Gentamicin injections

[Patti UT]

Looking for anyone who had the gentamicin injections to kill off remaining vestibular nerve or nerve fibers to improve balance.  I posted this question aobut 1 1/2 years ago, got one person "db" guest who said thy had had them, but there was no email for "db" to get any more info.

Anyone else had these??  I'm at the point of chosing surgery over radiation for AN #2 mainly because it promises hope in the balance dept going translab.   I really would rather not do surgery again, but need to get rid of that remaining balance nerve.

[cindyj]

Hi, Patti!  Mary (MaryBKAriz) had those injections post CK - think it helped her quite a bit.  Right, Mary?  Also, Nancy (NancyDrew) recently inquired about them...there's a thread somewhere about it...think she decided to wait, though.  Nancy also had radiation treatment, not surgery.

I know what you mean about wanting that nerve gone and not just damaged further...was one of the reasons I chose surgery, but know you hate to face it again.

Best to you,

Cindy

[Patti UT]

I'm curious to know what the injections do to the facial and other nerves if it kills off the vestibular???  yikes!

[ppearl214]

all I know about the injections is that there is a chance of further hearing loss post-injection.

I got to spend time with MaryBKAZ last weekend at the symposium (and what a delight she is... and yeah, so's her lovely husband!).  Mary does walk with a cane and noted some balance issues but -- overall, she looked absolutely terrific and was moving along better than me (with me using my cane)!       

will watch this thread as I would also like to learn more about it and the outcomes.

Phyl

[Patti UT]

Phyl,  I'd like to use the quote on your signature and "wash my hands of this weirdness"  and go back to my old life

wish it were that easy

yootee

[ppearl214]

Phyl,  I'd like to use the quote on your signature and "wash my hands of this weirdness"  and go back to my old life

wish it were that easy

yootee

and that is why I chose it for a sig line... same as you.... tired of the weirdness but..... since we are crewmembers to the PBW, we can wash our hands of it, for sure! You know I'm on this as well. Just take your time, as best as you can. You are doing everything right with your research. Hang tough, m'dear! I've put some PM's out there for this topic to see how others respond. Let's get you some answers xoxoxoxo

[Patti UT]

Found a very informative site

 http:// www.dizziness-and-balance.com/treatment/ttg.html   

describes the injections, risks, sdie effects ect.  Does not say anything about using them post AN surgery for balance though.

[MaryBKAriz]

I wrote up a reply a couple of days ago and lost it. So here I go, I will try it, again.

One of the main reasons I received my diagnosis of AN was because I had imbalance, dizziness and nausea. I chose CK and in June of 2008 had a one shot treatment (long story) but my sudden lack of word recognition had a lot to do with it.

My heart goes out to you with these issues. They are definitely no fun. After mentioning the worsening balance issues after my CK I felt desperate to deal with it. My doctor suggested I wait and "push it", "don't baby myself" and do the vestibular exercises. He said other options would be the gentamycin injections, or more aggressively labrynthectomy or AN surgery. I was so confused similar to the quandry of which treatment or lack of treatment to chose for the AN.

In the end, I did not do any of the treatments and for me that was the best decision. I still have the issues, but I have what I call "sea legs". A new sailor gets sea sick and has troubles with the rolling seas. Eventually, he adapts. The sea is still rolling, he just can deal with it. That is me. I really pushed it doing vestibular exercises given me by the PT, doing the exercizes in the "Balance Booklet" that the AN site has and doing exercises my doctor gave me. In addition I did some Wii Fit - I did REALLY bad at that - but it was the most fun of the exercises.

At the symposium this year the balance doc said to push up to getting sick. Stop before you get sick, though because that will negatively reinforce your exercises.

I did things that made me look like I lost my marbles. Shaking my head back and forth at a small piece of paper with the letter "B". The nodding it. I worked up to doing the same thing with very garish wrapping paper. I walked down the hall doing the "museum" walk. Looking back and forth at the walls as I walked by them. I worked up to doing them walking backwards.

Now all this never stopped my issues. They just stopped how I reacted to them. Still when I am tired I cannot get on top of it - or if I go too long with too much stimuli of any kind. I use a cane most of the time which helps.

I don't know if any of this gives you any hope or ideas, but I do hope you come away with the knowledge we are cheering you on out here.

Dizzy Dame,

Mary
 

[Patti UT]

Thanks everyone for your input.  As much as I hate to say it, it's looking more and more like my best bet is going to be translab to get the new tumor out and also  remove the hearing & remaiining peice of the vestibular nerve for probable improvement in my balance.  I have been searching for a way to avoid the surgery, the first time did not go so well.  But after almost 5 years and numerous falls/ injuries, regardless of the vestibular rehab exercises, and as MaryBKAZ describes, "pushing oneself" I don't see how radiation is going to improve the balance without getting that nasty peice of nerve outa there so my brain can finish compensating for the loss of the "whole nerve"  I have done everything I was taught at Vestibular rehab and have "pushed myself " to the point of too many injuries.  I was hopeful maybe these injection along with radiation would be an option, but it doesn't look so good.  I've also thought about radiation and a labrynthectomy,  but heck, if I'm gonna have a sugery, might as well get the tumor out as well.  I have consulted a CK doc, a GK & Novalis doc, Dr Freidman @ House, and my own previosue susrgeon who came from HEI
 I' think I've beaten this horse long enough.  Thinking maybe I'll crawl back into my little cave of denial a while longer until I can face the surgery.  I'm thinking getting the Chrsitmas shopping done early and go in Nov/Dec
mor4e later

HUGS ALL
Patti UT

[MaryBKAriz]

Hi Patti,

I think you definitely have been through it and I understand you leaning that way. I will be cheering you on whatever you decide. I wish these decisions were easier or more obvious. There never seems to be any perfect answers, does there?

Take care,

Mary

[sgerrard]

As much as I hate to say it, it's looking more and more like my best bet is going to be translab...

No one should have to do AN surgery twice, but a translab is not such a bad thing. Quite a few people on the forum have had them, and after the requisite two months recovery are doing just fine with it. It's gonna be okay, Patti.

Steve

[cindyj]

(Mary, you didn't have the injections?  See, I know not of what I speak...I should just keep my mouth closed    )

Patti, hate for you to have to go through another surgery, but do understand how you feel.  As Steve said, there are many of us who made it just fine through the translab!  I have just started some of those vestibular exercises that Mary was referring to...I'm hoping to knock out my last bit of wonkiness, but if it ends up no better than it is today, that's ok...it's tons better than it was at times prior to the surgery - I'm very glad I chose a treatment that destroyed my compromised vestib nerve!

Let us know when you make a definite decision - best to you,

Cindy