I recently went to a neurosuergon to see about MVD and he said I am Atypical and am not a candidate for the surgery because of this but did say that sometimes botox works for people. I see my neurologist tomorrow and I am going to discuss this with him. Has anyone tried this as a treatment and has it worked? I was really hoping I would be able to have the surgery. I am at my wits end with my pain. I am suffering every day and I have been on several different meds. So I am running out of options.
Lena
I was what my surgeon called “so atypical I don’t think it’s TN”…we still did the surgery. It’s now week 4 and my pain is almost gone. My neurosurgeon does over 50% of the MVD’s in Canada, so he is very well versed in TN + MVD outcomes. So when he was doubtful, so was I. But he felt I had about a 60-65% chance of success with the MVD. I took the chance because the only other option was drugs for the rest of my life.
I don’t know why I posted this except to share my feelings about “giving up”. Don’t!
CAT
Hello,
Here is a link to a discussion that was going a few weeks ago.
http://www.livingwithtn.com/profiles/blogs/has-anyone-had-success-with
It was started by Catherine on Feb 10th. If that link doesn’t work.
Inside that thread there is a post by me with a link to my Botox diary on another forum.
I am going to update it today. It’s been 1 week since the last injections.
Send me a note if you want to chat.
Sincerely,
A very atypical, bilateral face pain sufferer.
Stephanie
I know someone who has atypical TN or face pain. She was also not a candidate for surgery. She has been taking nerve blocks. She is on her 5th one and is doing better. You may want to consider that. But our neuro doesn’t do them. We get them at the pain center. I got my 3d one today. I believe the second one helped. The first one didn’t help at all.
What exactly do they do for a nerve block? I had never thought of doing something like this before. I am at the point were I am open to anything. Is a pain center the only place you can go to get them?
I saw my neurologist yesterday and he is open to sending me to someone to try botox. He also wants me to get a new MRI because I have gotten progressively worse really fast in the past 8 weeks. He upped my meds and added percocet. Since yesterday it is the first time I have been out of pain in two months unless I go outside. I am still really frustrated because it seems like I am going down hill fast. I should have the MRI next week. So maybe it might help.
I’m doing botox right now for my type 1 tn…i had really sore neck and back on head on the side of my tn areas and the botox has really helped the pain in my neck but my neurologist has used 200 units of botox to try and help all areas and we are doing it every 2 months… i have had an MVD and gamma knife that have both been completely unsuccessful!
Lena,
How are you doing? Have you made a botox appt? If you can take someone to the first appt. it may help with keeping you relaxed/calm for the first treatment. I wish I’d taken my hubby. But I didn’t know what to expect at all. Also, now that you have perc. you may ask if you can take that before you head in to that appt. Or see about making the appt. during a less painful time of day. At least make sure your meds are into your system for that day. I only take my tn meds in the morning but if you spread yours out or take them at night you may want to take some in the morning too that day. (like some do for prep for a plane trip or dental work).
Please keep us posted.
Stephanie
PS because you posted and Michaela wrote saying she gets her botox every 2 months I am going in tomorrow to beg to have my inj. every 2 1/2 months to avoid the wearing off period and the muscle fighting back period as it sinks in again. Thanks for bringing up Botox!