Scott, I've been treated at the House Clinic since nearly the beginning. My doctor/surgeon is with House. I guess I'll ask him if I can do the tests to see if I am bilateral. Hopefully he says it's too early in the VNS recovery period for that. Because I really don't know how I'd react to such news right now. Thank you for your advice.
Pupper I am so sorry to hear you are struggling. On the other hand I do believe you ARE going to feel better eventually. Stay strong and try to be positive ( I know it’s hard!) sending you good thoughts.
I'm sorry to hear you're having a hard time. Also surprised there wasn't much screening or consideration done for MAV or those other acronyms. MAV in particular can go hand-in-hand with MM for lots of people. That being said, it is really and truly early days for you, post-VNS. I know it's hard, but try to be patient as your brain sorts itself out and finds its new normal. Everything I've read about VNS also says recovery is a months-long affair, or even over a year. Definitely not a matter of weeks. Hang in there!
I know how difficult this must be for you but...the most important element in your recovery is to keep moving each and everyday. Your brain needs to adjust to one vestibular nerve, one side. The more you walk no matter how difficult the sooner your brain will say "we can do this'. I am sorry you are struggling but you have to move it move it move it... I wish you the best.
I'm wishing you well, Pupper. It sounds very difficult to have made such a big decision and been through so much and still have the kinds of issues you are having. I also wondered about MAV (migraine associated vertigo). I get vertigo from 3 sources--MM, MAV, and BPPV. Different things eliminate the vertigo from each. So it seems possible that you've eliminated the MM vertigo, but you've got some MAV going on--if so eliminating the right migraine triggers can really help. Or maybe not! Just an idea in case it helps.
Pupper , I have had vns surgery in Dec2014 it was a horrible recovery . and I finally got through it . but now as of about the last 3-4 months I am having the dizzy spells . high pitched but low volume ringing in my ears and it sad to say I am not sure which one . feels more like the good ear . and then I will get the real loud ringing in good ear . I am scheduled for the lamby on dec7 but am going to talk to my doc about the bilateral before we do the surgery on the bad ear . I am terrified as I may be going bilateral . I cant say I know exactly how you feel but it is a close comparison . I am so disoriented , brain fog , and really frusterated after all I have done to still have these issues . I have been dealing with this since I was about 5 cronic ear problems and I am fixing to be 48 . I have had 6 right ear surgeries so far . the first 2 were for the mastoid cleostetoma . and I guess the others have been for meineres . and now another to come . Can we all say we are so over this !!!!! good luck to you and everyone else battling this .
Had a 7 hour spinning episode yesterday. My second in 70 days post VNS. Can someone explain why, if my bad ear nerve was cut, migraines or a virus could still make me dizzy daily, along with having sporadic vertigo attacks? I do not know if I have MAV or virus. I'm just asking the above question. I see the migraine specialist Dec 23. I won't be around much. It's hard right now. Recovery not going well. Still pushing though. Be here more when I'm better.
Thanks for checking in, Pupper. I was concerned when you didn't post for awhile. You don't know how sorry I am to hear you had a vertigo attack. I know you are terribly disappointed in where you are in your recovery right now. I don't have any answers about having vertigo 70 days after having a VNS. I don't know if that's normal or not, but I'm thinking you should be past that stage. The first thing that came to my mind was that during your surgery, the nerve was not completely severed. If some of the fibers were wrapped up in the cochlea, they could have been missed. An ENG would show if you still have vestibular function in your VNS ear. You still have one functioning vestibular nerve, so if you have MAV or a virus, the vertigo is probably coming from the good ear. I'm sure Dec. 23 seems months away to you. I hope you get some answers. I know it's hard. Hang in there.
I'm so sorry to hear that happened, Pupper. Not only does 7 hours of vertigo sound awful, but it sounds so frustrating after all you've been through. If you suspect migraine, check the list of migraine triggers, and see if you can figure out what might be setting it off, then try to eliminate those. That's something you can do before Dec. 23. But I have never had a vertigo episode near that long from MAV, so I wonder if that could be it. Have you considered BPPV? That can be addressed easily and well, so that one is good problem to have.
I'm sorry to hear that. To answer your question... Surgery won't do anything for you if you have MAV or are bilateral with a viral cause. if you're unilateral, it won't stop the virus from moving to the other ear. Even some folks who have had the laby take AVs to stop the progression. I hope you feel better soon!
I hope you feel better soon. Lean on those doctors. See Dr Derebery for a consult if you can. Something is wrong or misunderstood. It should be diagnosed and addressed. Insist on it being properly addressed. You deserve proper treatment and there will be an answer.
Pupper hang in there. I hope you will get at least some answers to your questions during your next visit. Would you consider laby?
Awww, Pupper. I’m so sorry you are still having vertigo. That sucks. I have no advice, just wanted you to know I care.
Thank you for the replies. Helpful. Today I sent my doctor the following email: "Dr. ______ I had a 7 hour spinning episode yesterday. My second such episode in the 70 days since my VNS. (The first attack was on day 28. The second on day 70). The episode appeared to come from my bad/operated-on ear, since the tinnitus and hearing loss increased significantly in that ear during the attack. And I just "felt" it came from my bad ear. I can't say for sure. As my good ear doesn't feel right generally, as I've mentioned before. I see the MAV specialist you're sending me to on Dec. 23rd. That seems like a very long time from now, what with my daily dizziness and sporadic attacks. Could you prescribe an anti-viral? I dread the thought of a virus going to my good ear and causing bilateral MD, while I just sit here and wait. Thoughts? Pupper"
His response: "Will phone in Famvir for 2 weeks." His responses are always curt but at least he responds quickly. Almost always within hours. Why only a two week supply? I suppose that's as long as it takes to figure out if it works?
Uh, no. It could easily take longer than two weeks for them to work,if they’re going to work for you. I don’t think he’s willing to entertain the idea, but wants you out of his hair, so he’ll let you have a two week trial. That’s just wrong. He doesn’t sound like the kind of doctor I’d keep... What you’re experiencing right now makes me think of imaginative uses for virtual reality tech. ENTs and the like should be required to take a 7hr, or more, VR roller coaster ride. Then they can truly know the hell we get to experience.
so sorry to hear...hope you feel better soon! you could always tell the doc that they are working...get him to extend the script...then move on to another doc who is more progressive in his/her approach.