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Vicki

New Surgery For Meniere's - Endolymphatic Duct Blockage (EBD)

Study/Paper Cited (optional):
http://www.ncbi.nlm.nih.gov/pubmed/25403881
  1. mariofrommty

    mariofrommty Member

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    Oct 7, 2016
    Hey guys just wondering if this surgery some how stops the hearing loss?
     
  2. West

    West New Member

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    Nov 12, 2016
    Hi, I am new and just now reading about EDB surgery . How has your experience been since your last update?
     
  3. Marta

    Marta Active Member

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    Hello everyone! I had my EDB done in October 2016 and I have not had any vertigo attacks whatsoever. Prior to that I had attacks as often as 2-3 a week and after having used Monolaurin one attack every 4-6 weeks. It all lasted from September 2015 to October 12, 2016 which was the day of my surgery.
    Since October I have had 4 " rocky feeling " days and I felt nauseated. I think those were the days when attacks were due. I want to emphasise that on those days, despite feeling under the weather, I continued my life as normal. On one occasion I was flying with my family and the whole journey time was 14 hours, on another I was at work for 9 hours. It wasn't pleasant but no one noticed anything and I did not have to " run" Home and get myself a bowl.
    I can still feel some pressure inside the operated ear but it's not a big deal. My hearing flactuates and I go almost deaf before what would have been an attack. There is some tinnitus present but not a big deal again . The worst is the fear that the evil would be back. Other than that I am absolutely fine! I got my life back and I appreciate it as never before!
     
  4. Bummers

    Bummers New Member

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    May 30, 2015
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    That's fantastic! thanks for sharing!
     
  5. johns

    johns New Member

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    Sep 20, 2017
    Hebe, are you there. We're all wondering how you have done since your EDB in April 2016
     
  6. Oscar375

    Oscar375 New Member

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    May 7, 2018
    Hebeboy any update on your EDB surgery I'm also a sufferer and saw that this seems promising. Please give us an update....
     
  7. Oscar375

    Oscar375 New Member

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    May 7, 2018
    Any update from anyone that had the EDB surgery done want to know if there are still no more attacks in the long term
     
  8. Marta

    Marta Active Member

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    Since 12th October 2016 no attacks after EDB. I know when attacks would be taking place as it feels like at the onset of an attack in my head. Nevertheless I go to work as normal and perform all duties without any excuse. The worst is the fear of getting an attack. Touch wood so far so good. If any further questions do not hesitate to ask.
    Marta
     
  9. Marta

    Marta Active Member

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    hebe posted an update on another thread some time ago. Please search for it.
     
  10. Frankiviri

    Frankiviri New Member

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    Aug 10, 2018
    Hello. This is my first post. Was diagnosed in january of this year. Have had numerous steroid injections into my ear with no good results. The next step mu specialist wants to take is the endolymohatic shunt surgery.
    In all the reading i've done online and on this website, the endolymphatic shunt surgery seems to be a better option with better results thus far. My Dr does not perform this surgery. I am asking if anyone knows of a Dr that DOES perform the EDB surgery here in the US. I have been in contact with the Dr that started the procedure in Canada but going out of the country makes it much more challenging of a situation. I live in south Florida. Sorry for rambling on. Any leads would help. Thank you!
     
  11. Frankiviri

    Frankiviri New Member

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    Aug 10, 2018
    I apologize. I typed in my earlier post that the endolymphatic shunt seemed like the better choice of surgery. What i meant to type was the endolymphatic duct blockage seems to be the procedure getting better results. That is what I am looking for. A doctor that currently performs that procedure. Thanks. Any info helps
     
  12. Shannon Rosendale

    Shannon Rosendale New Member

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    Jul 24, 2019
    Wilmington DE
    My specialist Michael Teixido most definitely performs EDB and i JUST read about it today on his site and found this messageboard while looking it up. Dexa perfusion failed and i now want surgery, i thought that the sac decompression/shunt was the only option besides Labrinthectomy and Nerve recession but now i DEFINETLY want to ask him about this option at my followup today. I have bilateral and my right ear is driving me INSANE and the perfusion seemed to help the first time but no change this time (for hearing loss NOT vertigo) Dr.Teixido seems to think my Meniere's is from migraines even though i dont get them often btw. Ever since i was started on Trokendi XR daily i have not had one single vertigo attack since in over a year and they used to put me in the ER every time. If anyone needs a medication to try i HIGHLY recommend it.
    I used to take Diazepam for vertigo after an attack, Zofran before an attack if i felt it enough in advance and after by IV and orally(never worked),and Meclizine for dizziness before an attack if i had enough notice too. Now i dont need any of them after starting Trokendi XR.

    However my hearing loss/fullness/tinnitus is now what is driving me insane and i also do not want to be on medication to prevent attacks for the rest of my life for vertigo either. I aldo know my hearing is gradually fading off and on in both ears and id like to find a way to stop it in its tracks if possible.

    Here is my doctors site with the part about him being one of few that do the Sac surgery using the titanium clips
    Excited to ask him about it today now and to share it with other patients needing options.
    Meniere's Disease – ENT & Allergy of Delaware
     
    • Optimistic Optimistic x 1
  13. Saera

    Saera Active Member

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    My doc had looked at me like I was insane when I mentioned this. I’m guessing it hasn’t made it to the popularity level yet. Unfortunate. My shunt worked great for two years. Now I’m on the gent and laby train ‍♀️
     
  14. AnneT

    AnneT Well-Known Member

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    Welcome, Shannon!

    Dr. House in LA is also very keen on shunt surgery. It sounds like it is usually low risk, but not as good odds of eliminating the vertigo attacks as laby or VNS or gentamicin injections (from studies I’ve read), so I personally wasn’t keen on it. It certainly seems like every Menieres specialist (and patient!) has his/her own favourite approach. It’s great you are here, gathering info.

    We Menierians are faced with tough choices! It usually comes down to how impactful the vertigo attacks are, what your hearing is like, etc.
     
  15. mtjbob

    mtjbob New Member

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    May 13, 2016
    I am reviving this thread to discuss having EDB surgery. I am fortunate to live in Montreal and be under the care of Dr. Saliba, the inventor of this novel procedure. I recently had an MRI done in a special way (also quite novel) and level 1 hydrops was visualized and confirmed. A CT scan also shows that I have a dehiscence of the superior canal which is symptomatic but not hyperactive. My doctor looked at me and said let's fix the Menieres first! He has done this procedure countless times and he is extraordinarily confident in his results. Last Monday I got the call giving me two days notice for my Wednesday surgery. I was very nervous, with pandemic and all. I am now 3 days post surgery and definitely a bit worse for wear, but hopeful. I am one of those people that had chronic symptoms including some level of fullness, hearing loss, tinnitus and hyperacusis. For about 7 years I suffered through it, but it always stopped short of the vertigo blowout. The blowouts finally began about a year ago and my quality of life took a big turn for the worse.

    I am in quite a bit of pain post surgery, but I do not have my "normal" fullness. That is my beacon of hope for now. I have been trying to find other people's stories about their EDB surgeries to compare notes on the healing process, but not alot of luck. Maybe this thread will bring some out. If others follow up with me I will continue to update you on my progress.

    If there is any advice I can give at this point it is to seek out a doctor that has much experience with transmastoid surgery. If you are lucky enough to be in Montreal or Canada for that matter, you should do whatever it takes to see Dr. Saliba. He is a very special and personable doctor on top of being a highly skilled and creative surgeon.

    Prior to covid he was seeing patients from many countries coming to him for this specific surgery and several others that he is noted for.

    Cheers.
     
  16. Marta

    Marta Active Member

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    Wishing you a speedy recovery!
    I am glad all went well and I hope you are going to get your desired results. I had my EDB some 4 and a half years ago which stopped vertigo straight away. I knew when I would have had vertigo as I was feeling’off’ in my head. But no vertigo whatsoever. Three year post surgery I was turning to the other side in bed and it hit me. Vertigo! A 10 hour episode, not very severe comparing to the ones I experienced before (no throwing up etc) Nevertheless it left me in tears. I do not know whether it was MM vertigo or a positional one. However I read that positional vertigo does not last that long. I got really scared and a good soul found an email address to Dr Saliba for me. I emailed him and guess what? He responded to my email! He asked for details of my doctor here in London so that he could talk to him. I am sure my doctor never responded to him and I never heard from dr Saliba again.
    I have been feeling great since that unfortunate episode and I know during this time I would have had at least several attacks had I not had the surgery. ( the ‘off’ feeling in my head, nausea, tiredness, sometimes slight nystagmus but No vertigo!)
    Before surgery I had some 3-4 attacks weekly each one lasting around 20h! And it went on for half a year. I consider myself a lucky one.
    If you feel you need more info you can always PM me.
    I wish you a speedy recovery and do pop in here sometime to say how you are getting on.
    All the best!
     
  17. Donamo

    Donamo Active Member

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    May 12, 2014
    Good luck to you MtjBob!

    Marta, is that London England or London Ontario? Also, what about your hearing and full ear feeling before and after your EDB?
     
  18. Marta

    Marta Active Member

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    It’s London England. My hearing fluctuates. Before the ‘off’ feeling it’s worse. All in all my hearing is good. I have always been an atypical patient when it comes to hearing. Considering the amount and frequency of attacks in the past it should be much worse than it is. I function very well without a hearing aid (I have one though) There is no fullness whatsoever.
    Life is good.
     
  19. Martina70

    Martina70 New Member

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    Jun 1, 2020
    Cork Ireland
    Marta,
    I live in Ireland & what you described about attacks is what I have. I had bad attacks Sept 2019 Oct 2020. Fortunately things have calmed down. I had endomycn injections for 6 week Jul/Aug. I gave up caffeine alcohol salt & sodium products. I started acupuncture in Nov which seems to help. Had to leave work a few times in a wheelchair. I feel more positive now back to my surgeon on Fen 2nd & am going to ask about EDB
     
  20. Marta

    Marta Active Member

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    Martina I am so sorry to hear you have been suffering. What is good you have been looking for answers and I am sure you are going to find the one.
    Keep my fingers crossed for you.
     

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