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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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That’s ok…Am Wisconsin
@3986 This is Dr. Fogelson talking about scoliosis.
https://medprofvideos.mayoclinic.org/videos/adult-scoliosis-treatment-options-at-mayo-clinic
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2 ReactionsHi 3986,
Congrats on finally getting the appt at Mayo.
Sounds like your bones are stronger than mine. At the recommendation of my endocrinologist, I have been doing daily injections of generic Forteo for over an year now.
My surgery is mid-may at Mayo Rochester.
Good luck to you and May we both fine relief soon.🙏
Hi,
Am hoping that my surgery can go a head in 6/7 months. I need to be weaned off my morphine pain pump first he said because there have been issues with infections with the pain pumps. And then my bones. It’s just that the pain level has become to much. I continue with the good thoughts, guides imagery, breathing and several other ways to help deal with the mind. But.. I sure it will be out several months, but I can hope/pray. Take care, thoughts and prayers to you also
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2 Reactions3986,
I noticed your reply to @nlback22 mentioned taking bone building medication prior to surgery. Do you mind sharing if this was recommended by your spince specialist prior to scheduling surgery? What medication is being prescribed? I received a similar recomendation from a neurosurgeon that recommended corrective spine surgery to address scoliosis in my spine, but he is slowing the process down until I go on a medical treatment plan.
I would love to hear what you doctor has told you.
Dr Fogelson is very impressive
Can’t be refered from UK sadly
Hi 3986,
It sounds like you have learned ways to help you cope with the pain. Waiting this past year has been difficult, but in retrospect it goes more quickly thsn you can imagine.
Several medications, along with anti-inflammatories and tylenol, have helped me manage my pain.
Maybe you might want to discuss them with your doctors if you are not already on them.
I am taking Duloxetine 20 mg, an anti-depressant, although I am not depressed. I take it because it helps with, bone, muscle, and nerve pain. My Pain Doc and I experimented with various doses--30 mg. QD-(once a day), and 20 mg BID-(twice a day). I can stay on til surgery and afterwards.[The first week on this drug is difficult--brain fog and fatigue, but by day 6 it lessens and it continued to get better to where you don't experience any of that. ]
The other drug added to the mix is generic Lyrica- Pregabalin 25 Mg QD- at bedtime. It is for Nerve pain and it also seems to help a little with my back pain. I can continue til surgery and beyond if needed. (I could not tolerate the side effects of Gabapentin). This drug definitely increased my reduction in nerve pain!😊
My favorite drug is a Compounded Drug and must be purchased through a Compound Pharmacy--Low Dose Naltexone, commonly referred to as LDN. I take 4.5 mg at bedtime for Chronic Pain. It is used off-label.
At higher doses it is used to wean patients off of opiods. It is an opioid antagonist--I take 1/10th of that dose. Given that you are on morphine, whether this would be a benefit for you is definitely a question to be answered by your doctors. I love it because it helps and I don't experience any side effects. [At first it was covered by my Medicare Part D prescription plan but after 11 months they are now telling me they don't cover compound drugs. I will be picking up my refill today--I think a month supply will be around $60. ]
I will try to attach one LDN trial.
Good luck with it all. Keep in touch!
Nadine
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4 Reactionshttps://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/pdf/10067_2014_Article_2517.pdf
3986 and others--this is a link to one article on Low Dose Naltrexone
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2 ReactionsI believe I have a
Similar
Situation.i will write more later.
Severe migraine me
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2 ReactionsHello,
I was seen by a Neurosurgeon that specializes in Deformity Spine Surgery. And because of my low bone density scores he recommended
me be seen by a Endocrinologist. These are the drugs that were recommended (romosozumab and romosozumab. It would be a year regrettably before a surgery would be performed. The costs are out of the world, so it will be decided if I could afford one of them. And my window to afford one of them is pretty small. The Doctor will be submitting the request to the insurance company. Keep in touch…Take care
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