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| Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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03-07-2015, 08:44 AM
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So my knee MRI was negative for new injury. Cartilage loss at patellofemoral facet. Okay. So I can push through that pain...for the most part.
Then I get a call from the ortho office. Blood work was "not horrible" but Vitamin D level was extremely low...13. Wants me on Vit D (50,00 iu twice/week) and referral to endocrinologist. Okay. I can do the Vit D but why the endocrine referral??? I asked about the Dexa scan. She had to pull it up. Severe osteoporosis with an extremely high risk of fracture. Wow. So basically, I'm 48 with the bones of a 90 year old. Awesome. A search through my medical books, some enlisted help from an RN friend and we came up with hyperparathyroidism as the most likely culprit of all my ailments...well except the RSD...no studies linking that yet that we could find. If that is confirmed, essentially my timeline would look like this: Hyperparathyroid --> decreased Vit. D/increased release of calcium --> osteoporosis --> patella fracture --> peroneal nerve injury --> RSD So the osteoporosis can be reversed (albeit, slowly) with a parathyroidectomy. Surgery. On my neck. With a documented (decent) risk of unilateral laryngeal nerve damage, causing voice disturbances and difficulty swallowing. There's also a risk (on the lower side) of bilateral laryngeal nerve damage, causing breathing problems sometimes requiring tracheotomy. (Okay, not going to freak out on that one) My big concern (freak out) revolves around 'surgery' itself and the potential for spread. Then I add in the location of the surgery and major freak out ensues. Since I am just learning that my life has pretty much been falling apart for 5-10 years (incidentally, there are NO studies of anyone with hyperparathyroidism for 25 years or more because the effects of hyperparathyroidism contribute to ~20 year survival) and everything I have learned about RSD so far does not bode well for surgeries. Anyone have any experience/links/advice to prepare? I know I will not be doing anything surgically until after my daughters wedding next month, so I have a little time to prepare, and I know it's not a confirmed yet...but, after my son's major medical issues, I need to prepare for the worst while hoping for the best. Thank you in advance!!
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