shunt surgery data

Hi again. I posted on this thread and would like to update my answers. Things aren't so bad now and as I look back at my reply, I see I sounded like a whiney brat!! Really, I'm NOT!! I promise.
Anyway, my symptoms are slowly improving. Still get a little wobbly if I turn my head the wrong way or move too fast. Have bad tinnitus which gets really bad when I expose myself to loud noises. Wearing an ear plug helps with that.
Worst symptom.......I'm totally deaf in the ear that had the surgery!! Bummer!!! Saw the doc and he doesn't know why that happened. Scheduled for a hearing test in NOV and then the doc will discuss the BAHA device with me, if I am a good candidate for it.
So right now I could say I'm glad I had the surgery except for the hearing loss.

 

I had the endolymphatic sac decompression in 1982 and it lasted 20 years. I would say that at least 95% of the time I functioned just fine. In about 2002 - 2003 Meniere's came back with a vengeance. I tried the Meniett for about a year and it worked for me just great. Finally in 2005 I had a labyrinthectomy. WHAT A LIFESAVER!! I finally was able to get my life back and thank my doctor every day for doing such a fabulous job!! The labyrinthectomy also got rid of most of the tinnitus. There are days I may feel a little "off" but nothing that stops me from daily routine. Never give up even though sometimes it feels hopeless and frustrating. If you have any questions please feel free to e-mail me. Lindy

 

Hi Ebo, I had the sac surgery done a 2nd time. I felt better when I woke up right after the surgery! Turns out the doc said I had a huge rocklike piece of scar tissue pushing right where it shouldn't. I had a fast recovery. My first surgery I was 3 years symptom free, not so long the 2nd, only about 4 months (but completely symptom free). Then I started using the meniette, and the combination was great. Mostly no symptoms at all. Unfortunately the last month I am having major problems, trying a new tube for the meniette next week and hoping. Good luck to you. I have no regrets having both surgeries. I wish he would do it again, I am convinced it is just scar tissue growing back again but I know the odds of helping go down with each surgery, or so he told me. But everyone's so different! Lisa

 

I had shunt surgery 1/2004 and have been great ever since. I still have occasional dizzies and keep a strict low sodium diet but the surgery was well worth it for me.

 

I had the surgery yesterday. I feel pretty good, still a little off balance and some queasiness. It didn't hurt at all until today. I think it's a little more tender from moving around and chewing to eat. One thing I hate so far is that any movement makes my tinnitus grow louder and flutter. If I am very still and not eating it's mostly it med loud state but if I move my head left or back it grows loud and fluttery. Moving right or forward actually lessens the noise. ??? I hope this goes away soon. Did any of you have that happen?

 

Leeloo,

I had an E. shunt in May 05. I recovered very well & quickly. I do remember being light-headed when getting up to do something, but was determined to get back to norm, quickly. Loud child voices also bothered me during this recovery period. I also remember the tenderness in the ear area when trying to chew. It almost put me in a state of feeling like passing out. This went away quickly. The worst part about the whole recovery was the glue that they sealed my incision with. It drove me crazy!!! Until it fell (or I picked the last of it off.)

I was back in full gear within 3 weeks (took 2 weeks off of work). Had one fantastic vertigo free year, regaining all my hearing loss back in that bad ear. Once again I was able to do all things I wanted to do, short of flying on a plane. (I wasn't quite ready to take a chance with that one).

Good luck with your recovery, and hope it works for an eternity!
O2B Witty aka O2B Vertigo Free

 

Hi guys,
I've had symps of Meniere's since May 2004. My initial symps were pressure and pain, which we had a hard time figuring out. Unfortunately, my wife was diagnosed with metastatic colorectal cancer approx. 6 mos. later, so everyone thought I was stressed out. However, I have always had excellent balance and stress management (college athletics, surgery residency), so I knew that something anatomically wasn't right. Thankfully, I had sensorineural hearing loss, documented on a audiogram, and then tinnitus that wouldn't resolve after that. After being told "You need to see a neurosurgeon for a 5th nerve decompression", luckily, I found someone who said "Your inner ear pressures are up - I'll prove it!" ECOG's documented the endolymphatic hydrops, thus the beginning of my education about this dreadful disease. The pressure and the pain became incapacitating, so I elected to have my first endolymphatic shunt Jan 06 - Felt better for about 3 - 4 months, and then the symps returned, this time with definite vestibular disturbance. I felt as if I was in another time zone or something. The sensation was really wierd, but I was fortunate that I didn't have bad rotational vertigo. The symps were classic - increased pressure, followed by loud tinnitus, hearing decreased, and then the 15 - 30 minutes of "wierdness". Again, I felt this meant the disease was progressing, so I elected for 3 gent injections. This helped a little, but didn't help for long. Therefore, this led me to a second opinion, more testing (ECOG .6, VEMP completely obliterated, and still good otoacoustic emissions) which confirmed the diagnosis, and then revision shunt surgery 2 weeks ago. Findings were that I needed more bone removed from around the endolymphatic sac, and that the anatomy was distorted (classic anterior sac, as described by Paparella, et al.).
After 2 shunt surgeries, I feel like I've been through the ringer. I can say that so far, even tho I still have a lot of fluid in my middle ear, I'm still having the Meniere's episodes, but they are nowhere near as painful. Hallelujah! My thoughts after two surgeries are as follows:
1)Make sure that you are operated on by a board certified, experienced neurotologist.
2)As a patient, this seems to be a disease of the inner ear. The cells go haywire, making too much fluid. The increased fluid and pressure leads to destruction of the hair cells, which leads to hearing loss and tinnitus, and if left alone long enough, the increased pressure gets into the semicircular canals, causing the vestibular disturbance. This, I think, expains why shunt surgery may offer some relief, but doesn't inherently cure the disease.
3)To cure this disease, we are going to have to come up with something that "kills" the inner ear cells. Gent does this somewhat now, but with the risk of hearing loss. Someday we''l find a way to decrease the fluid production in the inner ear. I think this also explains why the gold standard for cure is a labyrinthectomy, which effectively removes the diseased organ.
4)If you are truly bilateral, then I think that one is often faced with a dificult life choice - live in misery with your symps, or take a chance for a "partial ablation" with the gent, depending on your tests. Try to be as objective as possible, and if your MD does not have ENG, ECOG, VEMP, etc, find one that does.
5)Do not settle for mediocrity, and keep digging till you find someone that will listen. This is a very debilitating and disabling disease. As a surgeon, I felt that I visited docs that didn't appreciate how much this can interfere with your daily activity level and your very soul.
Hope these thoughts are helpful. I think that shunt surgery, done properly, certainly has its place in the treatment of this awful disease. I would have it done again, given the choice, for my particular circumstance.
Hoopndoc

 

Good words Hoopndoc. Thanks for that

 

Hi Ebo, when I had my 2nd sac surgery I felt better when I woke up from surgery! The doc said rock like scar tissue was pressing where it shouldn't have been. I felt GREAT for 2 months,then some dizzies which scared me, but when I added the meniette into the mix life was very good for well over a year......I just had a new tube in for this and some more scar tissue removed. If I could do this every 2 years to feel good I would. The surgery is not so horrible to recover from, good luck. Lisa

 

I had my shunt surgery in May, 2000 and it worked well for 6 years (after it kicked in). My last post-op checkup with my surgeon was in August, 2006 and he said the shunt would never need replacing and the only thing that might happen was that I could "overwhelm" it with salty foods. (I'd been having no symptons). Well, oddly enough, in October, I started having multiple attacts and am having a hard time functioning, as I've posted on other boards. I think what was bad was that I was lulled into believing I was "cured". I also know that I did not keep to my low salt regimen so maybe I did overwhelm the shunt. But for the last 3.5 months I've been suffering a lot and no amount of dietary restrictions or anything seems to alleviate it. I'm going to ask here but also post elsewhere -- what experiences have people had on the Meniett device? I find this intriguing because lately my attacks seem to also be highly connected with a change in the barometric pressure.

 

Removing scar tissue was the answer to my first sac revision surgery....I actually felt better when I woke up in the recovery room. I'd also suggest to anyone who hasn't had full relief to consider adding the meniette into the equation. I dont' think I would have gotten the relief I did from the 2nd surgery without it. It cleared up those extra symptoms for me. Sometimes it's a combination that works. Lisa