endolymphatic sac decompression

I had the surgery done in October of 2016.

It is way more serious than they make it sound. The recovery is very hard. I had vertigo after the surgery. One month later. My hearing got much worse.

I would try everything before I went that route. Have you tried anti-virals? 3 per day for months. at least 3 months?I would try everything before I did that surgery if I were you.

Just my opinion.

 

I am currently a little over 2 weeks post surgery. I actually had a mastoidectomy and shunt - so not exactly decompression but I believe the experience is basically the same. Jury is still out on if it worked but I’ll echo Mac above - it’s a simple outpatient procedure for the doc but so far there’s nothing simple about recovery. My incision has healed well so far and no known complications but I’m still having issues here. No major attacks yet but things aren’t stable.

 

So sorry that you need to contemplate this procedure. May I ask which doctor you are seeing? My biggest issue is hearing, too, so I am very interested in how this may help. May I also ask if mainly the lower frequencies are involved or all of them?

Thanks,

SG

 

You guys might want to read up on the procedure before making a decision. It’s my understanding that it mainly is done to reduce/eliminate severe rotational vertigo. Once I’m through the recovery process, my doc said I can expect my hearing to be same as before surgery or *slightly* better but that was not a big goal here nor is it an expected outcome to fix hearing.

Right now my hearing is significantly worse than before but I’m told that’s due to the blood/fluid from the procedure that has to be reabsorbed and takes around 4-6 weeks.

Have you guys tried hearing aid(s) yet? I resisted for years but got one last summer and love it. Also relieved part of my loud tinnitus and often fullness feeling. I look forward to being able to use it again.

 

The surgery is no joke. Last resort. It does not help your hearing. Not intended to. Bizarre he would say that.

I would try anti virals. Full blast. Don’t listen to him. It’s worth a shot.

He makes around 50k off that surgery. It’s his gain. It’s a very tough recovery. Trust me.

 

I had it done in 2001 on my left ear and it took about a month and a half to fully recover but I was a lot younger then. It helped tremendously with my vertigo in that ear with maybe one or two small episodes per year and my hearing in my left ear has not gotten any worse since then. Fast forward to 2015 the disease starts in my right ear and progressively get worse to where I’m having weekly attacks. Lost my job this past November due to missing so much work. So I had enough and got the surgery done December 26. I’m a little over a month out and I’m still getting some small attacks that only last for short period of time. Doctor claims I’m still healing internally. No more fullness and my hearing has seems to have stabilized. I started valtrex this past Saturday and I hope the combination of the surgery and the antivirals will eliminate issues completely. I wanted to try the antvirals first but I needed to get back working full time before I go broke,that’s why I opted for the surgery first. I think everyone reacts to the surgery differently.

 

I totally agree with you Mac on all counts except the 50k thing. I promise you the doctors don’t pocket that much from this procedure. I’m married to an ENT.

 

Haha. You are right. They charge 50. Blue cross sends 15. The hospital gets the lion share. The doc does ok.

Not saying don’t do this surgery. Just make sure you are doing it for the right reasons. I was crawling into the table. Vertigo almost every day. It is designed to reduce vertigo. Not eliminate it.

Good luck either way!! I know it’s scary.

 

Sac decompression and/or shunt surgeries are used to eliminate vertigo. They are not used when a person has infrequent vertigo or has their vertigo completely under control. The surgeries are not used to reverse hearing loss, stop tinnitus or eliminate aural fullness.

If you aren't having any vertigo, I'm surprised your doctor would even consider sac decompression surgery. There are risks with this surgery and in my opinion having sac decompression in hopes it will improve your hearing is not worth those risks. What hearing you have left could be destroyed, there's a chance of facial paralysis, spinal fluid leak and half a dozen other things.

I agree with those who say it's not an easy surgery. For me, it was supposed to be overnight in the hospital and back to work in a couple of days. I had the decompression and shunt. I woke up from the surgery with violent vertigo and it continued for four days, nonstop. I was in a room on the fourth floor. If the window could have been opened, I probably would have jumped out. I had mild hearing loss before the surgery and profound after. I was sent home five days after the surgery because it was Christmas Eve. The vertigo finally stopped, but not for long. I started having vertigo every day or every other day. The attacks weren't as violent as before the shunt and the spinning was slower, but they were more frequent. I usually had more than one attack a day. I couldn't go anywhere by myself. I never got any of my hearing back in the shunted ear. I had double vision for a couple of weeks after the surgery. I never felt stable. When I turned my head it took a few seconds for my vision to catch up to the head movement.

Eleven months later I had a VNS and later I became bilateral. No way would I ever have any kind of surgery on my other ear.

You have to do what you think is right for you, but in my opinion, it's highly unlikely that the sac decompression will do anything to improve your hearing.

The hearing in my VNS ear is so bad it can't be aided. I do wear a hearing aid in the other ear. I have horrible distortion and the hearing aid does nothing to help with that.

All the best to you, snuka, with whatever you decide to do.

 

I had the surgery roughly 4-5 months ago.

Prior to the surgery my ear was "cycling" - pressure would build, tinnitus would build, until finally I would have a serious vertigo attack (one that literally brought me to my knees for several hours, with vomiting, etc.) there would also be medium to small vertigo episodes in between the really bad ones.

My recovery wasn't bad at all. I had the surgery on a Friday morning, and they sent me home that evening. Initially, they had said I would probably spend the night but I refused to take morphine for pain afterwards which may account for releasing me that day. They gave me non-addictive pain relief and it was tolerable. I took the following week off of work and by Wednesday of that week I felt fine. The biggest relief for me was taking the pressure bandage off of my head the day after surgery. I was back to work the next week and felt almost normal, except for being slightly tired due to having to sleep in a different position due to the surgery.

Fast forward to today - my ear does not "cycle" any more, it is now constant pressure and tinnitus (which varies daily) I have had several "bad" vertigo episodes since, along with medium and small ones as well.

Did the surgery help? I honestly don't know. I have been on the JOH regiment for a little over eight weeks now and my surgeon put me on Beta-Histine a month ago. I feel better overall and the "bad" vertigo doesn't seem nearly as frequent as it did prior to surgery.

Is that because of the surgery? The JOH? The Beta-histine? ................Unknown. I like to think it's a combination of all of them.

Whatever you do, I hope it works out for you!

 

snuka,

Have you searched posts in the archives regarding sac and shunt surgeries? Lots of good stuff there from former member on the subject, some good and some bad.

 

I would be careful if the doctor he is saying he has done this surgery thousands of times.

Less than 20% of all MM sufferers ever have surgery.

I dealt with one of the top doctors in NYC for MM (who had 25 years experience) and he had only done around 100.

Thousands seems suspicious.

 

Please read my past posts! I had the endolymphatic 'shunt' (not sac) surgery in 2012. Had a couple of vertigo attacks the next few days--but mild. Have 'not had one since'!!
I was told I would 'never have one'.

Later--with dizziness/head pressure going on, I was so concerned I was 'on the verge' of having an attack--and my doctor said--I would not--but 'if--and a big 'if'--I'd have vertigo again and so far, have not!!

I have the ongoing mild balance issues--wear bilateral hearing aids and one ear is bad and the other one has worsened but without the aids I couldn't hear much at all. I did to vestibular therapy and I recommend it--it's a big help now and down the road. Head pressure and tinnitus are a big issue (no pain) and alot of my tinnitus is 'musical'--a tune over and over again. Honestly, I'd rather have a 'ringing sound or a buzzing sound that that!"

Anyway, the shunt surgery itself was very little discomfort--I did spend the night and do have a well known neuro-ent in the Midwest who did my surgery--and specializes in the treatment of Meniere's. He does 'not believe in the anti-virals' at all!!

But I got my primary to try me on them--and they didn't help. So, everyone has their stories--just do what you finally decide to do and we wish you the best of outcomes.