I’ve spent a lot of time this week reading stories of people with TN. I’ve also read quite a few stories about how the MVD procedure helped most people. What I’m super curious about is why some wait so long (years) to have the procedure or never opt for surgical intervention of sny kind. I’m only 6 days into my flare up after being system free for 9 years and I want the procedure tomorrow if I could. I hate the meds and they only dull the pain to a tolerable level. I hate living not being able to plan anything for fear of a lightning trike in my face. I can’t be active or move too much or go out in the cold.
I’m just super curious why some don’t choose surgical intervention. I hope I don’t come across wrong with my question I’m just really wondering. Is it the cost (for those in the U.S.). My biggest worry is choosing to have and MVD but then having to wait years due to the awaiting lists on Canada.
I live in Canada and did not encounter a long waiting list at all. I am fortunate in that I live near Winnipeg, Manitoba and had Dr Anthony Kaufmann do my surgery. I also choose to have surgery sooner rather than later as the meds, while moderately effective, do not agree with me. I have never heard of long waiting lists here at all. If you need the surgery you will get it. I did wait a few months as the meds were moderately effective. If the meds do not work for you the wait is considerably shorter. All the best. Let me know how it goes.
Hi Joni, welcome to LwTN.
I’m in Edmonton…I was first diagnosed in 2002 and had never heard of MVD. After 9 months, I was very fortunate to experience an 8 yr remission on my right side and a 10 yr remission on my left side. My right side is fairly quiet, but my left is out of control.
No compressions ever showed on any of my mris but I was fortunate to have a chance at MVD in 2013 also with Dr. Kaufmann in Winnipeg. ( I flew there) 3 compressions were found and successfully decompressed, I experienced 4-5 months pain free (on 1 med instead of 3) before the pain increased again .
I have no regrets choosing MVD , but I must admit the decision was a difficult one. Despite being in horrid pain, having to leave my job, stop driving due to the meds and pretty much be housebound I still couldn’t reconcile the fact that compression on the nerve can be found in many people who do not have TN. Studies upon autopsy showed this…compression is still listed as a suspected cause…in the end I felt like it was my best option because IF there were compressions this would be irritating my nerve and naturally damaging and it was the ONLY procedure that did not cause further damage to the nerve if done well. This was very important to me.
For some people cost is a factor, as in the US, others have other medical conditions or are of an older age and cannot have the surgery or tolerate the anaesthesia .
Many show no signs of compression , and many neurosurgeons will not perform MVD without proof .
If I had chosen to have the MVD here in Edmonton, I would have had it within 2-6 weeks, but I chose Dr. K in Winnipeg and had to wait 5 months.
It’s a personal choice but I must say it’s very important to research as much as you can and make an informed decision and have hopeful yet realistic expectations! I knew going into my MVD that there were no guarantees but I was extremely hopeful and knew for me, this was the right decision.
Would I have had better results my first year of diagnosis? I’ll never know…can’t look back only forward.
MVD helps many people and has the best success rates it’s worth looking into!
(( hugs )) Mimi
Thanks so much for the replies. I wasn’t sure about the waiting lists so glad to hear if I do opt for the MVD I won’t have you wait years. I just wasn’t sure if there was a serious danger with MVD that wasn’t finding as to why people are resisting it although I can see financial reasons in the U.S being a problem. Ive researched enough to know if I did proceed with surgery it would be Dr. kaufmann.
Yes! MVD. Gave me my life back!
Me too. MVD is the best chance @ fixing the issue. Experienced surgeon and facility increase the odds. Good luck!
I agree . . an MVD is the way to go. Absolutely do your research to find the best surgeon and then take the leap of faith. I decided 2 months into my pain that I would have MVD surgery and then took 8 months to find the right surgeon. In my case that was Dr. Casey in Michigan. My surgery was just over a year ago and after 10 months of horrible pain and meds, I am med free and pain free.
Once I ended up with the right neurologist, which then led to my Neuro surgeon, it was about two months. I have both types, on both sides. The left side was recently done, with complete success. I am going to have the right side done in February.
The only delay I had was a neurologist that told
Me the TN would go away on its own, yeah, right!