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Shunt Surgery

Discussion in 'Your Living Room' started by Jsnider, Oct 29, 2018.

  1. Jsnider

    Jsnider New Member

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    Oct 17, 2018
    Hello everyone - My name is John and I’ve posted a few notes but I am relatively new to this forum. I have had MM for several years and it was under control with medication and giving up caffeine/alcohol. But early this year, it resurfaced. I am going to the House Ear Institute in Los Angeles under the direction of Dr. John House. He altered my medication earlier in the year but it hasn’t helped. He then tried steroid injections in the affected ear but that didn’t work either. Last week I underwent a VNG test as he wanted to see whether a Gent injection might be a possibility. But the test came out completely normal in both ears. There has been no destruction of my balance nerve in my bad ear. As a result he will not give me the Gent injection because he is opposed to destroying a perfectly good balance nerve. The rehab after the injection would be very severe. So the next step is either the shunt surgery or trying to see if it is allergy or viral related or perhaps trying the John of Ohio VMS route. I had a brain MRI several years ago when my MM was being diagnosed and they ruled out an acoustic neuroma. For any of you that has had the shunt surgery could you give me a playbook of what to expect? My doctor says it is about 70% effective. How is the surgery, how much pain is there and how is the aftercare? I read where there could be quite a lot of dizziness after the surgery and the aftercare is not fun. My options are becoming more limited. I am having an episode once every week or two. Please help me with your feedback. Thank you all very much.
     
  2. PleaseNoDizzy

    PleaseNoDizzy Member

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    I had the shunt surgery in January after a huge uptick in vertigo attacks -- they were coming twice a day for weeks. Although the attacks stopped temporarily after the surgery, unfortunately by late May I was back to square one with attacks back to back. I ended up getting a laby in July.

    If your balance nerve is still 100% (mine was barely even reacting to the test)... that would be a pretty extreme measure to go to a laby at this point :(

    As for the shunt... I had no complications and don't remember any extra dizziness after. The pain was really minimal.
     
  3. Jsnider

    Jsnider New Member

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    Thank you so much for replying PleaseNoDizzy. Your experience with the minor shunt surgery is what I have heard fairly often. My doctor tells me through the House Ear Clinic has a 70% success rate. I would love to hear from others. For now I am being very diligent about reducing my sodium intake, taking an antiviral medication, going to a chiropractor to get in alignment, drinking plenty of water, and taking my medication. I am trying to avoid the shunt surgery if at a possible. Please - I would like to hear from others. PleaseNoDizzy - I wish you the best of everything and hope you remain vertigo free. All the best to you and others out there suffering from this situation.
     
  4. tdoak

    tdoak Member

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    I had Endolymphatic Sac Decompression without the shunt. I am in Canada and most surgeons will not use a shunt as the believe it will clog up and not be effective. I had not had a full rotational vertigo attack nice my surgery in April of this year. Still deal with the other symptoms, but my hearing is better at times than it was before surgery. I will go directly to the laby with a cochlear implant if the vertigo returns.
     
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  5. John of Ohio

    John of Ohio Member

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  6. Jsnider

    Jsnider New Member

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    Tdoak - thank you very much for your feedback. It is greatly appreciated. I hope the vertigo for you stops now that you have undergone the surgery. Would you be so kind to explain the phrase that “you still deal with other symptoms”. I hope for the best for you.
     
  7. Jsnider

    Jsnider New Member

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    Tdoak - are the other symptoms the hearing loss and tinnitus? I have those as well and would be happy to live with both if the vertigo would just stop. I’m wondering if there were other symptoms that you were talking about either related to the MM or the actual surgery. Thank you again and good luck. All of us are with you.
     
  8. tdoak

    tdoak Member

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    I have had some minor movement a few times since my surgery, not what I would classify as rotational vertigo. It only lasts about 30 second and very slow moving. My vertigo attacks were violent and very fast, so although I wish I did not have any movement it is significantly better. I still have loud tinnitus and fullness, and some balance issues, but I can still ride a bicycle. I have a couple of times had the floatly feeling and nausea, but not to point of needing to vomit. Most days I would say I am a 7 out of 10.

    I tried a number of meds, supplements and treatments. My story is on here in older posts, but I had a drop attack and broke my neck which required emergency surgery. I was almost paralyzed. My specialists moved to the Sac surgery as soon as I was stable enough to have the surgery.
     
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  9. yanksgirl

    yanksgirl Member

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    John: I had the shunt surgery in 2012! I had one vertigo attack that night---and a couple the next week--not bad. The discomfort was minimal--and better as soon as the ''cup' that is over the ear was removed--it was a bit uncomfortable. I did get an infection--staph--but got meds for it--or a medication reaction--they weren't sure which. Since then I have not had 'vertigo'--at all. However, what I deal with and have posted here 'alot' is ongoing lightheadedness--not dizzy--no vertigo, but feeling like I could 'pass out' is ongoing and such a quality of life issue. I've talked to my doctor--no real answers. My hearing is very poor--I wear bilateral hearing aids--and deal with clarity as much as sound. Have a listener device--works sort of like a blue-tooth, to direct TV to my hearing aids when turned on. That's a big help. Deal with alot of hearing issues--but still can carry on conversations enough that I'm thankful for that. Yanksgirl
     
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  10. Jsnider

    Jsnider New Member

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    Thank you Tdoak for your follow up to my questions. And also thank you to Yanksgirl for your feedback to the endolymphatic sac surgery. I am very happy that the vertigo has stopped for both of you. I can accept and take the hearing loss and the tinnitus. My goal every day is to stay upright and not have to spend anytime lying down due to a vertigo episode. It has gotten to the point that any day without a vertigo episode is a good day. Again thank you both for your help and feedback. I am struggling to decide what to do. Everyone’s feedback gives me additional data points and they are so useful.
     
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  11. jamitts

    jamitts New Member

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  12. jamitts

    jamitts New Member

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    Hi John, I was diagnosed with Meniere's in 2003 and had many terrible years of sudden attacks of vertigo, gradual hearing loss and a severe case of tinnitus. In 2013, I had the decompression and shunt surgery in NYC. The recovery wasn't bad - and the pain was over in a matter of a day or two - BUT, the effects, unfortunately, only helped a little for about a year. After that, the vertigo was back full force and I continued to lose my hearing. Finally, in 2016, I had two series of the steroid shots through my ear - they did not work. My doctor finally agreed to the gent injection - it didn't work!! I have discovered over the years, that changes in the barometric pressure and high humidity mean a lot of discomfort. In 2017, I had a chemical labyrinthectomy (GENT by surgery). The vertigo stopped completely, although I still experienced dizziness and a feeling of intense pressure in my head due to weather changes. For that reason, I took the drastic (for me) step to move to San Diego, where the fluctuation in barometric pressure and humidity is minimal. For the first time in years, I am feeling fine, albeit without hearing in my left ear.
    If you have not had hearing loss, I would suggest that you try the decompression and shunt surgery - it works for a lot of people and I found it to be minimally invasive. I wish you luck!
     
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  13. Pupper

    Pupper Member

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    Jsnider. I've had the shunt. I've had the same 70% quoted to me from the same place as you. I've researched the real shunt statistics. Forget the shunt. You're having episodes nearly every day. Get real. If you're considering surgery, investigate a surgery with at least a good track record, the VNS.
     
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  14. GLA

    GLA Member

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    FWIW, I was diagnosed in 1989 (only on my right side at the time). I was nine years old and having to miss school quite frequently due to severe vertigo. I had the shunt surgery in 1991, and I have had one severe vertigo attack and a few minor ones (lasting less than a minute, whereas they used to last 3-6 hours) since then. I realize I'm most likely an outlier, but I'd have to call it an amazingly tremendous success as far as I'm concerned. I still having hearing loss and tinnitus in the ear (along with pressure fluctuations), but it's nothing I can't deal with for the most part.

    I was diagnosed with MD on my left side in 2001, but fortunately, vertigo has never been one of the symptoms of my left side. Just fluctuating hearing loss, raging tinnitus (at times) and fluctuating aural fullness.

    FWIW, I had the surgery done by Dr. Daniel Franklin in Houston, Texas.
     
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  15. Jsnider

    Jsnider New Member

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    Thank you everyone for your feedback. I hope all of you know how much I appreciate it. GLA - I cannot believe you were diagnosed when you were 9 years old. I am so sorry and cannot imagine what that must have been like as a child. At least i had a good 50 years without this ordeal before my MM was diagnosed. For all of you that have responded and however it has happened - I am so glad you have found relief. I am hopeful that someday I will be in a good place too. Please keep your comments coming - it is very helpful to me.
     
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  16. Pupper

    Pupper Member

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    Jsnider. I see today that in June, Timothy Hain added a further segment on shunt surgery. See link below. He's still doesn't recommend it.

    You can also email him. He does answer. When I've emailed him I've kept it short, out of respect for his time, and the fact that he even answers emails.

    As far as fear of shunt surgery itself...pain/recovery etc. The surgery isn't that big a deal. Don't worry about that part. I don't blame your specialist for not wanting to damage a healthy nerve. But if, down the road you get bad enough to consider surgery, just keep VNS in mind.

    It's interesting that tests show that your balance nerves are (as yet) unaffected. I don't know your symptoms. I'm guessing you haven't had super fast 8 hour spinning attacks. I think those are the ones that damage the nerve.

    Shunts and Meniere's disease
     
  17. Jsnider

    Jsnider New Member

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    Oct 17, 2018
    P
     
  18. Jsnider

    Jsnider New Member

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    Pupper - Thank you for your note. I just emailed Dr. Hain. You are the 2nd person to recommend that. i have a friend of mine who received a Gent injection from Dr. Hain who suggested that i email him as well. he is another in a long list of success stories as his one gent injection 11 years ago did the trick for him. But his balance nerve in his right ear was destroyed enough that Dr. Hain was able to do that. Mine is symmetrical with my good ear and Dr. House won't perform the injection - I guess that is good news and bad news. I wanted to get Dr. Hain's thoughts on that as well as the surgery. Thanks again.
     
  19. Jsnider

    Jsnider New Member

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    Oct 17, 2018
    Pupper - by the way, I have had only 2-3 drop episodes since MM was diagnosed. Most of my episodes are garden variety rotational vertigo that lasts 1-2 hours. When it happens, i lie down and go to sleep. By the time I wake up it is gone and I feel groggy but not dizzy any longer - no energy for the rest of the day. No episode has lasted more than 3 hours and sleep is essential. i have found that when i am having an episode - valium helps relax me and allows me to get to sleep faster. There is nothing more frustrating than trying to fall asleep when i can feel the rotational vertigo. Valium helps.
     
  20. Clare

    Clare Member

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    This was my pre-laby experience, too. Like you, I found valium effective as a rescue med -- if I could get and keep it down before the vomiting.
     

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