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Connect with others with Severe Scoliosis + Restrictive Lung Disease
Hi,
I'd like to connect with others who have severe scoliosis that has caused Restrictive Lung Disease.
My scoliosis curves are in the 65/50 degree range and a Lung CT scan showed restrictive lung disease, trachea restriction and severe air trapping. I'm in my 50's, and wore a Boston Back Brace as a teen in the 1980's when my curves were under 40 degrees.
I've been lucky to have minimal pain, in part thanks to yoga and chiropractic care. My shortness of breath and months long bouts of pneumonia or bronchitis with each common cold has been a problem for decades. My asthma and allergies are mild and well controlled.
My doctors in Oregon only feel comfortable within their area of specialty. The pulmonologist cannot talk about how my spine curvature is negatively affecting my lungs. The orthopedic surgeons will not look at my Lung CT scan. They say that until my curvature reaches 90 degrees, my lungs will not be negatively affected. Adult corrective spinal fusions are recommended on the basis of severe pain only.
I know this medical combo isn't very common, but being in touch with others who likewise have severe scoliosis and restrictive lung disease would be really helpful.
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Great info that I will have at my appointment tomorrow with the pain doctor. Especially the drug you mentioned that helps with the weaning off of the morphine. Really appreciate the info.
Thanks again,
Dave
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1 Reaction3986,
I really appreciate the information you provided. My doctor recommended Tymlos for three months with daily injections. Then Fosomaz for six months. He won't schedule the surgery now until next spring. I don't think I am going to be able to wait that long for the surgery. The beneifit of pre-medical treatment like evenity or tymlos does improve the success rate of the surgery by a marginal 5%. But that study was focused on patients diagnosed with osteoporosis. I don't have osteoporosis, in fact I only show a mild presence of osteopenia that is -1 on the scale that places it into the category of osteopenia.
This has been a struggle for me. I understand the logic behind a pre-surgery medical plan, but at the same time, there are side effects that come with it and my dexa scan and Houndsfield measurement were good... not over the top excellent like a 29 year old would have, but certainly not in a category of crumbling bone.
You are correct in saying that the medicine is expensive and it is not covered by insurance unless you are diagnosed with osteoporosis. The doctor I went to referred me to an orthopedic center that offered to provide the tymlos to me at no charge, as a sample purchase from the pharmacutical company. You might want to ask the endocrinologist if they could offer it to you a sample.
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2 ReactionsHi Dave, Glad I was able to help. It will be interesting to see what the Pain Management Specialist says.
Hi Nadine,
Well my first visit with my new pain doctor went perfect. He was easy to talk to, answered my question with caring and had offered a plan on how “we” will proceed. I really mean, the “team” has it’s referred to is spot on. And the way that they communicate with each other makes one feel at ease, that you have a team that’s working to make you better. He did say that I have an incredible amount going on with my back. It’s just an amazing feeling knowing that after 34 years of dealing with incredible pain, that am heading in the right direction. Because of the years of being on the morphine pump and opiates it will be a challenge, but he said that we will get there.
Take care🙏🙏Dave
Hello,
I will definitely get back to you once the doctor finds out what the insurance is willing to cover. Hopefully they do for there’s way I could afford a treatment of either drugs that they recommend.
Take care🙏🙏
If your dexa scan revealed osteoporosis, you may be able to get some help with the insurance. You might want to visit the "Osteoporosis & Bone Health (Support Group) " here on the May Clinic forums page.
Their is a lot of information about all treatments for osteoporosis there that I found helpful.
Hi Dave, I am happy to hear that you had such great interaction and found a team that will guide and support your pain management. 😊Not only do you have Team Dave you have cheerleaders here on the blog!
Best Wishes! Nadine🙏🙏
Is the pain management at Mayo? If so, who? Initially, I may be seeing one there.
Hi Nadine,
Dr. Casey Butler at Mayo in Eau Claire. Who ever you see, you will be receiving exceptional care. I came across this statement that on how am feeling after all my initial appointments….
“When feeling supported by exceptional hospital staff, you're likely to experience a sense of security, trust, and hope. This feeling can be attributed to the knowledge that your well-being is being prioritized by competent and compassionate professionals, leading to reduced anxiety and a greater belief in the success of your treatment.”
And also the great individuals on this site sharing their experiences and information. Beautiful day here in upper Wisconsin, blue skies and 37 degrees. Take care 😊🙏
Thanks, Dave.
After reading the quote, it reinforces that I just need to relax and know that all will be well.
You, Take Care, too! 🙏🙏
Hi Nadine,
That’s very true. And all will turn out great!! After the recovery time, life will be “amazing fun”! And yes all will be great for you!! 😊🙏