Ed Casey, TN Patient

His Personal Story

To start with the last few years first, my TN started to really exacerbate about 4 years ago and I had in Aug, 2002, the microvascular decompression surgery and have had not pain since. My neurosurgeon, Dr. Jonathon Hode, M.D., here in Louisville, Kentucky did the surgery and he did well. He is a very nice person and I would recommend anyone to him. He is very clear in regard to the information he gives and he was very nice to me. One thing during the surgery he did was that he took before and after pictures regarding how the vein or artery was embedded in the Trigeminal nerve and how he separated these two. He was aware of TNA and verbally was very supported of it.

I also, prior to seeing Dr. Hode, saw in Cincinnatti, Ohio Dr. John Tew, M.D., who is renown for his work with TN and speaks a lot at your educational conferences. (Dr. Tew is a member of the TNA Medical Advisory Board.) 

After about a year of not anyone being able to diagnose what I had I was fortunate that eventually it worked out. I had seen about 5 different M.D.'s over a 7 month period along with my dentist and they had no idea what was going on. It was not until I went to a dental surgeon that he suspected that my pain might be related to some type of neural condition. Prior to my TN condition being correctly diagnosed I had nasal surgery, and dental surgery which were both completely unnecessary. All during this evaluation ordeal, I had HMO coverage and I have no complaints about what my primary care physician did, he simply did not know, but he was willing to keep referring me to specialists who maybe could help. 

In now looking back, my ordeal was pretty "text book" in regard to it being at least a year's period before my condition was finally diagnosed correctly. After which, I was referred to a neurologist who placed me on Tegretal and other meds, but the Tegretal seemed to help me the most. I was on this for about 3 years along with a multitude of pain meds and during that time the pain increased in intensity and because of the pain I became more socially isolated simply because the pain was so intense I could not talk. For the last l0 years prior to this time I was a teacher of psychology at a nearby university and had to drop out of this because of the pain. I went in 2 years from 215 lbs to l62 lbs simply because it hurt too much to eat. You have heard similar versions of this before but now that I have this machine it takes a lot of less time to tell you the above.

My family was very supportive during all of this, but initially they did not know what to do. I believe it was about 3 to 4 years before I had my surgery that I became aware of TNA. What I did in my situation was that I gave the information you sent me to my family and they were very receptive in reading it and in trying to understand the information I gave them.

It's part of human nature that one and/or family can only be sympathetic to someone for so long. Most illnesses are diagnosed quickly and treated quickly. From a personal and also a medical insurance perspective, this is not the way with TN. Once my family got your information they understood "a whole lot better." They really could not do anything, but they seemingly were more comfortable around me and that meant a lot. This is one aspect of the illness that I want to thank TNA for. I am sure that there are a lot of families who would not take the time to read the information you gave them.

I recently talked to a lady who lived outside of Lexington, Kentucky.  She had gone through "heck" her husband did not believe her and she had lost a lot of weight and she told me that she had gone to a motel with a gun to harm herself because no one would listen to her. Finally, her husband came and the last thing she told me was that she was to see a neurosurgeon in Lexington, Kentucky and had an appt in about 3 months because she could not get an earlier appt.

Interestingly, after I had the operation I contacted a cousin of mine on my father's side, and she also had facial pain. I sent her the information and contacted TNA.  If you need anyone to attest as to how valuable you support groups are, I can!

The bottom line is TNA - thank you very much for all your help.

Updated 2-4-05