View Full Version : I am not sure what I have anymore

07-06-2005, 01:14 AM
I was born three weeks overdue. When I was brought home, I was unable to keep down most of my food. The opening to my stomach was practically sealed shut. Surgery was performed, but not without me nearly dieng due to the sudden discovery that I am allergic to pennicilin. As a child I suffered terrible leg pains, sometimes so bad that I would become temporarily paralysed and fall to the ground. My parents said it was growing pains. My father used to walk me around the kitchen table for hours on end until I the weight of exhaustion would overtake the pain. No doctor could tell my famiy what exactly wss the matter. The only tentative diagnosis I was given was that I had femoral antiversion and compensatory pronation of duct - basically, a sacrum/upper leg problem. I had terrible allergies as I child, particularly to pollen. The damp weather of Scotland did not help this either. While living in Canada was put on a program of sometimes twice weekly injections, by this time food allergies being added to the list. At the age of ten, while temporarily living in America, I took my first drink. Also at this time, I was diagnosed with having flat feet and made to wear foor supports for a number of years. A year later, I was into to pot and some pills. For the next fifteen years I abused a whole variety of narcotics, peking at coccaine. When puberty started I felt the reverse of being granted development, for my stomach muscles completely failed me and I found myself sufering continuos bouts of lethargy and depression. Some friends sarted to notice that my back was often hunched, but not always. I, too, had noticed this strange phenomenon. At 17 I was told by a doctor that I should watch my back. That was the full extent of his diagnosis. Around this time I noticed that when sitting my upper back would dramatically curve to the right while my lower spine seemed to want to push right out of my lower left side, the result was that the vertical length of muscle supportig my lower back became severely bent. To this day it remains the same, and mwhenever I sit down my face wants to fall innto my stomach and my spine reaches so far back that it will painfully rub against the back of any chair. I can not sit crossed legged for any amount of time. In my early twenties, after years of trying every exercise I could and going back and forth between using and stopping drugs, I was told by a doctor that I had scoliosis. Subsequent exercises showed my curve to be about 18 to 2o degrees. No help was offered. I was told to try and exercise more, to gain muscle strength and mass. In the years since, I have kicked drugs and have been exercising like mad. I have gotten married and I am now living in Japan. But the pain and weakness has only increased. However, recently I went to Australia to visit a woman named Tina Ariston (she has posted on this site) in order to treat my scoliosis. Upon initial return, I felt a lot better, but soon I became despondant again for a variety of reasons. However, this last week I decided to take some x-rays and have a CT here in Japan and I have been told that my curve has almost completely corrected itself, apart from a very normal slight bend to the righ in the middle of my back. Good news? Yes and no. Why can I still not stand-up straight? Why does the severe curve still remain in my lower back when I sit down? Why do I still have terrible pains at the base of my left leg? Why does my left rib still protrude when I am laying down? Why am I still unable to develop any stomach muscles? How can I have no scoliosis and have all of this? Do I have scoliosis? Did I ever have it? What do I have? Why when I stand up does my stomach want to bullge forward to the point where I am made to look as if I'm pregnant? How can the doctor who did my recent CT tell me that I have very thick muscles and strong bone density when my torso is all flabby because I can't maintain correct posture - this depite all the exercises I do, both crdio and weight training? Despite the lentgh of this email, which I do apologise for, I am, believe it or not, at a loss for words.

07-06-2005, 03:55 PM

I have a ton of questions running through my mind that the medical community probably should have been asking over the years. Maybe they have, since I don't know your full situation.

Have you had a full-spine MRI? Some of your symptoms sound very similar to those in people who have spinal cord defects (i.e., leg pain and weakness, lower back pain, reduced muscle tone, fatigue, etc.). Have you seen a GI doc who specializes in swallowing difficulties? Have you had GI tests to determine if the formation of your esophagus, stomach and intestines are normal or malformed?

If your spine isn't curved (I'm not sure I would put much stock in someone other than a spine/scoliosis specialist, so you could have scoliosis) it could still be rotated. A rotated spine without a curve is not common. A rotation in the spine can cause the asymmetry you mentioned - not being balanced.

Here is a list of scoliosis specialists according to the Scoliosis Research Society website...

Kuniyoshi Abumi, MD Sapporo, Japan
Haruhito Aoki, MD Kawasaki, Japan
Yutaka Hiraizumi, MD PhD Tokyo, Japan
Kiyoshi Kaneda, MD Hokkaido, Japan
Noriaki Kawakami, MD Nagoya, Japan
Hiroshi Kitahara, MD Chiba-City, Japan
Kiyoshi Kumano, MD Kawasaki, Japan
Masafumi Machida, MD Tokyo, Japan
Manabu Matsumoto, MD Hyogo, Japan
Joji Mochida, MD, PhD Kanagawa, Japan
Taku Nakakohji, MD Tokyo, Japan
Yoshinori Nakata, MD Chiba, Japan
Yutaka Nohara, MD Koshigaya, Japan
Ritsu Shiba, MD Shizuoka City, Japan
Nobumasa Suzuki, MD Tokyo, Japan
Hiroshi Yamamoto, MD Kochi, Japan

Maybe a visit with a reputable scoliosis specialist, a reputable GI doc and a neuroSURGEON will help you answer your many questions. We are not medical professionals here - only parents and patients who can share experiences.

Good luck!