I had a MVD about 9 months ago, with only partial success. There was scar tissue on the nerve from the compression, and the neurosurgeon said I need to wait a while to see how the nerve heals. After an MVD, were you alleviated immediately, or did it take a while? Also, my nuro wants me to try some medicine to take away the pain, but I'm skeptical. Can medicine actually help with the pain? I'm a singer, but singing is one of my triggers for pain!
I've been controlling my pain with medication for about 10 years.
I've used Neurontin for most of that time, but am currently on Lyrica and a low dose of Tegretol. Getting the right drug(s) and the right dosage takes a little work, but after that it really isn't too bad.
To be honest, I'm always surprised at how fast people rush to surgery these days. I'm putting it off until the medications don't work because the risk of complications is relatively high and you can only try it a few times.
I'm primarily Type 1, but Type 2 has been creeping in as I age.
Me too Tina! I take tegretol 400mg twice a day right now and I will continue with meds until they no longer work. Then I will opt for the MVD since it has the highest success rate.
Tina S said:
I've been controlling my pain with medication for about 10 years.
I've used Neurontin for most of that time, but am currently on Lyrica and a low dose of Tegretol. Getting the right drug(s) and the right dosage takes a little work, but after that it really isn't too bad.
To be honest, I'm always surprised at how fast people rush to surgery these days. I'm putting it off until the medications don't work because the risk of complications is relatively high and you can only try it a few times.
I'm primarily Type 1, but Type 2 has been creeping in as I age.
When I was first diagnosed ten yrs ago I was able to manage,eventually on Tegretol.
I enjoyed an 8 yr remission. I didn’t know it could come back, until it did 2 years ago.
I went on Tegretol again and lived “normally” on 800mg Tegretol. ( slow release)
When I saw my neuro 2 yrs ago, I remember him telling me that in his experience when TN comes back it gets worse and harder to manage with meds, I didn’t believe him, and said “not me” .
This past spring my TN became harder to control…I’m still trying different med combos, currently Tegretol and Baclofen. ( a few others this summer)
I started researching options other than meds during the summer, I’ve finally decided on MVD.
I have bilateral TN, tn1 on right and tn2 on left.
It’s a personal decision, for me I’m on high doses of my meds that affect my ability to function and I get very sporadic relief . I’m young and otherwise healthy, I’ve researched and feel mvd is best for me. I am still going to try a cervical chiropractor…just to try… I do know I don’t want to do anything that could damage my nerve. Mind you a year ago I said I would never do an MVD. Constant pain and hitting a 10/10 a few times changed my mind in that respect.
It’s all about hope…
If you’re having pain I would try a low dose of something to help alleviate the pain, why suffer ?
Prior to TN I never took anything stronger than an Advil, I hate pills…but when you’re in horrendous pain you do what you have too, to function.
Christian, good luck, maybe head over to the MVD group and ask your questions regarding your MVD? Read as much as you can and then decide what’s best for you…
Take care, Mimi
After my MVD - pain came back - less - but in week 11.
Then I went back on meds - low dose - for a month - and now have been at my MVD one year mark
Those meds made my IQ plummet and I could not handle it.
yes, I have good pain management through Gabapentin. I take it religiously at set intervals. I set my phone to remind me. Whilst everyone of us should always consider surgery very carefully, I have to say I have heard of many members turn their lives around because of it. I am leaving it as a last resort while I am managed.
I am also managed on Gabapentin if you call not chewing or talking, blurry vision and not being able to drive as being managed. I am meeting with my neurosurgeon tomorrow to discuss an MVD. I am 67 and in good health. If I wait to have the MVD, I may not be healthy enough to have surgery. And yes, it has the possibility of a bad outcome but I do not think I can afford to wait. Everyone is different and must decide what is right for them.
I have tried every drug cocktail imaginable, nothing has touched the pain.
But…… I have read that effectiveness of medication also depends on how long you have had the pain. I.E It’s more difficult to reverse the pain through neural pathways if it has been there a while. I went more than a year before proper treatment for Neuralgia (I was getting “Sinus” treatments for nearly a year) , which is why I think the meds had no effect. In fact I believe if some handed me some Amitriptyline the day my pain started I might be pain free right no.
I would personally not delay or procrastinate on getting on at least trying regimen. Worst case it fails, and then you can consider another surgery. .
I had MVD, and I was still having pain. I need to work also, so I had SRS. I did feel this immediately, although this is not expected. My oncologist said not to be surprised if the pain comes back. That doesn’t mean it will not go away.