tdoak you were asking about my EDB experience and for some reason I can't find the thread so I am replying here. I had my EDB done in October 2016 in London. My ENT performed it on me for the first time so I am his guinea pig . This procedure is not common in Europe as you may know. Since surgery I have had ZERO attacks and I got my life back! On the 3 rd day after the surgery I cleaned my kitchen cupboards as I could not stand staying in bed. The whole recovery period is about 4 weeks but as I mentioned I was pretty active form day 3. There is some head pressure but it is not a big deal. There is constant tinnitus but t it has been present for 13 years ( 10 years before MM).it is also not a big deal . My hearing fluctuates as it did before the procedure. In September I have an appointment re my hearing aid which I do not need now as my hearing is really good ! There is no fatigue whatsoever and no dizziness. Before what would have been an attack I get my head full plus my hearing goes down and this reminds me of the evil. However I feel good and I act as normal. I haven't had to take a single day of work since surgery yuppie! I got my life back and I appreciate it even more now. If you have any more questions Travis, do not hesitate and contact me. All the best to you
Hi Marta, Thanks for update, and glad to hear the procedure was efffective for you. I am surprised there is not more discussion about this relatively new procedure. From what I have read there is minimal risk and not considered destructive like gentamicin injections, and a very high success rate. Marta, was the procedure done as an outpatient? Were you put under or just local anesthetic? I believe there only a few doctors in the world trained to perform this procedure, at least that is what I am finding from my research. Travis
Travis It was an outpatient procedure that lasted about 3-4 hours. I was put to sleep and when I woke up all was good. They even took the bandage off my head 4 hours after the procedure so when I was leaving the hospital you could not tell I had undergone a surgery!
Hi Marta I am new here. This is my first post. I'm in my fourth year of the disease and I am think the EDB might be my next step. I've been reading this forum for about 2 years now and am well aquated with a lot of the things that people are doing to combat this beast (specifically: traditional, antivirals, JOH, Chiropractic, TMJ, acupuncture). I am in the U.S. and there doesn't seem to be anyone or place here that is doing the EDB procedure so I am thinking about going to Montreal to the place where Dr. Saliba practices. He's done a few controlled studies and had great results according to the reports. But my main question is how are you doing since the procedure. I see your last post is August 13.
Hi Johns, I have not had any luck yet getting ahold of Dr. Salina. I am in Ontario and am also very interested in this relatively unknown procedure, which has produced great results. I am seeing my Specialist next week in Toronto and hoping they might be able to make a referral.
Thanks so much for replying. Participating in any forum like this is new for me. I feel connected now. In case you do not already know Dr. Saliba's office is in Montreal here http://www.pcvmontreal.com/en/about-us . I've emailed them with no response yet. I would be very interested to know what you find out when you see your specialist. What is so intriguing about this procedure is that, according to the data, it is non-destructive. Perhaps you've seen this video https://www.youtube.com/watch?v=qrk7OyAB_ss. I hope you have a good visit to your specialist. Please keep us posted.
Johns, I have been really good touch wood. On 12 October It will be my 1st anniversary and trust me I am going to celebrate it ! It is not the same as before MM but the main thing is that there is no vertigo whatsoever! I still have tinnitus, the fullness is there and if I had not experienced vertigo I would be feeling sorry for myself. However I am grateful for what I have and I still can't believe my nightmare is over. Not sure for how long but it is over. I got my life back. I am not on a low salt diet anymore so I can enjoy my meals again. Life is good! If you have any questions I am here to help.
I believe I should mention I heard of EDB patient who got vertigo one year after the surgery. I don't know too many details. That person was not dr Saliba' s patient.
Hi Marta, Thanks for your awesome, positive, life giving response. To think of the idea of "getting your life back" or even being able to eat the food you want (that has some taste) is just so hopeful. Good for you. I hope you have a wonderful October 12 celebration! Where do you find other people to communicate with who have had the EDB? Other than you the only ones I can know of are the anonymous ones in Dr. Saliba's studies. Still trying to get in touch with his office. Is there anyone else on this forum who has had the EDB?
Hi, Unfortunately theyonly support the decompression version. I tried to explain the study that was released ( I had a copy with me ) but they were not receptive to the topic. I have to go back in November and let them know if I want to proceed. I am 50/50 at the moment.
Thanks for the feedback. I wish you the best in your pursuit of relief. I am in the fourth year of this nasty disease and I do many things (all common to veteran sufferers participating in this site) to combat it and to try to have a normal life. Diuretics, low sodium, JOH regimen, Valacyclovir (which worked fabulously for about 5 months - I thought I was cured - now not so much), upper cervical and jaw chiropractic which gives staggered temporary relief, dexamethasone injections (which made the vertigo worse until after the fourth injection where it seems that the very intense horrible nasty 8 hour to 3 day vertigo has subsided) and now seeing an allergist with some positive initial results - but things are far from stable or predictable. The EDB interests me mainly because, as noted here, it is theoretically non destructive. My MD effects only my right ear and even though I currently have little hearing I do not think it is destroyed to the point of not being able to get somewhat better. There you go. I just wanted to tell a little bit of my story (never posted anything on any forum on any subject ever until this one) because I know how only people who have MD can really understand. A good example of this is someone on this site described having a horrible vertigo attack in a stadium event and when she told a friend about it her friend said "yeah I get a little dizzy in stadiums too". Funny but not so funny - we all know that feeling. Thank you for listening. Its a little bit cathartic talking to people who get it. Any very uplifting hearing encouragement from fellow sufferers.
Johns, you and I have nearly the same story and tried all the same things! I've had MM for 16 years, but only started with the vertigo in February 2016 (I remember the day like yesterday). We literally have done everything the same and I too started allergy treatment in June of this year. I am going to look into getting a splint to treat TMJ (I only have a nightguard now) and have a consult with a doctor in a couple of weeks. I have psoriasis as well which I know is an autoimmune disease so I may look into that connection but for now we can only take it day by day. I'm trying out a hearing aid in my affected right ear, but also need one in the left to not feel too off balance. They are hoping this helps the hyperacusis and the tinnitus over time. My issue is they are $5,000 if I decide to purchase them and only last about 5 years. Not only is MM physically draining, it is also mentally and financially draining as well.
I’m surprised there is not a lot more interest in the discussion of this topic - mainly the efficacy of the Endolymphatic Duct Blockage procedure. Surprising that more people on this forum are not commenting. There have been studies done that I know of (and I’m sure there are people out there who know way more than me on this). Here are some links I find by just searching for “endolymphatic duct blockage”: https://www.ncbi.nlm.nih.gov/m/pubmed/25403881/ http://www.advancedotology.org/sayilar/93/buyuk/310-5.pdf https://www.ncbi.nlm.nih.gov/pubmed/25403881 http://www.sciencedirect.com/science/article/pii/S1043181016300550 https://www.ncbi.nlm.nih.gov/m/pubmed/25403881/ Does anybody out there, other than our lone success story, Marta, have any new information on EDB? Here is an informative video I think I got from someone on this site https://www.youtube.com/watch?v=qrk7OyAB_ss
From what I understand, this surgery is not available in the US. If a lot of members are from the US that could be why. I am interested however it doesn't seem like an option bc of location. Pls correct me if I am wrong.
Good point about most people on this forum are from the U.S. I actually live in NJ. I am no authority on any of this I just know the guy who did the EDB studies is in Montreal. Here is his practice http://www.pcvmontreal.com/en/about-us. If I could consult with him and he thought I was a good candidate I would actually camp out in Montreal and pay out of pocket. But I don't know if any of that (other than the driving there) is possible. I can't get the place to either return an email or a phone call. I gave up (at least for now) on seeing ENT's locally since I got steroid shots at Dr. Hammerschlag in NYC who from my experience with him doesn't seem like a person who would discuss anything out of the box like this. So I currently don't have an ENT to consult with.
Johns, I am also in NJ I see Dr. Sujana Chandrasekhar in NYC. She seem very open to things . She was going to renew my Valtrex precsription ,
A member who hasn't posted in over a year had this procedure. She reports she had it done by her doctor at Weill Cornell in New York City at the NY Presbyterian Hospital on 68th Street. The member's name is hebejoy and she posts about it near the end of this thread: http://menieres.org/talk/index.php?topic=903.0
Thanks so much JKC and Cheryl. This information is really helpful. Would be nice to get an update from hebejoy but I am going to assume that he/she, like Marta, is vertigo free. Since I am close to Weill Cornell I sure would like get the name of the doc who did the EDB on hebejoy
Surprising? If there was an earthquake and half the country sunk into the ocean there'd be about 4 comments about it.