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I wanted to share with you my own recent TN events / procedures - with zero results. TN has forced me to retire - but, determination and with a bit of luck I was able to complete 30 years of government service. Actually, I had a "dual career", 26 of those years were also spend in the military as an Army Reserve Officer with 3 years of active duty in the 70's .... two full time jobs, which became increasingly more demanding as I took over command positions in the mid-nineties, coupled with my civilian job as Division Chief may not have helped my TN situation; while I have been told that stress has no impact on TN - I beg to differ.
Despite TN - which struck in September 1999 I was able to successfully complete assignments as Battalion Commander with follow-on assignment as Brigade Commander with a promotion to COLONEL in between .... I think a life long goal/dream and determination with help from family and understanding from 'most' of my superiors allowed me to complete this last assignment. I had my change of command in July of 2005, within months, my face pain became horrendous .... it seemed as though TN just literally let go -- there was nothing I could do to reduce the pain, no amount of Carbamazepin or Baclofen would reduce the 20+ minute of pain events of continuous pain which could last for 4+ hours. I was unable to speak or walk and until this day I never leave the house w/o paper and pen --- just in case!
We contacted UPMC Pittsburgh, where I underwent an MVD in Oct 2000 (the pain returned in April 2001) Dr Kassam, my previous surgeon advised to come to UPMC - he was incredibly responsive- (we live in VA) that he would find relief for me. We arrived in the ER and I was given Dilantin - which, after an hour worked wonders, I was able to speak w/o pain. Arrangements were made to undergo a second MVD on 29 Sep 05, within 36 hours the pain returned ....... you can't imagine the frustration and anguish I experienced in addition ot the pain. Again I was placed on Dilantin, upon discharge 5 days later I was given the pill form of Dilantin with sprecific instructions. Two days later I broke out in a rash over my entire torso --- with skin beginning to peel, I immediately had to stop taking Dilantin, now I was back to 'trial and error' of various amounts and types of drugs to stop the pain.
What I wasn't told was that Dilantin stays in ones system for several months, causing severe facial swelling and disconfiguration which I experienced between October and mid December. It became a challenge to locate a neurologist in VA willing to take my case - now that I had surgery .... My dermatologist gave me the name of a well known Neuro surgeon at Johns Hopkins and through friends .... it helps if you tell friends of your 'plight' ... I was able to get an appointment at Johns Hopkins in Baltimore.
In February 2006 it was determined I was a candidate for a Rhizotomy consisting of Glyzerin w/ Radioactive material. I was placed under general anesthesia; my husband was being informed that I immediately responded to the treatment thus the injection w/ radioactive material was suspended ---- I am happy about that now. Because - two days later, guess what, the pain returned ...... I must be incredibly stubborn or persistent in living with TN! Either that - or someone is under the impression ---- I can handle it!
I have since reduced my medication of Carbamazepin to 200 MG a day - in my case, the first MVD surgery resulted in my having high blood pressure ... as a result I now take BP medication, that first MVD surgery also caused me to have double vision, which is being corrected through prism lenses. Having almost never taken any medication the first fifty years of my life - I barely even used aspirin, I have found myself in the past 6 years to have reactions to various medication, BP being one of them.
For time being I am managing just fine - actually, I am considering going back to work - much against my husband's will - but, I need a mission!
I am no longer a candidate for a 3rd MVD ... but, of course I am also aware that the Rhizotomy is temporary -- relief is estimated to be between 1-5 years; forgot to mention, the right side of my face and head, part of my lips and half of my tongue are numb as a result of this injection ... and I have decreased taste ... for time being I can handle it, but, I am wondering and always waiting for the next "wave of attacks". How will I face them, deal with them.
Thank you for your patience in listening to my story.
Posted 7-23-07 |
