Posted , 4 users are following.
I am 3 weeks post MVD surgery and as many people i have full facial and scalp numbness, on surgical side my concern is that my tongue ( also numb ) feels as if it is swollen. I was wondering if anyone else had this feeling.
0 likes, 9 replies
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saaz79347 christine96933
Posted
Hi Christine. I have the same symptoms as you. I am 2 years post mvd and my numbness around the mvd side of my face and eye remains. In my case the numbness was explained to me by my surgeons. They had to do a partial rhizotomy (intentionally damage the nerve) to be sure that I don't transmit any pain sensations through the nerve. When they opened me up, they made a judgment call that mvd alone might not solve my problem long term. Hence the operating table decision to do the partial rhizotomy. It was a trade off. No TN pain for a lifetime of numbness among other agonizing side effects. Click on my name to read my other posts. Your case may be temporary and different. Check with your surgeon to know exactly what was done. Feel free to ask me anything.
christine96933 saaz79347
Posted
Hi Saaz,
Thanks for responding. Honestly this is all so terrifying bc when you talk to your surgeon their response is “ this is all normal” really?? Cause you had this done? “ when i asked him he said “ it could go away in a few weeks, months or it could just be a trade off for the electrical shocks in your face” what kind of answer is that??? My biggest thing tho is did your tongue feel swollen? I dont know if its just bc it numb and i cant feel it or if its bc of trama to my tongue from being intubated. I wasnt really given any info on side effects of this surgery by my surgeon so i went into it thinking id come home with a headache but thats about it. Instead i ve come home with zero energy, shaky, weak, numbness, headaches and what feels like pressure inside my skull. Kind of feeling like i made a mistake doing this but well no take backs now 🤦🏼???
saaz79347 christine96933
Posted
They told me that the numbness would go away in 6 months to a year. 2 years counting and it's still there and with the same intensity. When I went for a follow up 4 months post surgery their response was " it's a trade off. it's better than having the TN socks"
I still have numbness in the left side of my tongue and mouth . I can't chew food there because I've accidentally bitten my tongue as I can't feel it or food there. Although I don't have much feeling there, when I bite it , it hurts like hell.
I also have pressure that I feel behind the left eye and head. Many times a week. Feels like something is pushing from the inside. Makes it hard to function or focus on anything during that time. I think they don't know enough about this procedure as it is a rare condition.
christine96933 saaz79347
Posted
I totally agree. Can i ask how long before you started feeling back to yourself - the numbness of course as in getting your strength back? I also seem to feel better for a day or 2 than i end up right back to cant get off the couch. Its so frustrating and its not like i feel better and vacum my house. I ll load the dishwasher and just feel better ya know?
sharon33606 christine96933
Posted
Oh Christine I am so sorry to hear this. Was due to have MVD surgery however having read similar responses as yours, have said I will not go with the procedure. When I had the glycerol route 4 years ago, I had very similar numbness and still have it in the lower part of my jaw and inside my mouth. Also have ear damage which is still very annoying as when I clean my teeth it feels as if the toothbrush is in my ear- not pleasant. I now take legal drops of Cannabis Oil and have come off half my meds, and am able to cope very well.
Do probe your consultant to get some answers as to why you are feeling as you are.
Best wishes.
saaz79347 christine96933
Posted
Christine , I was athletic prior to this happening 6 days a week combination of gym and sports but after mvd I was told to take it easy for at least 2 months . I wasn't able to much physically for 3 because I had other complications post surgery like a minor brain stroke. 6 months post OP, I got back to doing about 75 percent but not the same frequency. Now two years past I can do everything but its random and depends on the day.Today , A few times a week when the pressure has me down and out, I have to look for a very small window of time when I feel ok and I can't waste it relaxing as I have to finish everything I couldn't do earlier. Recharge time has reduced greatly. Hope that makes sense. Were you able to find my previous posts? I have a lot posted there , and also a lot of questions because I too didn't know what was going on.
rob07566 christine96933
Posted
Hi Christine. The straight answer to your question is YES - but, in my experience, it gets better so don't panic!
I had an MVD two years ago to rescue me from the effects of a badly performed MVD 13 years earlier.
Like one of your other respondents, that 2nd MVD involved damaging the trigeminal nerve . . . which caused facial and scalp numbness such as you are feeling + the horrible "swollen tongue" . . . In my case, and in retrospect, I don't think that my tongue really was swollen - but it certainly felt that way! My surgeon (I had private health insurance and did a lot of research to find one of the best guys in the UK) said "give it 6 - 12 months; no two patients are the same . . " I am 2 years 'down the road' and, for me, his 6 - 12 months was maybe a bit optimistic. At age 70, things can take a bit longer!
So, after 2 years, my tongue no longer feels swollen; the facial numbness is much reduced; and, importantly, I have adjusted to what after-effects remain . . . On the down side, I no longer accept invitations which involve eating in public and, if it isn't a thin rimmed glass or cup/mug, I use a straw .. . On the plus side, I am free from rolling on the ground & screaming in pain several times a day! :-)
christine96933 rob07566
Posted
Rob,
Thank you so much you have given me just a little bit of hope that this will get better over time. Yes i think the dr’s all say a few months for numbness to go away when in fact it could take years, the damage from the disease plus the surgery is going to take its toll. Thank you also for making me feel not alone in the swollen tongue department 🤦🏼??? It makes me crazy looking at my tongue trying to decipher if its swollen or not. Im very happy for you that your side effects have deminished, i hope they continue too. I have 1 question for you. I have headaches that when i lay down my head INSTANTLY goes on fire as if i have gasoline in my skull that gets lit by a match... did you have this? And if so did it also go away??
Thanks so much,
Christine
rob07566 christine96933
Posted
Hi Christine,
The body is very good at forgetting pain but I do remember headaches when I lay MVD side downwards. They certainly disappeared over time although I do still sometimes get a flash of pain around my left ear and eye (the MVD side).
Hope that it continues to improve for you. It's early days yet and I'm sure that it will.
Rob