Quote:
Originally Posted by Karen B
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!
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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.