Transtympanic Gentamicin

[debora]

I have been having severe vertigo attacks that are coming more frequently instead of getting better.  The Doctors at the Mayo told me that hopefully once the balance nerve dies off they will quit and I would probably just have unsteadiness, they said there was no guarantee that I would improve and that I could be sick forever.   I was there in August and my balance function in the AN ear was down 53%.  Having many many attacks over the last couple of months I went to a Dr that specializes in Vertigo in my town.  I stated that I didn't want surgery and he suggested Transtypanic Gentamicin to finish the nerve function off in that ear.
Has anyone had this done and how do you feel now, are you constantly ill from having the balance function in that ear gone? I realize that it is dying now but maybe it would not all die off and I would have a small amount of function left.
I am feeling quite desperate right now, please if you have had this done let me know how you are.
Thanks, Deb

[Sam Rush]

Transtympanic gentamycin,  I don't know anyone who has had it done. It is currently used for refractory Menier's disease, for vertigo that doesn't respond to medical treatment, or hasn't responded to surgery. If the hearing is already gone, there really is no down side. It will destroy the vestibular nerve, and then the other side can compensate.

Get some more opinions, but seems worth a try.
Good luck

Sam

[Omaschwannoma]

I have been experiencing for the last three years oscillopsia (bouncing vision while moving).  My neurotologist is considering a labyrinthectomy as there may be residual vestibular nerve fibers left over (removed the vestibular nerve along with AN) that are interfering with signal to brain.  He said I could be going home that day after tx, not sure if he's going to use gentamicin or sharp, pointy instruments as I haven't talked in great detail with him about this.  I can understand how a few fibers could be left over as he was intent on saving my hearing and facial nerve as best he could--unfortunately am deaf in that ear.  Yes, he told me it may not work as there are two approaches to rectify the problem.  One is retrosigmoid and has a higher cure rate vs the translab.  He doesn't want to risk csf leakage with retrosigmoid approach.  The other reason for my problem, oscillopsia, could be another tumor in the contralateral ear--albeit very rare, so is an AN though!  I'll be having my three-year MR this December to rule that one out.  I'm sorry I cannot be of any help in answering your question regarding someone having this procedure done, but wanted to let you know I too will be monitoring this post along with you.

[Jim Scott]

Hi, Deb:

Intratympanic gentamicin treatment usually involves more than one treatment, depending on the 'dose'.  From what I've read - and I have to caution you that I'm not a doctor - low-dose is preferred.  Hearing loss is not uncommon and temporary nystagmus ('eye jumping') is very common.  It seems to be a 'last resort' but in your case, perhaps necessary.  I would definitely get a second opinion before agreeing to this treatment. 

In the final analysis, this is a medical decision that only you can make and you need all the information you can find, here or elsewhere.  Unfortunately, I doubt there are many who have undergone this somewhat drastic treatment, so the after-effects may be hard to find but you've come to the right place and others may have the information you seek or can direct you someone who has it.

Jim

[debora]

Jim, Arushi, and Sam,

Thanks for your reply's,  I have decided to go ahead and have this procedure done.  Yesterday I went in and the Doctor inserted a small tube into the ear drum,  in two weeks I will go in and they inject the gentamicin you lay there for 25 minutes so the antibiotic absorbs, there is a possibility of a vertigo attack but hopefully it would be the last one.  After a couple of weeks I will go in again and if it hasn't worked the first time they will inject the anitbiiotic again.  They can do this 5 times and if after that it doesn't work then it looks like labrinthectomy    .  Arushi,  I will keep updating this post to keep you informed, hopefully this will work and it will be helpful to you and others who have balance issues.
Thanks again,  Deb

[debora]

Decided to get a dose before the two weeks were up.  I am having vertigo attacks daily now and can't live this way any longer.  The doctor shot the gentamicin into the tube he inserted in my ear drum.  Layed there for 20 minutes to have it soak in the ear and then got up to go home.  Had an attack shortly after but it wasn't to terrible. Went to work today and had a major attack, my kids had to come and get me again and I slept on and off all day.  It's better now.   
With the gentamicin they hope to jolt the nerve and stop the vertigo attacks from happening, they say you can have one last attack and hopefully that is it.  I wait one week and go back in to see how it has worked, if not good then I will have another injection, etc up to 5 treatments.
I had thought that that this would be the cure all but the vertigo can come back when ever so guess I will always have to be on my toes.  It would be great if they could stop this from coming so da-- often.
Happy Thanksgiving to all.   Deb

[Omaschwannoma]

Hi Deb,

Hope this procedure works in getting rid of debilitating vertigo attacks for you.  Before my surery three years ago, my doc explained to me why I was having vertigo attacks.  The vestibular signal to the brain is mixed.  One from the damaged vestibular nerve (AN growing) and the other from the contralateral side.  By removing the damaged nerve the only functioning vestibular nerve will be sending clearer signals to the brain and will, (over time and with vestibular rehab) learn to rewire and compensate.  Perhaps it will be recommended you sign up for vestibular rehab if you don't see better results with vertigo attacks. 

[debora]

Hi Arushi,

I am very happy to say that after the last bad attack on Tuesday I haven't had any like that again  .  So far so good.  I have an appointment for this coming Tuesday and can have another treatment if I need one and I don't think I will need one.  I hate to get my hopes up but this is the longest I have gone without a debilitating attact for a while.  I still have balance issues and sway and need to grab onto something to prevent myself from falling but this has so far been the one thing that seems to help.  Vestibular rehab didn't help and I was getting worse over the last 4 months, 3 years after radiation. Are you able to function at all with oscillopsia, what types of treatments did they recommend to you?  I pray that you find someone to help you get relief from this.  Take care.  Deb

[Omaschwannoma]

Hi Deb,

I regress backwards from three years ago after surgery by using a cane during my walks outside, malls, etc.  My legs will give out and the "third" leg helps prevent falling.  It's brain fatiguing, the oscillopsia that is.  I'm okay inside where things are close up, but outside, large areas is where I have much difficulty.  Also have much difficulty while lifting heavy (not too) objects and carrying them, my yoga routine (power flow type), running, or just anything strenuous.  So, I've learned to adapt. 

In a week I'll be having my 3-year MR to rule out tumor on contralateral side or regrowth as a 4 months time span since hearing test a mild hearing loss of high end and constant tinnitus in good ear.  If nothing shows on MR labyrinthectomy in AN ear has been suggested.  We shall see---WEEEEEEE!

[debora]

Bummer, I was going to post on Tuesday and say that it had been two weeks since I had my last vertigo attack when I had one Monday night and then Tuesday.  Wed, Thurs and Friday was dizzy.  Went in today (Friday) and had another treatment, guess I'll have to wait and see how long this one works.  At least it worked for almost two weeks, I am scared to death that I won't be able to work or function..........................
Deb

[Crazycat]

I was treated with "gentamycin" during my surgeries. It is mentioned in the operative reports for both the shunt installation and the tumor resection.

Here's the link to the operative report I had posted:   http://anausa.org/forum/index.php?topic=5342.0

Paul

[debora]

Paul,

Did you have any hearing that they were concerned about preserving?  The Gentamicin is known for causing deafness.

This last treatment doesn't seem to help as much as the first one did, I am unsteady and had another Vertigo attack while  driving and had to pull over and call hubby and my son to pick me up.  I sat in the parking lot of a gas station and cried I am so scared that I will be like this forever.  My social life is pretty much gone and I am just trying to be able to work at this point.  I can have 3 more treatments maybe one of them will work.
Deb

[Crazycat]

Deb,

  No. Left side is completely gone.

[LN]

My mother is 83 years old and has recently been diagnosed with an Acoustic Neuroma measuring 3 X 4.  Another MRI was done six months later, AN measuring 4 X 8.  Her recent MRI performed 6 months later measured 7 X 8.  She has daily dizziness with poor balance everyday with little relief.  Her doctor has prescribed using cyberknife and if that does not lessen her dizziness he would inject Gentamicin into her ear.  She has poor hearing her entire life, though this ear with the AN is her better ear, but she is willing to lose hearing from the gentamicin to relieve her symptoms.  Has anybody had this type of treatment combination and if so, what results did you have.  Thank you for your response.  We are very worried.  LN

[Omaschwannoma]

LN,

I'm assuming the AN your mother has is 7mm x 8mm?  If her tumor is in the "mm" range perhaps she can do the "watch and wait" and in the meantime do vestibular rehab to deall better with the vertigo and nausea.  I cannot comment on having the same procedure as your mother as I had surgery three years ago.  I have had problems ever since with oscillopsia (bouncing vision while walking), nystagmus (eyes moving back & forth), balance went from 80% to 65% in three years, vertigo, nausea, seizure-type activity (felt l was ten-feet tall or the ground moving away from me), hyperacusis, headaches and problems of my legs giving out so started to use a cane.  My MR showed inflammation and possible hemorrhage in my AN ear. 

My neurotologist, Dr. Antonelli, recently wrote in the newest ANA Newsletter about residual balance problems, gentamycin treatment and or a labyrinthectomy.  I recently went to him where he performed (ear canal approach) both.  The hearing nerve since surgery did not work so losing my hearing wasn't an issue with me.  I learned to adapt in the three years to single sided deafness.  Now with your mother being in her eighties, falling due to vertigo would not be good.  I understand the doctor wanting to use radiotreatment due to her age, less recovery than with surgery, but losing the hearing in the good ear will have to be thought seriously on by her. 

I am doing so much better, and due to rehab (2 x's week) and home exercises I am very happy with my recent procedure.  Shame it took so long as the doctors I saw in my home town were misdiagnosing me.  It wasn't until I saw my neurotologist at recent Symposium where he took over for me.