Asking others about their scoliosis...

[loves to skate]

loves to skate

Would it be possible to just make friends with her first and then see what happens? She might then be the one to start asking you questions, or as you get to know each other better, I would think it would be easier to ask her questions about her back. Just a thought. Good luck.

[CHRIS WBS]

I went to a meeting here at work this morning and sat next to a woman who appeared to be in her 30s. Following the meeting I wanted so badly to ask her about her scoliosis but I just could not get myself to broach the subject with her. I have seen her a couple times in the past and someone mentioned that she can occasionally be seen using the treadmill in our fitness center. I have never seen anyone with such a serious deformity. She is completely bent over and has a huge hump on her back. I doubt if she even reaches four feet in height. I suspect though that she has more than just the scoliosis that is twisting her body. When you think you have it bad, just look around and you will always find someone who has it even worse.

[Wishing]

I am somewhat of mixed opinion regarding this matter. However, I think the intentions and empathy shine through. I know that even though I was very defensive over the years regarding my scoliosis, I think that I would have welcomed someone who was a fellow sufferer and had empathy with whom I could talk. It was such a lonely world and I stuffed so much pain inside. I had given up on treatments over the last 20 years as I thought none were out there and thought I have everything done that was possible. How wrong I was as scoliosis treatment continued to evolve and advance at a rapid pace and I didn't know it. If someone had approached me, I would have an empathetic person to talk to and also I may have learned alot about current treatments.

[Wishing]

Empathy and Feeling Bad about Feeling Bad

I read somewhere on this forum that someone shared about feeling bad about having scoliosis and then felt bad about feeling bad. I felt this way for so long, and it was a relief that someone else felt that way who understood. This was a tension and stress reliever as I realized that these feelings were normal. This kind of empathy really helps. It was then that I could look at my strengths and weaknesses and move on.

[CHRIS WBS]

What really surprises me is that the medical community in general apparently is not aware of the advancements and that treatment is available for adults. It was just a few years ago when I saw a new gynecologist who looked at me with horror when she learned that I have scoliosis. I never heard her say, “Do you know this can be treated?”

[Wishing]

Yes, Chris, I found that out the hard way. Over a period of 18 years, my internists rarely mentioned my scoliosis and only in passing. I guess they thought since I had been treated for it years and years ago, there was no need for further discussion. Even when I developed night time headaches and high blood pressure episodes which accompanied them and saw neurologists, they diagnosed cluster headaches, or benign hypnic headaches or vascular headaches. It was only after I wound up in the hospital two years ago for an episode of severe breathing problems when walking, was I diagnosed with severe restrictive lung disease. Eventually, my night time symptoms were due to severe breathing problems while sleeping, and I was started on a Bi-Pap at night with elimination of most of my symptoms and a major reduction in blood pressure medication. I had been treated all wrong for some years and could have progressed to pulmonary hypertension and severe heart problems if it had not been caught when it was. I though I was being treated by very competent internists and neurologists.
So, I found out how unaware many doctors are about scoliosis treatments and resultant problems from scoliosis. I had given up so much that I could not even bring myself to look up the word scoliosis on the internet. So, talking to people experiencing some similar issues can be very enlightening.

[sccrm08]

Last Year when I went to a surgeon and he said he could help me, i was so happy because for so many years I was told there was nothing they could do for adults. When I told my Sister in Law and Brother in Law that there was help out there for adults and I showed them my x-rays, He told me a story about a women he worked with and how bad her scoliosis was. She also thought there was no help for herself. My Brother in Law went to work the following week and went to talk to his co-worker and told her about me. She told my BIL she would see a Dr. again. As it turns out we both had the surgery around the same time and my BIL tells me she looks great. Some Adults don't realize there is help for our scoliosis.

[CherylPJ]

My greatest sources of information and solace have been other people that I dared talk to about scoliosis. I'd say, "Take a risk." Your classmate may be glad that you did. As someone said, you may also gain a friend. I have.

The responses to your question remind me again how great this Forum is.

[amae28]

I agree there is little knowledge in the general medical community about scoliosis and modern treatments for it. My family doctor, who diagnosed my scoliosis originally, thought that I was due for surgery when my curves were only in the 30's... "haven't you had surgery yet?!"... and my experiences with nurse practicioners have been even better- one who did my physical recently for my job at hospital asked me if i was able to work (I'm 20 with a curve in the 40's), and my sister, who had a physical for nursing school was told that she has mild kyphosis, which she does but it's nothing to get excited about- and she responded by saying that her sister has scoliosis- the nurse then proceeded to say, "oh no! That's terrible! How did she catch that!?". I almost died when she told me... like a virus or something. I just hope by the time I get to medical school things will have changed.

Cheryl- I see you are having your surgery with Dr. Lenke too! about 5 weeks after me! We'll have to share experiences.