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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. centrallanding

    centrallanding New Member

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    Apr 2, 2015
    When David and I had a consult with Dr. Rauch at Mass Eye and Ear 2 weeks ago (more on the results of that later), the only treatment that Dr. Rauch recommends after low salt diet and diuretics have failed is the low dose intratympanic Gentamicin shot. I asked about the endolymphatic duct blockage surgery being done in Montreal. At first he indicated that he had not heard about it. I said that I thought the paper was published in January. Then he said "No, I think it was a couple of years ago. No one is doing it.". I was kind of shut down at that point. We have another appointment with him in two weeks. I will take the paper with me and ask him what he knows about it. David will probably kill me, but Dr. Rauch is one of the leading Meniere's Disease physicians in the country, possibly the world. He must know about it and if he doesn't, well... I need to know why.
     
  2. Vicki

    Vicki Guest

    The paper was just published on PubMed in January 2015.

    Dr Hains is aware of it and its on his website with a comment, sounds very exciting or promising something like that, but needs to be replicated or something to that effect. I called his office and asked if anyone is doing it in the USA and the office said not yet maybe but will in the next few years.

    Dr Rauch might be thinking of a different surgery but it will be interesting to see what he says when he sees the study.

    Good luck on your next appointment I hope David is doing well!
     
  3. Bulldogs

    Bulldogs Well-Known Member

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    May 12, 2014
    You may want to call Dr. Issam Saliba personally,
    It takes a while for things like this to become mainstream.
     
  4. yanksgirl

    yanksgirl Member

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    May 12, 2014
    I am at 3 years and no vertigo--but had the Endo shunt, not the Endo Sac surgery. As I've posted here, my doctor said I would 'not' have vertigo anymore. So far he is right. However, if you've read any other of my posts you see that I have significant head (not ear) pressure and daily dizziness and that causes mild to not so mild nausea. My doctor said this cannot be 'undone' but since I've had 'no vertigo', I wouldn't want it messed with anyway. Time will tell, but I do wonder if it can 'clog' or collapse but the Neuro ent I see, says 'no'. Still with the pressure, etc. I can't help but be concerned.
     
  5. Vicki

    Vicki Guest

    the EDB is different than the surgery you have had. The study reports these patients do not have those issues you are experiencing and this surgery is being compared to the ESD. I believe this dr has been doing the EBD for 4-5 years now.
     
  6. Vicki

    Vicki Guest

    *EDB
     
  7. Vicki

    Vicki Guest

    Update from PubMed Jan 2016
    http://www.ncbi.nlm.nih.gov/pubmed/26742910

    Endolymphatic duct blockage: quality of life assessment of a novel surgical technique for Ménière disease.

    Gabra N1, Asmar MH1, Berbiche D2, Saliba I3.



    Author information

    1Division of Otolaryngology, Head and Neck Surgery, Montreal University Hospital Center (CHUM), University of Montreal, 1560, rue Sherbrooke East, Montreal, QC, H2L 4M1, Canada.
    2Department of Statistics, University of Montreal, Montreal, QC, Canada.
    3Division of Otolaryngology, Head and Neck Surgery, Montreal University Hospital Center (CHUM), University of Montreal, 1560, rue Sherbrooke East, Montreal, QC, H2L 4M1, Canada. [email protected].

    Abstract

    The aim of this study is to evaluate the quality of life (QOL) of patients treated by endolymphatic duct blockage (EDB) for Ménière's disease with a dedicated questionnaire. This is a retrospective cross-sectional study which included 54 patients diagnosed with severe, refractory Ménière's disease according to the AAO-HNS criteria and treated with EDB between 2010 and 2013. Answers to the first 38 questions have assigned scores from 0 to 4 (0 corresponding to the poorest QOL). A preoperative score called S1 was calculated as follows: S1 = sum of preoperative question scores/maximum possible preoperative score ×100. The same formula was used to calculate the postoperative score S2. The change in QOL score, S3, was then calculated (S3 = S2-S1). All answers were analyzed anonymously. Statistical analysis was done using Student t test and Chi square test. A response rate of 89 % was obtained with the Ménière's disease outcome questionnaire. The preoperative (S1) score was 21.4 (±12.6) and the postoperative score (S2) was 64.6 (±21.6) with a change in QOL (S3) of 43.3 (p < 0.001). Postoperatively, 89.9 % reported no Ménière's attacks (p < 0.001). Seventy-nine percent (15/19) of the questions showed a significant improvement after surgery. These results show that EDB is associated with a significant improvement of the QOL of patients suffering from severe Ménière's disease.
     
  8. hebejoy

    hebejoy New Member

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    I was diagnosed with MD in 2009. I have had many many vertigo attacks and recently they have become too debilitating.
    My doctor has prescribed all the medications that he can over the years and now we are talking surgery. I went for a 2nd opinion and this doctor also said I was ready for surgery.
    A few weeks ago I had 3 days of vertigo so I went for a steroid injection. This should have helped but it didn't. A few days later I had vertigo for 16 hours. Enough! I took a steroid pack for 6 days. Things have settled finally but as we know anything can happen. At this stage I have no fore-warning of a vertigo attack.

    The surgery that is being recommended is Endolymphatic Sac surgery. I heard there were 2 options. Now I am told there are 3 options.
    1. Endolymphatic Sac shunt
    2. Endolymphatic Sac Decompression (ESD)
    3. Endolymphatic Duct Blockage (EDB).

    I went to my doctor with a whole page of questions. He answered all of them.
    He then described all of these options.
    He said there doesn't seem to be much difference with the results of the shunt or no shunt options.
    But then he described the EDB vs ESD. He actually printed the article out for me which shows the results of the clinical trial. The EBD procedure certainly seems to give more favorable results that the regular ESD.

    From what I have read, each surgery starts in the same way. Incision behind the ear, removal of some bone, exposure of the Endolymphatic Sac.

    1. with shunt: the sac is sliced open and a shunt is placed inside
    2. without shunt: exposing the sac by removing the bone allows for decompression
    3. duct blockage: the duct attaching the sac to the inner ear is tied off (either by suture or metal clips)

    I would love to be choosing the newer EDB procedure because the results really do seem favorable, but my doctor has not performed this before. Do I let him have a go (!), look for another doctor who has done it, or go with the more conservative ESD, which does have about a 75% good result (ie reduction or elimination of vertigo attacks.)

    As far as the tinnitus and hearing loss, this is arbitrary and can possibly improve, but we all know it is the vertigo that we are desperate to eliminate.

    Trying to make a decision. ANY THOUGHTS????
     
  9. Sharon406

    Sharon406 Member

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    Mar 29, 2015
    Do you live in US? I didn't think any Dr's here were doing the EDB. Would love to hear someone is at least considering it.
     
  10. Vicki

    Vicki Guest

    Hi hebejoy,
    the only doctors I know of that are doing the EDB is the one that developed it in Quebec Canada, one in the Netherlands named Dr Blum and I think one of our members Marta mentioned her doctor does it in the UK, but that I am not sure.
    But you might try calling Dr Saliba in Canada and ask if he knows of anyone who does it near where you are located.
     
  11. Marta

    Marta Active Member

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    Jan 26, 2016
    I do not know how I could have missed this thread!!! My doctor, here in UK, said that the first option for me is inner ear steroid injections and if they do not work he would like to go ahead with EDB! He said that the success rate is well over 90% which sounds very optimistic. However I wonder to what extent it is true. According to him, the recovery time is about two weeks and the patients report to have no vertigo whatsoever right after the surgery! There is no damage to hearing. Hmmmm. It would be nice to talk to EDB patients. I was searching the Internet looking for more information about the surgery but there is not much.
     
  12. Marta

    Marta Active Member

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    Jan 26, 2016
    Vicki, you are so kind! You purchased the article and you shared it with all of us!
    God bless you Vicki!
     
  13. Maggie

    Maggie Guest

    Marta, I second this. There are many kind, helpful people here and Vicki is one of the very best.

    Maggie
     
  14. Vicki

    Vicki Guest

    aww shucks hehe thank you Maggie and Marta, was my pleasure :)
     
  15. hebejoy

    hebejoy New Member

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    Apr 3, 2016
    Hi this is me again. I had the surgery. :)
    Endolymphatic Duct Blockage.
    This was a week ago on April 12, 2016. It was done by my doctor at Weill Cornell in New York, at the NY Presbyterian Hospital on 68th Street.

    My doctor had never done this surgery before but had done many ear surgeries. He said he had done about 20 endolymphatic sac surgery (mostly shunts).
    I read as much as I could, asked a million questions (I met with him for over an hour), watched the youtube video that was posted on this site (see earlier posts) and look the plunge.

    So far so good. I see my doctor tomorrow and will report back here. He said most things will settle within 2 weeks (6 days to go) and then all should be good after 4-6 weeks.

    But please reach out to me if you have any questions.
    Best news is NO VERTIGO so far !!!

    Hebe Joy
    (so grateful)
     
  16. Vicki

    Vicki Guest

    wow! that's fantastic! I am so happy for you! Thanks for the update keep us posted :)
     
  17. Muff

    Muff Member

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    Jul 20, 2015
    Wonderful news Hebe Joy ;D. That is so cool that your ENT was willing to give it a go AND that you trusted him! I can't wait to hear about your progress with all aspects of the disease. Not only the vertigo, but ear fullness, brain fog, tinnitus, hearing, hyperacusis or any of those other crappy things that go with this disease. Congratulations on NO VERTIGO so far!! Yay!!!
     
  18. hebejoy

    hebejoy New Member

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    Apr 3, 2016
    Hi Hebe here.
    I am a bit confused with all these threads but I found this again and thought I would reply.

    I am nearly 3 weeks post surgery for EBD. No vertigo since surgery !!!
    Still recovering slowly but very happy.
    I am occasionally a little woozy but not worth mentioning really.
    I still have the echo in my head when I talk or eat. The doctor says that is due to the buildup of blood and fluid post-op and that 4-6 weeks in it should all have drained out and the echo should disappear. Because of this my hearing is not good but that also should go back to what it was pre-op. I still have swelling and a little discomfort but it really is not a problem.
    My goal was to be vertigo free and if this is the result then I have nothing to complain about.
    I will keep in touch
    THANKS
    Hebe
     
  19. Marta

    Marta Active Member

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    Jan 26, 2016
    Well done Hebe! That's really great news! All the best for you and please keep us updated!
     
  20. BEANZMEANZ

    BEANZMEANZ Member

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    Hi Hebejoy
    Now that it's been six months since the surgery, can you share with us how things are going for you now?
     

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