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Vestibular Nerve Section Surgery

Discussion in 'Your Living Room' started by Swell143, Nov 13, 2021.

  1. Swell143

    Swell143 New Member

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    Its my understanding that they cut the tympanic nerve inside the tympanic membrane because it sends the signals of fullness in the middle ear. The tympanic nerve plays an important role in the regulation of middle ear pressure. Cutting this nerve alleviates that signal, but does nothing for the MD or tinnitus as I have been told. I was considering it because of my constant fullness and tinnitus I live with now, but this only seems like a band aid approach and once it's gone its gone but my feeling of fullness is so bad. Seeing a chiropractor now because my cervical spine is so misaligned and out of wack. Chiro says this could be a cause of the fullness and pressure I feel also so I'm giving that a go. Pretty sure my meneire's is causing everything I feel so I'm pretty much trying anything I can for any kind of relief.
     
  2. navate

    navate New Member

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    Hi Cheryl, You were so generous in talking about your VNS surgery. Do you mind answering some questions I have in regards to what you went through during and after surgery? I am in the process of deciding whether to have VNS. have MD managed for 20 years. Now it progressed to drop attacks with many small vertigo during the week. Still have hearing in the affected ear. It would be a great help if I know more about the surgery.
     
  3. Cheryl

    Cheryl Active Member

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    navate,
    Please ask me anything you want. You can do it here or feel free to send me a PM.
     
  4. navate

    navate New Member

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    Cheryl, thank you so much for willing to answer my questions! I'm not sure this is a PM. Here are some questions:
    1. Did you have an endoscopic retrozymoid surgery or a different approach?
    2. You mentioned that your balance nerve was well damaged, as is mine, so how long did it take for you after the surgery to be able have basic functions in the house (walking, cooking, showering).
    3. What were the side effects of cutting the cranial and dura and how long they last? Sever pain? light soreness? Headache? Anything else?
    4. In the days and nights after the surgery do you recommend to have someone with me in the hospital for 24 h?
    5. Did the surgery eliminated the vertigo and drop attacks completely?
    6. Did the surgery made changes to the fullness in the ear?
    7. Do you feel that after the surgery, until now you are back to normal functioning?
    8. Did the surgery make anything worse?
    Can't think of anything else for the moment. Anything you choose to tell me would be so valuable. I couldn't find much information on post surgery experience.
     
  5. Cheryl

    Cheryl Active Member

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    navate,

    1. I had the middle cranial fossa approach. It was explained to me that this approach affords the surgeon the best opportunity to section the entire nerve. During this approach, the brain has to be lifted and slightly pulled forward to get to the nerve. A former member here, Pupper, had a VNS using a different approach and testing later indicated that the entire nerve had not been cut. He had to undergo a second VNS on the same ear. His posts are here and if you do a search for them, you can read his account.

    2. I had basic function right away. The day after I came home from the hospital my husband went to work, the kids went to school and I was home alone. I camped out on the couch for a few days because my bedroom was upstairs and I didn't like the bouncy feeling I got in my head when navigating the stairs. I was able to walk around the house, fix myself something to eat and shower. I was told pre-surgery to have a walker waiting at home. I never needed it.

    3. I can't say that I ever experienced a great deal of pain. I did have a headache for a couple of days. I didn't have any pain from the incision, as there are many, many nerves running through the scalp and when they were cut, there was no feeling at all. The area was numb and remained that way for a good, long time. My incision started in the hairline at the temple, so it was sore in that area and it was uncomfortable when I chewed. I experienced double vision and had to cover one eye when reading or watching tv. That lasted for 2-3 days and resolved on its own.

    4. I think it's personal preference on having someone stay with you for 24 hours after the surgery. My surgery was early in the morning and afterwards I was taken to ICU and remained there until the next day. I was completely out the entire time I was in ICU, except for a brief time when I first woke up from the surgery. I talked to my mom and my husband and mentioned that I had a headache. I was given a shot and I didn't remember anything after that until I was being moved to a regular room the following day. My husband stayed in a nearby motel. The day after the surgery he came to see me and I told him he should go home and I'd call him when I was discharged. We live nearly three hours away from the hospital where the surgery was done. I didn't feel like I needed him at the hospital. I was sitting, reading, watching tv and going to the bathroom unassisted.

    5. The VNS eliminated the vertigo completely. I'd never had a drop attack. Even though I never had vertigo again (from that ear) I could still tell when I would have been having vertigo if not for the VNS. It was just a feeling in my head and not feeling 100%. Sometimes I needed to sit down with my head back and close my eyes or lie down if I could. My VNS was in 1994, so I don't remember the particulars very well on this. I don't recall how long this lasted.

    6. The fullness in the ear was not gone immediately after the VNS. Again, I don't remember how long it remained, but it gradually diminished and to this day I don't have any feeling of fullness in the ear. The tinnitus was pretty bad after the surgery and stayed around for a very long time. It could have been a year or so. Today, I have a soft jingling sound in that ear and I don't even notice it anymore unless I listen for it.

    7. I was back to functioning normally after the VNS until my Meniere's became bilateral. The other ear was diagnosed in 2008. With the first ear, my first symptom was a whopper of a vertigo attack. The first symptom in the second ear was hearing loss. I have profound hearing loss in the VNS ear and severe hearing loss in the other. The hearing loss in the VNS ear is not from the VNS. A year prior, I had an endolymphatic shunt surgery gone wrong and that's when the hearing loss occurred.

    8. The only thing I can think of that was made worse by the VNS is navigating in the dark. This includes driving. I feel disoriented and spacey driving at night, so I don't. Not everyone has this problem following VNS. Oh, and at a followup visit after the VNS, a doctor asked me to close my eyes and stand on one foot. I failed. And, you know how often you see people standing around on one foot with their eyes closed. :rolleyes: I could do anything after the surgery that I could do before. I had the surgery in mid-November and after Christmas I was up and down a ladder painting two rooms in my house.

    After the VNS, I didn't notice improvement from day to day, but rather from week to week. At first my head felt heavy, like a bowling ball, and I had to lie down often, just 15 minutes at a time. It will take time to recover from such a big surgery, but as I was told, you will continue to improve for a year after the surgery.

    I'm sure you realize not everyone has the same experience. I've heard stories from people who couldn't even walk after a VNS. It will depend on how much function you have left in your vestibular nerve. As I said before, my nerve was badly damaged after having had Meniere's for over 20 years before the VNS. My good side had gradually been compensating for my bad side. My surgeon found that my nerve had nearly severed itself and his job was made easier because it was only being held together by a single thread.

    Even though I developed MM in my other ear, I've never regretted having the VNS.

    If you think of anything else, let me know.
     
    • Winner Winner x 1
    • Informative Informative x 1
  6. EkkoMusic

    EkkoMusic Member

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    Just curious now, what is the order of operation now regarding treating the second ear? Is surgery not viable on it since you've had a VNS on the first ear?
     
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  7. Cheryl

    Cheryl Active Member

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    EkkoMusic,

    Meniere's in the second ear has not been as bad as the first one. I've never even considered having any type of surgery on it. I would never, ever have another shunt surgery, due to the first one being such a disaster. From what I understand and have read here, VNS or labyrinthectomy is possible on a second Meniere's ear, but fear of the unknown would keep me from entertaining that possibility.

    The first few years with MM in the second ear were pretty brutal as far as frequency of vertigo, but those attacks were different. Instead of BAM, instant vertigo, it came on slowly, then became faster and slowed again before stopping. The vertigo attacks were shorter, lasting 4-5 hours instead of the 12-14 hours with the first ear. In the second ear, I have no aural fullness and the tinnitus is tolerable most of the time. The only time it really bothers me is when it become pulsating.

    Other than an episode of BPPV every once in awhile, I haven't had vertigo in about six years. Knock on wood.

    I can't see myself ever having any more surgeries on my ears. Should the vertigo return with any frequency, I certainly could change my mind, but the thought of what life might be like after a second destructive surgery keeps me from seriously considering it.
     
  8. navate

    navate New Member

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    Cheryl
    Your detailed experience is very valuable. Thank you so much for caring and taking the time to put it in such clear words. I hope that even with second ear affected you manage to enjoy your days.

    You had the VNS almost 30 years ago. Not much has changed since then, surgery, treatment or research wise.

    Next week I have a meeting with my surgeon. I'll probably choose to have the surgery and continue from there, knowing it's not the end of dealing with MD.

    A peaceful day to everyone.
     
  9. Cheryl

    Cheryl Active Member

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    navate,

    I wish you all the best in whatever you decide to do and if I can answer any more questions for you, now or after you see your surgeon, please don't hesitate to ask.

    I hope you'll continue to post here and if you do have the VNS, please share your experience.
     
  10. Tim Spetzman

    Tim Spetzman New Member

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  11. Tim Spetzman

    Tim Spetzman New Member

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    Swell143
    I have seen many Chiropractors over the years. "The popping sound is the air in the joints being removed. Much like if you crack your fingers." I found much relief from upper cervical adjustments. I also get TMJ on occasion, that can affect Meniere's symptoms too I'm told.
     
  12. Swell143

    Swell143 New Member

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    Austin TX
    Tim, I'm having success with the cervical adjustments so far. Haven't experienced dizziness or vertigo since last November. My OTO is happy for me but also said my Meniere's may just be in remission, so I don't know honestly. My chiropractor pointed out that I had a straight (not curved) spine in my neck as well as a badly twisted C1 vertebrae. All I know is since I've started the adjustments, I have not had any issues. I've read that Meniere's has nothing to do with a cervical issue, totally separate issue so I'm cautiously optimistic. Guess time will tell.
     
  13. yellowboy

    yellowboy Active Member

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    I would like to ask - do either of these procedures relieve tinnitus or fullness ?
     
  14. Tim Spetzman

    Tim Spetzman New Member

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    From what my Chiropractor told me, in my case the atlas joint and C1 are frequently out of place. That causes blood flow issues, nerve issues, and inner ear drainage problems.

    Hope this help you...
     
  15. Swell143

    Swell143 New Member

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    Austin TX
    Tim, they have more me, especially with the fullness feeling. I still have tinnitus but its not as pronounced and annoying. I can live with it at this point. Good luck
     
  16. Tim Spetzman

    Tim Spetzman New Member

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    I'm happy you're getting some relief!!!
    I pray that your relief continues for years to come.
     
  17. redwing1951

    redwing1951 Well-Known Member

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    Definitely with fullness but tinnitus still present but nothing like it was prior to the labyrinthectomy.
     
  18. Ali Q

    Ali Q New Member

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    Cheryl,

    I’m a new member, but have been reading through the forums since early last summer. I’ve been struggling with Menier’s since October 2018.

    The reason I didn’t join sooner is because I didn’t feel that I had anything constructive to contribute.

    Long story short, I have tried low sodium diet, diuretics, prednisone, Valacyclovir, betahistine, NUCCA, acupuncture (mostly for tinnitus) and thanks to this forum, John Of Ohio’s regimen. While it didn’t resolve my Menier’s symptoms in the long run, I did gain a new appreciation and understanding of supplements and how to best utilize them. I will continue to take some for better overall health.

    I’m extremely grateful you for your willingness to generously share your experience, your knowledge, insights and wisdom managing your Menier’s.

    Your posts regarding your VNS experience provided me with the courage in February to schedule my labyrinthectomy for March 1, 2022.
    Different surgery, but this what my doctor recommended.

    Just coming back to say thank you. Since I a just joined, last week, I’m still learning how to navigate the site as an actual member, post op….
     
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  19. Cheryl

    Cheryl Active Member

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    Ali Q,

    Welcome to the forum. I'm glad you decided to join. I'm also glad you found my posts about my VNS helpful.

    Soon, you will be able to share your knowledge and experience with a labyrinthectomy. I wish you all the best with your upcoming surgery. Once you recover, your life will be so much better. I hope you stick around here a long time to share your experience with others trying to make a decision about a laby.

    When is your surgery? Your posts states it's March 1, but that has already passed.
     
  20. Cheryl

    Cheryl Active Member

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    My mistake, Ali Q. I saw in another post that you've already had your surgery. How are you doing? Wishing you all the best in your recovery.
     

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