When is it time for surgery?
 

I touched on this in another post, but I would love to hear as many thoughts as possible. I am struggling with my choice.

To summarize:
*no remissions for 1 year now
*pain every time I eat, drink and on bad days when I talk
*in my 20's
*pain is manageable thanks to Lyrica (225mg), botox and capsaicin cream
*Typical TN
*pain lasts a couple of seconds, but I get zapped hundreds of times a day
*no obvious cause on my CT scan

I can cope, but it is draining. Because I do not have an obvious compression my neurologist wants me to have a RF rhizotomy instead of MVD. I am afraid of anesthesia dolorosa as a side effect of the surgery. I am pain free at night and do not want to lose that. But to even reduce the pain by surgery would be lovely. I feel torn about what to decide; take things as they are now and try to be happy, or hope that surgery is a success.

Any insights, thoughts, stories would be very much appreciated!

I posted a link on here a while back which featured Dr. Casey talking about the current thinking regarding surgery. If you haven't watched it before, it could be beneficial to you now. Here is the link to it: http://vimeo.com/10284243 Its about 2 hours long so allow a good amount of time to view it. There is a lot of info in it regarding when to go for surgery.

Best of luck to you in making your decision. ee

Wow, thank you for the link. That was an excellent video. I have read liturature on people still having an MVD even when the MRI does not show a compression. Now after seeing that video I wonder whether I should press for an MVD instead of a rhizotomy.

Has anyone had an MVD without a clear compression on their MRI? Any opinions on MVD vs rhizotomy?

Karen, FWIW, I've read many accounts of people having an MVD when nothing showed on their MRIs and having successful outcomes. I think the vast majority of people with this condition have normal MRIs. There were more videos on the vimeo site that deal with TN but I don't know if any of them are as good as Dr. Casey's.

ee

Yes I know of many people who had nothing show on MRI and had MVD with great success. let me see if I can hunt one or 2 of them down to post reply here..
oh cheryl where are you.. lol let me go on the seeking ...
PEACE
BMW

p.s. kk sent out my hound so I hope one of em should be round to reply soon

My decision
 

Karen B.: It took me twenty years to make that decision. Please know that when it is time, you will know. You make your own decision. Sounds as if you had the same type of problems I had. Medication works for a while to manage your pain, however, after a while, 20 years with me, I could take it no longer. It took 20 years of my life that my children and husband will never forget. I had the MVD surgery in Pittsburgh by the surgeon who developed the surgery and his partner who may have move on. I am totally pain free since May of 2010, and was being syringe fed because the TN got into my mouth. Worst TN pain I had ever had. Please know that some procedures can prevent your MVD surgery from being successful, and because I listened to my heart and followed where I believe God wanted me to go, he gave me a miracle and after 20 years of pain, severe pain, I am pain free. Research, research and research and remember this decision needs to be very carefully researched. I am living pain free proof and was told I could have scaring after so many years of this illness that might prevent a success, however, I am totally pain free since my surgery and if I want a sour pickle, I eat a sour pickle.

I had a MVD 9 weeks ago without a clear compression on my MRI. I am only 22 and am finally pain free for the first time in 3 years. I highly suggest getting the MVD.. I am not sure what the rhizotomy is but my neurosurgeon was explaining to me that he will only ever do the MVD because if anything damages the nerve the MVD wont work (assuming you need the MVD bc your last treatment didnt work) .. I highly suggest getting the MVD.. honestly the best decision I have ever made in my life & no matter how long of a road recovery was (took up until 2 weeks ago 7 weeks post op to feel fully normal again) I would never change it. I'm not sure where you live but I highly recommend Dr. Raymond Sekula who is now working at UPMC in Erie PA (used to be working at allegheny general hospital in pittsburgh pa).

I had an MVD with no clear compression on my MRI, but when they opened up my head they found 2 compressions. My surgeon said that he never made decisions on whether or not to do the surgery based on an MRI that showed no compressions. He did an extensive study on this and found that just because he couldn't find a compression on my MRI didn't mean I didn't have one. In my case 2! It would have given me a better peace of mind if I could see it on the MRI. My compressions obviously didn't show up.

Good luck to you!!