hi i am very scared because my neurorologist said it was time to look at surgery. my mom came over today said she had no money to travel or pay for the hospital bill that my insurance wont cover. i am really scared my pain is constant and severe what options do i have now? thanks michelle
Hi Michelle, if ur pain is constant u have type 2 which has a much lower success rate for surgery anyway. I also have type 2 and in my desperate state I had a MVD, and several different blocks which we also unsuccessful. Maybe this is a blessing in disguise for u!! My advice for u is to work with ur neurologist to find a good med combo. I take trileptal 1800mg/day, baclofen 30mg/day, cymbalta 60mg/day and honestly this is the best pain control I have had in years. An anti seizure, muscle relaxer, and anti depressant is the standard for type 2. I wish that someone would have told me this years ago and saved me from a lot of added pain and heartache!! ((HUGS))
I just visited a doctor today and waved literature at him, I got the increased prescriptions for amitrip and gabapentin (I have both type 1 and 2) and managed to convince him to give me at least codeine (luckily I have some oxycodone left as a last-ditch med which only gets used a few times a month) but he was reluctant to add in baclofen when I suggested it, he said he has never prescribed it for anyone let alone me :/
What is taking baclofen like? Can you still drive? Does it work well?
I agree with Lisa26 that an anti seizure, muscle relaxer and anti depressant is the standard for type 2. It works for me.
Best wishes ( hugs)
I didn't have any side effects at all from the baclofen -- if I did, it seemed really inconsequential compared to the tegretol, etc. Eventually was taken off of it because it didn't seem to be helping, but it didn't bother me at all (and I really struggled with side effects from most other meds)
Only side effect I ever had from the baclofen was drowsiness…but, that was when I took 60mg/day…so start low and titrate up…
Hi Michelle, this is not a good situation to be in, I feel for you. I am adding a link that may help you. You may get other options from members. I am from the UK so do not fully understand your health insurance system. I do however know that travel costs, parking eating out alone do amount to a ton of money. Hope it helps.
HI Michelle
What about a benfit fundraiser? My sister has MS and because the procedure she needed was only offered in the US or Mexico and was not covered by our health care we , called all our friends that could sing , we asked for donations for silent auction, the family got together and eveyone pitched in to put on a speghetti dinner. We raised enough for her to go to Mexico and have the procedure done. Now she has carried it on every year for someone else that needs it done.
It worked for her maybe this might be something that would work for you.
That is a great idea,we have fundraising all the time in PA.I know if I would need an operation,got so many friends and family to support the cause.Every one I talk to has no idea what TN is,and I tell them to read about it,so supportive family and friends in my life.
Cathie Lynn said:
HI Michelle
What about a benfit fundraiser? My sister has MS and because the procedure she needed was only offered in the US or Mexico and was not covered by our health care we , called all our friends that could sing , we asked for donations for silent auction, the family got together and eveyone pitched in to put on a speghetti dinner. We raised enough for her to go to Mexico and have the procedure done. Now she has carried it on every year for someone else that needs it done.
It worked for her maybe this might be something that would work for you.