Wednesday, September 27, 2006



My constant pain and the Miracle from God

This did not happen because I am Special, or prayed in a certain way or prayed at all, for that matter. There were not special words nor do I have the power to pray and get answers or help for others. I tell this because I know others have the same happen in their lives but are afraid to tell for fear people will not believe them or think other negative things about them.
This is how it happened to me:

God gave me a Miracle. A true Blue Miracle that has many of my doctors agreeing it is such.
My neurosurgeon writes in my chart that what happened is "amazing" He says to me; "I have to see the definition of Miracle before I call it that." .I think he is afraid of it. I sent him the Webster's definition but he never replied back.
What is this magnificent thing that happened to me? Is it something that is only specific to me?
In a way yes, but I think in a much greater way the answer is "No."
I had trigeminal neuralgia. This is a facial pain disorder that is known also as "the worst pain known to man." It has also been called "The suicide disease."
For me it was the latter.
I had undergone numerous brain surgeries to try and stop the pain.
It turned out the cause of mine was a birth defect that gave rise to dozens and more of extra blood vessels throughout my brain. Some were wrapped around the trigeminal nerve.
This nerve is one of the 12 cranial nerves. The trigeminal nerve allows you to have sensation in your face.
For those with trigeminal neuralgia the sensation is pain. Horrendous, life destroying pain.
My pain was constant in the left upper side of my face. It was also sporadic. The pain would come out of the blue and smack me in my left temple. It was like a lightning bolt hitting me and burrowing a thin line through my face. It only lasted 20 seconds or so but was so horrific I sat statue still for 15 minutes - afraid to move for fear of setting it off again.
A slight breeze or a wisp of hair could also set it off.. Wind, cold, and bright sun became my enemies; fearsome and loathsome, because they too caused trremendous pain.
It was only one half of one half of my face but it totally disabled me.
Once I was diagnosed, a process of many painful tests and drug trials, I started on the neurosurgery highway..
The first operation stopped the pain. For three months.
Then the blood vessels grew back. And the pain assaulted me again.
The next brain surgery and the next and the next, six all told, did not help. I was better in the summer because the weather was better. That let me go outside more but the pain was not stopped.
I suffered terrible side effects, including the loss of tatse and feeling in the left mouth and tongue. The entire left side of my face was paralyzed. I could not give up on finding a way to stop this terrible pain. I continued to stumble through more tests, drugs, even alternative treatments, such as hypnosis and a pain clinic, to no avail.
I was at the end of my rope and strength.. I had to stop the pain. If suicide was the only way that could happen; so be it.
I told my psychologist. She suggested I consider seeing her colleague who used LSD. She also suggested I meet with a thanantologist. He could help me deal with my death.
I did not want to see the LSD lady. Instead of the death specialist I went to a (nonhospital) pain clinic.
They were very nice there. But most pain clinics work with pain from the neck down. After all what can exercise, relaxation techniques, biofeedback and so on do for the face?
The owner of the clinic, a psychiatrist, thought the benefit would be for me to be away from my daily life for a bit. He asked me directly "What will you do if we can't help the pain?"
I told him the truth. "I will kill myself."
A while later he called me back into his office.
"Carol, I called the chief psychiatrist for the Maryland Court (where the clinic was located.) to see if you could be committed since you are threatening suicide."
"I'm not making a threat. I don't want to die." I said. "I just will do whatever I have to to stop the pain."
"He essentially agrees. He told me we could not have you committed since your threat is in response to a legitimate medical situation."
I stayed there for a month. My pain was no better when I left than it had been when I arrived. Among the good byes and hugs from the other patients, members of the staff said "We'd prefer you don't kill yourself but we'll understand if you do."
I was ready to go home and act on it. At the last second the director called and told me a neurosurgeon he hoped could help me agreed to see me. I called him and he said "Yes. I have an operation I think will help you."
I went to the Massachusetts General Hospital and expected to be operated on. Instead of the surgery he had told me about on the phone it turned out he wanted to do a mini- frontal lobotomy: "You'll still have the pain. You just won't care that you do."
I said I would try anything to stop the pain but this was not acceptable.
The experience with him had been very difficult and, because of the relationship between Dr. Sweet and I, crazy making.
I went home thinking if I killed myself I would not know if it was from the pain or from what had happened at the hospital.
I made an appointment with the thanantologist. We talked but it did not help me feel more confident in my emotions and reactions. I decided I could not do anything until I felt more sane.
That was in 1981.
I limped along with the pain for five more years; slightly less disabled primarily because I was on more drugs.
Finally I went to see Dr. Barolat, a neurosurgeon practicing with the same group where my first surgeon, now retired, had been. I trusted Dr. Osterholm so much, and he had stopped the pain. Somewhat magically, I thought this man could do the same.
At first he did.
I agreed to a brain implant, called a dorsal column stimulator. It did nothing for three months. We decided it should probably be removed because it was doing nothing. And then it suddenly kicked in.
My pain was gone about 85%. I was still disabled because of an eye movement pain that had stopped me, from the start, from reading for more than 15- 20 minutes before I had severe neauseating pain.
But I was able to stand in the rain, the cold, the wind. And not have pain. It was terrific.
And then the battery died.
The implant requires a computer type chip in the neck. It is powered by a battery, the size of a pacemaker, that is placed in the chest. Depending on usage the battery life can be up to 10 years. I had mine on for 100% of the time at the highest rate it could be used. Seven months after it was put in I needed a new battery.
He did 2 surgeries at once because somehow I had also moved the wire that connected the battery and the computer chip. After I developed an infection. The whole thing had to be removed.
Six months later he put it back. This time it did not work at all. And then I developed another infection. And this one also had to be taken out.
Dr. Barolat said he could not put in another one. There was too much scar tissue. I was beside myself. There was nothing more to be done.
And then Dr. Barolat said "I have an idea."
Instead of putting the implant in the neck he would put it in my brain, directly stimulating it. It would be experimental but pain was pain. It always made my decisions for me. "Let's do it."
The surgery was awful. It took many weeks to find the right combination of stimulation before it seemed to be helpful.
It never did what I needed though. I stayed on medications, including a lot of codeine. I never got to a point where I was not still disabled by the pain.
I waited a long time for relief.
Finally I was back to where suicide was the right and only answer.
I stood in my living room.
I had a bottle of pills in my hand. I prepared myself to take them.
"Okay." I said as I looked at them. "There's no other choice."
I felt sad. And scared.
And then I felt this compelling feeling. It was not a voice or words, just a sensation of being pulled. You need to lie down and put yourself into trance.
When I tried hypnosis to deal with the pain it had not helped at all. It only taught me how to put myself into trance.
I could have fought it or refused. I thought - What for? I know what I'm going to do. Then I went and lay down on the couch.
I don't know why I'm doing this. There's nothing to say., I thought to myself. And then the words came into my head.
I did not hear a voice; the words were just somehow there.
"Your brain needs to know and remember that the left fifth nerve, your trigeminal nerve, has been cut, burned and killed. It is totally and completely dead. Your brain needs to know and remember that."
The words continued, over and over, for 20 minutes. This was a way I never knew pain hypnosis to be done. It was always with "glove anaesthesia" The therapist would give you instructions to make your hand numb. Then you would touch the pained area, transferring the numbness to that area. The only other way I knew was to talk directly to the pain or pained area. I had never heard of addressing the brain directly.
The words talked to my brain and then I came out of the trance.
And the pain was gone!
I could touch my face. A face that had needed to be washed under general anaesthesia at one point. A face that had such pain I let them cut into my brain over and over. And give me narcotics, even opium and morphine.
That was in 1998. I don't know why God gave me this Miracle. I also have to admit that the eye pain did not stop. Why He would stop part and not all, only God knows. Maybe it was because it was the face pain itself that was creating a self imposed death sentence, not the eye pain.
I would love to be able to say everything changed and my life is terrific. That is what many people think of when they think of someone getting a miracle.
It is not. I want to work but the eye won't let me. I have no family. Not being able to work has kept me from making friends and having a full life.
I am often unhappy with my lot.
But I can touch my face. I can go outside. I thank God every day for this. He probably gets tired of hearing me for I also do it when the wind hits my face or the rain starts or its cold or breezy, or, or, or.........

-------------------------------------------------------------------------------------My book A PAINED LIFE, a chronic pain journey, is about the daily fight against and struggle with trigeminal neuralgia and then chronic pain.


"A fascinating story, honestly told and courageously lived."
Stephen S. Hall, science and medical writer, NYTimes magazine writer, Smithsonian, Atlantic Monthly.
Author, Merchants Of Immortality.

"A Pained Life is ... is so real, so honestly told, so suspenseful, that it is hard to put down..."
Reviewed by Kathy Lyons 3/28/04 for the American Chronic Pain Association.

("This is the true story of the author's struggle to overcome the debilitating pain of trigeminal neuralgia. Trigeminal Neuralgia (TN) is widely accepted as the most painful condition known to medicine. It is a disorder of the fifth cranial (trigeminal) nerve, occurring in only 155 people per million, which causes intense intervals of electric shock-like pain in the areas of the face where the nerve branches. Carol Jay Levy begins her story as a young woman about to pursue a career on the stage in NYC. Suddenly, her hopes are dashed, as this disorder invades her existence. Diagnosis is elusive (she is "too young" for TN) and doctors repeatedly try to pigeon-hole her as mentally ill, due to a history of depression. Finally, the diagnosis is made, but treatment is ineffective, and she considers suicide, as some 80% of people with TN are thought to do. ACPA)

author; A Pained Life, a chronic pain journey

This page is powered by Blogger. Isn't yours?