|
In June of 1985, I dropped a 10' x 7' shed on my head ( don't ask how or why ). After that I was numb from the nipples down on the left side to my left foot. That scared me and I went to my doctor and he gave me Motrin because he didn't have a clue as to why I was numb. That didn't seem to help but when I ran out of the Motrin I had severe lower back pains. In July a friend told me about his osteopath. So I went to his osteopath and his treatments didn't help. My job required me to climb telephone poles and my left leg would give out. Also if anyone would massage my neck it would make it worse. A friend of mine told me about this good neurosurgeon. So in December I went to see a neurosurgeon. He examined me and said I had no pulse in my left arm when he raised it over my head and the only way to find out what was wrong was to do exploratory surgery. I didn't want that so he said not to lift my arms over my head, do not jump up and down, and when I cannot walk to come back and see him. He then prescribed 800mg of Motrin and said to take them as needed. When I ran out of Motrin the pain was terrible. It seemed like the pain of every bump and bruise over the years came back. So I slowly quit taking them, it took a long time and a lot of tylenol. Once again I gave up trying to find out what was causing the problems.
In May of 1990, a friend of mine went to the doctor for his yearly check up and they discovered he had cancer. That gave me a wake up call. By now I had chest pains besides the other symptoms. So I went to the doctor for a check up. I didn't tell the doctor about any of my symptoms. I got tired of describing my symptoms to doctors that didn't know what could be wrong. The doctor heard a heart murmur. He thought I should go to a cardiologist to have it checked out. I called my mother to see if I ever had a heart murmur and she said no. So I went to a cardiologist and after all the tests ($3000.00 worth) he said I wasn't having a heart attack and the murmur was on the low pressure side and wasn't that bad. He didn't know why I was having chest pains. So here we go again, another dead end.
In November of 1990 I was losing my balance. If I would shut my eyes while standing I would fall. Also, my left leg would give out. My wife's friend told her about a chiropractor that was doing something new. By now I was medicating my self with beer. It took twelve beers to stop the pain and allow me to sleep. So I went to see that chiropractor. He took x-rays of my back and neck and said my back was ok (no slipped discs) and the problem was in my neck. I was so glad to know I didn't have any disc problems ( my mother had back surgery for disc problems). He used a computer to find the exact spot to put my neck back in with his special equipment. It seemed to help but I had to have this treatment done twice a week. It seemed just as I was getting better I got into a car accident and we had to start all over again. He didn't believe in MRI's or any other test.
In January of 1993, I changed our health insurance to an HMO because my current plan didn't cover as well. A friend of mine said it was great! My chiropractor wasn't on the plan, so he offered a deal, for $200 he would keep treating me and correct the problem. I didn't accept his offer.
My wife insisted that I go to another chiropractor. So in August of 1993 I went to another chiropractor covered by my HMO. During his exam I failed the big toe test (where they move your toe and you tell him which way he is moving it) and like always, while standing I closed my eyes and fell. Also when he was checking my neck my left arm went numb. By now I didn't have any feeling from my nipples down to left foot and in left hand, severe pain from my left shoulder blade around to the front of my chest and from the middle of my back down around to my left groin. I was experiencing sexual dysfunction and still had my bladder problem. He suggested that I see a medical doctor. I never did because they never found anything.
In December of '93 while I was backing into my parking space my accelerator stuck on my company truck and I went through a block wall. That made things worse...so my wife says. The chiropractor was adamant that I go see my family doctor. He said that he could make things worse by manipulating me. So in January of 1994 I went to my GP and he took x-rays and didn't find anything wrong. He sent me to a neurologist. Like before, I failed all the tests. She was amazed that I could not feel anything from the nipple down on my left side to my left foot. She thought my lack of feeling in both hands, but left hand was worse, was caused by carpal tunnel. She ordered a x-ray of my lower back and found slight scoliosis. After telling her about the shed incident and that one chiropractor said it was in my neck, she ordered a MRI of my neck. She wanted it done that day but because of work I had it to wait until the weekend.
My first experience having an MRI wasn't good. Being in the tube wasn't the problem. Laying still in one position made all the symptoms worse. I felt "funny" afterward, like maybe the magnets did "something" to my spinal column or nerves and my wife said I looked terrible after it. I was supposed to go back and see the neurologist the following week. Her office called and wanted to cancel my appointment and wanted more MRI's to be done. I didn't understand what was going on and asked for them to have the doctor to call me. She called and told me that a syrinx was found starting at C-3 and still going down. The neurologist talked to a neurosurgeon and he wanted MRI's of the whole spine and of the brain. She gave me ASAP's phone number. I was dumbfounded and scared. I called ASAP when I got back to work, got the answering machine, and left my home phone number. I was unable to tell my wife because she was at work. Before I was able to get home, Patricia called the house and my wife answered the phone. Talk about blind siding my wife! She didn't understand why someone from ASAP was calling let alone what a syrinx was. My wife called me frantic at work and wanted to know what was going on. She had to wait until I got home to tell her because it was a madhouse at work. Thank God for Patricia at ASAP. She explained everything about SM. It was a nerve-racking wait for my appointment with the neurologist to go over the results of my MRI's.
My wife went with me this time and the results were, my brain was normal, the syrinx stopped at L-1 and a tumor (the size of a five pack of gum) showed up at T-9 to T-12. The syrinx was so bad that my spinal cord was herniated around the vertebrae. The neurologist set up an appointment with the neurosurgeon (the best one in town). The neurosurgeon was amazed that I could still walk and wasn't having serious bowel or bladder problems. He said the shed that I dropped on my head didn't cause the problem. He thought it might be a birth defect because as far back as in 1975 I had bladder problems. He was also a little perturbed that I waited so long to find help. I told him the last neurosurgeon said to wait until I couldn't walk before I come back, well at that point I couldn't walk well and so there I was! I also told him I saw doctors but no one could find the problem.
Because my spinal cord could burst at any time, I opted to have an operation to remove the tumor and a shunt installed to drain the syrinx the next week. The doctor was so confident and we were so naive! I was so happy that they finally found out what was wrong and thought the operation would solve everything. The neurosurgeon would take out the tumor, drain the syrinx and I would be back to normal in three to six months. He told us I would be "weak" but if you are weak you can get stronger, right? I would work hard to get strong so that wasn't a concern...until we discovered the neurosurgeon's definition of weak and ours differed greatly! We were so terribly naive!
March 10, 1994, my wife and I walked into the hospital full of hope. After five hours, the neurosurgeon came out of the surgery and told my wife there was a problem. First he couldn't remove the entire tumor and couldn't put the shunt in. He started to have trouble distinguishing the tumor from the spinal cord. He also said he "hurt me" and needed to stop and wait for me to wake up in recovery to find out what and how severe the damage was. In recovery, I had a severe pain running down my right leg to my little toe. They were giving me morphine and it wasn't working. My wife came in and saw me in so much pain she asked the nurses why. A nurse asked my wife if I drank alcohol and she said yes. They told her that was the problem, my body had built up a resistance to pain meds and that the morphine probably wouldn't work. They quit giving me morphine and used Demerol. The Demerol worked.
The damage the doctor was waiting to discover was foot drop on my right foot. After the surgery I was unable to walk. The doctor was really upset that he the caused foot drop. Now my bad leg (left) was my good leg and good leg (right) became the bad one. I couldn't feel my feet and when you squeezed my right big toe, it felt like my little toe was being squeezed. My right calf was hypersensitive also my waist and I was burning from the waist down. On the sixth day I was barely walking with a walker and on the seventh day I realized I wasn't going to walk on my own without serious help. After asking the neurosurgeon for it he decided I was a perfect candidate to go to rehab.
The HMO wanted to send me to a rehab center 25 miles away. That wasn't a good option with my wife working and a 16-year-old son with a brand new driver's licence; it would put a strain on the whole family. In addition, the traffic is horrendous trying to get there. It would take an hour on a good day to get there. The neurosurgeon fought the HMO to have me go to the rehab center at the hospital that I was at and won!
Because I hadn't had a bowel movement since the surgery that was one of the first things they worked on in rehab. It wasn't until a nurse said "it was normal for an incomplete paraplegic to have bowel problems" that we finally understood what we were up against. No one ever told us or used the term paraplegic. We just thought I was "weak." Our bubble burst!
In rehab I learned how to walk with forearm crutches, use a wheelchair and how to take care of myself. It was hard for me to start to void my bladder and I couldn't feel anything during a bowel movement (didn't know when I was done) and couldn't distinguish between gas and a bowel movement. I was lucky that I didn't need to cath. my self or do a bowel program. I couldn't believe this was happening to me! I walked into the hospital and when I left it was in a wheelchair. All my friends knew this would happen but were afraid to tell me because I was so positive and optimistic this operation would correct all my problems. My best friend was just crushed to see me, to go from a somewhat normal, able-bodied person to an incomplete paraplegic. He came and saw me one time when I was in rehab and that was it. He couldn't take seeing me in the wheelchair.
I was in the rehab center for 14 days, a total of 21 days in the hospital. The neurosurgeon wanted to wait until I was stronger before he would operate again. I was almost walking with a cane for short distances and was working. In May all the pain was coming back so we decided to do the operation. One thing my neurosurgeon said was that they could get a reading from my left foot to my brain before my first surgery using an evoke test. The neurosurgeon promised me I wouldn't lose any strength (here we go with "weak" and "strong" again!) and he would remove the entire tumor. After the operation I once again couldn't walk. I had all the strength but didn't know where my legs were. He was able to remove the entire tumor and put the shunt in but during the process I had lost my sensory nerves from the waist down. I went back to rehab. Now left leg was my bad leg and my right leg was my good leg with the exception of foot drop. My right calf wasn't hypersensitive but my waist still was. The burning from the waist down was still there.
In rehab they couldn't get the foley out. I had to go to radiology and with the use of a cat scan they put a needle into my bladder and popped the foley. A piece of the foley remained in my bladder and a cystoscopy was used to remove it. I was in rehab for 15 days. I was taught again how to walk with forearm crutches, use a wheelchair, and take care of my self. It seemed this time it took longer to recover.
In December of 1994 I was getting worse. It seemed like work was zapping all my strength. All the original symptoms were back. I was working full time. The neurosurgeon said maybe cutting back to half day at office and half day at home would help. The MRI still showed a small syrinx between C-5 to C-6 and T-5 to T-7. In February, the neurosurgeon said I had some radiographic improvement and no signs of a tumor. I felt I was getting worse and work was making too many demands on me. I was still working half day in morning at office but the half day at home was becoming more than that. I was the project manager and it seemed that late in the day they always need a report the following morning. I would work till 10 to 11 o'clock at night just to get it ready for the next day. I went back to the neurosurgeon and we both agreed I should go on disability. My supervisor was also in agreement with it. I was lucky to have Long Term Disability insurance.
At this point I was still in pain and was starting to lose the ability to walk with crutches. I started to have numbness in my face on the left side. In December of 1996, my neurosurgeon ordered a cervical MRI. He felt the syrinx was too small to operate on. I then told him I would like a second opinion. He agreed.
So in January 1996, I called Patricia at ASAP and she gave me Dr. Milhorat's number. I called and his assistant said to get all my MRI's, reports and doctor's notes and mail them to him. In February of 1996, Dr. Milhorat called me at home and gave me recommendations, one of which was to go see Dr. Green in Miami. In May of 1996, I finally got to go see Dr. Green. He ordered a thoracic Cine MRI. My HMO wanted the Cine MRI done locally. After many phone calls with places that do MRI's, we discovered Miami was the only place that could do it. So I had it done on the day of my appointment with Dr. Green. He discovered my spinal cord was tethered. When I asked him how that happened he said that one reason was because I laid on my back after both surgeries causing the spinal cord to fall against the skin of my back. When I told him about my neck, he then ordered a Cine MRI of the whole spine. He wanted to explore the laminectomies from T-8 to L-1, untether the cord and cauda equina, perform an expansile duraplasty and remove the shunt. He said he could operate that Thursday. Because of all the hassles my HMO gave me, I said we had to wait for it to be approved. He said the syrinx from C-5 to C-6 would go down when the CSF flow was restored. He also said that my symptoms would not improve but the operation would stop my deterioration. He said I probably wouldn't need to go to rehab, would only be in the hospital for seven days, and my wife could drive me five hours back to St. Petersburg after that seven days without a lot of trouble! I finally got the approval in June and I was operated on.
He was unable to remove the shunt because of scare tissue but was able to unblock the shunt. He did untether the spinal cord and cauda equina from L-1 to T-8 but discovered the spinal cord was tethered below L-1. He didn't untether the spinal cord below L-1 because it was too risky. Once again I had to go to rehab to learn to walk again. I was in rehab for seven days. In rehab I met a man with the same thing (tumor) that I had. Eight years ago he had his tumor removed and radiation treatments. Now the tumor had grown back and because he maxed out his radiation he was unable to have more radiation. The only option was surgery. They were unable to get the entire tumor. So his situation is up in the air. I was lucky that the first neurosurgeon was able to get the entire tumor and I didn't need radiation treatment.
When I called to Miami because the pain was back the nurse looked at my file and said my spinal cord was a mess. I guess she realized what she said because she quickly said she was joking. She talked to the doctor and they raised my Neuronton intake.
In October of 1997, all the symptoms were back plus my left arm and hand were going numb and I was getting stiff necks. The neurologist ordered a cervical MRI and an evoke tests on my hands and arms. The MRI showed an improvement on the syrinx. The evoke test showed the nerves were good from my hand to my shoulder but were not good from shoulder to my brain. He thought that maybe because my syrinx was improving that the numbness in my arm and hand was a good sign. He prescribed 150 mg of Doxepin to help with the pain and burning. That seemed to help but still had the pain in my back and chest. The burning wasn't as bad but still was worse if I stood, walked or sat upright for more than 15 minutes. The side effects of the Doxepin were dry mouth, weight gain, loss of feeling to hot and cold and hard to start to urinate. I told the doctor this and he asked "do the benefits out weigh the side effects?". Yes, I was getting some benefits from the drug, so I decided to keep taking it.
In May of 1998, pain, stiff neck and numbness in left arm and hand was getting worse. The neurologist ordered a cervical and thoracic MRI. The results were the syrinx in my neck was worse. He suggested that I call Dr. Green in Miami. I did and sent my MRI's down to him. They had a conference and decided the risk was greater than the benefits and I should wait until it gets worse. Dr. Green referred me back to the neurologist. The neurologist didn't know what to do. I told him I wanted to quit the Doxepin because the side effects were greater than the benefits. He cut my prescription in half. In February of 1998, I quit taking the Doxepin. I lasted a week, the pain, burning, spasms and lack of sleep were so severe that I had to go back on Doxepin.
Today, July 26, 1998, all my symptoms are back. I am able to walk short distances with forearm crutches (makes the pain and spasms worse), drive with hand controls, trouble starting to void but once I start I void the bladder fully, still sexually dysfunctional and have bowel movements without a bowel program (every seven days I have a bowel movement). I am still hardheaded and try to do what I use to do and pay the price for that in pain (sometimes takes me a week to get over it). I am better in the morning once I get going, but going out to dinner late at night is usually out of the question. In my case, I am unable to participate in a lot of action activities because it aggravates the pain and burning. Just sitting in an upright position or standing aggravates the pain and burning. I put pneumatic wheels on my wheel chair because just running over the cracks on sidewalks aggravated the pain and burning. I also find it hard to describe the type of pain and burning so people understand what I am going through. That is why the ASAP list server is so great. Everyone on the list has some of the same symptoms and we can relate. When I meet other very active handicap people that do not have SM, they don't understand why I don't participate in their organizations. I would love to but because of the above problems it makes it impossible.
In one year, I went from a rising young executive to being disabled and unable to work. Our family has made sacrifices and discovered strength we didn't know we capable of. My oldest son went to a junior college for two years because he wanted to stay at home to see how I was going to do instead of going away to a university. My wife has to do things on her own. She is very understanding. With her and my sons' support, it has helped me get through this. My youngest son calls me "tough guy". I don't know if it is because I am hard on him (teenager) or he is impressed that I am able to keep going with all that has happened. We have learned to find humor where we can...like 'Let's take dad to the mall!!! We get to park in the first spot!' or my wife doesn't yell about the toilet seat being left up anymore...I sit like she does! It's better than crying.
My wife and I have been married 23 years, our kids aren't kids anymore but are still "good", I haven't worked at a job for 3 years, my challenges today are completely different. We take one day at a time. It's not what we planned, it's not what we hoped for...but....we finally found out what that "one little problem" was.
|
