I wanted to add my positive MVD experience to this site.
I just had my last check up with my neurosurgeon today and am cleared to go back to work.
I was officially diagnosed in August 2011 at age 48. I had several trials of anti-seizure medications. Some worked for a while but caused side effects such as low sodium in my blood or higher liver enzymes so my neurologist took me off them. In April 2012 until my MVD on September 4, I had an average of 40 zaps per day. TN was really interfering at work and my overall quality of life. I found myself backing away from family outings and other invitations. The anti-seizure meds made me very foggy and tired. I couldn’t see living the rest of my life with increased doses of medications that would eventually have me not be able to work and support myself.
In a way I’m very glad that the meds didn’t work because it made me research MVD. I was a good candidate as I had several failed medication trials and my diagnosis was within the 7 year window. I still wonder if I didn’t have the side effects what dosage would I be on today, continuing to isolate at home and still be trying to manage life & work in a fog?
I joined the MVD group and read both good and bad results. Some stories really frightened me. It was a scary decision to make, but living close to Boston I knew I had the best medical options available to me. I also met a fellow member (RickRI) who was having his MVD by the same doctor. Rick was a great support to me as he had his surgery in July 2012. He was able to answer all my questions. I think his positive attitude and determination to ‘fix’ the problem blended well with my view of MVD and what I wanted in my outcome. So this board now has 2 positive outcomes from Dr Eskandar at Mass General Hospital.
I have been pain free since Sept 4, 2012! I did have a very minor leak which was handled with antibiotics and cleared up within a few days of starting the meds. I am off all medications and no longer live under the fog! Although scary, it is one of the best decision I’ve made!
MVD is a viable option that works! With any surgery there are aches and discomfort but these aches were not TN pain. I never experienced anything as severe as TN pain during my recovery period.
Geat to hear you are doing well Mary! Quick questions...did they remove your vein or did you have a pad of some type placed? Also did you have a titanium plate placed? Thanks.
They placed a pad in between the vein and nerve. He used some type of coagulation product that is found in our blood to make sure the sponge doesn't move once its in there. I have some titanium parts to close up the skull. I asked about if I need any future MRI or Ct scans and he said the titanium won't be an issue.
So glad to hear that everything is going well and there's another success story by Dr. E. I wish he were further South! I'm in Georgia. I think you and Rick were both Type 1 TN? I'm type 2 caused by a TMJ surgery and have 24/7 pain. I'm not sure if he will treat Type 2. I'm waiting for Cathy to get back from vacation so I can see if Dr. Jeff Brown will accept me. He will treat some Type 2's. If Dr. E treats Type 2's , I would definitely fly up there. I'm trying to see if Dr. Fukushima treats type 2's but cannot get an answer yet.
I am so glad you are pain free and off those zombie meds. They don't do me much good anyway. Just make me too fatigued to do anything. Take care and thanks for the update.
You gave me Dr. E's link in an email and I cannot locate it. I printed it off but my ink must have been low on color ink because I cannot read the entire link. If you have his link and telephone number, can you repost it for me. My personal email is ■■■■■■■■■■■■■■■■■■■■■■■. or here with me at Tinkerbell. Thanks!!
Does anyone know if Dr. Fukushima or anyone at Duke treats Type 2 TN?
Thanks for sharing this! I have my MVD Thursday and hope I can share the same good news. This is the last I will be on the site until after the surgery. I keep coming across the bad stories and I can't read them right now.
Always great to hear good news!!! My MVD (a year ago last Sept. failed) & I've had so many complications from it & am in so much more pain than before I had it done...I pray that one day I will be able to write an encouraging, successful report like yours! I still haven't given up hope! Best wishes as you continue to heal, Mary! :)
Mandie, Just have faith that yours will be fine. I had a bad outcome during TMJ prosthesis surgery that caused TN pain, so you just never know, but both you, Lori and I need to have faith that your procedure will go wonderful, Lori and I will find an answer to our problems. I have not had MVD yet. I hope that if and when I do, it will be successful, too. Bad outcomes always scare me, too, especially since my case is "non textbook" and docs are scared to touch me themselves! But I still hope there's some courageous soul out there who has confidence in their skills and will take my case and attempt to get me out of 24/7 pain. It's difficult for me but to just write something positive helps. I know you have to think positive thoughts going into surgery and I don't blame you for not reading anymore. Lori will they not try again or maybe you can try with a different doctor?
It's difficult to have the energy to even research when in pain, I understand that! Take care and blessings to us all.
Mandie said:
Thanks for sharing this! I have my MVD Thursday and hope I can share the same good news. This is the last I will be on the site until after the surgery. I keep coming across the bad stories and I can't read them right now.
I couldn't be any happier for you. I am glad I was able to lend some support during the process.Thanks
To those having MVD surgery and to those contemplating it, I hope our stories give you some positive energy as you travel along the road to feeling better. Take care.
Mary So nice to hear the good news, I had my MVD on October 3rd, I dont regret it either, I still have some pain in my teeth and some allergic reactions from meds etc I am dealing with, but I havent had a major jolt of any type since the surgery. So glad you are doing well!
I honestly did not feel the surgery was that bad, I wasnt ever in severe pain after it, and really thought is would be so much worse.