Problems after MVD operation for TN - any advice plse?

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I had MVD mid June this year, I am still struggling with numbness to tongue, gum and mouth on the left side where operation was performed behind my ear.  Just a few weeks after operation possibly due to biting tongue and lip have now got Burning mouth syndrome, consultant told me to see a dentist!  I am now waiting to see oral surgeon to see if he can help.  I still have a painful skull and struggle with sleep as my scar is still sensitive and have pressure around that area as well as inside of ear.  The facial TN pain has gone however getting waves of tingling on my face - has anyone else experienced this if so can you advise?  Consultant said as the nerve wasnt cut it should get a bit better, however the numbness is the price you pay for not having TN pain!

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  • Posted

    We had the same operation at the same time it sounds like. We are also experiencing the same after effect in the numbness. Per my doctor and others I have spoken to, the numbness can last up to a year and could be permanent. The other issues, such as the sensitive scar, I have read a little about and it seems that in every case I have heard of, that goes away as the body heals. The tingling is simply phantom pain. I experience it from time to time. I would speak to my doctor again and run this by them.
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    • Posted

      Thank you for getting back to me. It is good to hear of someone with similar experiences. I am back to doctors on Weds but they don't know much about TN but am off to see another consultant for burning tongue and lip which started as a numb feeling and is constant. I have read this can be damage to the trigeminal nerve. Any way only time will tell. Thanks so much for getting back to me.

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  • Posted

    Hi Jill, sorry to hear about what you are experiencing. I had the same surgery in March of this year and i can tell you that my experiences were very similar to yours. I would like to tell you what i learned through this and maybe that can help you.

    I still have full numbness on the TN side of my face 9 months post surgery. I was told that in my case along with MVD, the surgeons also decided to do a partial rhizotomy ( this is where they scar the TN nerve just a little bit so that it does not transmit pain signals incase the MVD does not work).  You may want to ask for post surgery dictation notes to find out if they did this procedure with you as well. ( Surgery dictation notes are given by a surgeon to his staff during surgery to record everything that was done and this issomething that a patient can ask for).

    My surgeon told me prior to surgery that partial rhizotomy was not something that they would hope to do, but once they go in and they decide that the TN nerve is too tortuous and the MVD may or may not work, they make a decistion on the spot to also do a partial rhizotomy to make sure the patient has no TN pain post surgery.

    In my case the PR procedure along with the MVD has caused the exact same symptoms you experience.  Constant pressure on that side of the face and numbness ( no feeling yet it feel like someone is pulling that side of the face),  Pressure in the eye and the ear.  Tingling / burning sensation on the TN side ( i won't call this Ghost pain because Ghost pain according to surgeons implies that it is psychological and not real and the burning sensation is very real and not my imagination). There is no real medical answer for all of this. I gather from talking to several neurosurgeons that because the nerve has been disturbed or slightly damaged to preven sending pain signals, it is now only able to send incomplete signals to the face and this can be felt in several different types of sensations to each individual.

    As far as the surgery scar and site healing, it took my almost 7 weeks post surgery before i could get more than 2 -3 hours of sleep each night. I had headaches from brain swelling, surgery site pain, fluid accumulation at the surgery site and even a micro brain stroke 6 weeks post surgery. All of this healed around 2.5 months post surgery except for the numbness and the burning sensation discussed earlier. I am told to expect numbness etc to last 1 - 2 years and if it doesn't go away by then, it is most like permenant and as you said , the price of getting rid of the TN pain.

    I would say you should visit a dentist if you bit your tounge and need to take care of your wound, but most will know nothing about TN and you should not get any teeth pulled or dental work done until you speak to your neurosurgeons.

    This post was long but i am hoping it helps you a little as i was very frustrated in the months post surgery, looking for answers to these same issues and nobody seemed to know. The surgery after care from the surgeons was close to zero! Their only answer to my questions was " well it's better than having TN pain right?"

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    • Posted

      Thank you so much and your response it is so helpful. I kept biting my tongue and lip due to swelling and numbness. I am now going to oral surgeon in December as my tongue and lip have a permanent burning sensation. I did find some info that this could be due to damage to trigeminal nerve. You have been through so much and I hope that you get some relief soon. I haven't worked for 12 months now and see no light at the end of the tunnel but fingers crossed for both of us!!! Thanks again for getting in touch it is so helpful.

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    • Posted

      Saaz

      Where was this carried out please?

      Was this private or NHS treatment?

      Would you be happy to release your surgeons name?

      Knowing what you know now, what after care would you like to have seen put in place?

      How many follow up appointments wer offered and how far apart were they?

      Sorry for the badgering questions!

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  • Posted

    Hello Jill

    This sounds a bit grim and I am sorry that you have been hsving these problems. All I can do is sympathise at the moment because I'm waiting to go in for MVD in early 2017. However there are loads of people on this site who have gone through MVD, many have had some transient neurological and related problems but the great majority seem to have resolved with time (some months). Are you in U.K? Your neurosurgeon should be taking a bit more care of you than seems to be the case from your posting.

    I hope you get some useful info from forum members. If you're in uk then you should look at the TNA site and they have very good helpline facility and will answer queries on all aspects of TN.

    Good luck and keep us informed of your progress.

    Cheers

    Big D

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    • Posted

      Thank you for your comments, yes I am in the UK and will try the TNA website. Its good to connect with other people going through this,awful illness. The MVD can be a great success and I'm sure yours will be too. I'm just one of the unlucky ones but hopefully in the future things will get better.

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  • Posted

    Jill55165,

    Numbness not on all of scar but where titanium plate was put on skull, I cant sleep on sude were surgery was left side , can only sleep on opposite none surgery side.

    I do get a runnning feeling intop of head sort of like gaving fly bothering me intop of head.

    I do hope all the problems that you are having will also go away after we are healed for my MVD surgery.

    I'm going to get into a pain management clinic pretty soon right now I am doing physical therapy to try to loosen up the muscles are tightening up something

    A bit of a slight little pinstick sometimes, I also get pain in gums but not as bad as b4 surgery new neurologist - might be healing because my Neurosurgeon's P.A., said surgeon cut my muscle even he never told me this even in his notes it is not their according to other doctors who have read his notes.

    My new Neurologist cant find it in his notes, neither can he find this MRI my neurosurgeon says was done to shiw I had no stroke, but new Neurologist

    Did blood test to see if I had a stroke and it showed I did not have one.

    I do get a few fly like feeling on my Cheek as if a fly landed on my face but not ever day.

    Numbness in right hand , numbneess, on side of head where surgery was done is beginning to subside, labia is still numb but not as bad as first came home from hospital, leg not numb anymore unless I sleep with leg on top of numb leg,

    Oh, I just found out that I had clear glue on spot were plate is on, skull and this is something syrgeon didnt tell me about.

    My primary care physician said this wasn't in surgeons notes.

    Every day is a mystery to me, I just wish doc was up front with me, oh, and I am still getting slight headaches.

    I have been taking my medication my Gabby 900mg plus 150 mg of oxcar

    before I go to bed but now I have bn taking

    It if I feel the slightest, pinch or pain I take them b4 bedtime.and it has been working

    It was my opthamologist and my opthamologist- surgeon, not at hospital where I had my surgery, who told me my nerves were damaged and it was my surgeons P,A,. Whi told me he cut a muscle in my neck, doc has not admitted it yet, neither does he mention he cut muscle in my neck, he did finally mention he had to cut to move muscle out of way after I firced him to address why I was getting muscle spasms in my neck.

    I do belieeve once muscle spasms are over all will be well done.

    I wish surgeon had addressed my doubke vision when I was complaining about it while in hospital instead of constantly trying to ignore my questions about, this man never let a opthamologist come and check my eyes while I was in the hospital from July 27th 2016 until August 8th 2016.

    I am grateful and I thank God that my neurosurgeon got rid of my shocking and shocking was the worst I just hope when my muscles get tight that the slight twinges of pain that I have in my gums will go away.

    I am sure that that's why I am getting this slight pain, its because of the muscles not being tightend. Time for Gabby900mg/ Oxcar150

    Off to nity nite.

    God bless us and keep us and give us peace

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    • Posted

      Hello there,

      I am so sorry to hear that you are going through all this; I think when we have had our operation, we hope that it would not only give us relief from our TN but that we wouldnt end up with more problems than before.  The only thing the consultants said to me was that I could have some numbness.  I also dont think that we are given enough information prior our operation of the problems that may just occur after.

      Pain management is a great idea, I am also going at the minute and having acupuncture, what I am finding at the minute it is very relaxing but only had 4 sessions but will keep going.  So the pain management consultant will hopefully help yout through this awful time you are having.

      I cant still lie on my head, it depends how I sleep on my 'operation' side depends how my facial "crawling" and pressure is, even my glasses create pressures at the side of my eye and also soreness behind my ear.

      We need to keep going, battling on because I am sure relief will come to us one day, so keep in touch because hopefully in the not too distant future you will come back to say you are feeling much better. Keep pushing the consultant for answers (as I can see you are), and keep hoping and praying and thank goodness the TN pain has gone.

       

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    • Posted

      Hi Jill,

      Reading your post sounds like I was posting it!

      I 'm new to the post.

      I'm 6 weeks  into the surgery and  are having numbness on the whole left side of my face and head.

      inside and out.. mouth.

      My neck hurts and is stiff!  It is hard for me to swallow and taste is gone!

      I get so weary sometimes because this is not what I was expecting or told by my neurosurgeon,

      I am being told that it will get better, but it seems to get worst.  Then the minimizing remarks of the doctors makes it worst.  "SO YOU ARE OUT OF PAIN ..RIGHT"  My response is yes that pain, but traded it for another pain...NUMBNESS..

      GOD BLESS US ALL!

       

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    • Posted

      I’ve sort of returned to this patient forum discussion in absolute desperation as my neuro surgeon and my dentist have both rejected my frustrations post surgery.  I went through MVD surgery at the end of July this year, and although I am currently pain free, I have been left with some of the very frustrating, annoying and sometimes painful in a different way, side effects from the surgery.  I have facial numbness on the operation side of my face, and an extreme tingling or burning sensation, which I feel I could almost cope with even if it were permanent.  The thing I find extremely difficult to cope with is the tingling and numbness or burning sensation in my tongue, which is so much more difficult to cope with because I feel as though I’m choking at times.  My mouth gets extremely dry feeling, and I don’t know what to do to relieve this.  My family and I can now see damage on my tongue, but my dentist says I’m imagining it and this is most frustrating.  My gums feel swollen and this in itself is a sensation that is difficult to bear.

      I am grateful I am no longer in pain, however, as I’ve seen someone else say, I’ve swapped one set of symptoms for another which I really didn’t expect. I’m 5 month’s post surgery and had the condition 10 before eventually even considering going through with it, because of the risks involved.  The tingling is supposed to be a positive sign.  Can anyone out there give me any hope that this may improve over time?

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    • Posted

      Hi Theresa

      Sorry to hear another trade off..

      I know your plight..

      I m numb and tingling in my mouth always.

      My face on the surgery side is numb sometimes...but can be like a vice gripping it ...worst around the eye..

      My neck is still stiff at times...with a terrible soreness this,past week..like it was post surgery...

      I 'm so grateful to God that I don't have the pain anymore ..however I'm regretting having the surgery..

      I was deceived and is very lndignit about what I wasn't told...

      Gratefully Alive

      There is hope for us!

      Encourage me as I try to ENCOURAGE you...

      Mary

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    • Posted

      Hi Teresa.

      I have permanent numbness on the right side of most of my face and most of my tongue. It took me several weeks to get used to it and after a while, I regained a lot of feeling to the point that while it is still numb, I DO have feeling so I can shave and when I get an itch, I can scratch and it feels better. Like so many of the side effects from MVD, give it time ( a year or more in some cases) and things calm down and/or you become accustomed to them. I regained some of this feeling a year after the surgery so you still have time. 

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    • Posted

      I’m so grateful for the encouragement of those who are a little ahead of me in their journey.  It gives me at least some hope that things could improve.  The professionals don’t seem to want to know.

       

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    • Posted

      Whatever you do, do NOT let it get you down. There is always and will always be hope. And if you are even a little bit better off than before, it's a success. But it sounds to me like all of the stuff you are experiencing will either improve or you will get used to it so your life can go back to being normal.

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    • Posted

      I'm glade to hear your honesty..

      The truth sets us free..

      Not make us bitter ...but free to choose....

      I'm so grateful to be be alive and growing in grace....day by day..

      Stay encourage..

      Mary

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