My experience with Trigeminal Neuralgia-CyberKnife Info

I was diagnosed with TN in 2008.  I was 47 and physically and mentally healthy.  Initially I thought I needed a root canal, but dentist said he could not find anything and sent me to an oral surgeon who immediately pulled my tooth.  So now I am missing a tooth and the pain is still intense.  I finally diagnosed my condition and made an appointment with a neurologist who confirmed my diagnosis.  He started me on a few drugs and we finally landed on oxcarbezipine which worked really well after it got in my system.  I can't remember the exact length of time it took for relief, but I remember it did not happen immediately.  This drug worked for years and I became accustomed to the side effects of memory loss, stuttering, fatigue.  I made mysely run, bike and just stay as active as possible.  I would actually take myself off the drug because I felt pain free and wanted to feel as normal as possible.  Whenever I would feel a tinge of pain return, I would just go back on the oxcarb and it would work as it got back in my system.  I continued this for the last eight years.

In late June and early July 2016, my son and I went to Philmont in NM for a two week backpacking trip at altitudes of 11,000 feet.  I had not been taking my meds for a few months and felt great.  Of course,  it came back at the very worse time and I had no meds so I just had to tough it out.  I got back home to Birmingham, AL and got back on my oxcarb immediately, but it had stopped working.  Once I figured out that I was in trouble, I made an appointment with a neurosurgeon, Dr. Swaid Swaid, here in Birmingham.  He was great and he knew exactly what I was going through.  We discussed options and I decided to go with the CyberKnife.

He scheduled me for the next week for three sessions-Tues, Wed, and Thurs.  Each session was about an hour long and there was no pain at all.  I was comfortable, but a little drowsy after each session.

This was three weeks ago.  I had a follow up with Dr. Swaid yesterday.  My pain is still here, but it's a thud instead of an electric jolt.  I even had a few hours two days ago when I felt completely normal and pain free and relaxed.  My lip on the side of the pain is a little numb, but I can still smile and I'm not drooling.  I am still having some electric jolts, but they are becoming fewer and far between.  Dr. Swaid said all of this is expected and is even better than normal.  He told me most don't feel relief until three months after the procedure.  He told me to stop taking as much oxcarb as I can tolerate so I'm down to 1200mg right now.  My sight is a little fuzzy, but passable.

Anyway, three weeks past the CyberKnife and my life is getting better and I'm optimistic it will continue.

I just wanted to share my experince with the CyberKnife as I could find very little info when I was trying to make a decision.  I hope a cure is found for this soon.  It's hard to decribe to pain and despair one feels to someone who has not experienced it.

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