I am scheduled to have an MVD in August at Mass General Hospital with Dr. Emad Eskandar. Many have posted on here about their positive experiences with this doctor, and with MVD. As I prepare for MVD, I'm trying to better understand how my situation might compare to others who have had a successful MVD, based on a similar situation going into the surgery.
I am 44, a widow, diagnosed right after my husband passed away from cancer in fall of 2012. My belief is that stress triggered the onset of the TN. Other than TN, I am extremely healthy with no pre-existing medical conditions. I have not had any other procedures to try and help with the TN (gamma knife, rhiziotomy, etc). As a Mom to three small children, I can't continue to battle this monster each time it recurs.
I am on trileptal, gabapentin and nortryptiline, and have been for the most part able to manage the pain with these medicines, but am seeking a solution to the TN that will free me from this awful pain that seems to recur each time with more force, requiring new medicines or higher doses of the medicines I"m already on.
If you have gone through an MVD, and like me you were managing pain fairly well with medicines and/or had no other pre-existing medical conditions, I'd love to hear your perspective.
My gut says to move forward with the surgery and be done with it. I don't see a big downside, as being and only parent with TN is awfully hard. The medicines cause side effects that are somewhat manageable, but I'm concerned that there are long term effects that could be problematic in the long run.
I feel your frustration with this disease and the medications. I am also so sorry for your loss and the situation you are in with young children. I was 44 when I was diagnosed with TN in 2013. I knew from the start (as soon as I found out all I could about the disease) that I would be having MVD surgery. I saw no other options that worked for me. I suffered form symptoms for 9 months and in that time saw my main doctor, two neurologists, one pain doctor, and three neurosurgeons. I was on Trileptal first, which did a great job most of the time, but constantly had to up my dose to the point where I was having hallucinogen like "episodes". I was switched to Tegretol XR (extended release) to avoid the drug dumps that were causing those episodes but I quickly ended up on a max dose of that as well.
At the 7 months mark, I booked my surgery after visiting with three neurosurgeons. I decided to have Dr. Ken Casey do my surgery (he co-authored the Striking Back book) and had to travel out of state for that. It has been 20 months since my surgery and I truly have my life back with zero pain and zero meds. I took a leap of faith early on and am so glad that I was brave enough to make that decision. Like you, I could not live my life raising kids with the disease or the meds. I know that I am not "cured" as there is no sure thing with TN but the 75-80% chance of pain relief that comes with MVD surgery was good enough for me. I would have done the surgery even if I had a 50/50 chance of attaining pain relief. I decided before the surgery that no mater what the outcome, I would not regret it. I realized I would regret it more if I didn't take that chance.
I hope that you will find the support you need in this forum, I sure did. I will pray for you as you make this difficult decision. I think that your mind and heart are in the right place.
I had an MVD 2 years ago for type 2 (low success rate on type2) because there was a clear compression on an MRI. It helped for 8 weeks before returning and they said it could have just been the shock of the surgery that provided the temporary relief.
I still would have done it, knowing it would only work for 8 weeks. I turned my life around in those 8 weeks.
I've had TN 2 for 4+ years now, I do feel like my body has adjusted slightly to a new base line for pain, the constant pain is generally 70% what it used to be, with occasional flare ups that make it equally as bad as it ever was, but it seems like overall I'm able to live with it, or at least I don't wish I was dead anymore.
Oh, I did forget to mention that I had Type 1 TN. The success rate for MVD is far greater with Type 1 than Type 2. I'm glad that you had that 8 weeks off, Shindig, and that you have found your pain to be a little more manageable.
Thank you so much for sharing your story. It definitely gives me hope. I believe my first diagnosis was for TN1, although there is some indication this year it has migrated a bit to TN2. I'm hoping it's the TN1 and I can have a good result from the MVD.
mybell said:
Hi Ellen,
I feel your frustration with this disease and the medications. I am also so sorry for your loss and the situation you are in with young children. I was 44 when I was diagnosed with TN in 2013. I knew from the start (as soon as I found out all I could about the disease) that I would be having MVD surgery. I saw no other options that worked for me. I suffered form symptoms for 9 months and in that time saw my main doctor, two neurologists, one pain doctor, and three neurosurgeons. I was on Trileptal first, which did a great job most of the time, but constantly had to up my dose to the point where I was having hallucinogen like "episodes". I was switched to Tegretol XR (extended release) to avoid the drug dumps that were causing those episodes but I quickly ended up on a max dose of that as well.
At the 7 months mark, I booked my surgery after visiting with three neurosurgeons. I decided to have Dr. Ken Casey do my surgery (he co-authored the Striking Back book) and had to travel out of state for that. It has been 20 months since my surgery and I truly have my life back with zero pain and zero meds. I took a leap of faith early on and am so glad that I was brave enough to make that decision. Like you, I could not live my life raising kids with the disease or the meds. I know that I am not "cured" as there is no sure thing with TN but the 75-80% chance of pain relief that comes with MVD surgery was good enough for me. I would have done the surgery even if I had a 50/50 chance of attaining pain relief. I decided before the surgery that no mater what the outcome, I would not regret it. I realized I would regret it more if I didn't take that chance.
I hope that you will find the support you need in this forum, I sure did. I will pray for you as you make this difficult decision. I think that your mind and heart are in the right place.
You probably have seen my story on this forum. Yesterday was my 3 year anniversary since I had MVD surgery at MGH performed by Dr. Eskandar. No TN pain since.
In my estimation you are giving yourself the best chance of eliminating the issue not just masking it with medicine. I believe the longer you wait the more damage is done to the nerve and the odds at long term elimination are diminished.
MVD performed by an experienced surgeon at an experienced facility increases the odds of success. You will have both in abundance. WORLD CLASS.
"My gut says to move forward with the surgery and be done with it."
I could not agree more.
I am here if I can help you in any way as you get ready ( and after) your surgery.