Donald Strome, TN PatientHis Personal Story |
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About five years ago, I began to feel pain in the upper left side of my mouth. Over time, I had several root canals, which did not help to get rid of the pain. Two teeth were removed with no relief from the pain. I had two MRI’s and a CAT scan, both of which were negative. My doctor started me on 300 mg of Neurontin three times a day and over time he increased the dosage to 800 mg of Neurontin three times a day. I was essentially pain free most of the time and an asprin a few times a day took care of the most pain. During this period of time my wife and I visited our son in Texas and while in Texas I had extreme pain several times. This was probably in the year 2001. Then in December 2003 my wife and I went to Texas again to visit our son and the pain came back full time. I would wake up about every two hours and would take asprin, Tylenol, and/or Ibuprofen and for fifteen minutes I would suffer pain that was unbearable. Then I would get one hour of sleep before the pain would hit again. We were scheduled to go to Maui for our 50th wedding anniversary, but the pain was too severe so we cancelled the trip and came home. On the way home on the airplane I had two more attacks. I made an appointment with my doctor and he prescribed Endocet 10/65. I was to take it four times as needed. My pain comes and goes. The last few weeks of August 2004 the pain has become very serve and wakes me up about every two hours. I walk around the house holding my head and crying for about fifteen minutes until the pain medicine kicks in. Several times, in the fifteen-minute period that it takes for the pain medicine to kick in, my whole body will jerk like there is an electrical shock in my upper left tooth area. The pain starts in the upper left side of my mouth where the two teeth were extracted. Sometimes the pain moves up to the left eye area, then to the left side of my forehead, and finally to the left back side of my head. My primary doctor gave me a prescription for Trileptal to take instead of Neurontin but I never started this drug. I saw a neurologist on February 5th, 2001 and again in October 2003. I was sent to an oral surgeon to see if he would deaden the pain in my tooth area. He did not think this would help so he did not do it. I had an appointment with a doctor but I canceled him because my insurance does not cover him. A friend of mine went to him and hesuccessfully killed the nerve that was causing her pain. She has been pain free for four years. I have seen the original neurologist twice since then (on 4/21/2004 and 6/30/2004). He does not think that I have TN, but thinks it is probably A-Typical facial pain because I also have pain in the left back side of my head. Gamma Knife treatment is not always successful for my problem according to him. There are risks, but it’s probably worth the try. This treatment requires one day in the hospital and is done at a local Gamma Knife Treatment Center. I had an appointment with another doctor on June 22, 2004. They took a 360-degree x-ray of my mouth and the area around the pain looked normal. He did not think a CAT scan would show any more information, but stated that he could not do anything for me. He will send a letter to my other doctor, so until I hear from him I will just wait. The nerve would have to be killed at the branch not in the tooth area. Medicine I’m Taking:
Medicines that has caused nausea, allergies, etc.
I had an appointment on 8/31/2004 and he is going to set up for me to have Gamma Knife treatment next week. I think that he still believes that I do not have a true TN but that the Gamma Knife treatment is worth the gamble. I had the Gamma Knife treatment on September 17, 2004 and I had to stay over night in the hospital on September 18, 2004. It is now October 6, 2004 and I am still taking all my medicine. The pain is not bad with most pain centered around the area where I had two teeth pulled. This is December 27, 2004. The pain was bearable for the most of the last three months, but the unbearable pain started about a week ago. The pain still starts in the upper part of the mouth where the two teeth were pulled and then moves to the lower left back side of my head. Sometimes it also moves to the front left side of my head behind the left eye. I went to the doctor to check out whether my teeth might be the problem. My teeth were fine had this appointment about 1/2005. Started Acupuncture on May 12, 2005 and had seven treatments ended on June 2, 2005. Don’t know whether they did any good. About the same time I had acupuncture treatment I had a lot of nausea which lasted for about two months. The doctor suggested that I have a CT scan which I did on about 6/1/2005. The CT scan should I had a large gall stone and also a hernia on the right side. I had an Endoscopy on 6/14/2005. That doctor wrote me this note, “You have a small hernia but otherwise everything looks pretty healthy. Samples were taken. Strongly suspect the nausea is from the gallstone.” I later got a note stating that the samples taken showed no problem. On 6/16/2005 another doctor performed the Laparoscopic Gallbladder Surgery at the Polyclinic. We removed both the large gall stone and the small bladder. He stated that the gall bladder was inflamed and needed to be removed. Saw the doctor a week later and he stated everything was fine. I have not been nauseated for the last week so it was probably due to the gall stone and the inflamed gall bladder, which is what the doctor said. I sure hope this is the case. I started a new problem 6/23/2005. Don’t have any idea what started this but it has continued. I shake over my whole body when I try to sleep. It is like every muscle in my body wants to shake. It prevents me from getting to sleep so I don’t get to sleep until about 4:00 or 5:00 in the morning. I dread to have to go to bed because of this problem. I have tired Seroquel 100mg tablets but last night (6/25/2005) but even this did not put me to sleep. After the Gamma Knife treatment the pain in the upper left side of my head was gone. Two months ago a new problem started with the left side of my face and part of my tongue feeling like it is asleep. If I feel the face it feels like needles on my skin. I continue to have pain in the back of my head on the left side. The doctor’s call this “a-typical facial pain”. During this time I tired several different pain medicines which included Vicodin, morphine, percacet, and ultram. I stopped all of these because of nausea. Maybe I can take these now because the gall bladder was probably the problem. I am now taking the following medicines:
I have stopped all of the narcotic pain medicines. I went to see an internal medicine doctor-on 6/27/2005. If the shaking continues he wants me to have some more blood tests and to see a another Neurologist. Last three nights I have not had any shakes. The doctor thinks maybe the anesthetic I had during the gall bladder operation could be the problem. He wants me to find out from the surgeon the name of the anesthetic. I called his nurse who said the anesthesia that was used during the gall bladder operation was two. They were Dipirvan and sentenyu. Tube down the throat was only used to help me breath. Updated 8-23-05 |
