I had MVD 5 weeks ago. I still have some pain and I am trying to give the MVD some time to work. I have had ATN for about 2 years that has practically ruined my life. I was fortunate to find a doctor that would take a chance and perform MVD on me even though I had ATN. After the surgery he said my nerve was in really bad shape and the surgery should provide relief.
The only thing that has given me relief for my ATN in the last 2 years have been opiates. Before my surgery I was on Percocet and Fentanyl. They helped, but I needed a higher dose. Anyway, if my MVD doesn't work in the next 5 months I will have to go back to opiates. The reality is that I will have to take opiates for the rest of my life, I am 37. Has anyone had to accept the fact that they would have to use opiate therapy for the rest of their life?
I'm 30 and have had TN for 8ish years. I was told I am not a candidate for an MVD based on a Fiesta MRI, and I am considering Gamma Knife, but was told it probably will only help my T1 pain, not my T2 pain and that I will most likely always need medication. WHAT?!?! The medications don't WORK! I am worried this will be my future. Fingers crossed it won't be, but at this point, and with the pain I have - who knows.
Go for the MVD, my doctor told me there was about a 50% chance it would work and that was enough for me. If it works it will change your life. It is scary to have the surgery, but it only took me about 4 weeks to start to feel normal, I still have ATN pain, but it is less and my doctor said it may take up to 6 months for the nerves to fully heal. Also my doctor told me that if I get the gamma knife procedure that I can't have the MVD surgery for 1 year after the gamma knife procedure is done, that made me nervous and also confirmed my decision to have MVD. Good luck with everything.
Nate
LBHiker said:
I'm 30 and have had TN for 8ish years. I was told I am not a candidate for an MVD based on a Fiesta MRI, and I am considering Gamma Knife, but was told it probably will only help my T1 pain, not my T2 pain and that I will most likely always need medication. WHAT?!?! The medications don't WORK! I am worried this will be my future. Fingers crossed it won't be, but at this point, and with the pain I have - who knows.
Yes, and i'm 37 as well. I had a failed MVD last May and have been back on meds since. I developed an allergy to Percocet and was changed to Methadone which sometimes works and sometimes doesn't but it is better tolerated and does not give that "high" feeling that Percocet gave me. These meds I don't really mind but it is the anti-convulsants that I am on that I dislike the most for the side effects of brain fog and unsteadiness. I don't appreciate the third degree I sometimes get when picking up my prescriptions though as if i'm some addict or something. I would love to not need these medications.
I totally agree about picking up the medicine. I feel like everyone at the pharmacy thinks I am a drug addict. I really want to get off of opiates, but I am not sure it will be feasible. I also agree with the anti-convulsants, they really screwed up my brain. I would say things wrong and I couldn't remember simple things. They never really worked for me, the only one I am on is Lyrica, which is worthless. Good luck with everything.
Nate
hope seeker said:
Yes, and i'm 37 as well. I had a failed MVD last May and have been back on meds since. I developed an allergy to Percocet and was changed to Methadone which sometimes works and sometimes doesn't but it is better tolerated and does not give that "high" feeling that Percocet gave me. These meds I don't really mind but it is the anti-convulsants that I am on that I dislike the most for the side effects of brain fog and unsteadiness. I don't appreciate the third degree I sometimes get when picking up my prescriptions though as if i'm some addict or something. I would love to not need these medications.
I have bilateral ATN. (TN 1 and 2, all three branches on both sides)When MVD failed to relieve the burning boring pain on my right side, my NS suggested a peripheral nerve stimulator for pain control. This device consists of electrodes placed just under the skin along the path of the nerve that are attached to a battery, which is also,under the skin, usually in the chest. By using a wireless controller, you are able to send electric impulse to,the electrodes, which turns off the pain stimulus to,the nerve. Since having this device implanted in August, I have not had to take any medication for my right side pain!
This may be worth looking into. Please feel free to ask me any questions!
Best
Christine
Did you ask a pain doctor about the nerve stimulator or your neurologist? Thanks for the suggestion.
Nate
Christine said:
I have bilateral ATN. (TN 1 and 2, all three branches on both sides)When MVD failed to relieve the burning boring pain on my right side, my NS suggested a peripheral nerve stimulator for pain control. This device consists of electrodes placed just under the skin along the path of the nerve that are attached to a battery, which is also,under the skin, usually in the chest. By using a wireless controller, you are able to send electric impulse to,the electrodes, which turns off the pain stimulus to,the nerve. Since having this device implanted in August, I have not had to take any medication for my right side pain! This may be worth looking into. Please feel free to ask me any questions! Best Christine
Nate, my neurosurgeon was one the one who did the nerve stimulator implant. I have seen a pain doctor recently, as I occasionally need to have programming adjustments made to the stimulator by the manufacturers rep done in a doctors office. My pain doctor does the implants for migraines and back pain. It is the same device, just different locations for the leads.
Nate76 said:
Did you ask a pain doctor about the nerve stimulator or your neurologist? Thanks for the suggestion.
Nate
Christine said:
I have bilateral ATN. (TN 1 and 2, all three branches on both sides)When MVD failed to relieve the burning boring pain on my right side, my NS suggested a peripheral nerve stimulator for pain control. This device consists of electrodes placed just under the skin along the path of the nerve that are attached to a battery, which is also,under the skin, usually in the chest. By using a wireless controller, you are able to send electric impulse to,the electrodes, which turns off the pain stimulus to,the nerve. Since having this device implanted in August, I have not had to take any medication for my right side pain! This may be worth looking into. Please feel free to ask me any questions! Best Christine
I had an MVD that didn't work for atn and I currently take 40mg oxycontin/day and 5mg percocet for breakthru and 120mg of cymbalta, and 125mg of nortriptyline. And I just turned 30 last week.
Sucks, especially when it fades in effectiveness as no doctors want to increase it and Ive been on the same dose for 3 months and it simply isn't as effective as it was. And honestly I've missed a dose a few times and it's not as bad as quitting cymbalta cold turkey.