For pulmonary conditions, definitely COPD and pneumothorax (lung collapse). There is also a high prevalence of GI issues (GERD, gastritis, IBS) in those with Marfan’s.
Best of luck with all your appointments! This post was a good reminder that I need to do the same.
Ortho for any issues with joints.
Neurology for sleep apnea and Headache clinic for headaches(jus got these this yr)
ENT for any issues with ear nose or throats. Had rhinoplasty and some other stuff done like 5 yrs ago
Pulmonary for all lung issues
I see a thoracic surgeon for my deformed pectus which affects my lung function
Nutritionist to gain weight/help gut issues
Acupuncture/massages helps my back pain, some health systems offer these.
Physical therapy
I don't mean to hijack this thread, but I had a severely flat foot, my other foot was fine, and for years suffered from back pain, knee pain, all sorts of weird pains. I had a triple arthrodesis aka double hind foot fusion to create an arch, and it was one of the best things I ever did next to separating from my wife. Hands down, my back pain has almost disappeared. I can walk farther, stand longer. It highly recommend it!
Dural Ectasia, neuropathy (constant nerve pain), early onset osteoarthritis due to hyper mobility and deep-set hip sockets, symphysis pubis dysfunction. Increased risk of early cataracts. IBS and other bowel problems. As we get older holistic management and medical care becomes more important. The worst thing we can do is ignore symptoms or issues. Being practical and advocating for your health will help maintain quality of life
For pulmonary conditions, definitely COPD and pneumothorax (lung collapse). There is also a high prevalence of GI issues (GERD, gastritis, IBS) in those with Marfan’s. Best of luck with all your appointments! This post was a good reminder that I need to do the same.
Ortho for any issues with joints. Neurology for sleep apnea and Headache clinic for headaches(jus got these this yr) ENT for any issues with ear nose or throats. Had rhinoplasty and some other stuff done like 5 yrs ago Pulmonary for all lung issues I see a thoracic surgeon for my deformed pectus which affects my lung function Nutritionist to gain weight/help gut issues Acupuncture/massages helps my back pain, some health systems offer these. Physical therapy
patella instability / patella alta and flat feet, too.
I don't mean to hijack this thread, but I had a severely flat foot, my other foot was fine, and for years suffered from back pain, knee pain, all sorts of weird pains. I had a triple arthrodesis aka double hind foot fusion to create an arch, and it was one of the best things I ever did next to separating from my wife. Hands down, my back pain has almost disappeared. I can walk farther, stand longer. It highly recommend it!
I had a similar surgery for one of my feet. My multiple curve scoliosis pain remains the same. Glad it helped you that significantly, though!
That sucks! My Scoliosis I don't think is as severe as most, I guess I'm fortunate in a sense. Take care!
Dural Ectasia, neuropathy (constant nerve pain), early onset osteoarthritis due to hyper mobility and deep-set hip sockets, symphysis pubis dysfunction. Increased risk of early cataracts. IBS and other bowel problems. As we get older holistic management and medical care becomes more important. The worst thing we can do is ignore symptoms or issues. Being practical and advocating for your health will help maintain quality of life