Had another newly diagnosed Acoustic Neuroma person send me a message in regards to the info. on my blog from when it started and thanking me for good information. Anyways, that got me to come back and read it 'again' (which has been awhile) from the beginning......I've had to laugh & cry.
My husband is one of the greatest men on earth. He has so much common sense and so many skills and SO much energy it makes me jealous some times. BUT, I have always said he is not one who is into the electronics, etc. like computers, cell phones, not even a TV remote :-) Reading back over some of his posts from when I first had surgery 6 months ago make me laugh. I can just invision him sitting in the waiting area or by my bedside taking forever trying to figure this thing out. Wish I would have been more with it because it would be a SUPER RARE sight to even see him sit still long enough to 'battle' it. Of course we were 3 1/2hrs away from home, so not much better to do.
The crying came along when reading all the comments made by so many all throughout the U.S. Good tears, so heartfelt. It is so great remembering how many people had my family and health care providers in their thoughts & prayers........THANKS AGAIN!!!
Friday, May 14, 2010
Thursday, May 6, 2010
Cranial Therapy
Well I started physical therapy again yesterday. This time is more of a focus in what is called Cranial Therapy and the neck area. The pains that really flared about 5 weeks ago had gotten much better with strong meds, but still tend to come & go. My doctor recommended a different therapy & different place. The therapist told me I may end up not feeling good awhile after the treatment. Sure enough, the treatment felt great and must have released some of those good endorphines for awhile, but last night the pain & pressure all flared big time. Now today it has been so bad I didn't feel like picking up my head...it just pulsed in pain & pressure. Back to the meds and rotate heat & ice. (it should get better with treatments)
Odd thing is the strong pain medicine I am on called Dilauhdid (generic) makes my tinnitus (ringing) WAY less, almost non exsistent. I find it interesting. Problem is, that is NOT a medicine to be on unless absolutely needed. It is a major drug, stronger than morphine. Such a bummer, why can't something like Tylenol just help like that!
BAROMETRIC PRESSURE:
Well, I am now quite a believer that my brain inflammation is also affected when the weather is changing. I have read lots about it, and had doctors tell me yes, for sure. It is basically referred to like someone with arthritis.....they tend to ache more when the weather is changing, or a storm is coming. WELL, that is me too. Supposedly there is a storm coming tomorrow and for me that creates the pressure in my head verses the pain in my skull base & neck. Yeah, maybe confusing, but at least I am finally understanding it all. Problem is I haven't found how to help relieve the pressure type pain......any ideas?
Many ask if the inflammation & pressure will go away. I have been told it should, but due to the problems I had with my brain right after surgery it can take a long time for the brain & nerves to heal. Plus there is no promises because of my secondary condition of Chiari Malformation. PATIENCE, I guess that is the only word I can think of.
Thanks again to everyone for your continual support. This journey has been crazy, and the doctors have been telling me to give it at least a year & hopefully things will be much better. So, patience for sure (some days much better than others)
Sorry if I haven't returned e-mails or phone calls or messages right away, please don't give up......I'm just still on the emotional rollercoaster with all of this too!
Odd thing is the strong pain medicine I am on called Dilauhdid (generic) makes my tinnitus (ringing) WAY less, almost non exsistent. I find it interesting. Problem is, that is NOT a medicine to be on unless absolutely needed. It is a major drug, stronger than morphine. Such a bummer, why can't something like Tylenol just help like that!
BAROMETRIC PRESSURE:
Well, I am now quite a believer that my brain inflammation is also affected when the weather is changing. I have read lots about it, and had doctors tell me yes, for sure. It is basically referred to like someone with arthritis.....they tend to ache more when the weather is changing, or a storm is coming. WELL, that is me too. Supposedly there is a storm coming tomorrow and for me that creates the pressure in my head verses the pain in my skull base & neck. Yeah, maybe confusing, but at least I am finally understanding it all. Problem is I haven't found how to help relieve the pressure type pain......any ideas?
Many ask if the inflammation & pressure will go away. I have been told it should, but due to the problems I had with my brain right after surgery it can take a long time for the brain & nerves to heal. Plus there is no promises because of my secondary condition of Chiari Malformation. PATIENCE, I guess that is the only word I can think of.
Thanks again to everyone for your continual support. This journey has been crazy, and the doctors have been telling me to give it at least a year & hopefully things will be much better. So, patience for sure (some days much better than others)
Sorry if I haven't returned e-mails or phone calls or messages right away, please don't give up......I'm just still on the emotional rollercoaster with all of this too!
Tuesday, April 20, 2010
Some answers to some pain???
Well, as many of you know I had some ER visits and doctor appointments in the past weeks. Possibly my head is spinning even more, or at least one doctor gave me some 'possible' answers/opinions. I honestly don't even know where to start, but here we go:
It has been confirmed for sure that I have this condition called (Kee-AR-ee) Chiari I Malformation (some refer to it as Arnold Chiari). {I'll try to give a simple explanation} The lower part of the base of your brain descends into the spinal canal which is down through the hole in the base of the brain. Around that area is what is called the cerobrospinal fluid (CSF), your brainstem, and all your cranial nerves. This malformation can cause compression on this area, and possibly disruption to the CSF flow. **these are possiblities and depending on the degree as to how much the brain is descending can create symptoms, and sometimes people have this and no symptoms....there are also additional issues that can come along with this malformation, but I don't currently have those, so enough.
WELL, the problem is that my MRI's show this condition, BUT also supposedly show some edema, inflammation (and some other term??) in where my surgical area was for my tumor removal. The neurosurgeon yesterday said there is no room in peoples heads for our brains to expand and that is why any type of inflammation, etc can cause pressure, pain, problems anywhere throughout the brain & head. UGH!!!! Yes, it makes sense! He said though that it is to hard to tell for sure what is causing my symptoms and I need to refer back to my neurotologist who did my tumor removal 1st, AND to give it time for things in my brain to settle down . He said give it at least a year....you went through some major surgery and had some big complications post surgery. I said that I WAS doing good, but suddenly had this major pain/pressure flare up a month ago. He said that may happen due to my situation, but we could tell I have been getting better again, so recouping does work.
The neurosurgeon I seen last week only seemed to look at the Chiari, and didn't mention anything about my previous surgical area (and he assisted on that tumor removal). I gave up in his office after he kept repeating the same thing, etc and I was upset, crying and just wanted to leave, so didn't get to asking more questions. Since he only focused on that one area, his response was: There is no way this Chiari is causing your symptoms because of the way he viewed 1 MRI. Then he said I just have headaches, but not sure what kind and said Lyrica would be good for that. I even said, "NO they are not just headaches". I asked why my balance got so bad again and my tinnitus showed up 3 months post surgery. Then he goes on to talk about balance will never be good, and there was another surgical option for that and tinnitus, that named some other option (can't even remember I was so flustered). I was done.
Now yesterdays neurosurgeon said "Yes, definately this Chiari can be causing all your symptoms", BUT there is the previous surgical issue. O.K. now that makes more sense (now that I know there is more going on in there). So I asked if I didn't have stuff from the tumor surgery, what are the options for the Chiari? His take on it was that he don't believe in physical therapy, etc. The only way to take care of it was surgery. Well, I know there is no returning it to normal without surgery, BUT wouldn't therapy help with the pressure and pain some??? He said I can do what I want and do discuss it with my internest. {don't matter because there is NO WAY I could go through another major brain surgery for who knows how long...NO WAY!!!}
So, now I send MRI & CT reports and CD's back to Detroit, follow up to see what internest says next week, and ya know.......depending on what neurotologist says from Detroit....may be getting another opinion too. UGH, UGH, UGH!!!
I have been feeling more on the up the past week and off some major pain meds I've been on since my ER trips, so I am recouping by doing nothing and taking it easy. But I'm SCARED, to say the least. Daily dealing with something of pain or pressure, but how much and what flares it can change in an instant. Basically....it all just stinks! (don't know what else to say)
So, that is once again my update. Always lengthy I know. We'll just see what next week has to bring. Maybe some better answers??
Thanks for reading 'listening'
Denise
It has been confirmed for sure that I have this condition called (Kee-AR-ee) Chiari I Malformation (some refer to it as Arnold Chiari). {I'll try to give a simple explanation} The lower part of the base of your brain descends into the spinal canal which is down through the hole in the base of the brain. Around that area is what is called the cerobrospinal fluid (CSF), your brainstem, and all your cranial nerves. This malformation can cause compression on this area, and possibly disruption to the CSF flow. **these are possiblities and depending on the degree as to how much the brain is descending can create symptoms, and sometimes people have this and no symptoms....there are also additional issues that can come along with this malformation, but I don't currently have those, so enough.
WELL, the problem is that my MRI's show this condition, BUT also supposedly show some edema, inflammation (and some other term??) in where my surgical area was for my tumor removal. The neurosurgeon yesterday said there is no room in peoples heads for our brains to expand and that is why any type of inflammation, etc can cause pressure, pain, problems anywhere throughout the brain & head. UGH!!!! Yes, it makes sense! He said though that it is to hard to tell for sure what is causing my symptoms and I need to refer back to my neurotologist who did my tumor removal 1st, AND to give it time for things in my brain to settle down . He said give it at least a year....you went through some major surgery and had some big complications post surgery. I said that I WAS doing good, but suddenly had this major pain/pressure flare up a month ago. He said that may happen due to my situation, but we could tell I have been getting better again, so recouping does work.
The neurosurgeon I seen last week only seemed to look at the Chiari, and didn't mention anything about my previous surgical area (and he assisted on that tumor removal). I gave up in his office after he kept repeating the same thing, etc and I was upset, crying and just wanted to leave, so didn't get to asking more questions. Since he only focused on that one area, his response was: There is no way this Chiari is causing your symptoms because of the way he viewed 1 MRI. Then he said I just have headaches, but not sure what kind and said Lyrica would be good for that. I even said, "NO they are not just headaches". I asked why my balance got so bad again and my tinnitus showed up 3 months post surgery. Then he goes on to talk about balance will never be good, and there was another surgical option for that and tinnitus, that named some other option (can't even remember I was so flustered). I was done.
Now yesterdays neurosurgeon said "Yes, definately this Chiari can be causing all your symptoms", BUT there is the previous surgical issue. O.K. now that makes more sense (now that I know there is more going on in there). So I asked if I didn't have stuff from the tumor surgery, what are the options for the Chiari? His take on it was that he don't believe in physical therapy, etc. The only way to take care of it was surgery. Well, I know there is no returning it to normal without surgery, BUT wouldn't therapy help with the pressure and pain some??? He said I can do what I want and do discuss it with my internest. {don't matter because there is NO WAY I could go through another major brain surgery for who knows how long...NO WAY!!!}
So, now I send MRI & CT reports and CD's back to Detroit, follow up to see what internest says next week, and ya know.......depending on what neurotologist says from Detroit....may be getting another opinion too. UGH, UGH, UGH!!!
I have been feeling more on the up the past week and off some major pain meds I've been on since my ER trips, so I am recouping by doing nothing and taking it easy. But I'm SCARED, to say the least. Daily dealing with something of pain or pressure, but how much and what flares it can change in an instant. Basically....it all just stinks! (don't know what else to say)
So, that is once again my update. Always lengthy I know. We'll just see what next week has to bring. Maybe some better answers??
Thanks for reading 'listening'
Denise
Thursday, April 8, 2010
Read Comment
I made a little comment on my previous post due to the number of emails, etc. I have gotten from that post.
Saturday, March 27, 2010
Sorry, no posts lately
I just want to let those of you know who check this often SORRY, I haven't posted because I have nothing positve to post lately. Things have not been good for me and our poor household is going through a rough time right now.
If you chose to know more, feel free to call anytime.....I am home most all the time....I am currently very limited.
If you pray our just want to send thoughts: you can just add us to the list for strength and well being.
Thank you
Denise
If you chose to know more, feel free to call anytime.....I am home most all the time....I am currently very limited.
If you pray our just want to send thoughts: you can just add us to the list for strength and well being.
Thank you
Denise
Tuesday, March 9, 2010
St. Patricks picture
This is a project from from St. Patrickslast year we did with Trenton's class
at an assisted living elders home.
Not sure how enjoyed it the most, the
2nd graders or the elders. Love
watching the communication and
fun between them!!!
March has been great so far here
in Michigan. Mid to upper 50's
today and we've had lots of sun.
I sure hope it stays!!!
Take care everyone!!
Saturday, March 6, 2010
Weather changes hurting me???
Yep, weird title, but I am really, really starting to say the weather changes over the past 2 weeks have been affecting me. I was doing GREAT for a full week. Then, suddenly it's like someone has been using an ice pic and stabbing me in the ear. My ear also feels very full and the tinnitus has gotten to the point where sometimes it seems severe. Hmmm
Then, I can almost wake up and almost nothing. My mother in law actually mentioned something to do with the weather awhile back and I thought, yes it makes sense and seems to fit. Then, my neurotologist told me it would probably play a big role for awhile too. Now after reading lots on the forum and other websites, I'd have to say a change in the air pressure, etc can be a big source of my pain & tinnitus changes.
Things sure have been crazy for the past 4 months, but yes MUCH better than 2 & 3 months ago. It will take time, but mentally sometimes it is hard to believe. If it weren't for the Acoustic Neuroma forum, I'd probably have gone more off the crazy end at some point. ALSO my husband of course {he tries very hard & deals with me the best he can}. Other than that, sometimes I feel like I am alone. I am home by myself a lot, but seems like the phone never rings and due to not working, etc. my social life is down hill. Dealing with crowds/social settings I have to take day by day. Sometimes 1/2 of my head feels so swollen or stuffed and noises make me cringe, then others I feel ready to go. I just don't get it...
Well, I think I am venting today, sorry. We are having lots of sun which I love, but LOTS of mud and wet. The sun makes me want summer and to be able to sit in the warmth and enjoy see how this SSD affects my love of hearing the outdoors. SOON.....
Thanks for 'listening' :-)
Then, I can almost wake up and almost nothing. My mother in law actually mentioned something to do with the weather awhile back and I thought, yes it makes sense and seems to fit. Then, my neurotologist told me it would probably play a big role for awhile too. Now after reading lots on the forum and other websites, I'd have to say a change in the air pressure, etc can be a big source of my pain & tinnitus changes.
Things sure have been crazy for the past 4 months, but yes MUCH better than 2 & 3 months ago. It will take time, but mentally sometimes it is hard to believe. If it weren't for the Acoustic Neuroma forum, I'd probably have gone more off the crazy end at some point. ALSO my husband of course {he tries very hard & deals with me the best he can}. Other than that, sometimes I feel like I am alone. I am home by myself a lot, but seems like the phone never rings and due to not working, etc. my social life is down hill. Dealing with crowds/social settings I have to take day by day. Sometimes 1/2 of my head feels so swollen or stuffed and noises make me cringe, then others I feel ready to go. I just don't get it...
Well, I think I am venting today, sorry. We are having lots of sun which I love, but LOTS of mud and wet. The sun makes me want summer and to be able to sit in the warmth and enjoy see how this SSD affects my love of hearing the outdoors. SOON.....
Thanks for 'listening' :-)
Subscribe to:
Posts (Atom)
