MVD Surgery Scheduled

Posted , 12 users are following.

I have been suffering from TN for 5 years. The medicine is just about useless at this point so I finally met with a neurosurgeon and he's agreed to do the MVD surgery. He wasn't thrilled about operating on a 24 year old but I haven't eaten in almost 4 days so it's pretty bad. I'm not sure it's ever been as bad as it is right now. Has anyone else had this surgery done?  How was your results and what was the recovery time like? I'm so nervous to have this done. He said there is an 80% chance that it'll work and he's done well over 100 of these surgeries. I'm so worried he's going to open me up and not find anything on that nerve. I'm not sure what I'll do if the surgery doesn't work. It's one of my last options. I just need some advice from fellow people with TN. Thanks for any helpful advice!

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  • Posted

    Her surgery was on the right.  Was the MRI high resolution?  That is what allowed the surgeon to show us the area; there are more 'cuts' and he could go slice by slice to the area where the nerve exits,  Again, we were able to see the impingement but not the detail of the vessels; that it was both an artery and a nerve was only seen during the surgery.   His exact criteria for recommending the MVD were the following: she had 'classic' symptoms and response to medication, his ability to see the area on MRI- not the exact details but enough to see the marked difference from left to right as the nerve exited the skull.  I would expect the recovery times to be similar given that you are both young and in otherwise good health and the area where the cuts and the basic proceedure is the same.  Please, do anything you can not to rush the recovery; avoid anything that ill increase your intracranial pressure after the surgery which includes heavy lifting- it may cause bleeding.  Remeber this usually affects people over 50 years old and even then it is not common- they will have probably been suffering for a while and not have jobs that involve heavy lifting.  Financially it might be terrifying, but explore any option of disability benefits- my daughter also works in a restaurant but they gave her front end work- hostess and work on the food truck serving through the window and having someone else load and unload the truck.  Please take care of yourself, no matter how well the surgery goes it is so important to follow the postoperative instructions to have a successful outcome- make sure the surgeon knows you job involves lifiting.   Your body needs to heal.  Contact a local service organization- they sometimes have temporary finacial help- a month's rent or a heating bill.  Use a food pantry- that's what they are there for- do not risk your health after brain surgery.   You are in my thoughts and prayers.  I am wishing you a smooth and successful surgery and a full recovery.   My daughter, surgery in the beginning of May is leaving to backpack thru Europe for 3 weeks on the 15th.  There is hope......

     

    • Posted

      My pain is on the right too. He said it was more common on the left so that had me concerned. Yes I had a high resolution MRI and as far as I know it was "normal" they didn't go into much detail other than that. For the past couple of weeks I have been in excruciating pain but here the past few days it hasn't been as bad. It makes me question surgery but I don't want to wait too long. So I'll probably go ahead and do it. My boss will help me carry my trays I'm sure. They know all about my condition and are very understanding of it all. I definitely won't rush recovery. I know enough about brain surgery that you do have to be careful afterwards because you don't want to build up pressure. I didn't even think about asking them if I could work up front. Duh! That's probably what I will do. When I was pregnant with my second daughter I would hostess a lot. Thank you for all of your information. You have been very helpful, especially since your daughter is about the same age as me. It's uncommon for people our age to have this. My surgery will be scheduled for August 22nd. I promise to keep everyone updated on this site. Most everyone has been so kind and positive on here.

  • Posted

    Today is the day and I have you in my thoughts and prayers.  I say tuned to this site because so far things have gone well for my daughter and I do want positive stories out there too!   Your, I hope will be one of them.  please keep us posted.
  • Posted

    Hey everyone! I am the original poster of this discussion. Since you all have been so kind to me and have showed legitimate concern for me, I wanted you all to know that my MVD surgery was a success! I am still in the hospital and I'm really sore. My head is hurting pretty bad. However, the electric shocks are completely gone. The soreness should get better every day. My doctor said at the top of the nerve there was a blood vessel pressing down and at the bottom of the nerve there was a blood vessel pressing against it, causing it to sandwich that nerve basically. That's what was causing the nerve to shock so bad in my face. The doctor said this absolutely needed to be done. I wanted to let everyone on here know that my surgery was a success and I genuinely appreciate every single prayer and kind words each of you has said to me!

    • Posted

      i'm so relieved and happy for you and you family. All prayers have been answered. i thank god for for your success. Love to you sweetheart.

        Gill

    • Posted

      Hi, I'm so happy to hear your great news! I've been watching to see when you would post about your op. You're bound to be sore because it's early days, but as you say the main pain you've been suffering from has gone away. I love to read success stories! Take it easy and continue to heal.

      Huge hugs,

      Chris aka wavedancer

    • Posted

      Hi hsisk - I am so happy and thrilled for you.  The worst part is now over.  Please allow yourself the time needed to heal and be good to yourself.
  • Posted

    Congratulations! And praises to God for success! 
  • Posted

    CONGRATULATIONS;  I hope you are doing fine and every day passes, you will get better than ever.  I am really happy for you. Take care.
  • Posted

    Hi..I was diagnosed with TN at age 20.. and medications also stopped working to manage pain..and 8 years later, i had the mvd surgery by Dr. Jonathan White from UT Southwestern Medical Center..Plus he was extremely excited to perform surgery for me.. please do not worry that they can't find any cause for pain in tests.Find an exceptional surgeon ..trust that all will go well. I had m.r.I. and also a lumbar puncture to check for m.s....all were clear.. during the surgery he found one of my blood vessels had grown too tall and had collapsed on the nerve...resulting in that constant, shocking, pain. .. the second I woke up from surgery, i no longer had any shocks from  trigeminal neuralgia..surgery was at age 28, and i am now 42...please make sure you have enough of your essential amino acids, b vitamins complex, magnesium, and zinc,  vitamin d. All your micro nutrients.. I am not a doctor, but the nutritional health is extremely important for nerves to function normal... not being able to eat for me essentially made everything way worse... and nobody was testing my nutrients panel that i was aware of... you WILL recover!!! 

    • Posted

      Hi Raqis - I just read your post and felt you were talking about me up to the point of post surgery.  After surgery, I no longer had the electrical shocks but the high pain levels I had never left.  Actually, two years ago my pain levels have been increasing.  I am in need of taking pain meds daily in order to have some quality of life.  You mentioned micro nutrients.  Sorry for my ignorance, but this is all new to me.  I am now in my 11th year with TN and now actually thinking of another surgery.  My life has changed forever.  My eating is terrible as I can only eat very soft foods and only one side of my mouth because of numbness.   If I have high levels of pain I cannot eat - the pain is too much. I would like to know more about the micro nutrients you mentioned.  What is your daily dosage? Thank you for reading.
    • Posted

      Hi! I had my surgery on 8/22 and it was a success! He found 2 blood vessels, one on top and one on bottom, of a nerve rubbing the nerve causing the shocking pain. He put the teflan around it and all is well. I woke up and was nauseous and my head hurt but my pain is 100% gone. I'll be coming off my medication shortly and I'm nervous about that but I'm excited too. Thank you for telling me about micro nutrients. I had no idea about that but I'll start taking vitamins asap. I don't ever want to do this surgery again so I'm hoping it'll be a success throughout my life. 

    • Posted

      Hello Again, Sweetheart, Still thanking God for prayers answered and hoping that you can soon get back to caring for your family.,Love to you, GILL
    • Posted

      Thank you so much Gill! I'm thanking God every single day. I feel better every day smile

    • Posted

      So happy for you. You're so young and really didn't deserve this illness. Go and live your life, but it would be lovely if you could stay in touch to encourage others.who are suffering . God Bless. Gill  xx

    • Posted

      I feel like I got my life back and I am thrilled. Especially since I am so young! I will continue to get emails from this website and definitely try to encourage others with this awful disease. I don't want to stop this forum just because my symptoms have subsided for now!

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