Author Topic: Hi everyone...  (Read 2037 times)

LN

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Hi everyone...
« on: May 22, 2008, 08:51:20 am »
Hi everyone!!!

My mother is trying very hard not to have Gentamicin injections into her AN (4mm X 6mm) ear for fear of losing what is left of her hearing.  I was wondering if anybody out there has had these injections and could tell me their experience.  I feel so sorry for my mother, but on the positive side, my mother is 83 years old and thankful this did not occur at a younger age, though my mother says she doesn't feel her age.  Her balance when walking is terrible, she thinks people look at her and think she is drunk!  I have encouraged her to start using my Dad's cane for fear of falling.

Well, that's it for now and thank you all for your encouragement and help.

LN   (ellen)

Joef

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Re: Hi everyone...
« Reply #1 on: May 22, 2008, 11:13:45 am »
I know its only my opinion .. but I bet others will back me up .... If I have a choice of no balance or no hearing in one ear .. I would lose the hearing .... as long as the hearing in the other ear is not to bad .. its very live-able ...

at 83 .. the joints and muscles can't make up for the balance issues .. causing fatigue and quality of life issues ..(at least it did for me at 40!)  she could fall and break a bone .. and then you have more issues!!
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

er

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Re: Hi everyone...
« Reply #2 on: May 22, 2008, 11:23:24 am »
Hello LN,
Good idea about the cane, at 83 she doesn't want to fall and hurt herself. I have taken a few falls, it is not all the time.  I'm younger and afraid I am going to hurt myself bad or hurt my granddaughter when I am carrying  her.
eve

Jim Scott

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Re: Hi everyone...
« Reply #3 on: May 22, 2008, 01:33:44 pm »
Hi, Ellen:

This is a perplexing situation and only your mother, with your help, of course, can make the final decision. 

The Gentamicin injections will risk your mother's hearing and possibly make her balance issues worse but that is supposition from a non-physician and has to be taken as such.  Physicians opinions should - and no doubt will - carry much more weight as you and your mother come to a decision on the injections.  Meanwhile, your mother temporarily using a cane to help compensate for her disequilibrium seems like a very logical idea.  I hope she sees the wisdom of doing this. 

I wish you and your mother good outcomes.  :)

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.

Omaschwannoma

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Re: Hi everyone...
« Reply #4 on: May 22, 2008, 02:33:04 pm »
Ellen,

I had surgery in 2005 to remove AN from left side.  Three years down the road and I ended up using a cane as I my balance was becoming worse with time.  I did have vestibular therapy right after surgery to regain my balance, this worked well for short period of time.  They measured me at 85%.  My most recent diagnosis in 2008, was labyrinthitis where inflammation of inner ear and hemhorrage of cochlea were found on yearly MRI.  I underwent labyrinthectomy through the ear canal as I was deaf anyway (this approach plus gentamycin will destroy any serviceable hearing).  After removal of semicircular canals, cochlea and residual vestibular nerves I am so much better!  I was awake for this procedure, no pain as they did a nerve block, and recovery time was nil.  I did go back to vestibular therapy where my balance after this surgery measured 65%.  I have regained 75% and expect more improvement with in-home exercises.  I do not need my cane unless I walk in dim light/darkness.  I would like to say to your mother that her tumor is causing a disruption of signal to the brain.  The other (good) vestibular nerve is trying hard to compensate, but just can't until the damaged nerve is a dead one.  I feel being deaf on one side is much better than experiencing the balance problems.  The gentamycin approach might work, less risky than say surgery?  Although wait and watch for small tumors is the way to go until they start to cause other symptoms.  Perhaps vestibular rehab is in order so she can speed up the better balance and lessen the nausea she must be experiencing.  Some people go into vestibular rehab before anything is done to treat their AN's as their balance is terrible and this can help some, perhaps she can look into this?  Tell her there is someone that does understand how awful is feels, as I've been there. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

satman

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Re: Hi everyone...
« Reply #5 on: May 23, 2008, 08:08:53 am »
Good call Joef,balance is much more important,one can get use to ssd.
kicked my little 8cm buddy to the curb-c ya !

claire1

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Re: Hi everyone...
« Reply #6 on: May 23, 2008, 03:26:59 pm »
Hi Ellen
I'm pre-treatment with my AN in my left ear.  Although I have many issues with tinnitis,clicking, dripping, fullness and the list goes on, I've never had gentamycin injections.  That sounds very painfull.
God bless your mom at this age and going through this. I was just telling my daughter two days ago, "Thank G_d, I'm not older."  I guess thats' what makes us different. Best Wishes.
Have a Great day
Claire