I'm considering having the Endolymphatic Sac surgery. I'm dizzy everyday. Not really bad as I have explained many times but everyday. I feel the stuffiness and ringing. What do you guys think? My doctor tells me he will do it.
I had it about 5 weeks ago. I'm doing ok ish so far... not great but definitely better than where I was pre-surgery. For 3-4 weeks straight, leading up to surgery, I was having hours long severe vertigo attacks every 12 hours. You could almost set a watch to it. It was awful. This was after over 5 years of no severe attacks (though plenty of the other symptoms). Five weeks out now and there's still fluid (blood?) inside that needs to reabsorb. My hearing is worse than it was before but my dr assures me it will come back to where it was. I still have plenty of regular dizziness, tinnitus, fullness etc. As it was explained to me, the surgery is only meant to halt the rotational vertigo.
I had the surgery in October of 2017. I had two kids in diapers and felt like I had no choice. My belief is the longer you have had MM, the less effective the surgery will be. You will read about people that have the shunt and return to a normal life. I feel like most of them had the surgery within the first 2/3 years. I have had MM for 10 years. I was pretty far along before I had the surgery. I have had some vertigo following the surgery. However not as often. My overall balance actually got worse after the surgery. The only symptom it helped was the severe rotational vertigo. Honestly nothing else. I would only recommend it if you are crawling onto the table like I was. However...I am sure there are plenty of people who are not on this board b/c the surgery worked for them. Good luck which ever way you go.
Katrina, what amount of antiviral are you currently taking? Which kind and which brand? I am interested because you had once said the antiviral was helping.
I had the surgery in September 2017 (no shunt, just the decompression) I was quoted 72-75% success rate in reduction of symptoms. It didn't do anything for me.
With any surgery, i ask these questions of the surgeon. How many have you done? What is your success rate? What are the likely side effects? How long will the improvement last? and the very important one How do you define success? Often the way a surgeon defines success (tumor gone, patient not dead) is quite different from what the patient considers a success which may include no long term side effects.
I had the shunt...did not work 6 gentamicin shits...still felt like shit 3 streptomycin (stronger than gentamicin) still felt like a zombie. Laby....the gold standard for mm. I live a normal life. If you are serious about getting your life back as you knew before mm then the laby is the answer.
If you are having the surgery to combat the dizziness, stuffiness and ringing, I think you'll be disappointed with the results. Sac surgery is supposed to alleviate vertigo, nothing else. In lots of cases, it doesn't even do that.
I appreciate all the answers. My surgeon is fantastic. He has just recently won an award out of 750 ENT/Neuros in the USA. He didn't suggest the surgery, I did. My MM is not bad as I stated before but the dizziness is always there. I can still ride my road bike with the most competitive and aggressive group in South FL going at 24-32 MPH often, I can MTB very gnarly trails with jumps, drops, rocks, etc, and last month I ran the Miami 1/2 marathon, LOL. I don't want to sound arrogant at all. I'm just trying to give an idea of the things that I still do. I'm 49 and teach World History full time at a public school. I have wayyyyyyyyyyyyyyyyyyy to much balance left in my bad ear to kill it. I can also hear pretty good from it. I take 2 valacyclovir 1G daily. The brand is Northstar which is the best according to everyone here. I have been on antivirals since FEB 2016. I started with 3 (1g) pills daily and been on 2 (1g) pills since. I have daily dizziness and nystagmus and I truly don't think it's MAV. Most of the time the dizziness doesn't get me nauseous but last week it did for about 10 days. The nausea has completely gone away. I take a steroids shot in my ear every month and if I have a bit of a relapse I take a series of 3 shots. It helps tremendously so I'm very sure that there's inflammation inside my ear. I was wondering if by decompressing the sac and making the space for the sac bigger (sometimes they remove some bones to make the space for the sac bigger) that it could perhaps help alleviate the pressure and daily dizziness. Seems like this type of surgery is only to alleviate the constant vertigo. Thanks, Karina
Karina, If you are riding your bike, running marathons and teaching full time I would stay out of the operating room. If steroids are working for you cross your fingers Otividex gets approved. I would only consider surgery when you are in bed for weeks at a time and out on disability. Stay healthy!!
I had sac decompression/mastoidectomy in 2012. Same scenario for me, only my surgeon said it supposedly offered a 90% success rate. Ha! Agreed, and if you’re REALLY lucky, like me, you can get the added bonus of scar tissue that grows over the years and exacerbates these symptoms!
There is a long conversation on here about it. Search Otividex up top. Ha. I did not get much support in my push to contact the FDA. Take a look. If steroids help you...I would be all over it.
You had my back Autumn. Lol I think a few people thought I worked for Otonomy. Ha. Good luck with everything Karina. Stay healthy!!
Only you know when you can't stand it anymore, but I would try the anti-virals and anti-fungals and low carb diet before the surgery, if you haven't already tried them. Papajoe
Well I have severe TMJ. My jaw is super bad in both sides (joint). But all xrays show that it's not affecting the ear although I know is very very close to the ear. I have an appt with the best TMJ specialist in the area coming soon. It sucks because all these TMJ docs are cash only since most insurance companies don't cover TMJ. He comes really highly recommended by a close friend that is a orthodontist. We will see what he says.
Even though you're paying cash, file those bills with the insurance company. They may (or may not) at least pay the office visit.