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Dutch girl
07-07-2005, 03:10 AM
Hello. I'm new to this site. I am a 55 year old woman with a severe Kyphosis curvature. I can't even tell you how many degrees, but it's severe. My mother discovered that one shoulder blade was higher than the other when I was 10 years old back in 1960. The rounds of doctors and hospitals began. I wore a brace for a while, but it kept breaking and had to be sent away for weeks at a time for repair. Surgery was suggested when I was 13 but for various reasons I didn't have any operation. So I grew -- crooked. I'm only 4'11", but if I were straight I would be about 5'4" or 5'5" so that gives you an indication of the amount of curve. It begins also quite high up, just after my neck. Inspite of the curvature, I have lived my life to the fullest possible measure. I was never intimidated by how I look. I traveled after I graduated, met a wonderful Dutch man and moved to Holland to marry him. We're still together and have a good life. I still work 4 days a week as a secretary. At times I have lower back pain, but it's nothing to write home about. When I get overly tired, my hump sometimes aches. Because of the curve, I only have 43% of my lung capacity and in 2002 had to go on to low dosage of oxygen at night. Before then I never really had any trouble with breathing. Unfortunately, my weight got out of control these past few years, so I am working on getting that back down which I'm sure will help. My lung specialist keeps tabs on this. One of the reasons I didn't have the surgery was that the doctors at that time could not guarantee that only one operation would be necessary. And now that I have read some of the stories on this site, I see that others have sometimes had to endure more than one surgery. Each person must, of course, decide for him or herself what he/she wants to do. What the future holds for me in relation to my scoliosis, I don't know, but so far I feel very fortunate to have been able to do all that I've wanted to do with very little hindrance or pain. I'm hoping to retire in a couple of years to do some of the other things still on my list!

Amazed
07-09-2005, 02:07 AM
Hello You sound just like what I needed -someone else out there that is still hanging on to whatever they have and keeping focused on getting by. I honestly don't think that surgery could do much for us tired old crunched up oldies. I am on O2 all the time and I hate being tethered to a machine but it beats not breathing. I have had a Bipap for a couple months and we just couln't sort it out to do any good. I was sleeping about 18 hours a day and waking up with killer headaches - the Pulmonologist said he didn't no what else to do so its gone. I 'm also looking for a new Pulmonologist too.

Dutch girl
07-09-2005, 02:12 PM
Dear Amazed: I certainly hope you find the right doctor. I use an oxygen concentrator. It pulls in just ordinary air, then filters it and sends me 95% oxygen through the tube. I just wear the small canule -- the two little things at the base of the nose and hook the tubing behind my ears and down under my chin a plastic piece then holds it in place. I flew to the US in 2003 to visit my sister. I was able to arrange to have an oxygen concentrator ready and waiting for me when I arrived at my hotel. Then the next day we put it in the car we had rented and drove to my sister's home where I then used it during our 3-week visit. If you search the web, you'll find all kinds of O2 equipment that may be able to give you more freedom. Good luck to you.