I have to chose the right procedure for me. There is no medicine working anymore. I wondered who has had Percutaneous Rhizotomy (Burn).Microvascular Decompression (pillow or Shim) Focused Radiation (gamma Knife) Because I'd like to know who has had any of these and how they worked.Thank You
This is my first post so forgive me if it isn't right [/FONT]

I have had three surgeries. I had a radio frequency Rhizotomy first. It gave me pain relief for around 4 years. It was a simple procedure to go though but it took me awhile to adjust to being very numb in the face. I felt weird but got used to it and it faded. The procedure threw off my bite, my jaw no longer moves to the right (procedure was on the left). It took awhile to get my teeth ground down so I could chew right. I don't think this is a common problem!

After the pain came back and the medicine got so high again that I couldn't stand the side effects, I had a balloon procedure that didn't really work at all.

I didn't like the idea of the gamma knife because it takes awhile to help and doesn't last that long.

Finally after the failed balloon procedure, I had a Microvascular decompression. I have been totally pain free and medication free since then (about 4-1/2 years). It may be all I will ever need, but if the pain comes back, I would have another.

The MVD typically works the longest and I have read that it is more effective if done before other surgeries. It is harder to go through and has more risks, but if you have typical TN, it is probably the best solution. Of course you need to see what your doctor thinks and get a surgeon who has done a lot of them. It doesn't work for everyone but it worked well for me.

I'm so sorry I couldn't find this post again. I'm just new at this and having a lot of trouble knowing the correct way to reply. I wondered if your symptoms could have been the same as mine. the MDV that I have read up on is saying it works best with a-typical symptoms. Mine started out with the lightning bolts thru the side of my face the a-typical. Now in the past 6 months it has gone from that to burning even after I have the lightning bolts. Probably 85% of the day it goes on. I'm going in for another consultation and trying to gather questions to ask. Like I said I am glad I found this post again. I was searching for you and sent a message to someone else who probably really thing I've lost it. I am so happy you surgery worked and pray it continue for you. I also pray it will be the help I need. Oh I almost forgot to ask how long of a recovery to except. Thanks Donna

Hello DonnaRose

I had MVD surgery 1.5 years after being diagnosed with type 1 TN. The one that causes you to have random SEVERE electrical shocks in your face. My doctors tried all 3 of the major meds for TN but nothing worked for me. During that time I had to quit working and driving. My life was pure misery. After having the MVD surgery, I was totally episode free. I have been free of this disease for 3 years now. It took me about a month to recover at home and then a month after that I was back to work. Surgery literally gave me my life back. Yes, the surgery is scary (after all they will cut a hole in your skull) but well worth it in my opinion. If you go the MVD surgery route, please find an experienced Neurosurgeon that has performed a lot of these.

My heart goes out to you because I know exactly how you feel....

Ken

TY so much Ken. The MVD is very scary to me but if it works I can deal with the fear. I have been having problems navigating around this site so apologize for my slow response. I appreciate your help and I am going to ask them to do the surgery. The surgeon I have is at the University of Iowa Hospital and Clinics. The surgeon has been doing them for 20 years. I pray it works because I don't want to go through with this for nothing. I pray we will all stay pain free forever.

I hope all goes well. Keep us posted.

I forget how but you can subscribe to this TN forum to get an email when anyone starts a new thread or comments on one. The email will list updates to threads and new threads started and will give you a link to get right back to topics that interest you. That way you don't have to search for this topic or keep checking to see if someone responded.

I had the MVD surgery done 16 days ago. I was so excited when the doctor told me I could cut back my meds and be done with them in a week. After I cut them out completely the pains started coming back. Yesterday I got back on a small dose of the lamotrigine I was taking. Today my pain has been absent so far. I know I have to be patient because I have a lot of healing to been done. I am just so anxious to get off meds all together. My doctor is one of the best in the country for 2013-14. The University of Iowa Neurosurgery dept. is one of the top in the country. I'm praying and semi-confident my pain will be gone within 8 weeks. You are right Ken, if this works it will all be worth it. If it doesn't work I'll cross that bridge when I come to it. I need prayers that the pain will be gone and the surgery be a success. I will get back to everyone when I know.
I am always surprised there are so many out there that have no idea what this disease does to you. With no visible symptoms a lot of people don't understand how it really feels.
I wouldn't wish it on my worst enemy.

Donna, do not get discouraged because you had to start back on a small dose of medication. About 3 months ago I started having what I call small twinges in my right jaw. Same side my TN was on. They are not very painful but my anxiety level goes through the roof when I have one. I'm thinking oh s**t my TN is coming back. I got back on 400mg of Tegretol a day and now they are gone. I came to the realization that I will probably be on this med for the rest of my life but if this is the worst it gets....I can live with it. I'm still 100% better than I was before I had the MVD surgery.

Keep us updated on how you are coming along...

Ken

Sorry to be slow responding. I am traveling.

I thought the MVD worked mostly for typical TN which is the lightning bolts of pain, but check that out with a doctor. I started with the bolts and over a few weeks they became more frequent and intense. Before I was started on meds i had worked up to constant intense pain. I could do nothing but lie in bed. When i started Tegretol, I would take a dose in the morning, the pain would go completely away, then maybe 8 hours later the meds would wear off and in an instant the constant pain would hit and all I could do was go lie down. I couldn't even finish writing a paragraph on the computer. Once I got on medication, I never got the steady pain again.

I think my recover was only about a week or ten days. I was in the hospital for maybe five days. There were probably restrictions that went on longer - like not getting the surgery site wet. I had some bad headaches for a day or two after i got home. That's about all I remember.

TY you Jean for your help. I just found your answer after trying to find this post again My Symptoms are just like yours. They started with just the shocking pains and now constant pain along with the shooting pains. I can't rub my eye, blow my nose or touch my face without starting it up. I know I have to do something because I've exhausted all the meds that they have for TN. The ones I'm on right now are working right after I take them but stop long before my next dose is ready. I have been getting all kinds of loss of balance causing me to fall a lot. I can't remember anything. Can't even remember my grandkids names at times. God bless you and pray you stay painfree for ever.