As I read more and more on this site, it seems like mostly people don't have the MVD done until they have have TN for years.
I....I don't think I have the stamina to wait that long! I was diagnosed formally 2 weeks ago, have been suffering about 5 months in total. The pain is so intense, I honestly don't know how long I can keep going like this.
I went to the ER on Friday and they gave me hydrocodone, which does almost nothing except I suppose make me not care about the pain so much. The Tegretol works pretty well, but only when I take two and three times as much as they prescribed, so I'm hoping they will raise my dose soon.
So, that's my question I suppose....do they ever to MVD's earlier than 2 years? I know I am hampered by public insurance (I haven't even gotten to see a neurologist yet because of the whole referal red tape nonesense. My primary care doctor is nice and helpful but I can kind of tell he is relying on Google for a lot of his information. The doctors at the ER actually knew more about TN than he does...
I have an appt tomorrow, at which point I will ask (again) for the referal. I'm hoping the neurologist will do an MRI and that it will show something significant enough for the surgery to make sense.
If I'm going to do this, I'd like to do it soon, while I'm just working 60 hours a month, and not later next year when I'm applying for the full-time version of my job. Nothing shows dedication to your job quite like getting hired and then promptly saying "oh hey, gotta go have brain surgery, see you in a month or two!"
hi there, i had mvd on one side a long time after i got it but only because it took 6 years to diagnose. i am now having the other side done 1 1/2 years after. my surgeon said the sooner the better after diagnoses and the meds arnt working helps with a better outcome. keep pushing if youve decided that you want to do it. make sure your surgeon knows what hes doing and has done many mvds. mine had done over 400 when he did mine. you dont wnt just anyone going into your head. good luck, God bless, jacqueline
I was formally diagnosed in August 2011 and met with the neurosurgeon August 2012. I had my MVD on Sept 4 2012. So it was a bit over one year. I believe insurance companies want at least 3 failed trials of medications before they will approve MVD.
Can your primary care physican order the MRI or does he prefer a neurologist do it? Also contact your insurance company to help you get into a neurolgist sooner if you need to. If you have read some other posts on this site not all people have shown a compression when they had an MRI but when they had the MVD the compression is found.
You are too young to have to deal with it the rest of your life. Good luck!
I was diagnosed mid-September this year and am booked in for an MVD on 19th December. Decided to be proactive rather than put up with either the pain or the zombie-ness! Good luck in being able to do the same!
My situation was very similar to Mary's. ( in fact we had the same surgeon). Diagnosed April 2011, Gabapentin, Carbamazepine, and baclofen prescribed. Pain diminshed at first, increased in late 2011. Carbamazepine made me very slooooooow mentally. Nasty. Researched MVD throughout 2011 and early 2012. MRI's in Feb 2012 show nerve compression. Met with my first choice surgeon ( Dr. Emad Eskandar, The Massachusetts General Hospital) May 8, 2012. MVD performed July 17, 2012 ( my second birthday) Succesfull. No pain or meds since. ( my TN story is on the site)
If you are a candidate, I would advise you get it done sooner than later. Everyone is different but MVD done as early as possible seems to yield better results and why suffer longer than necessary. That said, medicinal treatment works for many and is the preferred choice to start treatment. If it doesn't, MVD surgery is a good alternative.
Sam: Best of luck on the 19th. I wish I had mine done as soon as you.
It took a little over a 1 year after diagnosis that I had the MVD. It seems like it took that long for me to get thoroughly educated about TN and then to realize that MVD was the most definitive management for me. Then I researched some more to find the surgeon and facility for me to have it done. I am a retired open heart surgery nurse and it is important for me to assess all options before making choices; especially about my health and my body. DO NOT ENDURE PAIN WHEN YOU CAN DO SOMETHING ABOUT IT---my message to you.
The Tegretol hasn't made me a zombie but maybe it's because I'm used to that class of drugs. I took Topamax for a long time to prevent migraines and THAT made me the dumbest zombie on the block! (They say Topamax makes you lose weight because you forget where the fridge is...!)
I am a very proactive person. I've done a ton of research in the last two weeks while I waited for the Tegretol to kick in and I just feel like it makes more sense to go for a possible cure instead of trying fifteen drug treatments that may or may not work.
Samantha John said:
Hi Roselyn
I was diagnosed mid-September this year and am booked in for an MVD on 19th December. Decided to be proactive rather than put up with either the pain or the zombie-ness! Good luck in being able to do the same!
That is worth knowing about the insurance and the three failed medication trials. A previous doctor said they wouldn't do an MRI until I was "diagnosed" by using Tegretol, but with him it's kind of hard to tell if he was being truthful or just rude. His exact words were "we don't do MRIs for no reason". He was not a nice guy and I'm so glad he's not my main doctor!
I have an appointment today so I'll be asking him about all this. Thank you!!!
mary said:
Hi Roselyn,
I was formally diagnosed in August 2011 and met with the neurosurgeon August 2012. I had my MVD on Sept 4 2012. So it was a bit over one year. I believe insurance companies want at least 3 failed trials of medications before they will approve MVD.
Can your primary care physican order the MRI or does he prefer a neurologist do it? Also contact your insurance company to help you get into a neurolgist sooner if you need to. If you have read some other posts on this site not all people have shown a compression when they had an MRI but when they had the MVD the compression is found.
You are too young to have to deal with it the rest of your life. Good luck!
My TN pain started 4 years ago but I was not diagnosed until sometime this summer. The Dr told me that you need to try at least 3 meds before being a candidate for a MVD. I had already tried 2 on his list (this was before my official TN diagnosis but he counted them) so the last one left to try was Tegretol. I tried it and it helped very little, confirming the diagnosis of TN. By Aug or Sept I had an appointment with the neurosurgeon. I was scheduled for my MVD to be done Nov 5. So it basically took me about 5-6 months to go from diagnosis to surgery. But again, I had had this pain for 4 years w/o the proper diagnosis.
I am 3 weeks post-op and it was the best decision I have ever made. My TN pain is almost completely non-existant. BTW: My MRI, MRA and MRV showed no compression, yet when the surgeon went in I had 3 nerves, including the trigeminal, being compressed by 2 arteries.
If I had been diagnosed sooner, I would have also pushed for the surgery ASAP like you want to. I don't know if they would have done it, but I understand your desperation.
I was diagnosed In April of this year right after the TN started, so I was lucky in that my diagnosis was quick. I had an MVD on October 3rd, so I had mine only 8 months after diagnosis. I am very happy with the outcome of the surgery and would do it again if I had to. I had a horrible reaction to all the drugs on minimal dosages, so I really didnt have an option other than surgery. I have both TN and ATN and both are pretty much gone.
I would agree with you that if you can get it done now, and someone good is going to do it, then I would go for it....I figure the sooner I was off the meds and pain free the better...hopefully it will work for you too