Author Topic: 26 Month Check Up  (Read 1588 times)

TT

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26 Month Check Up
« on: October 27, 2008, 12:32:52 pm »

Greetings,

I have not been active on this board for a long while while trying to get my life back to normalcy.
My surgery was 26 months ago and for the most part, my life and heath are fantastic. I consder myself to be very lucky.
My hearing was lost in the AN ear and I have a hearing device in my good one. On normal days I do just fine; I've adjusted.
I have the same issues in load places that everyone has who has hearing in only one ear. I hate it, but I know it could be much worse.

My questoins concern balance, dizziness and headaches.

I went through the rehab excercises, but I still have issures. If I turn my head fast or if I have make a sudden turn with my head I lose balance and or experience dizziness.
A good example is when walking our dog. He sometimes gets tangled up and forces me to make a complete circle while still walking. This really gets to me almost to the point where I feel like I'm going to go down.
My doctor says to keep up the excersises, I did for awhile, but I wonder if if this is as good as it's going to get.
I have come to realization this is my new norm and gotten used to it,  but I thought I find out if others were experiencing the same issues.

My other question is headaches. I average around one per week which isn't too bad compared to many. It always starts at the bottom of the area where they went in for the surgery. The pain slowly works up the back of of my head and hangs on for 12-18 hours. I have taken many kinds of over the counter pain medicines, but nothing seems to help. It only goes away on it's own.
It seems as though there should be some medication to help this. The doctors kind of blow mw off, saying it's common to the proceedure they used.

Thanks,
Terry





 
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

vjgfamily

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Re: 26 Month Check Up
« Reply #1 on: October 27, 2008, 12:51:01 pm »
Hi Terry,

I had my surgery 20 years ago, and I still have dizzy episodes like you describe.  But, it does improve in time...mine aren't nearly as bad as they were (or as often).

Let me know if you have other questions.

Thanks,
Verl
AN Surgery in 1988 by Jack L. Pulec in LA.  Loss of hearing in right ear.

Patti

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Re: 26 Month Check Up
« Reply #2 on: October 27, 2008, 04:51:46 pm »
Terry-I go for cranial-sacral treatments that really help with those headaches.  Mine were the same as yours.  When i go to the doctor regularly, the headaches don't come.  When i don't go regularly, i get headaches.  The treatments are covered by my insurance (70%).  I think balance gets better too.  The theory is that the membranes around the brain don't line up neatly after they are cut during surgery.  Cranial-sacral treatments work on those membranes.  Patti
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Jim Scott

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Re: 26 Month Check Up
« Reply #3 on: October 27, 2008, 07:21:51 pm »
Hi, Terry:

I'm glad you decided to visit the site and post again.  I trust you'll receive some useful feedback.

I'm also a little over two years  (28 months) post-surgery (retrosigmoid) and also enjoy good health and a great life.  I haven't experienced the headaches but I'm sure others have and will offer some suggestions and advice.  My balance is pretty serviceable but I can get thrown off fairly easily.  Last week, I was helping my adult son move.  In the process, I jumped off the tailgate of a pickup truck and didn't land quite right.  Instead of catching myself, I staggered forward a few steps then lost my balance and ended up sprawled on the lawn.  Fortunately for my self esteem, no one saw this happen.  I wasn't injured (I landed on grass) and I quickly got up.  I've decided to avoid jumping off of pickup truck tailgates for the time being.  In short: my balance is O.K. under normal circumstances but harder to regain if once lost due to a stumble or other mis-step.  I can accept this because all it does is make me a bit more cautious and aware of my propensity to lose my equilibrium if it is compromised in any way.  So, this is my 'new normal' and probably as good as it gets.  However, I'm 65 and although I'm fairly active, I can accept this relatively minor limitation easier than a younger person. 

I can't credibly speculate about whether your balance will continue to improve - but I suspect that it will.  This kind of healing takes time...a lot of time.  I hope to be around long enough to see even more improvement in my balance but if that doesn't happen, I can't complain.  Overall, I'm doing very well and I'm grateful for that but more healing is always welcomed.  :)   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

TT

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Re: 26 Month Check Up
« Reply #4 on: October 28, 2008, 07:47:10 pm »
Thank you to those who took the time to respond to my concerns and questions.
I forgot how encouraging it is to share this journey with fellow survivors.

Terry
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri