My doctor told me that surgery would be our last resort for treatment....only if I have tried every medication out there would he consider sending me for surgery. With this said I have been in pain for 2 and a half years with no relief in sight....I have gotten short spells of relief with a few different meds but it only lasts for a short time. I am now at 3200mgs of gabapentin,600tegretol,1800mgs ibprofren,and no relief.....next one to try is Lyrica...and that the 5th medication i've tried. At this point I wish he would just send for the MVD. How long have doctors made you wait for your MVD surgery?
shoot the neurosurgeon i went to see was ready right then it seemed to do mine cause they found compressions but i have type 2 pain so im leery
I just saw my first neurosurgeon 2 weeks ago and he wants me to spend some time on the medicine before having the MVD. He confirmed my diagnosis with Type 1 TN and said I was a good candidate for the MVD. He also saw something suspicious on my regular MRI/MRA but said he'd need a thing slice one to confirm a compression for sure. I know that I'm super lucky that I was confirmed with TN 4 days after my first symptoms and started on meds right away. It's only been 2 months since my diagnosis so I can understand my surgeons desire to just wait a bit but on the other hand, I know that this is the solution for me and I can't see the point of waiting and just staying on these meds that I hate. I upped my dose of Trileptal for the 3rd time already and I have terrible fatigue. I am having to take naps now most days and I have never taken naps in my life (aside from a few when I had infants at home). I had to give up the half marathon I began training for because I just don't have the energy. To me, I think this is enough to warrant the surgery that will cure me as I'm still young and can't imagine living the next 50 years like this and worse.
I'd say get another opinion. I'm consulting with another neurosurgeon here (whom my anesthesiologist referred me to) in April.
Good Luck. It is almost a crap shoot. I lasted 10 years, then had MVD. Side effects are awful for me and nerve damage. But not everyone has that. Think long and hard about it and ask plenty of questions. The surgeons don't tell you everything.
I had my first shock in Spring of 2012 and my MVD in December. I skipped my GP and a neurologist and went straight to the best neurosurgeon I could find. He had me try Tegretol and then Neurontin. I had a bad reaction to the Tegretol and became a zombie on the Neurontin but the shocks were gone. I am 67 and did not want to wait for damage to the nerve or for my health to deteriorate. My neurosurgeon gave me a lot of information and did not pressure me at all. The recovery was a little slower than I had anticipated but then I am getting older! I have no TN pain and would go back for another MVD in a heartbeat. For me it was the right decision. Good luck to you.
Wow, my neurosurgeon just told me that when I come in there and not smiling anymore, then we do the surgery. So IDK what to tell you. Maybe go see another neuro and see what they say. Good luck to you!
Barberchick,
I would tell your doctor it’s time you started looking at other options and request referrals to some neurosurgeons for consults. Explain that you’d like to make an informed decision and not one based on your desperation for pain control.
If your doctor refuses then get another doctor to do so for you!! Or if you’re able, contact neurosurgeons on your own. It’s your quality of life, not the doctors.
(((Hugs))) Mimi xx
I had Type1 TN pain that came and went and got progressively worse over the course of 4 years. I got to a point of no remissions and had shocking pain everytime I ate/talked. It was misery. My neurosurgeon wanted me to stay on drugs, try new drugs, up the drugs. The drugs weren't working and I could not tolerate the side effects! I am also only 44 and could not imagine the rest of my life with severe TN pain. I did my own research and sought out neorosurgeon consults desite what my neurologist recommended. Luckily, my insurance is a PPO and I do have some freedom in scheduling appointments. I also have a General Practitioner who is very interested in diagnosing pain and is quick to refer to specialists when needed. She was much more useful than my neurologist during my TN ordeal. I had MVD this past June and have not had shocking pain since then. The one thing I learned over the last 4 years is that you must be your own advocate and push for getting all options available. I had two compressions on my nerve and all the medicine in the world would not have cured that.
Part of the official criteria for MVD is not only you've been on many meds for years ---
OR/ It ALSO could be that your quality of life is too badly affected from side effects of anti-seizure meds.
Got TN and diagnosis in Oct. 2010 -- from then until 10 months later - I had trialed 3 meds - Had MVD at the 12 month mark in Oct. 2011!.
I didn't ask my neurosurgeon -- I just asked him to forward my paperwork -- he said I was being really pro-active and wished me luck ---I am lucky to have great insurance -
Research says that within the 1st THREE years is probably THE best window to get MVD if you are going to do it. I think once the nerve gets beaten to death for more than that, the success rate goes down.
I was so drugged up - I lowered my meds, got on lidocaine patches and studied everything I could find about MVD's on here and on the TNA website and in the book "Striking Back" by Dr. Ken Casey
My neurologist said there is nobody in my state he would get an MVD from -- so I emailed dr. Casey and asked where look for a surgeon --- he said he would do it! He doesn't need the money, and he could probably do them in his sleep.
Dr. Casey in Michigan. He learned under the inventor of MVD and has traveled all over the world lecturing about TN and MVD. So that is where I flew to get MVD.
I had NO INSURANCE for a decade - so I know how it feels not to get the care you need. I wish everybody here could get the doctor they want, when they want!
One email changed my life.
Keep us posted!
Like somebody said, you have to advocate for yourself -- you cannot be passive about TN treatment --- fire your doc and do what you can - 2 years and 4 meds IS long enough!
Are ANY of these side effects OR the PAIN affecting your work, relationships, driving, quality of life etc...
Searching for the right word, problems with speech, balance, or coordination, blurred vision, mental slowness, trouble concentrating, tremors or shaking, dizziness, drowsiness; = MVD Can Be a Viable Treatment Option
I guess for me I probably waited to long to have the MVD. Maybe that is why I have had so many side effects since having it 2 1/2 yr. ago. I waited about 10 yrs. Do some more research on that timeline and go with your gut. I did suffer terribly for so many years that I would have cut my head off. But maybe I did wait to long. I had a doctor friend that kept saying don't do it. It's the brain. So I waited. But I wish you lots of luck. Find a good surgeon. I also went to the Dr. that invented the MVD. Only he had retired. A doctor in his office did it. Good Luck.
I took meds for about 6 years before they quit working completely and in a hurry. I was considering an MVD last year but put it off. This year I had no choice but to have an emergency MVD because the pain intensified and wouldn't let up no matter how much medication I took. The nerve had already sustained severe damage, but I had a pain-free outcome.
If you are in that much pain, and your doctor won't consider the MVD, maybe you need to look at getting another surgeon. My surgeon was willing to do it last year even though I hadn't reached the level of pain that I had this year. One other thing to consider is that the older you get the higher risk patient you become for MVD. Best wishes in finding relief. We've all been there.
SANTAFERED- don't beat yourself up about this -- they did not know this 10 years ago about MVD....I'm hoping a better alternative comes up within the NEXT 10 years --- we just don't have enough research out there or telethons, etc....
santafered said:
I guess for me I probably waited to long to have the MVD. Maybe that is why I have had so many side effects since having it 2 1/2 yr. ago. I waited about 10 yrs. Do some more research on that timeline and go with your gut. I did suffer terribly for so many years that I would have cut my head off. But maybe I did wait to long. I had a doctor friend that kept saying don't do it. It's the brain. So I waited. But I wish you lots of luck. Find a good surgeon. I also went to the Dr. that invented the MVD. Only he had retired. A doctor in his office did it. Good Luck.