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kemery
03-31-2004, 09:14 AM
Greetings.. This is my first time on the website. I'm interested to see if anyone else has respiratory problems because of the scoliosis.

I'm 48 with severe scoliosis. I've had 3 surgeries, at 11, 12 & 13 yrs old. I had rods but they were removed due to staff infection. My curve started at 156, but is now around 96.

I can't wear a bikini, but getting along well. The only problem, if you can call it that is that my lung capacity is only about 30%. I'm on a bi-pap s/t at night. Is anyone else out there dealing with respiratory problems...

Have a great day!!! What a great idea having this forum...

Kathy

Karen Ocker
03-31-2004, 04:21 PM
I am 61 and had revision surgery, instrumentation,and thoracoplasty 18 months ago. Before surgery I was very frightened by getting so easily out of breath just walking and talking. I was so crumpled that a full meal would cause shortness of breath! I had a stress test and the cardiologist said nothing was wrong with my heart;the scoliosis (80deg thoracic) was constricting my breathing. Being a nurse-anesthetist I could see what was down the pike for me and I didn't want it. I never smoked, am not overweight and do not have asthma. I tried all kinds of alternatives:hiking-could go just so far, hanging from a pole and Pilates. My lung function tests showed 30% loss off lung function and loss of lung tissue. I am now much better: curve down to ~30 deg ,I am working and I plan to visit Switzerland this spring. Last year went hiking in the Black Forest. It took a long time for my lung function to improve after surgery but now I am so grateful about it all.
Karen

mana22
04-14-2004, 01:20 AM
Yes I have respiratory problems. I have been told since my 30's that I have emphesema and also asthma but both might be false since the asthma has been attributed to the impingment on my left lung due to scoliosis. I am 62 and now I am degenerating with 3/4 of inch loss in 3 years and constant mild pain. Is there help that anyone know about? yoga? tai chi? anything but surgery? Thank you

Karen Ocker
04-14-2004, 08:32 AM
I tried walking longer distances but my curve kept increasing and I could not stop it and my breathing became worse and worse. I was chasing this thing and couldn't fix it! Nothing will stop it but surgery to reduce the curve and make more breathing room for the lungs. I also gained an inch in height. I also did Pilates-similar to Yoga. It did not help any longer. I actually became panicky with the breathing problems.

Unfortunately no one wants surgery but it sometimes is the only answer.
I have improved breathing now. In the right hands surgery is very successful - it gave me back my life.

Karen

mana22
04-14-2004, 10:06 AM
Thanks Karen. At what stage of curve did you elect surgery and how old were you? I just started to degenerate after age 60. My curve has basically been the same since age 13 until now and it is getting worse because I have osterporosis.

Karen Ocker
04-14-2004, 12:34 PM
Go back and read my previous posts.
Between age 56-60 I noticed progressive breathing difficulty. I also rapidly lost height.My personal physician recommended a stress test; it was normal. The cardiologist said my chest was compressed from scoliosis plus my heart was shifted. None of my doctors suggested anything could be done for me -especially when I was operated on in 1956. I went online and got info from the Scoliosis Research Society, NSF and a couple of other forums. Some of the un-moderated forums had ridiculous, scary, in-accurate info.about scoliosis.
I visited Dr. Boachie-Adjei in NYC who told me; it would get worse, he needed to take down my previous in-instrumented fusion but that i would do well. Three months later i went ahead.

At surgery(at age 60) my curves measured: cervical 30 deg/thoracic 80 deg/lumbar 40 deg. I did not want to get worse-I believed I was bad enough. In my case it was well worth it.
Karen

karen penelli
06-21-2004, 03:08 PM
karen i am a new member i am 61 and have a 55 degree curve i am also having trouble breathing my curve is in the thoracic is surgery possible i am going to a clinic in new york tommorrow tues any advice would be helpful thank you karen

Karen Ocker
06-25-2004, 02:55 AM
I sent you a private e-mail.

I just got back from a hiking trip in the Alps and Black Forest. It has been 22 months since my surgery and my breathing is much better than in the last few years just before my revision. Even our relatives there noticed the drastic improvement in posture and my endurance since the time before the surgery.
For me the surgery was a relative simple decision; I was getting worse and my breathing difficulty scared me.
I just turned 62.
Karen