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My life with my current Medical Problems (since 5/02/03)
Most of these symptoms and problems I have had continuously since my back operation unless the date is given as when the new symptoms started. Indiana back surgeons are trying to tell me that they have never seen anyone with my symptoms and act like I am making them up. In the past month, I have met several women at rehab that do have the same symptoms as I do - including the inability to sit. One was a patient of the neurosurgeon from a year ago. On 8/12/04, I met a nurse with the same symptoms as I do with disk deterioration at L5-S1 and she too has done research on the internet and is seeking the advise of medical specialists before she has the disk replaced. Highly suspicious of the information given to me by the Indiana back surgeons and having my medical condition basically ignored, on 5/02/04, after a year of extreme pain, becoming more and more incapacitated, I started doing research on the internet by doing a search of my symptoms. I found the closest definition of my medical condition is cauda equina syndrome - a very painful, embarrassing, serious, and debilitating condition. I then asked all the doctors I had been seeing if I did have this condition. As usual, I did get a serious answer from all except the Indiana back surgeons. Unfortunately this condition needs surgery for correction or apparently you have it forever. My Indiana back surgeons ignore the question and switch topics.
1) Muscle spasm and involuntarily contracted muscles in coccyx area, buttocks, anus, perineum, and vaginal area. Burning pain. Line of pain around the top of each leg at groin area. Touching these areas makes the spasms worse. Touchiness is worse on the left side. This has resulted in gynecological, urinary, and bowel problems. Can't touch left side of body from waist down.
2) Coccyx pulls to the left side. It has been straightened by Osteopaths but after lying down or sitting, it shifts back again. Sitting in a normal chair is impossible as the pain and spasms become so severe, I can not walk very well at all. I can sit on a toilet seat. When I can not walk very well, if I sit on a toilet seat for a few minutes, I can then walk better. Hence I go to the bathroom a lot just so I can walk better. Sitting makes spasms worse down back of legs. Muscle in middle of each cushion down middle of leg seems to be pinched or pulled. Sitting and relaxing in a bath tub is impossible so showers are substituted.
3) Lying down on my back and putting pressure on the sacrum, buttocks, and lumbar regions causes the spasms to be even more worse than sitting. Severe pain and spasms shoot down the sides of the hips diagonally, down the sides of the legs angling to the inside thighs. It is a sharp electric needle type pain that has me waking up screaming in agony. Once this has happened, it causes something to happen to the thigh muscles and now they hurt with the same burning, electric type pain as I had in the genital and coccyx area. The pain is following nerve paths. My thighs are now numb from the crotch down past the knees. Again the left side is worse than the right. Even touching my thighs is now unbearable. In September 2003, the left leg became damaged in this way. In April 2004, the right leg became damaged in this way. The neurological damage is accumulative. The pain just keeps continuing down the nerve paths. It seems impossible to reverse this damage or to stop it if I want to lie down to sleep. Neither ice or massage will return a normal feeling to thighs - seems to make it worse in fact. Thighs are hot to touch - like the nerves are burning.
4) As I can not turn my feet inward as muscle spasms or charley horses freeze my foot in this position. Right foot does it more than the left foot. It did it in the hospital several days after the operation and again several days after I came home from the hospital., My visiting nurses wrapped the ankle for me as I thought it was just a sprained ankle. Now I know better. On 8/12/04, the right ankle did it again when I was in the pool at rehab. This is a very alarming problem as it may mean total paralysis of my legs and I may lose the ability to walk totally. It is very painful when these muscles freeze in this position. Walking is then totally impossible to do. Heel pain is worse on the left foot. Pain is worse on little toe on left foot and it is worse in the great toe on the right foot.
5) Walking very far is very difficult because of sciatic pain which gets worse as my lower spine shifts in the lumbar area. Sharp stabbing electric pain eventually makes me stop walking and I have to sit down until is stops. I am limping badly by the end of the day and cannot put very much weight on the left leg. Sometimes spasms are so severe that I cannot even straighten out the left leg. Spasms go down back of legs first and then down front of legs. Sharp burning pain.
6) Sleeping is next to impossible. For the six months after the operation, I sleep maybe 1-2 hours a day. Now I sleep maybe 2-4 hours at a time. Sometimes it takes me 3-4 hours to even fall asleep. Then I wake up after an hour and repeat the pattern. To sleep 6-8 hours, I have to try to do it over a 12-15 hour period. I usually sleep 1 hour at a time - having to move constantly... Obviously after 15 months of this pattern, I am exhausted and sleep deprived.
7) My "daytime symptoms" grow worse as the day progresses. My "nighttime symptoms" also become worse the longer I remain lying down and this neurological damage is accumulative and apparently irreversible. In short, I have a failed operation that has resulted in a damaged spinal cord. This in turn is damaging the nerves and muscles from the waist down. I cannot sit, lit down, or walk because of the above e symptoms. As of yet, no doctor can pinpoint why this is happening. I find that very hard to believe. There has to be damage to the spinal nerves in the lumbar and sacrum regions. My body is not healing. Probably because I cannot lie down and get restorative sleep. Cannot stand very long. Have to rotate positions constantly.
8) Some doctors have stated that I am not coping well with my medical problems. The truth is I am not coping well with doctors that tell me that nothing is wrong with me and will not try to diagnose what IS wrong so we can correct it and I can get my life back. Something is wrong that needs to be corrected or I would not be experiencing these horrendous symptoms. It is very hard to keep up my strength when I can barely move.
9) The operation has certainly affected my 1969 whiplash injury. January 3, 2003, I injured my coccyx and sacrum when I fell on top of a grocery cart. This surgery very definitely made this injury worse. I will not have any more invasive procedures by urologists, gynecologists, or back surgeons until I know what is wrong with me and it is corrected. My current medical condition is unacceptable and I know that these doctors would not put up with this for 5 minutes if this was their body and this was happening to them. Not would they let any doctor tell them that their wife, mother, or daughter had to put up with this kind of life.