Endolymphatic decompression surgery

FWIW, I had tremendous success with the shunt surgery (right side). I had severe vertigo issues (~1/week), so I had the procedure done in 1991 when I was 11 years old. Since then, I've had one vertigo attack. I still have hearing loss and tinnitus, but it stays pretty consistent.

Unfortunately, I went bilateral in 2002, but fortunately, vertigo has never been a symptom on my left side. Just tinnitus, fluctuating hearing loss, etc. Good luck with whatever you decide!

 

GLA, you don't get vertigo being bilateral? How is your balance? Do you feel wobbly?

Lisa, the shunt surgery is a good first step, although you might want to wait and see if your symptoms resolve by themselves first. Personally, I had two shunt surgeries and neither gave lasting relief. However, I know many people who had it and never looked back- got their life back.

 

No. At least not what I consider vertigo (unable to walk, uncontrollable vomiting, etc.), other than the one episode I've had since then.

As far as my balance, it's less than stellar, but I manage (I can drive, walk unassisted, etc.). I'd definitely consider myself wobbly, though. Sometimes it takes me a little while to get calibrated properly.

 

Wouldn't the endolymphatic duct blockage surgery in Montreal be even better?

 

Decompression and shunt are almost the same thing. They are usually done together. Decompress the endolymphatic sac and place a shunt for the fluids. One isn't better than the other. If they are already in there, might as well have the shunt placed, too. The shunt/decompression may or may not help with your hearing. Most surgical treatments for MM are to control vertigo.

dwyane, I'm very curious about the duct blockage surgery. It's very new. Have you, or anyone you know, actually had it done? It looks very promising. I wonder if anyone is doing it in the USA yet, or is it only the one guy in Montreal?

GLA, I'm fascinated by you being bilateral and having no vertigo! It gives a girl hope. Do you have all the other MM signs in both ears? Have you lost your hearing?

 

On my right side (shunt side), I had some permanent hearing loss from the vertigo and aggressive nature of the disease. I've lost some hearing since the surgery, but considering it has been 24 years, it hasn't been much. I'm moderate/moderate-severe loss depending on the frequency. I do have tinnitus and occasional fullness feeling.

On my left side, I have fluctuating hearing loss, fullness, tinnitus, etc (but never vertigo). My hearing loss is mild/moderate depending on the frequency.

My hearing is far from stellar, but I manage to get by without hearing aids. I feel that that might change soon, though.

Also, regarding bilateral MM patients and vertigo....I keep in contact via email to a former poster here who is also bilateral, and I'm not aware of him ever having vertigo. Severe imbalance, fluctuating hearing loss, fullness and all that stuff but no full on rotational vertigo.

 

GLA: That's great news for you. I'd take hearing loss over vertigo any day. Do you feel like your imbalance has gotten better since you first went bilateral? Also, why no hearing aids? I'd imagine they would greatly help you. Your story is interesting.

 

I had the surgery in June 2014 after a gentamycin injection didn't help. I had periodic vertigo bouts for several months afterwards and i would say that it took 3 months for my vertigo to fully stop. However, that only lasted about three months and the vertigo returned in late January 2015. After I had my first drop attack in mid-March, we got more aggressive with my treatment. I had two gentamycin injections and i think that the second one did the trick. It has been several months now without a major vertigo attack although i have had some minor ones.

 

After the surgery, my hearing in that ear demonstrated very mild improvement short term. As I said in my other post, a lot has happened since then so my hearing is now a bit worse in that ear.

 

I had decompression (no shunt) surgery last December. Prior to the procedure, I was having drop attacks almost daily, and regular dizzy spells throughout most every day. Since then, I have not had a drop attack. I have experienced a couple of less severe vertigo spells, and a small handful of dizzy spells, but nothing like before. My Dr. indicated he would do the shunt as a second procedure if the decompression alone did not work satisfactorily. There is concern that the shunt can close up over time, so he does decompression only first.
To this point, I would rate my surgery as a life changing success. My only regret is that I didn't do it sooner, because it has truly given me my life back. I still have fluctuating tinnitus, hearing loss, and sometimes very painful pressure behind the ear, but I will gladly manage through these if I can remain vertigo free, which you can't manage.

 

Lisa, I think I have less fluctuation since...not that it has gone away entirely. I am very barometric pressure sensitive. I did score 100% on speech discrimination test 8 weeks after surgery which I had never done or come close to before. As I understand it, the decompression allows the sac to fill up more so that the balance canals don't get so much pressure and inflammation, which theoretically should help both balance and hearing.
They did a dehydration (caloric?) test on me prior to deciding on surgery (don't remember the name now) that I responded well to. Doctor indicated those who respond well to it are the best candidates for decompression surgery, which is when I decided to pull the trigger. Hope this helps.

 

My balance is bad some days and better (but not good) on others. As far as the hearing aids go, I am able to talk on the phone, watch TV, etc without having to work too much, so I've just never felt the need. Like I said, though, I'm borderline, so I'm sure I'll end up with HAs sooner or later.

 

GLA: Are you able to walk in the dark or ride a bike? I know these are weird questions, but I'm curious.