soon!
Feeling Better, update
Well, I think the steroids and pain meds threw me so off that I only slept a few hours over the weekend and then I got external swelling of the muscles in my face. It felt like a snake was under my skin moving in my face. I totally freaked out so went back up to ER Monday morning. Luckily Dr. Koxk was there again and he checked me over good and spoke with my surgeon in Detroit. Ended up I was having major muscle inflamation again and of course a nice anxiety issue. He did some mutliple points of something like massage or something and helped relax the inflamation, etc. The doctors spoke again and then Dr. Koxk actually called my family dr. They decided to believe it is still something going wrong with my body that isn't from the AN tumor or cranial surgery overall, but the long length of being on the table flaired things up in my entire spine and muscles.
They decided to keep me on a pain medicine because it was working the pain, but needed something for muscles to relax, anxiety, and major insomnia. They gave me Valium and set me up with family doctor to get some tests going, etc.
Wow, that Valium is great......just what I needed. It helped the muscle tension, but also let my mind rest so I stopped feeling like I was dying or something terrible. Also, the best was that it let me relax enough to fall asleep. AHhhh, how nice. Went to doctor appointment and he got me scheduled for MRI on Monday that actually goes all the way from Brain down to bottom of spine. They want to check to see what is causing the pains throughtout my spine. Assuming something has been going on with that area because I have actually had back and neck issues since I was in labor for Nelson.
Also heard from another ANer about something called NF2 which is Neurofibromatosis type 2 and can be characterized by benign tumors that can grow along brain and spinal nerves. I called the doctor to ask about this and was told yes it is a possibility too, but it is more rare. BUT, that too is part why they decided to run the full MRI. I was also told it is just possible the pains I'm having in my lower spinal area may be from a bit of blood leaking into the spinal fluid during surgery. Between 3 doctors descisions, they all agreed to run tests to check for other stuff. If it is the blood in the fluid, it will be healing on its own soon.
Wow, sure have had quite some adventures, hey??? As for my actually healing related to the AN surgery, I am moving along well. Only 2 weeks post op my balance is really good. Still have that delayed swelling in my brain some or whatever causes the paralyzed part. Need to keep my eye moistened with gel and been told I can leave it covered and focus with my right eye that is totally normal now. The inscision is looking great....my hair is so thick, dark and perfect length of hair cut that you can't even tell I had anything cut open. Hopefully each day the paralyze part will get better. I've been told by all doctors and family memebers to rest. Even though I felt fine to talk, it does take that other side of the brain to do extra work, and the jaw muscle that was cut gets working too hard too. OOPS, didn't think of that. Lost the hearing in the left side too, but they think it will come back one swelling is down. Been told it can change hour by hour and mainly has to do with how fatigued my body is. O.K., I get it, I'm resting well, and doing what I'm supposed to!! Noises.....well, I can only handle like a conversation and not much secondary noise yet. Been told that too is normal and will get better, we'll see.
O.K., enough for now again.
They decided to keep me on a pain medicine because it was working the pain, but needed something for muscles to relax, anxiety, and major insomnia. They gave me Valium and set me up with family doctor to get some tests going, etc.
Wow, that Valium is great......just what I needed. It helped the muscle tension, but also let my mind rest so I stopped feeling like I was dying or something terrible. Also, the best was that it let me relax enough to fall asleep. AHhhh, how nice. Went to doctor appointment and he got me scheduled for MRI on Monday that actually goes all the way from Brain down to bottom of spine. They want to check to see what is causing the pains throughtout my spine. Assuming something has been going on with that area because I have actually had back and neck issues since I was in labor for Nelson.
Also heard from another ANer about something called NF2 which is Neurofibromatosis type 2 and can be characterized by benign tumors that can grow along brain and spinal nerves. I called the doctor to ask about this and was told yes it is a possibility too, but it is more rare. BUT, that too is part why they decided to run the full MRI. I was also told it is just possible the pains I'm having in my lower spinal area may be from a bit of blood leaking into the spinal fluid during surgery. Between 3 doctors descisions, they all agreed to run tests to check for other stuff. If it is the blood in the fluid, it will be healing on its own soon.
Wow, sure have had quite some adventures, hey??? As for my actually healing related to the AN surgery, I am moving along well. Only 2 weeks post op my balance is really good. Still have that delayed swelling in my brain some or whatever causes the paralyzed part. Need to keep my eye moistened with gel and been told I can leave it covered and focus with my right eye that is totally normal now. The inscision is looking great....my hair is so thick, dark and perfect length of hair cut that you can't even tell I had anything cut open. Hopefully each day the paralyze part will get better. I've been told by all doctors and family memebers to rest. Even though I felt fine to talk, it does take that other side of the brain to do extra work, and the jaw muscle that was cut gets working too hard too. OOPS, didn't think of that. Lost the hearing in the left side too, but they think it will come back one swelling is down. Been told it can change hour by hour and mainly has to do with how fatigued my body is. O.K., I get it, I'm resting well, and doing what I'm supposed to!! Noises.....well, I can only handle like a conversation and not much secondary noise yet. Been told that too is normal and will get better, we'll see.
O.K., enough for now again.
Sunday, November 22, 2009
Well it's me!
Don't know where to start, and this one will be long. I can finally see out one eye totally clear while wearing a p atch over other bad eye. The spinning stuff is going away, yeah! But to start I did end up backwards again and ended up in ER here on Friday....here we go:
For fellow ANers, there have been new studies showing that people being on the steroids and anti-virus medicne after surgery for a longer period were at higher risks for the cerebrospinal fluid leaks and bacterial meningitis and seems like something else. Since those are some of the scary life threatening side effects, many doctors (which include mine) are limiting the use of the drugs. So, I ended up on steroids for only 2 or 3 days in the hospital. No anti-virus med for the shingles/herpes stuff either. Well, I did research and found the study on that and it was about 5% difference. Yes, I would prefer to not take medicines that may increase my risk of issues, BUT...........unlucky me ended up not healing properly on my own.
So, when the delayed facial paralysis started, they started me on steroids. So, things were looking up after seeing him Wednesday. I had also commented my back of my legs to the lowest part of my back (more pelvic area hurt). He told me to go ahead and take pain med every 4-6 hours to stay ahead of the pain and it was probably just from being on table so long, etc. WELL, Thursday morning I woke up with a rash and felt so run down. It ended up being a drug allergy reaction. So we decided to quit the pain medicine and just do regular Tylenol over the counter.......thought the pain was O.K. and I'd be fine.
Well, NO (of course not....what else can go wrong). I ended up in such severe pain Thursday night, I was a huge mess. I found out in the morning Nelson heard me crying in pain and making noises and trying to take a hot bath at 4 am. It was getting worse and I told Neil to leave for work, but I'd be calling the doctor 1st thing when they opened to ask what to do and possibly what was causing the pain so bad. My boys are so AWESOME, they were available to help me out if I needed. I found that I laid hunched over like a cat position and not move even 1/2" I didn't have the pain as bad. Lovely hey?
**By the way, I LOVE my neurotologist Dr. Zappia from MEI....he has spoke with us everyday and takes the call right away and has called to check in on me. None of the issues were wrong from him, it was my stupid body and the way it responds.
SO, Friday I called down to MEI in Detroit and the nurse got doctor to call me right away. He said he was so sad I was in so much pain, and so hard that we live far away. We decided to try to go to our ER and hopefully they would call him and work with him to find out what's going on. Well, they did. Dr. Kokx and a nurse Sherry were awesome!! Although they were a little lost because you could tell they haven't done much dealing with brain surgery patients.
They started by wanting to make sure my leg pain wasn't blood clots in my legs. They also had to run a brain/head catscan to try to make sure there wasn't bleeding going on. Well, no blood clots, but they ended up giving me stuff stronger than morphine for pain and within 5 minutes I felt GREAT.....something was going on with pain. They did a bunch of labs and all came back fine. The discussed with me some of my history of previous back or neck aches. They also spoke with Dr. Zappia and went over everything and determined that I have some major nerve issues in my back and they flaired up probably while laying in the surgery and at the hospital. So, that is why when at the hospital and on different pain meds, I felt GREAT by my 3rd day (except for I had a week of some good short term mermory loss....possibly due to anesthesia. So, now this stupid area of my body flaied up because I went off pain med because of allergic reaction..........ugh, thought I was fine. It truley is going hour by hour for me!
The cat scan did come back with some swelling, but it sounds like it wasn't anything to abnormal and they are supposed to have sent the CD's righ to Zappia in Detroit to go over. But I was told the paralysis came from the delayed reaction of swelling. They gave me some shots of steroids in hospital and sent me home with a different, stronger prescription of steroids for the swelling, so hopefully things start to clear up and they are...will post more later too. They also gave me high dose of a different kind of pain meds. and said to take every 4 hours no matter what and get a total MRI from neck and entire spine to see what the pain area is for sure ....possibly dual sciatic nerves, but they are not sure. Why they wouldn't just run the stupid tests....well I'm sure it's because the pain medicine made me feel good and they got very busy. (yep, that's my luck.....get one thing over with and move on to another.....sigh!) Hey, at least my deductible has been met :-)
Wow, I know that's a lot, but I sure have had a lot of crap and like Neil said 2 steps forward, 1 step back, well, I felt it was opposite. Anyways this new pain med is awesome and I'm feeling so good. No rash, thankfully!! My kids were looking at me yesterday morning like what the heck happened, I felt like dancing!! Just crazy! So, now that my body isn't addressing this severe pain, the brain and skull should start to focus on healing right now.
Need to take it one hour at time. The steroids throw in so much insomnia and throw off the sleep, so I need to be able to rest at whatever minute I need. I am fine talking on the phone, while resting and closing my eyes, but company needs to be limited, not sure when I might sleep. I do turn ringer off on phone if sleeping, so don't hesitate to call.
Tomorrow I am gonna start by calling my family doctor to see about getting MRI's started or get me a good refferal to a neurosurgeon that does brain (because of still having my other brain tumor) and does total spine down to sciatic nerves. The neurosurgeron who did my surgery in Novi is great, but don't do as much spine and I HATE driving that far. SO if anyone knows of good neurosurgeon to point me at, let me know please a.s.a.p. so I can make some calls to see who does it all. My neurotologist and people at ER said there will be good ones down in GR, that's no as bad.
O.K., enough for now. I actually need to be careful so I'm no puttig stress on my eyes, etc. So I'm supposed to limit my time. Listening to books on CD (thanks cousing Sharon Peterson for getting me some) and resting and doing little things and going for walks and stretches, etc. My balance seems pretty o.k. right now, and my eye sight has improved too, so going the right way. I had some hearing while in the hospital so they figured my hearing was still intact. Well now due to the delayed paralysis and swelling I don't have it. Hopefully when the swelling is gone, the hearing will come back with my better eye stuff, etc. I am having noise issues, and hopefully that will get better while the swelling goes down too.
I can't say thank you enough to EVERYONE! Just keep praying that it is getting better. There was NOTHING that my surgeons did wrong or anything. As far as the tumor surgery went, it was all great, the doctors did a great job!! It was all my stupid bod that had to go and throw things off......sigh again.
I will leave it now and post more later.
Love DENISE
For fellow ANers, there have been new studies showing that people being on the steroids and anti-virus medicne after surgery for a longer period were at higher risks for the cerebrospinal fluid leaks and bacterial meningitis and seems like something else. Since those are some of the scary life threatening side effects, many doctors (which include mine) are limiting the use of the drugs. So, I ended up on steroids for only 2 or 3 days in the hospital. No anti-virus med for the shingles/herpes stuff either. Well, I did research and found the study on that and it was about 5% difference. Yes, I would prefer to not take medicines that may increase my risk of issues, BUT...........unlucky me ended up not healing properly on my own.
So, when the delayed facial paralysis started, they started me on steroids. So, things were looking up after seeing him Wednesday. I had also commented my back of my legs to the lowest part of my back (more pelvic area hurt). He told me to go ahead and take pain med every 4-6 hours to stay ahead of the pain and it was probably just from being on table so long, etc. WELL, Thursday morning I woke up with a rash and felt so run down. It ended up being a drug allergy reaction. So we decided to quit the pain medicine and just do regular Tylenol over the counter.......thought the pain was O.K. and I'd be fine.
Well, NO (of course not....what else can go wrong). I ended up in such severe pain Thursday night, I was a huge mess. I found out in the morning Nelson heard me crying in pain and making noises and trying to take a hot bath at 4 am. It was getting worse and I told Neil to leave for work, but I'd be calling the doctor 1st thing when they opened to ask what to do and possibly what was causing the pain so bad. My boys are so AWESOME, they were available to help me out if I needed. I found that I laid hunched over like a cat position and not move even 1/2" I didn't have the pain as bad. Lovely hey?
**By the way, I LOVE my neurotologist Dr. Zappia from MEI....he has spoke with us everyday and takes the call right away and has called to check in on me. None of the issues were wrong from him, it was my stupid body and the way it responds.
SO, Friday I called down to MEI in Detroit and the nurse got doctor to call me right away. He said he was so sad I was in so much pain, and so hard that we live far away. We decided to try to go to our ER and hopefully they would call him and work with him to find out what's going on. Well, they did. Dr. Kokx and a nurse Sherry were awesome!! Although they were a little lost because you could tell they haven't done much dealing with brain surgery patients.
They started by wanting to make sure my leg pain wasn't blood clots in my legs. They also had to run a brain/head catscan to try to make sure there wasn't bleeding going on. Well, no blood clots, but they ended up giving me stuff stronger than morphine for pain and within 5 minutes I felt GREAT.....something was going on with pain. They did a bunch of labs and all came back fine. The discussed with me some of my history of previous back or neck aches. They also spoke with Dr. Zappia and went over everything and determined that I have some major nerve issues in my back and they flaired up probably while laying in the surgery and at the hospital. So, that is why when at the hospital and on different pain meds, I felt GREAT by my 3rd day (except for I had a week of some good short term mermory loss....possibly due to anesthesia. So, now this stupid area of my body flaied up because I went off pain med because of allergic reaction..........ugh, thought I was fine. It truley is going hour by hour for me!
The cat scan did come back with some swelling, but it sounds like it wasn't anything to abnormal and they are supposed to have sent the CD's righ to Zappia in Detroit to go over. But I was told the paralysis came from the delayed reaction of swelling. They gave me some shots of steroids in hospital and sent me home with a different, stronger prescription of steroids for the swelling, so hopefully things start to clear up and they are...will post more later too. They also gave me high dose of a different kind of pain meds. and said to take every 4 hours no matter what and get a total MRI from neck and entire spine to see what the pain area is for sure ....possibly dual sciatic nerves, but they are not sure. Why they wouldn't just run the stupid tests....well I'm sure it's because the pain medicine made me feel good and they got very busy. (yep, that's my luck.....get one thing over with and move on to another.....sigh!) Hey, at least my deductible has been met :-)
Wow, I know that's a lot, but I sure have had a lot of crap and like Neil said 2 steps forward, 1 step back, well, I felt it was opposite. Anyways this new pain med is awesome and I'm feeling so good. No rash, thankfully!! My kids were looking at me yesterday morning like what the heck happened, I felt like dancing!! Just crazy! So, now that my body isn't addressing this severe pain, the brain and skull should start to focus on healing right now.
Need to take it one hour at time. The steroids throw in so much insomnia and throw off the sleep, so I need to be able to rest at whatever minute I need. I am fine talking on the phone, while resting and closing my eyes, but company needs to be limited, not sure when I might sleep. I do turn ringer off on phone if sleeping, so don't hesitate to call.
Tomorrow I am gonna start by calling my family doctor to see about getting MRI's started or get me a good refferal to a neurosurgeon that does brain (because of still having my other brain tumor) and does total spine down to sciatic nerves. The neurosurgeron who did my surgery in Novi is great, but don't do as much spine and I HATE driving that far. SO if anyone knows of good neurosurgeon to point me at, let me know please a.s.a.p. so I can make some calls to see who does it all. My neurotologist and people at ER said there will be good ones down in GR, that's no as bad.
O.K., enough for now. I actually need to be careful so I'm no puttig stress on my eyes, etc. So I'm supposed to limit my time. Listening to books on CD (thanks cousing Sharon Peterson for getting me some) and resting and doing little things and going for walks and stretches, etc. My balance seems pretty o.k. right now, and my eye sight has improved too, so going the right way. I had some hearing while in the hospital so they figured my hearing was still intact. Well now due to the delayed paralysis and swelling I don't have it. Hopefully when the swelling is gone, the hearing will come back with my better eye stuff, etc. I am having noise issues, and hopefully that will get better while the swelling goes down too.
I can't say thank you enough to EVERYONE! Just keep praying that it is getting better. There was NOTHING that my surgeons did wrong or anything. As far as the tumor surgery went, it was all great, the doctors did a great job!! It was all my stupid bod that had to go and throw things off......sigh again.
I will leave it now and post more later.
Love DENISE
Wednesday, November 18, 2009
Denise's progress is going two steps forward one step back. Today we made a unexpected trip to Detroit to meet with Dr. On monday night her eye and mouth started losing movment by the middle of the night she had little to no control of the left side of her face. On tuesday we called the doctor in Detroit and explained what was going on. Dr prescibed steroids to help with swelling. Today seams like her talking might be improving. We meet with Dr he explained that there are two " different theories" on what cause's the delay with this lose of movement. The first is the facial nerve swells more after the surgery into a area called the tunnel. This causes the nerve to be compressed causing the loss of movment. The other theorie is some kind of virus that Dr didn't talk about much. But did say that also is treatable with meds. Were suposed to call Dr on friday to let him know if we can see any improvments. Denise can't see well enough to watch tv or play with computer, but she's still able to talk on the phone. So give her a call. Denise says thanks for all the thoughts , prays, cards and flowers. Neil & Denise
Sunday, November 15, 2009
Denise is'nt feeling up to any computer work yet so your still stuck with me. She's having some swelling on her head and neck, her vision is messed up,her hearing isn't there yet, and her mouth is still sore. But other than that were doing great. Thank you to everyone for cards, flowers, and meals. I'll post a update again tomorrow. Neil
Friday, November 13, 2009
Trenton is here telling me how to type now. So as you may have figured out we're back home. We left the hospital at about 10:30 am, Denise chose to lay on the back seat for the ride home. By 11:00am we had the Jeep gased up and we're getting on the freeway, and Denise was sleeping. She didn't wake up til Stoney Lake Rd . Stopped off in Hart at Mcd's for something cold to drink. Denise got a thrush infection from the antibiotics so on top of everything else her tongue and throat are sore and swollen. Everything aside doing very well. Glad to be home where we can sleep all night long not two hours at a time. Neil & Denise
Thursday, November 12, 2009
Well, here is how ugle the scar is. Ouch! I can't see the greatest without my glasses. As of right now I can't hear out of the easr, but it feels full....hopefully the swelling will go donw & it will hear.????? Ther, I got a quick note on here, THANK you EVERYONE for all of the comments, etc. Hopefully we can head home tomorrow! Love, Denise
It's 2:45 pm thursday Denise is moving around pretty well. We've been up down the halls and the stairs. She ate most of her breakfast and wanted a coke and small fri from McD's for lunch. The swelling in her face is going down good. Down into her neck that is. Dr. says that is normal should be better tomorrow. Hopfully tomorrow is day we get to go home. I don't think Denise will really enjoy the ride because the bright light and noises give her a headach. Thanks for all the cards and flowers! Neil and Denise
Wednesday, November 11, 2009
its 7:00 pm denise is still having neck pain she just said her face hurts too! Her eye is still pretty swollen and sore. She is now able to help me on my typing she just told me how to make capital letters. Denise is picking bugs out of her hair OH! I mean blood. Well were going for a walk before her dinner shows up. I'm sure by now Ty and Gracie know what color cast Trenton picked out. For the rest of you it,s black. Talk to you tomorrow Neil and Denise
hello friends its 9:45 wednesday denise has been up walking twice today. the swelling has gotten a little worse but the doc says that is normal the first 48 to 72 hrs she still has pain in her neck and head. but shes off all the monitors and ivs. shes taking only pills for pain and upset stomach. nurses are coming to get her up and moving about 10:00am. i guess we jumped the gun on walking on are own. talk to you later neil
Tuesday, November 10, 2009
me again 3:00 pm tuesday denise still sleeping alot but more alert when awake nurses are planning to get her up and moving by tonight. were going to be staying in the icu again tonight. the address here is 47601 grand river novi michigan 48374 rm# 528 i think by tomorrow denise might enjoy a card or 2. ill wait and see what tomorrow brings and possibly send out phone#. thanks for all the replys it gives me something to read neil
its 900am tuesday denises worsest pain is her neck some swelling on left side of face im sure she dont remember dr piper cming in lastnight but he did and whispered in her ear and she heard him her face movement is about 80% and shoud get better as swelling gos down shes really tired rite now last night was kind of rough lots of meds went in and lots of meds came out i think we may be moving to a different room soon so im waiting on sending home a room # til later today thanks for all the prayers
Monday, November 9, 2009
Sunday, November 8, 2009
SPECIAL THANKS
Well, we've arrived in Novi at the Staybridge Suites which is on the hospital campus. Nice!
I've been pretty hoarse and feeling blah. The doctor called and checked in. We are just going to check things out in the morning. Hopefully all goes off fine. I think it's just allergies anyways.
I want to THANK everyone for all of the support we have had. The support, well wishes and prayers for me, our family, the doctors and staff, have all been overwhelming. The cards have been awesome. Also we have received some very special gifts. My friends from Curves greatly suprised us with some money in a card. Boy, that was very overwhelming for Neil & I, we were at a loss for words. I have to say how much it was appreciated, because with the planning, I totally forgot about Neils meals for the week, our gas, and to stay in motel tonight. Also Neil will stay here while I'm in ICU, then he can stay in the private room with me :-) I also received special gifts from my women's bible study group and others from church. All such 'practical gifts' (boy, my mother in law knows me well!!!) Also, others from Curves made special gifts, one including the special Prayer Shawl from Marcies women's prayer group. Boy can I feel the extra support and loving prayers with that...IT's AWESOME, THANKS. (for my fellow ANers that know about the magic scarf.....knowing Dennis has it in California, well, know I have my own special thing...the shawl......see, you were right, it all works out somehow!!)
God Bless YOU ALL for all of your kindness!
With Love in many ways,
Denise
I've been pretty hoarse and feeling blah. The doctor called and checked in. We are just going to check things out in the morning. Hopefully all goes off fine. I think it's just allergies anyways.
I want to THANK everyone for all of the support we have had. The support, well wishes and prayers for me, our family, the doctors and staff, have all been overwhelming. The cards have been awesome. Also we have received some very special gifts. My friends from Curves greatly suprised us with some money in a card. Boy, that was very overwhelming for Neil & I, we were at a loss for words. I have to say how much it was appreciated, because with the planning, I totally forgot about Neils meals for the week, our gas, and to stay in motel tonight. Also Neil will stay here while I'm in ICU, then he can stay in the private room with me :-) I also received special gifts from my women's bible study group and others from church. All such 'practical gifts' (boy, my mother in law knows me well!!!) Also, others from Curves made special gifts, one including the special Prayer Shawl from Marcies women's prayer group. Boy can I feel the extra support and loving prayers with that...IT's AWESOME, THANKS. (for my fellow ANers that know about the magic scarf.....knowing Dennis has it in California, well, know I have my own special thing...the shawl......see, you were right, it all works out somehow!!)
God Bless YOU ALL for all of your kindness!
With Love in many ways,
Denise
Saturday, November 7, 2009
Surgery Place
Well for starters, I've had many tell me they don't know how to do or read a blog. Since mine hasn't been up long........start at the bottom and read up. (the bottom is the oldest post) The blogs are easy ways to keep in touch with many.....getting information to many at a time. And, I have totally found it to be a Mental escape & exercise for me :-)
SURGERY INFORMATION: (many have asked)
Monday morning 11/9/09, surgery at 7:30 a.m. (need to be there at 5:30, so Neil & I are staying night before)
At St. Johns Providence Park Hospital in Novi, MI
Neurosurgeon is Dr. Daniel Pieper
Neurotologist is Dr. John Zappia
Neil will be with me and my mom will stay here with the boys so they can stay in their normal schedule.
Sounds like I'm in ICU day of and day after surgery, there about 5 days total. Of course always depends on how things go. Recovery time seems very different for everyone depending on exactly where the tumor lies. I was told 3-4 weeks of no driving. I think that too all depends on how things go.
SURGERY INFORMATION: (many have asked)
Monday morning 11/9/09, surgery at 7:30 a.m. (need to be there at 5:30, so Neil & I are staying night before)
At St. Johns Providence Park Hospital in Novi, MI
Neurosurgeon is Dr. Daniel Pieper
Neurotologist is Dr. John Zappia
Neil will be with me and my mom will stay here with the boys so they can stay in their normal schedule.
Sounds like I'm in ICU day of and day after surgery, there about 5 days total. Of course always depends on how things go. Recovery time seems very different for everyone depending on exactly where the tumor lies. I was told 3-4 weeks of no driving. I think that too all depends on how things go.
Friday, November 6, 2009
Official Acoustic Neuroma Diagnosis
So, January 2, 2009 the ENT shows me multiple MRI pictures on CD's from multiple dates. Explains to me that this growth (or what looks to be like a small white rock) is called an Acoustic Neuroma aka AN (sometimes termed a Vestibular Schwannoma). It is a benign tumor that arises from the 8th cranial or vestibulo-cochlear nerve leading from the brain to the inner ear. The 8th nerve is actually 2 separate nerves, the vestibular (balance) and the cochlear (hearing). This nerve is associated with transmitting sound and sending balance information to the brain. This nerve along with the 7th cranial or facial nerve, lie adjacent to each other as they pass from the brain through a bony canal called the internal auditory canal.
I know these posts may seem like a lot, but the information will be most useful for my fellow "AN' newcomber friends from the Acoustic Neuroma Association forum site that have been newly diagnosed.
These tumors usually grow slowly over a period of years, and people don't know that they are actually causing problems. They are not inside the brain, but are deep inside the skull right next to the brain. The tumors can expand enough to actually displace normal brain tissue and push against the brainstem.
***Although I've been through a lot, I actually feel blessed mine was found the way it was, before too much damage has been done already. I know God has been watching out for me!!!
Anyways, I was later referred to Michigan Ear Institute for further testing. More testing (along with waiting and follow ups) revealed my brainstem response and hearing levels were decreasing slowly. I also had more detailed MRI's done in Detroit that was able to verify another 3 mm growth in just 6 months. Now the AN is only about 1cm, but has for sure been growing over the years and affecting things. I got plenty of opinions, etc. Looked into radiation too, but not for me. I want this out of my head and the things I found on radiation was that it is too new and for long term effects, I didn't like what I was told or read. Plus I was finding and hearing incidents where people ended up with surgery anyways within 5 years. Being younger, ever doctor I talked to highly recommended surgery. All also had the same opinion as to which approach to to do (since there is more than one). We chose the Middle Fossa surgical approach. This approach is used the most when a person (like myself) still has good hearing and they try to preserve it (about a 60-70% chance, but all depends exactly on where the tumor lies). I have been told my tumor looks more to be on the balance nerve, and that nerve is usually removed along with the tumor. So, vertigo and balance issues are a bit part of the recovery 'issues'.
Once again, I know it might be a lot of info., but it covers part of the adventure so far. Hopefully this gives you a bit of an insight to what we are dealing with.
Now I'm off to take care of that son who broke his hand yesterday (the life of boys that are "all boy"). The swelling was too much to do a cast yesterday, so he will have that Monday. (my mom, their caretaker next week, will be taking him for that). I need to get him to get that hand iced and proped up. He's complaining more of pain today than yesterday. They have it so wrapped, I can't tell what's going on.
I will post again, but feel free to e-mail me if you have more questions!
I know these posts may seem like a lot, but the information will be most useful for my fellow "AN' newcomber friends from the Acoustic Neuroma Association forum site that have been newly diagnosed.
These tumors usually grow slowly over a period of years, and people don't know that they are actually causing problems. They are not inside the brain, but are deep inside the skull right next to the brain. The tumors can expand enough to actually displace normal brain tissue and push against the brainstem.
***Although I've been through a lot, I actually feel blessed mine was found the way it was, before too much damage has been done already. I know God has been watching out for me!!!
Anyways, I was later referred to Michigan Ear Institute for further testing. More testing (along with waiting and follow ups) revealed my brainstem response and hearing levels were decreasing slowly. I also had more detailed MRI's done in Detroit that was able to verify another 3 mm growth in just 6 months. Now the AN is only about 1cm, but has for sure been growing over the years and affecting things. I got plenty of opinions, etc. Looked into radiation too, but not for me. I want this out of my head and the things I found on radiation was that it is too new and for long term effects, I didn't like what I was told or read. Plus I was finding and hearing incidents where people ended up with surgery anyways within 5 years. Being younger, ever doctor I talked to highly recommended surgery. All also had the same opinion as to which approach to to do (since there is more than one). We chose the Middle Fossa surgical approach. This approach is used the most when a person (like myself) still has good hearing and they try to preserve it (about a 60-70% chance, but all depends exactly on where the tumor lies). I have been told my tumor looks more to be on the balance nerve, and that nerve is usually removed along with the tumor. So, vertigo and balance issues are a bit part of the recovery 'issues'.
Once again, I know it might be a lot of info., but it covers part of the adventure so far. Hopefully this gives you a bit of an insight to what we are dealing with.
Now I'm off to take care of that son who broke his hand yesterday (the life of boys that are "all boy"). The swelling was too much to do a cast yesterday, so he will have that Monday. (my mom, their caretaker next week, will be taking him for that). I need to get him to get that hand iced and proped up. He's complaining more of pain today than yesterday. They have it so wrapped, I can't tell what's going on.
I will post again, but feel free to e-mail me if you have more questions!
The "ROCKS IN MY HEAD" (a little history)
The title of this post is a bit odd, I know. Neil and I have joked about me having "rocks" in my head. Gotta try to keep things on a lighter note :-) The so called "rocks" are actually my tumors that I'm told are benign.
I started this blog due to the overwhelming support and questions I've had with my surgery coming up for my Acoustic Neuroma (AN) removal on the 9th. Well, here is some more history how this all got started. (sorry it's not just short & simple....but I think it covers most all the questions I've been asked)
On February 12, 2007 I started to pass out & hit my head on a door jam. Neil ended up taking me to ER. (They said the passing out was due to severe muscle tension in my neck), BUT they did a cat scan, that later lead to an MRI due to an abnormal finding. Well, the MRI actually showed several abnormal findings (per my 1st neurologists words). At that time the main concern was a Choroid Plexus mass measuring 2.3cm x 1 cm. I was told this was likely a benign tumor and needed to follow with MRIs every 3-6 months. (I originally found out about this with a phone call from the nurse at the doctors office "Hi Denise, I'm calling to tell you that your Brain Tumor doesn't look malignant, but you need to see a neurologist"......My heart sank....I wasn't told anything at ER about any tumors, just an abnormality!!! UGH, my heart was in my stomach, and the nurse (the doctors wife) felt terrible....they all thought I knew (I will NEVER forgot that moment). I went to the neurologist, and then referred to a Neurosurgeon in Muskegon. He ''watched'' it and nothing was changing, that was great news. During that time and at one of my visits to one of my doctors, I was told of another concern of a small growth/enhancement in my left internal auditory canal. (no one seemed too concerned over that, so neither was I.....I did always get copies of my reports, but that one was only 3mm and sounded like nothing to me).
Skip forward to January 2, 2009 (still plenty of doctor visits, etc. in between). I thought I was done with MRI findings and everything was stable...NOT! I was referred to my ENT (whom I've been to before). He went over the MRIs with me again and was VERY good at pointing things out and explaining them.................off to my next post, a little more detail on this newest growing tumor.
I started this blog due to the overwhelming support and questions I've had with my surgery coming up for my Acoustic Neuroma (AN) removal on the 9th. Well, here is some more history how this all got started. (sorry it's not just short & simple....but I think it covers most all the questions I've been asked)
On February 12, 2007 I started to pass out & hit my head on a door jam. Neil ended up taking me to ER. (They said the passing out was due to severe muscle tension in my neck), BUT they did a cat scan, that later lead to an MRI due to an abnormal finding. Well, the MRI actually showed several abnormal findings (per my 1st neurologists words). At that time the main concern was a Choroid Plexus mass measuring 2.3cm x 1 cm. I was told this was likely a benign tumor and needed to follow with MRIs every 3-6 months. (I originally found out about this with a phone call from the nurse at the doctors office "Hi Denise, I'm calling to tell you that your Brain Tumor doesn't look malignant, but you need to see a neurologist"......My heart sank....I wasn't told anything at ER about any tumors, just an abnormality!!! UGH, my heart was in my stomach, and the nurse (the doctors wife) felt terrible....they all thought I knew (I will NEVER forgot that moment). I went to the neurologist, and then referred to a Neurosurgeon in Muskegon. He ''watched'' it and nothing was changing, that was great news. During that time and at one of my visits to one of my doctors, I was told of another concern of a small growth/enhancement in my left internal auditory canal. (no one seemed too concerned over that, so neither was I.....I did always get copies of my reports, but that one was only 3mm and sounded like nothing to me).
Skip forward to January 2, 2009 (still plenty of doctor visits, etc. in between). I thought I was done with MRI findings and everything was stable...NOT! I was referred to my ENT (whom I've been to before). He went over the MRIs with me again and was VERY good at pointing things out and explaining them.................off to my next post, a little more detail on this newest growing tumor.
Thursday, November 5, 2009
The blogging journey begins!
Well, I've decided to try a blog. I've had a lot of people from all over the U.S. tell me it's a good way to share the information we are going through. Might be an easier way for people to follow my progress with my upcoming surgery on November 9th. (I will fill in more on that tomorrow).
Our big adventure for today was that Trenton ended up breaking his hand....ugh! So, my plan was to get this blog started and see where it took me, well I think I'll come back to it tomorrow.
Our big adventure for today was that Trenton ended up breaking his hand....ugh! So, my plan was to get this blog started and see where it took me, well I think I'll come back to it tomorrow.
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