gentamicin injections.....questions

[Nancy Drew]

Hi!

I had GK Oct. 21, 2008.  I have never had any balance problems until recently.  I had a balance test the end of January, and it said my hearing nerve was compromised 5%.  The doctor said "normal" is 0-20%.  I had another balance test the end of July, and my hearing nerve is now compromised 71%.  My problems with balance include hitting door jams, getting off balance when making sudden turns, a couple of minor falls, walking like a drunk, vertigo and tripping.  The doctor suggested a conservative approach at this time.  He said it is possible that the balance problem will resolve itself.  He said if the balance issues get to a point where my quality of life is affected greatly, then he would suggest gentamicin injections to kill the balance nerve.  He said there is a risk of losing hearing with these injections.  I have good hearing in my AN ear so it would be disturbing to lose my good hearing.  I guess I am just in the wait mode to see what happens.  It is frustrating dealing with the balance issues, but I am not sure I want to take the risk of losing my hearing.  My AN doc said he has had good success with the gentamicin shots so far, but there is never a 100% good outcome.  Has anyone out there been in this situation?  Any feedback would be helpful.

Thanks,

Nancy

[FrankinCA]

Sounds like you and I are having very similar balance issues.  You might read my other post.  I am getting better at getting through a door but still really tired of door jams.  It is like having a friend that is always hitting you in the shoulder.  I have lost hearing in my AN ear so I realize the balance must be gone too.  I hate my office with uneven stone floors and lots of doorways to get through.  Nobody at work knows I have an issue and no one has said anything.  It is only my obnoxious friends that ask what in the world is wrong with me when I don't walk straight.

[Nancy Drew]

Did you have any balance problems before Gamma Knife?  I did't have any until about 6 months after Gamma Knife.  Have you had a balance test?  What does your doctor say about your balance issues?  Thanks for your reply, and I hope your balance and hearing issues get better.  Nancy

[Patti UT]

I am trying to find info on the injections as well,  see my new thread "gentamicin injections"

I had middle fossa and my balance was terrible right after surgery, to a little better over the course of 2 years then started getting worse.  The door jams are nothing,  I tend to take terrible falls and have had several significant injuries, knees, ankles, spine(buldge disc) wrist tendon tears, you name it.  I just hit 50 and feel like I'm 90.  I can't keep getting hurt like this.  I don't want surgery for AN #2 so would love to do CK & injections, but need that nerve outa there.

patti ut

[Nancy Drew]

Hi Patti,

Sorry to hear about your balance problems.  They sound serious since you have had some significant injuries.  What does your doctor suggest?  As I recall, my doctor said the gentamicin injections would be a last resort.... only if the balance issues greatly affect my quality of life.  I am not at this point and hope I won't be.  In my case, I think it is just a matter of accepting that I have these balance issue (I'm trying) and in the meantime hoping that my body will learn to compensate.  The doctor said the risk of these injections is that you can possbily lose "all" of the hearing in the ear.  I have really good hearing in my AN ear so I don't want to mess with it.  I wish the best for you.  You have been through a lot.  I hope you will find your answers soon.  In the meantime, be careful.

Nancy

[daria]

Hi Nancy, Have you tried any sort of balance exercises?  I have had amazing improvement in my balance and dizzyness by challenging my balance through exercise. Many balance exercises will actually make you feel dizzy but I have found that with continuous practice and hard work you will see the results. After my surgery I was constantly bumping into things and had a very difficult time walking straight especially when there are a lot of people, noises and traffic around. The balance exercises have helped in all of these things.

[Nancy Drew]

Hi Daria,

What kind of exercises do you do?  I am in the process of getting vestibular therapy set up.  Some on the board say it is helpful.  Last weekend I forgot my trekking pole when I went on a hike, and I could really tell a difference in my balance.  I do fine when I look down at my feet, but if I look up or turn around while walking I have problems.  I had a fall when I looked up, but it was a "graceful fall".  Didn't hurt myself.  I try to walk in a straight line, and I do good when I concentrate.  Walking with my eyes closed is a nightmare.  I am sure if I had some exercises to do I would do better.  I don't get dizzy very often which is good.  But, I do find that my balance gets way off when I am tired.  Thanks for your reply.  Hope your exercises continue to go well.

Nancy

[daria]

Hi Nancy, Try any sort of balance boards. There are some that are square (the goal being to not tip from side to side), others are round where you can practice controlling your movement clockwise, then counter-clockwise. Also there are literally hudnreds of different exercises you can try on a bosu. If you've never heard of it, it is like an inflated ball which has been cut in half. At first, just try to stand on it. Later you can try to squat on it or do plank position with your forearms braced against it. I think we will always have difficulty walking with our eyes closed now so don't worry about that.On a gym ball, you can try to sit, keep your back straight and look straight ahead. Gradually try to do crunches on it.  When you walk try to move your head gently to one side-focus on something that you are walking toward such as a tree. At the beginning all these exercises will require a lot of concentration. Rest is very important to brain/vestibular issues. Listen to your body and get plenty of it. My balance was really horrible and since I've found so many ways to exercise geared toward balance and strength training I have improved beyond anything I expected. A lot of these I found on my own in exercise books or online so if you need more ideas-just let me know. I have boatloads! Good Luck!

[Nancy Drew]

Thanks Daria.Lots of good info.Sounds like you have really put a lot of good work into exploring ways to improve your balance.I'll give some of those exercises a try.I start vestibular therapy tomorrow.I feel like I am already doing better now that I have accepted the fact that my balance nerve has been affected.Wasn't expecting it, but then again....did any of us expect to get an AN?Guess you have to do the whole making lemonade out of lemons thing with these ANs!!!Best wishes to all traveling down the AN road to wellness.

[sgerrard]

Good luck with the therapy, Nancy, I hope it goes well. With ANs, you have to expect the unexpected. Stay positive.

Steve

[daria]

Good Luck Nancy, The more you put into your balance therapy/exercise, the greater your result. Keep us posted on your progress. Daria

[Nancy Drew]

Thanks for the well wishes.  I had my first therapy session last week.  Seems like I have a lot of problems with tracking.  I wasn't able to finish the initial evaluation.  I got really dizzy and had to sit out for some of the evaluation.  Going again this week.  I am sure something good will come from this...just have to hang in there.

Nancy