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Results of VNG... Dr recommended VNS??!!

Discussion in 'Your Living Room' started by MaryR, Sep 16, 2019.

  1. MaryR

    MaryR New Member

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    Hi Friends,
    Thanks everyone for your encouragement and for sharing your experience with the VNG. I had the test a few days ago and you all were right.. not bad at all.

    Results indicated a 26% weakness in my right ear (my bad one) compared to left.

    To my compete shock, my ENT came in and recommended moving forward with a Vestibular Nerve Section and he made an appointment for me for a consultation with a neurosurgeon in his group.
    Ummmmmm ... Whaaaaa? This is the same doctor who 3 weeks ago would not prescribe me Valtrex due to the potential of unwelcome side effects!

    So I’m still reeling. I’ve only been on Valtrex for 3 weeks, and only been on JOH and B5/B6 for 4 weeks. My hearing in my right east has “moderate” loss... but it’s “flat” .. I guess meaning it sucks at all frequencies, not just low ones.

    My doc also threw me for a loop, telling me that because I don’t have a history of audiograms on record, he suspects my hearing loss is long-standing and the damage could have occurred years and years ago. He said he thinks I have DELAYED ENDOLYMPHATIC HYDROPS and not typical Meniere’s. Does this mean antivirals won’t work for me?

    I have to do something to stop the vertigo.. I’ve been having full episodes almost daily for the past few months. But I have had some relief with the antivirals (I think). Maybe. I am just coming off a 7 day stretch without an episode. (Had some wicked spinning this morning so can’t say for sure).

    So I’m kind of lost. Anyone else think I haven’t given antivirals a long enough chance? Why would my Doc suggest the VNS now.. I haven’t even tried Betahistine yet, and haven’t don’t any Gent injections. He said that he thinks any pharma interventions will just delay me getting permanent relief. Am I such a lost cause that it makes sense to jump quickly to such an extreme surgery?

    Thanks all for your love and support and I’d really appreciate hearing your opinions on this. I am in NYC.. any advice on doctors who I should see for a second opinion? I have an appointment at Tampa Bay in a few weeks. I was denied from Mayo.. they said there was nothing they could add to my current treatment. Can I appeal this? If I have the VNS surgery I want it done by the best doc I can find!!

    Thanks. Hope everyone has a great week!

    xx,
    Mary
     
  2. Mac

    Mac Active Member

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    Who is your current doctor in NYC?

    I live in NJ and have seen all the players locally. They are all the same in NYC. Rent is high so they like to cut.I have heard the crew in Tampa works with anti-virals.
    I would give them a full shot before surgery..
     
  3. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    You don’t have to appeal anything. You are the bottom line and deciding whether you were going for major invasive surgery. Just because the doctor says that you should does not mean that you have to. This sounds like a prime example of one one should get a second opinion.
     
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  4. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    *sorry for the weird typos. Hands are full and was using Siri dictation which is awful
     
  5. MaryR

    MaryR New Member

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    Thanks Mac,
    I appreciate your reply.
    I started this process at NYU Vestibular Clinic, but was unhappy with brusqueness of Dr. and lack of communication/ absence of return phone calls.

    So I switched to Mt. Sinai Hearing and Balance Clinic. Current doctors are Dr. Tweel (ENT), Dr. Jen (Neurologist) and Dr. Casetti (neurotologist).

    I do like them, and have had ok experiences so far. They are all very traditional and by the book, if you know what I mean. Each was opposed to antivirals and Serc because “no scientific evidence” blah blah. But I was really thrown for a loop by the sudden recommendation for the VNS. I feel like there are still other avenues I haven’t explored. I can appreciate them feeling bad for me and wanting to help me find permanent relief but I’m confused as to why the results of my VNG Test would cause such an immediate and sudden recommendation to move forward with surgery.

    Who are your doctors? Who do you recommend? Honestly, I’d love to get into Mayo and would happily travel there.. maybe they will reconsider my application now that surgery was recommended??

    Thanks again.
     
  6. MaryR

    MaryR New Member

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    Thanks pleasenodizzy,
    (Love the name btw)
    I meant, can I appeal the denial from Mayo to beg them to take me as a patient?
    I applied for an appointment with their ENT department (Rochester) and was denied on the grounds that “they did not believe they could add anything further to me care above and beyond what I was receiving.”

    And... Hell no way am I jumping into surgery just because my current doc recommends it. Would love any suggestions for docs to provide second, third, fourth etc opinions if you have any.

    Thanks for your response.
     
  7. zotjen

    zotjen Member

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    I had to look it up and this is the definition of delayed endolymphatic hydrops:

    "Delayed endolymphatic hydrops (DEH) differs from Meniere's disease in that it occurs in pre-existing ear pathology in patients who have a profound unilateral or total deafness that was caused by infection, trauma, or unknown causes during childhood or adulthood."

    Based on your description, it doesn't sound like your hearing is that bad. I would definitely get a second opinion or at least tell your doctor you'd like to try other treatments first.
     
  8. Mac

    Mac Active Member

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    Having never been to Mayo or Tampa...I would go to Tampa first.

    I actually had my Sac Decompression at Mt Sanai.

    Anti-Virals will take months to work (3 per day)...if they ever do for you...its a crap shoot.

    I don't know of any docs in NYC that believe in anti-virals. You are better off finding a wholistic nurse practitioner who focuses on you overall health. Bring in the study's on anti-virals and they'll write you a script. There are tons of them in NYC. They can help you get healthy in other ways too.

    I always prefer docs who at least acknowledge that anti-virals might work. My guess is Mayo will be more of what you currently working with. Get down to Tampa and see what they say.
     
  9. California Sun

    California Sun Active Member

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    Please get a second opinion, possibly even third opinion if the first two opinions are different. If it was me, I'd hold off on the surgery until all others options have failed.
     
  10. June-

    June- Well-Known Member

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    There is always Dr Dereber at House in LA if you are hopping a plane anyway. I think that dr was kind of rash myself. Maybe you ill want it down the line or maybe you will want a laby or maybe not but nothing wrong with a second opinion and time to review the situation and see if you get any benefit from what you are doing now. Did he explain his sudden epiphany?
     
  11. Onedayatatime

    Onedayatatime Active Member

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    I agree to trying all the non-surgical options first. However, I never had daily vertigo. Only you can decide how much of the dizzy crap you can take. I'm into this disease almost 4 years and it was a pre-surgical VNG test that made my doc switch gears and treat for MAV. Been Vertigo free for 6 weeks now. Doc said if he did a Laby and MAV was the issue, I would still be symptomatic. BTW, AV's did not work for me.
     
  12. Clare

    Clare Active Member

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    I was told by Mayo Rochester that they take Meniere's patients only from Minnesota and the adjacent states because they have too much demand for their ENT department.
     
  13. Bonlyn

    Bonlyn Active Member

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    Sorry this last doctor visit threw more uncertainty on your situation.
    Not sure if you are right in NYC or the suburbs, but I live north of the city and go to an ENT/ otologist who will prescribe SERC/ betahistine for you. He is connected to a compounding pharmacy in MA. He does not believe in the anti virals though. He is located in White Plains, not too far from the metro north train station. He would probably be a good one to get another opinion. I will pm you his name and number if you would like.
    You need to have peace about a decision like this, wishing you can find another specialist, in a TIMELY way, to give you the information and peace you need...because I know some of these doctors make you wait months for a first appointment.
     
  14. redwing1951

    redwing1951 Well-Known Member

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    Another place you might consider if you don't mind traveling is Mass Eye and Ear Infirmary in Boston. Dr. Stephen Roach would provide you with options but I will tell you he does not prescribe antivirals. He did my laby after gent failed. If you go to MEEI website you can read his background. He is a good doc but a straight shooter who will be very direct with you. A good resource for a second opinion. Good luck.
     
  15. EmilyP

    EmilyP Member

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    Mac, who in Tampa. I live in Orlando and would be willing to go to Tampa, I think I need a second opinion. Thanks.
     
  16. Bulldogs

    Bulldogs Well-Known Member

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    I am sorry to hear you struggling. Take a deep breath and know many have traveled this road including myself.

    I personally would never do a VNS...it’s brain surgery and side effects have been known to awful.

    Like Redwing said...go to the best Dr’s who have seen and care for the toughest of the toughest cases....those Dr’s usually get it so to speak.

    Dr. Rauch at MEEI
    Dr. Mattox at Emory
    Several doctors at John Hopkins

    To stop the vertigo many will go the chemical laby way first and if you still feel awful they will move onto the laby. I think VNS are becoming obsolete in many top clinics because now they preserve the cochlea in the laby and if needed use it in the future.

    I would get myself into the care of a top notch Otolaryngologist and as Red said..... The best Dr’s may not tell you what you want to hear but they will tell you what hat you need to hear/know.

    If you cannot see a Dr to Rauch or Mattox or get to Hopkins call their offices and get a recommendation from them for somebody in your area...I have learned this community is small and they all kind of know each other and who to see.

    ....your gonna make it. A normal life is not far away. Use the tools available in the shed and go for it.
     
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  17. Svines

    Svines Member

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    Emily, how are you feeling? Any change in symptoms?
     
  18. EmilyP

    EmilyP Member

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    Up until this past week relatively good. The ringing was minor with low frequency and my headache was not bad, it was there but very small. The scale of 1 to 10 maybe a 4. However last Wed. I started with high pitched ringing and much louder, and my headache has been around 7 to 8. TODAY finally some relief and no headache just neck tightness and very little ringing. My head feels full it seems all the time. I wish I had better news. I am following the HYH diet and continuing on JOH & the B5&6. How are you doing?
     
    • Optimistic Optimistic x 1
  19. Svines

    Svines Member

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    I hate to hear you have had a bad week. I think you should seek a second or third opinion. Have you seen a cervical chiropractor? Mine helps me greatly with my neck issues. Weather continues to be a factor for me, but right now, my ear fullness seems to be overall getting better. I still seem to have days where it seems a little fuller, and I have become a pretty reliable weatherman! If it is going to rain, I know it even if it is not forecasted. My tinnitus continues to be mild. I have cut down to 1000 mg of Valtrex, but the Neurotologist upped my dosage of Nortriptyline to 50 mg. (He was the one who said I did not have cochlear hydrops or Ménière’s disease but that I have a migraine variant.) I still believe my ENT was right with his diagnosis of cochlear Hydrops, but I have discovered diet does not play a role for me. Oh.. I also have been on allergy shots for 2 months. Whatever is truly wrong with me is unpredictable other than the weather affecting it. Could weather be a factor in your last week’s worsening symptoms? I started journaling what I ate, the weather, and the meds. Hot, humid, and pop up rain showers type of days are NOT good for me. What part of the country do you live in?
     
  20. Onedayatatime

    Onedayatatime Active Member

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    Please consider reading Buchholz's Heal Your Headache. It was an eyeopener for me and it changed my condition for the better. All your symptoms could be Migraine related. Verapamil and migraine diet has made my Vertigo disappear for now. I hope forever. No surgery required, only time, patience and tenacity (for the diet).
     
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