MVD Surgery Recovery

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I am wondering how the recovery is after Mvd surgery. I am facing this and am alone with no one to be with me. Can it be done? I am to the point where I am reasy to throw in the towell. Thanks

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  • Posted

    G'day Kevin, have you spoken to your Neurologist about this to find out if there is any home assistance or convalescence place you can get or go to. Also, where are you, UK, USA or Australia?

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  • Posted

    Kevin18765.

    I can say so far that I don't have shocks to my face anymore. Yes, you will need someone with you. At this time all I can say is that I wish that I had never had it, I also wish that I had a second third and fourth opinions b4 having my surgery. You can read my post again to c what I am going through.

    I Can't advise you but I will say this, get a second third fourth fifth sixth opinion before you have it

    Please ask your doctor how many of these kind of surgeries he has done, and also, him if he's going to be cutting a muscle in your neck and ask him why, you will need to know what the purpose of cutting the muscle in your neck.

    I was in hospital from 27th of July, to August 8, and still have double vision. I have an opthamologist appointment on the 19th of September, have to wait until then to see what is going to be said about my eyes

    God bless,

    Us and keep us and give us peace

    I will keep everyone in my prayers

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  • Posted

    I have heard MVD is a really good way to go. I wanted that but because of MS they wouldn't do it so I opted for Radiofrequency where they put a needle in my cheek and burn the heck out of the nerve. They started by not burning real hard but it kept coming back so this last one had a harder burn. I'm hoping it lasts a long time.  Some MVD works great and some don't. Everyone is different.  I have had to learn to accept that I have been cursed and made sure my doc and medical team will respond quickly whenever it comes back.

    good luck with your procedure. Hopefully it will work well and get rid of it!

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  • Posted

    I think it's possible to do it on your own, but barely. You really need someone to get you around as you will not be able to drive for several days afterwards (10 days for me). You'll also need someone to spot you for the first couple of days around your home as you recover and want to clean yourself, etc. It's a lot of work to do by yourself.

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  • Posted

    I'm 44 and in good health, other than the TN. My MVD was about a month ago. You will definitely want someone with you for at least 3 or 4 days after you leave the hospital. Even getting up to go to the bathroom or shower can be challenge. I was only in the hospital for 2 days, but if you can stay in the hospital for 5-7 days, that would be very beneficial.

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    • Posted

      Hello Clint72

      I am so pleased ur MVD went so well, and that u had no prolonged problems afterwards.

      I was in perfect health, walked 12,000 steps a day, doctors told me everything was a go for this procedure and look at my problems.

      I just don't believe MVD is right 4 everyone.

      I don't want to make people who want 2 have this run away, but having double vision from July 27, 2016 to now is awful.

      I advise people to get one two three four and five opinion before you have MVD.

      Clint7, what state did u have ur MVD done, and what hospital?

      God bless,

      God bless you and keep you and give you peace

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    • Posted

      Clint71,

      The side of my head where I had the surgery it feels really hard and numb do your head feel like that.

      When I see my doctor again since he put me off for so long, I am going to ask him how many he has done.

      Just hearing u say ur went ok makes ne feel bettet.

      Did u have the pain in ur gums and the electrical shock to ur face? I also had a crawling feelling in skin ontop top

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    • Posted

      Half of my entire head is mildly numb, even half of my tongue. The surgeon said that is to be expected for 4-8 weeks, generally speaking. I had electric shock pains in my face. For the record, he said my case was the worst he's seen, and still the pain was gone from the moment I came out of surgery. The success rate is about 85%.

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    • Posted

      Clint671

      I pushed wrong button and I didn't get to finish but this is what I want you to ask.

      Did you have a crawling sensation under your skin on top of your head? This is what I had along with the electrical shocks to my face and the pain in my gums. The electrical shocks with like 10 times that of someone shoking you after they rub their feet on the carpet.

      God bless

      you and keep you and give you peace

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    • Posted

      I didn't have the crawling sensation, but I've read that's not unusual. Mine was purely electrical shock pain, at times so intense I nearly passed out.

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    • Posted

      Clint71

      I don't have numbness on tongue, I do have this crawling sensation in head but in different spot, then b4 surgery. I guess it's because of the numbness in the head.

      Do you have spasms in your neck on the side were surgery was done?

      Also, do u get muscle spasm(cyclobenzaprine) in ur neck.on side were MVD was done.

      I was told by surgeon PA that he cut a muscle in my neck.

      I don't know the reason, for this but I will ask when I go back for another appointment on September 13th 2016, with jis P.A, secretary said he might be able to step in.

      LOL.

      I will tell u now he will do more than step in.

      My hubby goes with me yet he just sits and ask no questions, I was on so many drugs for hesdaches (darco 7.6), and nausea(ondansetron 4mg) I couldn't ask what I wanted. Told hubby to ask in case I couldn't remrmber yet he just sat there.

      That Darco makes me have bad dreams I don’t take it anymore. Aleve gets rid of my headaches.

      God bless

      You and keep you and give you peace.

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    • Posted

      Clint,

      Could you please tell me the name of the surgeon in Kansas that you used? I had mvd 4 months ago but they also did partial rhizotomy and I need a second opinion because I have no sensation on one side of my face. No more TN pain but 24/7 discomfort. I need to speak to a surgeon who has done many procedures. Thank you.

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    • Posted

      Clint71

      I just remember when I first started all I had was electrical shock, only.

      I believe I waited too long because after that it is when I started to get the pain in my gums.

      Instead of going to doctor I went to dentist, made him pull a good teeth. I still have the teeth.

      Dentist sent me to a dental surgeon who sent me to my primary care doctor primary care doctor told me to make appointment with neurologist put me back in til October of 2016 then I called another neurologist who scheduled appointments on for months from the time its first started then I finally got appointment with a neurosurgeon but that was like 3 or 4 months later after the shocking started, then I was getting pain in gums. I think had I gotten it done as soon as I was getting only shocking and Dr we're not putting their dates back on their schedule so long I would not be with us double vision right now. I'm rambling but I am talking with text.

      I was not getting pain in my gums until after I made the dentist pull my teeth because I was getting the electrical shocks only.

      It felt like the first shock

      was going through my back teeth, and also my face.

      This might have something to do with the tooth as someone else commented.

      My problems didn start until colonospy/surgery/mixed meds.

      Did u have a tooth removed or was one hurting u

      I had MVD and my gums still hurt but only slightly.

      Anyone have the Phantom teeth feeling.

      Bless you

      and keep you and give you peace

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    • Posted

      Clint71

      What part of Kansas is this doctor in

      that did your surgery and what hospital?

      Knowing the hodpital could help others

      knowing a surgeon who has 500 surgeries under his belt is good for others facing this dreadful vonditiom with MVD

      God bless

      you and keep you and give you peace

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    • Posted

      Hi, i had blury vision for a few weeks post surgery and during the time that i was on Tegretol ( pre- surgery) , but that has gotten much better. I have many other side effects post surgery. No TN pain, but constant discomfort from the face numbness and pressure/ pulling like sensation, flared sinus in the left nostril and eye ( waters preiodically through the day and eyes are more sensative to bright sunlight), post mvd MRI also showed a small Pontine Infarct ( brain stroke). Although i am not seeing effects of the infarct at the moment, i want to have an MVD expert look at my case to see if any of this can be releived or i just have to live with it. Most likely, i know it's going to be the latter.  In typical medical fashion though, my surgeons who seemed so caring pre-surgery have pretty much ignored me tthrough my follow ups and now have no future appointments or scans set up to see how i am doing.

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    • Posted

      Clint72,

      I will know where to go if I learn of this happening to anyone that I come in ontact with. Is there a Facebook page dedicated to MVD? You are a success story.

      I had my very first headaches today, since they stopped. I told you I was having the crawling sensation. The headache was in that spot.

      I was a very active person before that I I help kids in Edmond, Oklahoma. I Really miss my kids and this is holding me back.

      I have gained 10 pounds and I really miss walking 12, 000 steps daily.

      I was about to set up a walking group with the neighborhood women, but with double vision I can't do.

      Your success story has pushed me , once I get my eyes corrected and I'm back on my feet.

      I''m going to do

      even more than I used to do.

      Today Icalled a TN support group and from now on the way I go people that I see I would tell him the story about TN.

      I have learned that it does not matter how good your insurance because I had United Healthcare one of the best insurance and I came out with double vision.

      I will also make sure that I' mentioning your doctor in Wichita . And if I run into someone who has this Dreadful disease and it is a disease.

      I want to thank everyone on this forum for sharing their stories

      I am going to dedicate my life to helping doctors find out how this disease starts, if its thru meds/mixing meds, procedures done or surgeries or just a tooth that is good being removed.

      I weight 220 pounds last year,, walked it down to 155, was on way 2 ( 150. )

      Now I am ten pounds overweight. All I can say is double vision (devil) get out of my way.

      I am going back to walking even if I have to do it with 1 eye closed I have so many allergies to meds. That is why I am so drugged up and hubby want let me drive with the one eye.

      Walking will b my new car. Luv all u MVD sufferers.

      Thanks 4 all u guys help

      ,God bless,

      you and keep you and give you peace

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    • Posted

      Saaz 79347

      I had surgery on left side of head

      I guess I'm healing because I'm beginning to get crawling on left side of head

      Yesterday I had headache left side of head but took medication before they got bad

      Spasm in neck because PA told me that Doc cut a muscle in neck, he has not told me this yet

      This is y I'm having spasms in my neck

      Now this is what gets me

      My neurologist not my neurosurgeon not his PA, but my neurologist informed me I had a mini-stroke

      Yet 2 days of my life is missing

      My family said I could not be waken up

      Until the 3rd day I was in ICU

      I was moved to room evening of 4th day of bn in ICU

      I believe the two days I was staring at the ceiling is when I had a stroke, I certainly hope I was giving TPA

      I say this because my surgeon never told me anything about a stroke or his PA

      How could he tell me and I never seen him until about 3 days b4 I got out the hospital

      I believe my neurologist thought he was putting me in the greatest of hands

      This is what I have on my right side my right nostril feels like a stuffy but nothing's there

      My pelvic(is worse) area on the right side feels numb to the touch as do my right thigh/calf all feel numb to the touch on top of the skin.

      Still don't get why he cut a muscle in my neck on left side so that I will have spasms in my neck

      One thing is good so far

      Yeah! No pain from the surgery site

      Starting to feel crawling on face on left side let's just hope it's from top of head feels numb

      I am sorry but I'm still voice texting I don't see any kind of improvement in my vision

      Checking to make sure that the text don't put anything crazy curse words in. Makes it Very tiring to my one eye

      God bless,

      us and keep us and give us peace

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    • Posted

      Sad to hear that so many people here like us have had so many complications from this condition even after surgery. I hope we all find the answers we are looking for and the pain never returns.
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