Did steroid help????

The steroid was just a pac, so that means lots the 1st day, then each day less.   After about 24 hours I could for sure tell it was helping a lot with the "internal" cranial pressure I was having and some on the "external....face, ear, muscle, etc.".     I felt really good for about 2 days.   It helped with making it through my grandmothers funeral stuff, but I think maybe I over did it those days too.   I felt terrible over the weekend.  

I'm on my last day of the pac and all of the external pressure and numbness and pain is strong.   Not sure where to turn now, but have an appointment with my local ENT a week from Friday.   It almost feels like I have a major ear infection and suddenly the tinnitus (ringing noises) have gotten worse.   Some say it has to do with the weather changing.....back to cold and snow :-(      

Dizzyness wise, I'm pretty o.k. unless I over do it or move too fast.    I am driving more comfortably now, so I don't feel like I have to rely on someone else and that I'm stuck home.

Going out into public places, still not easiest & fun.   The stimulation on my brain due to the hearing loss is crazy!   Unexplainable actually (unless you've been there of course)!      NOT the same a those who go deaf slowly!!!   Your brain has some fast readjusting to do, in addition to trying to heal from the surgery, etc.

I guess I'm only 11 weeks and really not sure if it's too bad.   Just NOT what I expected, of course :-)

Back on steroids

Well, back on steroids.   The issues I mentioned on last post were not getting better.  I got my appointment rescheduled in Detroit this Friday.   My grandma ended up passing away and funeral is Friday.   She just found out a little over a month ago she had Lymphoma cancer and it was pretty much all over.   She was taken care of with the help of hospice and went into a sleep for almost 4 days before passing.  I am so glad she didn't have to suffer a long term of cancer pain.    Due to her funeral I had to cancel appointment on Friday, but was also nervous of how terrible I have felt on & off.   LUCKILY my neruotlogist from Detroit called me back.  He was VERY kind and decided to go ahead and start a steroid.   If I have no change for the better in a week, I need to get right in to see him, but if (and I pray) it is better, I should wait until the steroid is out of the system again and see how things go before returning.    That is the difficulty with having the specialist far away, you can just get in easy.

Of course, my luck is that the steroid is the same one I was on at the time after my surgery that I had an allergic reaction to a medication.  I was also on a pain medicine that the doctor and pharmacist said was more likely the cause of the rash..   But, I had to switch up both medicines anyways.   SO, hopefully it wasn't the Medrol steroid I was allergic to.  Now I will know....

Thanks again for all of the emails, comments, cards, and calls I have gotten over this long time.  

Not great update

I've had plenty people say they've checked the blog and not seen much and wonder.

Well, I'm bad, sorry.

My update isn't actually as good as some.   The swelling/fullness/puffiness in the entire side of my surgery side is REALLY getting to me.   Enough that I've scheduled an appointment with the neurotologist.   Seems like it is getting worse everyday and it worries me because of the additional swelling I had in my brain after surgery, plus they were thinking I had a mastoid infection...possibly, and it almost feels like the facial paralysis is coming back.  Just odd.       Yeah, I'm only 9 weeks out, but I have found all these symptoms started getting worse after all the steroids, pain meds, and the antibiotic I was on all wore off.    

When it comes to the brain, and all those nerves that these surgeries can effect, etc. it does worry me more.   I literally get an actual swelling that runs down the side of my face from my cheek bone to up above my ear and a ways into the middle of the incision area.  It is about 2" thick in width when it does it.   It throws my speech off some at that time too, and increases the fullness and pressure in my head.   Makes my ear inside painful.     I have been told I'd take longer for healing, but I've been doing nothing to overdo it, etc.  

Good news is the only time I really notice the tinnitus is when that swelling/fullness hits it tends to get high.  Sometimes I notice a little when it is totally quiet.      Still doing rehab for my neck and back and that helps greatly.   I don't use prescription pain meds for weeks now and usually o.k. with over the counter if needed (no med helps with the fullness/pressure/swelling pain though).    Rehab also helped my balance a lot too.   That does go off though with those other symptoms too.   

Mentally not always in the greatest place.  I honestly thought I was gonna be one of those surgeries that worked out just fine and had my hearing, etc.   WRONG, way off.   Oh well, dealing with it as I can.  

I think Trenton is having the hardest time with it because he wants me back volunteering at school.   I told him I'm not used to the deafness on one side yet, and those other symptoms hit witout warning, so not a good idea.   It's hard enough being around more than one person, I can't understand what's being said, etc.  Plus if the noises get too loud it makes me sick feeling.

As for driving, thanks to the darling snow and the fact I'm not a good winter driver AND these symptoms flaring whenever, I haven't even attempted it.   That is working out o.k. though, things work out just fine.

Hopefully that gives a few updates.    

Thanks for thinking of me and the continuing prayers, etc.
Denise

Latest

Well, I got in to see an Eye specialist Monday, my 8 week mark. My paralysis is about 90% back to normal only because my left eye is off some still. It will close, but slower, so it is also drier and the tear duct don't work right. He put a plug in and that has helped a lot more so far to keep the moisture in my eye. He said after running a bunch of tests (or whatever...they hurt my eye), that my left eye was wiggly. He said he was familiar with the type of surgery, etc. and with my delayed paralysis and additional brain swelling, it will for sure take things longer to heal. Even thought I do the correct exercises for them each day, ugh! He told me due to this I should hold off driving.....mostly too because it is so snowy and ucky here. Told me also to wear my polarized sunglasses in the day if I go out, will help my eyes too.

Still more, but I can only do a bit at a time!!

Here is our snow....lovely living close to Lake Michigan and the lake effects. This is of our big deck around the pool.....I think the railings are about 42"..?? (yeah, where's the pool!)

Holidays and ear

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!!!!!!!!!!!

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

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