My Journey Through Hell, Unbelievable Facial Pain, Known as the Suicide Disease!
The Beginning, The First Five Years
July 29, 1989, a day that I will never forget, was an ordinary work day. I was in south Georgia assisting one of my clients with their payroll system. As a system's accountant and doing consulting as a business, I had a very happy career. I was driving home from south Georgia to Athens, Georgia, my home, when all of a sudden a bolt of lightening went through my lower front teeth. The pain was so unbelievable. I will attempt to describe it: It was like someone had removed my lower front teeth, had my lower front teeth being shocked by electricity, a stabbing pain, aching, and burning. I was on my way into a lving hell with the facial pain effecting everything in my life for the worst for over 25 years! For the first five years, I just cried, took tons of medicine, went through a ton of tests, and was a guinea pig for all kinds of weird procedures. My initial diagnosis was "atypical facial pain" I wriote the National Organization of Rare Disease. Someone just put a small newpaper clipping in a letter back from NORD stating that "atypical facial pain is a condition where a woman thinks her face is hurting, but it is not. It is rare psychological disorder." They were wrong, but I did not know that until five years had passed.
Depiction of the Trigeminal Nerve within the Brain
The "Root" of the Problem
After seeing dentists, oral surgeons, orthodontists, ear, nose and throat specialist, having ungone all type of dental and medical procedures and tests, I was given a lead with an oral surgeon at a party, Dr. Gerard B. Creagh Jr, DDS. He was different from other doctors because his wife suffered from a terrible related disease called hemi-facial spasm. Her face was effected by a different portion of the trigeminal nerve, and she would have involuntary spasms that caused her face to draw up very unnaturally. He did a series of diagnosistic tests by injecting my facial pain side, which was now on the right side only. My facial pain grew larger and more intense as time when by, and the pain would switch from my lower teeth to my right side sinus area, but the pain was from deep within my mouth to my cheek skin. After these tests, Dr. Creagh told me I had trigeminal neuralgia of an atypical nature. This diagnosis took 5 years. Half of all patients kill themselves within the frist two years! The relief from the shots he gave was very short-lived, but finally, I was not crazy, I had a true diaghosis.
Unbelievable Pain! More women suffer from this than men!
Three Types of Brain Surgery I Had
Invasive brain surgery done through the skull. The surgeon puts a piece of felt between the nerve and the artery compressing the nerve.
If done early in the diagnosis, very helpful. Most people miss out on this procedure until the nerve has damage making it less effective. I had very little relief from this surgery done by the surgeon, Peter Jannetta, who was the inventor of this procedure.
Insertion of long needle-like device into the front of the face, entering the brain stem. Surgeon electrocutes the nerve to damage it. This is very painful as you are awake in the surgery.
Pain relief can be achieved, but normally the pain returns. I had roughly three months of numbness, which was preferable over the pain, but soon after my nerve regenerated, and the pain returned.
Gamma Knife Procedure
The least painful procedure. You wear a device, or head gear that is screwed into your skull. Your surgeons review many MRI's, where they plan your treatment. Then you are taken to the gamma ray knife. Multiple, numerous beams are then radiated through your head to one central location where the surgeons deaden the nerve causing the issue.
This procedure helped me the most. I felt relief immediately after the surgery. I wanted to do it again, but Duke and The Univesity of Utah said it was too dangerous.
Study Hard, Get the Facts, and Plan to Live!
The best advice I can give patients who have facial pain is to search for the right doctors. Read everything you can on the treatments and drugs. Get your family to help you right away. You will not die from this disease, but you will become more and more depressed. The depression is a result of pain, not the other way around. Get psychiatric help immediately to help you cope with the effects of the disease. Many psychiatric medications assist in sleeping, keeping a reasonable level of happiness, and be sure to not take too many drugs. You can become a zombie if you take too many. Remember you are not alone. Thousands of people deal with pain like this everyday. Live your life to the fullest. If your suicidal, call a hotline. Use the hotline when your family is too tired to listen or help you. Get on with your life. Let the pain be a side issue, not the first issue. You will not die so learn to live with biofeedback, help with counseling, and selecting the right procedures for you. NEVER ACCEPT IT IS ALL IN YOUR HEAD! WELL, IT IS, BUT NOT THE PART WHERE YOU ARE MAKING IT UP!
Another Woman's Journey
Another Example of a Person with TN
Here is a short video of another woman's suffering with trigeminal neuralgia. This lovely woman has had the treatment, microvascular decompression three times, unsuccessfully. It takes courage, strength of will, determination, and close healthy relationships to manage TN pain. This video shows how she has a very difficult life, like mine before my last third brain surgery, gamma knife surgery, and how she deals with it on a daily basis. This patient is courageous, intelligent, and has the love her of husband and friends. Please watch it if you want to know how it effects your life so drastically.
Exactly where is the problem? Deep within the Brain!
Advice for Facial Pain Sufferers and A Summary of My Journey
I feel that I can help someone with facial pain by alerting them to this condition, and by asking their doctor to rule out every other possible cause for the facial pain. There is no definitive test that says you have trigeminal neuralgia. It is a research and rule out other problems. You must do this quickly so that if you have trigeminal neuralgia, you can get treatment, especially surgery before months or years have passed. If your doctor and specialist can find no tumor, no dental work, or any other causes for your pain, make a suggestion and ask your doctors if you could have trigeminal neuralgia. They will give you tegretol to see if it helps, which in some people it does, but for me, it did little. Then if you feel confidant that you have this condition do one of the brain procedures soon after the diagnosis. The microvascular decompression would be first as it does not harm the nerve. However, if it does not work, I would recommend the gamma knife procedure. Be firm with your doctor that you are hurting, and the pain may make you seem crazy, but it is real and needs treatment early so that nerve damage can be provented.
I now live a very happy life, with pain, as I regulate my pain with medication, proper sleep, and with positive life decisions. I do biofeedback constantly. I don't cry. I don't moan. I can act very normal even though I am hurting like I have had rootcanals done on all my right side teeth! It becomes where you have to make yourself live. The gamma knife procedure worked the best for me. I would recommend it highly. But please go to a place where they are consistently treating trigeminal neuralgia. Don't be a guinea pig like I was in the beginning. I thought the doctor's had all the answers. They don't. You must be your own patient advocate. For those that want to contact me about your facial pain, please do through this site. I will try to answer any questions you may have! Good luck and hopefully you won't hurt for the number of years I have. From 1989 to now, I have been in pain everyday at some level, now less than ever, but still in pain. I want my life to be remember as what I contributed, not the fact I have a pinched nerve in my brain!
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Gamma Knife: The Surgery that Worked for Me!
World Health Organization Needs Your Help for TN sufferers!
- Petition International Trigeminal Neuralgia Awareness Day
Trigeminal neuralgia (TN), aka "Suicide Disease" is a chronic pain condition that affects the Trigeminal or 5th cranial nerve, one of the largest nerves in the head. The disorder causes extreme, sporadic, sudden burning or shock-like face pain that l
Post Summary: Contact me for my opinion of options you have.
Since I have gone through so much, I may be a great contact just to bounce ideas on your treatment plan, I would love to help anyone who is suffering from TN. Please contact me through this forum, and I will be glad just to listen or give advice. Whatever you need, you are not alone.
Please sign the World Health Organization link petition so that this disease is noted as being serious to health of individuals. Your signature makes a difference!