Minieres Disease surgery

Im glad it went well. What is a CSF Leak?

One of the risk is they can cause a cerebral fluid leak.  The Dr nicked my dura which caused the leak and I had a reaction to the packing.  Which in turn caused mastoiditis.   

M doctor told me that the shunt surgery isnt guaranteed to work. Im so concerned because I do not want to go thru this twice.

This doctor is my 2nd opinion doctor. I am on diuretics, and Betahistine. Also just had my 2nd steroid shot yesterday. He just wants me to know my options. I have changed my diet watching my sodium intake which is very hard quit drinking coffee and  I dont drink alcohol,and trying to reduce my stress levels. My doctor just wanted me to know that the next step probably will be surgery. Believe me I don't want surgery but my vertigo and tennitus is so bad I cant sleep which triggers the vertigo. Im afraid to drive anywhere so my quality of life is shot. I am trying to decide which is my best options so  I thought I would try this forum and ask people who have had the surgery. My ENT that I saw actually referred me to this Doctor. I am open to all suggestions on what to try next.

What have you done? have you had surgery?

OK...thanks much for clarifying your treatment history....now that we know you have tried other treatment protocols let me ask you these questions:

1.  what dose of diuretics are you on?  Some patients require 50 or even 75mg/day to notice less vertigo. Have you tried a higher dose?

2.  What dose of betahistine are you on and how long have you been on it?  16mg/3X day is usually the minimum dose to be effective against vertigo although many folks need higher doses.  Have you tried higher doses?

3.  how long have you been on betahistine?  It usually takes 4 or more weeks before you notice improvement.

My belief and my neurotologist's belief is that all benign treatments should be exhausted before any surgery.  If you have reached that point, Marie, then several surgical treatment options exist.  I have NOT had the Sac surgery so I can not comment on that.  I have, however, had Gentamycin injection surgery which was totally successful and I highly recommend it.  If you want more info on this type surgery I'd be glad to tell you more about my experience....just let me know.

GOOD LUCK in your decision, Marie.  Whatever it is I wish you the very best.  

I am taking Hydrochlorithyazyde (sorry if spelling is wrong) 50 mg. Betahistine 16 mg.3xs a day. Been on meds for about 2 months. I just had my second injection yesterday is that the Gentamycin injection that you are speaking of? I believe thats what i had with steroid.Yes please tell my about your experience on your experiences thats why i joined a forum. Im all new at this and need more information on peoples experiences. So your injection has lasted how long and how often do you need to get them?

Thank you Tanney.

Hi Tanner, what is the gentamicin injections? Ive had a stapadectimy over 20 years ago and now it doesn’t work. Doctor thinks it’s loose and has caused a tear or hole in my ear. I’m choosing exploratory surgery in July , dr says I may loose the rest of my hearing in that ear but to me if it stops the vertigo it’s worth it. My hearing has dropped so much already in that ear. Maybe from my strokes I don’t know! Just know I have to try something can’t live like this anymore. Not knowing if your going to get vertigo or not! 

Marie & Chris.

Gentamycin injection is a type of surgery that along with any surgery should be one of the last things MD sufferers should attempt.  Below are my experiences with it.

I had gentamycin injections 40 years ago when it was a relatively new procedure in the USA  for treating vertigo from MD.  

Gentamycin injections are administered exactly like steroid injections are, that is, it is administered in the neurotologist's office, via needle, into the middle/inner ear.  The procedure itself takes only a minute or two but you continue laying on your side for about 20 minutes until the injected liquid  penetrates into the inner ear canal.  You then leave and go home....exactly like the steroid injection.

Unlike the steroid injection which has the objective of reducing inflammation and fluid buildup within the inner ear and is non-toxic, the gentamycin injection (which is an antibiotic) is toxic to the balance nerve.  This fluid will destroy the balance nerve in your affected ear.  It's this dysfunctional balance nerve which sends incorrect signals to the brain that is the cause of vertigo in MD patients.  Once the dysfunctional balance nerve is eliminated, theoretically the vertigo disappears.  This procedure often requires 2 or 3 injections spread over a month or so to be fully effective.  Statistically about 90% of MD sufferers who undergo this treatment have full remission of vertigo...that's an amazing statistic.  This treatment does NOT eliminate tinnitus or ear fullness though some patients report that these symptoms are less after the procedure.

There are two serious side effects to this treatment.  One is balance difficulty following the treatment.  Because the balance nerve in affected ear has been destroyed most patients will have some difficulty with balance following the treatment; however, this is short lived.  The balance nerve in your good ear (everyone has two balance nerves....one in each ear) will eventually assume the full duty of balance (along with the eyes) so that within 3-5 weeks after the treatment the vast majority of patients will have regained almost full balance. For those few who do not regain full balance there is vestibular rehab which will train the eyes to assume more of the balance function.  Vestibular rehab is very effective in treating imbalance. The second side effect is possible additional hearing loss from the treatment.  Gentamycin can affect the hearing nerves in some patients.  Therefore there is the possibility of losing some or even significantly more hearing.  On the other hand there are patients (like me) that lost NO additional hearing and in fact I have recovered some of my hearing over the years.  But because additional hearing loss is a real possibility this treatment is usually not done unless patient already has lost much of their hearing in affected ear.  This side effect should be discussed at length with the surgeon and evaluated on an individual basis.

Now keep in mind I had this treatment 40 years ago and I had no negative side effects.  I would like to think that this treatment done today would be safer with less complications....but of course you never know.  So, even after 40 years I have NOT had one vertigo attack in the treated ear!  That's amazing!  I have, however, developed MD in my other ear so that I now have bilateral MD.  Fortunately betahistine has been effective for me in controlling vertigo from that ear.  I probably would not have gentamycin injections into my second ear because of the vestibular (balance) problem I would face not having both balance nerves.

My recommendation is that if you decide to have this treatment you seek out the neurotologist with best reputation in your area who has had a lot of experience administering the liquid.  It's a simple procedure but one that should be done only by qualified ENT doctors.

So, the bottom line is this:  if all benign treatments (diet, diuretics, betahistine, steroid injections) have failed to eliminate your MD vertigo, then, by all means, seriously consider this treatment.  It saved my life...hopefully yours, too.  GOOD LUCK!!!

How about Marijuana? Have you tried for any smptoms?

CBD oil from hemp does a good job to relieve anxiety and calms nerves that can cause an attack. I guess marijuna would do the same but you get THC and a buzz that is not for me.

I am a little leary of that surgery. My doctor said I probably will feel off balance the rest of my life with that. How you feeling? How is the recovery process after surgery?

I have had no balance issues after surgery and the recovery was non eventful. I did go off of my low sodium diet for about 3 weeks and the ear fullness came back. I also notice the barometric pressure affects the fullness. Even a small change down will cause a fluctuation but it is not a show stopper.