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Awaiting mvd .

Posted , 8 users are following.

Peteh
Peteh

hello all. I have had an mri with contrast in feb and I’m now awaiting a date for a micro vascular decompression. I’m a gardener by trade and I’m wondering if anyone has had an mvd and how was their recovery. How many weeks can I  realistically expect to be out of action. My work can be strenuous at times. I have read of people being very tired after surgery and lasting for many months. I’m getting by with tegretol 300/400 mg per day but I’m so lethargic and puddled and not that dose just takes the edge off the pain so I can eat and speak to customers. This is my third year of ten . And hopefully the last. Peteh.

0 likes, 14 replies

14 Replies

  • marlene36342
    marlene36342 Peteh

    Posted

    Hi Peteh - I am in my 12th year with TN.  In 2009 I had MVD surgery.  After the surgery I was off work for 6 months.  I went back to work but had to leave again after 3 months.  I remember being very tired and did sleep much.  Also my balance was off for quite some time.  When I walked I tended to always drift off walking to the right - my TN side.  In time, this did get better.  Every person who has had this surgery all come out of it with different results.  I am a member of several TN support groups and have read many posts and comments that people are now living pain-free lives and they are fine.  Unfortunately for me my surgery was unsuccessful.  Wishing you the best and a fast recovery.
    • Peteh
      Peteh marlene36342

      Posted

      Thanks Marlene , I’m beginning to understand that the responses to this surgery are quite varied. This is the first time I’ve investigated other people’s varied treatments and responses. The drugs used their effectiveness, timing, side effects, types of surgery etc make the future all a bit confusing and daunting. Even at the consultation with the neuro surgeon I felt as if I was choosing the type of surgery rather than being told point blank, “ you need an MVD mr h “ .its as if in this age of free choice (and fear of litigation ? ) that the policy is to put the onus on the patient. When asked the consultant did say his preferred option would be the mvd in my case.

      were you nervous when coming round from the anaesthetic. I’m sorry it hasn’t been successful and you find some relief, it’s a miserable condition . On a lighter note....... when I tell people I’m going for brain surgery (it’s easier than the whole ten story) they look at me or look away as if I’ve just walked off the set of “ the Adams family “. I might start wearing a big white bandage on my head and dragging my leg. Many thanks and best wishes. Peter.

    • marlene36342
      marlene36342 Peteh

      Posted

      Hi Peteh - my initial appointment with the neurosurgeon was by phone.  The pain specialist referred me to two surgeons and both refused to even give me an appointment.  I ended up having to travel 1200 miles to another province to have this surgery.  My initial appointment was by phone and he did recommend MVD.  Of course, I didn't have a clue what he was talking about and he told me to search the surgery on the internet for information.  I was floored and didn't have a clue of any expectations post-surgery.  You mentioned litigation.  Before surgery, I had to sign a waiver that if anything did happen to me even at the surgeon's mistake, that I could not hold the hospital or him liable.  Another surprise!!  I remember too well waking up in recovery.  During the surgery, I had a nerve stretch done (don't know why) and I had the most unimaginable pain I ever experienced for 3 days.  We all have different experiences with this surgery and I jump for joy when I read about success stories.  I understand what you are saying about telling others about having to have brain surgery.  I can laugh now thinking of all the different expressions I saw on people's faces.  My very best to you with great hopes for a pain-free life.

  • brock1998
    brock1998 Peteh

    Posted

    Peteh, I had MVD surgery May of 2016. I was out of work for two 1/2 months and went back with no restrictions. I was back in the gym after three months with no restrictions. Prior to my surgery I was up to 1200-1400mg of tegertol and I was a walking zombie that stayed tired. The side effects I had right after surgery was double vision and earring loss on the side they cut me (left side). I had my surgery on a Thursday and before I was discharged on Sat both my vision and earring was back and no others problems after that. Keep us posted on how your surgery goes and I will keep you in my prayer. 
    • Peteh
      Peteh brock1998

      Posted

      thanks brock That’s an awful lot of tegretol. I take extra at the weekend when I know I don’t have to drive. It’s serious stuff. I hope I can mirror your post op story. I’m 63 and quite fit from work give or take a few obvious aging joints and I’m hoping this will go in my favour. 6 weeks recovery time would be wonderful. This forum is so helpful and supportive. I think having something wrong with your brain sort of embarres people. They don’t know what to say , I had depression for many years and people would run a mile wishing you had a broken leg or a good old hernia. Many thanks . Peteh
    • brock1998
      brock1998 Peteh

      Posted

      Peteh, here’s a store I feel lead to share because of your age. I had TN since 2011, it could’ve been prior to that but I was not aware. In (Oct 2015) I went up to Duke Medical Hospital in Durham, NC that’s when I was diagnosed, prior to that no neurologist had diagnosed me with TN they just simply called it a damaged nerve. So just like you and everyone on this support forum I  suppose was worried about the unknown. I was thinking is this what life is going to be like for the rest of my life I was just 38 years old married with 3 kids. Keep Oct 2015 in your mind, in March 2016 TN was getting worse and tegretol side effects were getting bad due to the amount of milligrams I was on. It was shutting me down to the point of wearing a catheter for almost two weeks, it was taking a toll on my body. One morning I felt so bad that I told my wife that I could not go to work, after she left with the kids I poured out to GOD asking WHY ME? I want to watch my kids grow up, I want to be the one to protect my kids and wife from a more and more  wicked World . Well I did not get my answer until (Oct 2017) when at a work meeting in Charlotte, NC I heard of a story of a lady that worked out of Tennessee who’s  mother had been diagnosed with TN and all the neurologist had told her there was noting more they could do. (She happens to be at this same meeting) I find this lady and shared my story, gave her my card and told her to make sure her mom and dad had it so if she ever needed to talk they could call me because I understood first hand what she was going through. I talked to her husband on Dec 2017 and I’m happy to say that she had MVD surgery by my same surgeon and at 67 years old she is now pain free. I believe with all my heart that I had to go through my experience of TN for GOD to reach this lady a few years later. So GOD did answer my question when I asked in Oct 2015 he just did it two years later on Oct 2017. You will do fine and I will be praying for you! Keep us posted after surgery!   🙏🏼

  • Nascar1
    Nascar1 Peteh

    Posted

    Have you tried gamma knife? What about 400 mg 3-4 times a day of magnesium glycinate for pain? Fish oil turmeric can help.
    • Peteh
      Peteh Nascar1

      Posted

      Thanks nascar, gamma knife was discussed but when getting the mri results there is some small vessel against the nerve. I mentioned before that the choice of treatments is nerve racking as you feel uncertainty.  Do you go for less invasive treatments or go the whole hog thinking it will be the definitive cure. I will investigate magnesium . Have intended to try fish oil and turmeric for some time as I use naproxen for general joint pain. One of the joys of being a gardener. Many thanks.peteh
  • TomsMum
    TomsMum Peteh

    Posted

    Hi Peteh.  My husband had MVD surgery June 2015, if I remember correctly he was off work for about 3 months & it take a bit of getting over the op, he temporarily lost some hearing but that seems fine now.  He's been lucky the TN seems to have gone, he can still get some really bad migraines & deep down we both dread the TN returning but the past 3 years have been great.  Good luck with your op, I sincerely hope things go as well for you.....

    • Peteh
      Peteh TomsMum

      Posted

      Thanks tomsmum as much as this is a very lonely illness I affects family life in its debilitating manner. Even when I was delighted to be in remission it was still like a time bomb waiting to go off. Thanks , peteh
  • chris78446
    chris78446 Peteh

    Posted

    i had the op micro vascular decompression all went well home after 6 hrs  a couple of days rest then ok stopped taking tegretol with in a week but the side of my face is still numb 2 months ago i had op

    good luck 

    • Peteh
      Peteh chris78446

      Posted

      thanks chris78446, I would quite happily swop some numbness for this pain. The crazy thing about this pain is it’s intermittent nature. You can be in hell one minute and the next moment people would think there was nothing wrong with you. Thankyou 

      .

  • saaz79347
    saaz79347 Peteh

    Posted

    Click on my name to view my experience with TN and MVD. Should answer most of your questions
  • Guest
    Guest Peteh

    Posted

    Hello Peteh,

     Sorry to hear you are suffering with this awful condition. I have posted my story a number of times already on this forum, however here is a very brief synopsis.

    In 1991 I started to experience excruciating bouts of pain in my jaw. In 1993 this was diagnosed as TN. I had MVD surgery late that year and after 2 weeks in hospital I returned to normal life and had no further pain at all for around 20 years. A brilliant result. Then the TN returned and the bouts of pain became more frequent. I could not tolerate tegretol (got sick). I went back to the same surgeon and had surgery again. However, this time he had to do a rhizotomy of the nerve (cut it), the downside of this would be numbness of the face. Unfortunately I was one of a minority of patients who ended up with a dreadful condition called anaesthesia dolorosa (AD). So the TN pain is gone but although my face is numb I feel pain all the time especially around the mouth and chin, also my tongue. There is no known medical cure for AD, all I can do is take nerve pain killers (and prayer) which reduce the pain but don't kill it altogether. I would not presume to tell anyone what to do as I know what the TN pain is like, however, if I was having surgery again I would ensure that it was only mvd and not a cutting of the nerve.

    I hope all goes well for you.

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