Brief poll on Endolymphatic sac surgeries

Hi Jeff, after suffering with MD for 4 years, I had the endolymphatic sac decompression with shunt in 2020. My recover was a little slower than some. I was off from work for about 3 weeks. After the surgery I went 14 months without vertigo but then it returned with a vengeance. The vertigo was worse and lasted longer. I had vertigo every 7 days or so for about 3 months and then it stopped again. I have no idea as to what brought it on or why it stopped. It's now been around 11 months since a vertigo attack. I am glad I had the surgery as my life before it was far worse with vertigo attacks only days apart. The good news is that the surgery did not have any negative effect on my hearing. I had lost hearing due to MD but it's remained the same without any additional loss after the surgery. My main issue now is the continual feeling of motion even when I'm sitting. I had that before the surgery and it is worse now. I hope this helps.

 

Sac Decompression without stint back in June of last year.Surgery went well.Vertigo is gone has of now.Hearing in my right ear did get worse .But,I had already started wearing hearing aids back before my surgery and they do mask the ringing /humming during the day when I’m wearing them.I was at the end of my ropes with Vertigo and was worried I would loose my job.So I did read a lot of negative and positive results.Found a new ENT doctor and happen to go see him on a day when I was having a episode and he recommended the surgery and told me he had very good results.I had already had several test and had been dealing with this for over 15 yrs and had got worse the past couple years.Figured we would try surgery before going the last thing of loosing everything in my right ear..Good Luck and definitely do your research..

 

Hi Jeff - I had the sac decompression about 3 years ago and would recommend that over a shunt. Doctor spent a lot of time explaining his reasoning and I concurred. I haven’t had a vertigo episode since but I also take betahistine daily too so not sure which corrected that since I started the med shortly before surgery. No change in hearing or tinnitus, those still fluctuate daily/weekly.

 

Hello fellow Parrothead,

I have bilateral MD. After running out of options, I had the endolymphatic sac decompression surgery about 1 1/2 years ago. Unfortunately it didn't help me and even started drop attacks not long after. I am now trying Betahistine again (third time). My only other option now is Gentamicin, but that's a tough call with bilateral MD.

Marky B.

 

I'm late to the game here, but I had endolymphatic shunt surgery 4 yrs after the onset of MD. I had horrible symptoms for an entire month & high dose steroids & diuretics didn't touch them. I had a cortisone shot in my eardrum which also did nothing (it wasn't my first). My hearing was rapidly spiraling downhill. My ENT told me the surgery provided good results & the minimal research I did seemed to confirm his opinion. I had the surgery, & it did help reduce my symptoms for a couple of years & did restore my hearing to some degree. My doctor did mention that he would need to shave down a small section of my skull to access the endolymphatic duct but failed to mention that when that's done it completely changes how that ear hears. Though my hearing improved, the sound coming in was distorted like when you have water in your ear. He told me that was temporary, but after some months when it hadn't changed, he said, that was a normal change - hmmm...a little double speak there. Though I think he's a great ENT, I felt he hadn't been fully truthful about the post op hearing changes that were likely to occur. I haven't read that anyone else on this forum has had a similar experience w/ a post op hearing change after this surgery.

 

Same here.Will be a year next month.My ENT said in most cases he has seen hearing improvement.Definitely has helped my symptoms.But,I have the same issue with my right ear after surgery

 

I'm sorry to know that you had a similar experience to mine w/ the E sac shunt surgery, @Kenneth. I sort of got used to it but never completely. That ear is now almost completely deaf so it doesn't really matter at this point. My ENT did say that the shunts occasionally clog up because they're so small & can be cleaned out (surgically, of course). As my hearing has continued to decline, he never suggested that could be part of the problem, but then, I neglected to follow through & ask about it. Oh well...water under the bridge at this point.

 

My ENT recommended no shunt with is surgery’s.He had better luck with his patients.I can say that it has definitely made a difference in my situation.After reading the horror stories on here about others and Mineare’s Experience I feel very blessed for sure.I have been doing very well since the surgery and definitely have been getting better over the heeling process.I stop taking the Diaritic last week after talking to my ENT.He had recommended me to try and stop taking.I was afraid so I continued.I was having constant headaches and just felt like crap..I can say since coming off of it I feel alot better.I personally think it’s a good option depending on your situation for sure.Just have to take the bad with the good for sure.I definitely continue watching my sodium intake.Biggest thing I stopped picking up the salt shaker for sure.If I want something high in Sodium I will wait till Friday evening into Saturday to enjoy just in case I get sick.

 

I'm really glad you're doing so well so far, & I hope this lasts a long time for you! I'm still taking my diuretic because my symptoms go crazy if I go off of it so it definitely helps me. I'm taking Triamterene HCTZ. One ENT put me on Acetazolamide which gave me a horrible headache almost immediately so I jumped off that one quickly. Triamterene gives me muscle cramps in my legs/feet sometimes, & my blood pressure drops too low if I don't drink enough so knowing that helps me stay well hydrated.

 

I’m looking at this surgery with titanium clipping. I believe the clipping is supposed to stop the sac from growing back.

 

@AusGuy - Hmmm...I'm not familiar w/ that procedure. "The endolymphatic sac is thought to maintain the hydrostatic pressure and endolymph homeostasis for the inner ear, and its dysfunction may contribute to the pathophysiology of Ménière's disease." (Endolymphatic Sac Surgery for Meniere's Disease - Current Opinion & Literature Review by Maria de Lourdes Flores Garcia, et al., 2017) Endolymphatic Sac Surgery for Ménière's Disease – Current Opinion and Literature Review)

The article suggests that the shunt may merely act as a placebo. I had the E sac surgery (also known as endolymphatic sac decompression surgery) out of sheer desperation but didn't have high expectations of it helping me. I was pleasantly surprised when it did improve my hearing & decrease my symptoms for close to 2 years, but gradually my hearing loss, symptoms, & vertigo came back.

Since the E sac does play a significant role in fluid balance w/in the inner ear, I'd be leary of what the consequences might be if it was totally removed. Is there any research w/ somewhat long-term results that suggests E sac removal is helpful in reducing MD symptoms?

 

It’s actually called EDB, try and google that.

 

I looked it up & found this great Elsevier article:

Endolymphatic duct blockage for Meniere’s Disease treatment - ScienceDirect

I'm sorry I didn't know about this procedure. I would have advocated for it as it sounds like it's less invasive & may have a better outcome than the shunt/endolymphatic decompression.

As of about 3 weeks ago, I began intermittently hearing a clicking sound in my "deaf" ear. I've also been having some low grade ear aches in that ear which I haven't experienced since MD onset. I've had a couple of neck/brain MRIs this year & wonder if the magnet yanked my shunt out. When I left from my shunt surgery, I was handed a little card & was told that I needed to present it anytime I was going to have an MRI. I've faithfully done that, & it's been made note of by the radiology offices I've been to. I see my ENT/surgeon on Mon. to have a chat about this.

 

Seeing him about what to do next? Is the bone removal less in the EDB than in the procedure you had?

 

Interesting that you asked about the bone removal as I did some research on the difference in that between the two types of endolymphatic duct surgeries. The link I posted says the EDB surgery is done "canal wall up" whereas the decompression/shunt surgery is done "canal wall down". I have tried to understand what that means but Google only made me more confused. I'm guessing that the approach for the EDB surgery is different & maybe no skull bone is removed. I will let you know what I learn after my appt. tomorrow.

 

Sounds good, let us know!

 

@AusGuy - I was thinking the "canal wall" might be some part of the skull (which doesn't really make sense, it' just where my brain went), but it turns out it's in the middle ear. My ENT said he didn't touch the canal wall doing my endolymphatic decompression. I asked why he prefers that to the EDB, & he said the EDB comes w/ the risk of causing a CSF (cerebrospinal fluid leak) whereas the decompression comes w/o that risk. He said in his experience the decompression is not only a safer but also a more effective surgery. He also said completely disconnecting the endolymphatic sac entirely makes more sense (I'm not sure how it would be different than just shutting it off) & wouldn't carry the risk of creating a CSF leak. Apparently in both the surgery you're planning to have & the one I had, a small section of skull is removed to access the inner ear. Just be aware that this is likely to permanently change the way your ear receives sound even if it improves or stabilizes your hearing.

As for my inner ear clicking, I did some research last night & found MEM - Middle Ear Myoclonus. It's caused by irregular contraction of either the tensor tympani or tensor stapedius muscles. My ENT confirmed that's what I have & because of the sound I hear, he's fairly convinced it's the stapedius in my case. Nothing to do about it unless it becomes constant & is making my life miserable.

 

Very interesting, EDB has only just been done in Aus, so will have to see what they say about the hearing. How did your hearing change after the surgery?

Your link to EDB did mention the possible leak, no issues with that on the two people I know who have had it.

 

For me, the skull removal made it so incoming sounds are like hearing when you have water in your ear. They just aren't sharp & are slightly muffled. That ear is mostly deaf now so it doesn't matter at this point but when I could still hear, it was quite annoying, & I never did get used to it (though my doctor said I would).