Ok so I just recently went to my clinic with all of my specialists and they want to help me with my bladder issues and I’ve tried self catheterizing myself in the past and now they’re offering me a port surgery to cath through my bellybutton area. Does anyone have this procedure and can you tell me the pros and cons of it?
Has anyone had a spinal injection to treat their back pain? If so, how did it go? Did it work for you?
Hey everyone! I’m hope I’m 18 and have caudal regression syndrome but it’s similar to spina bifida! But does anyone do wheelchair racing? I’m having some pain from working out and want to know how y’all manage the pain :)
Anyone else try to avoid telling others what your condition is for fear they will look it up and see the absolute worst case scenario? It’s clear I don’t walk like others and when asked I just say birth defect, No one but my family knows I have SB. How do you guys handle this question?
Hey I’m cheyenne stires, I’m 24 years old and I have spina bifida with hydrocephalus, I also have type 1 diabetes and I’m on dialysis 3 days a week for end stage kidney failure, I have want some friends that go through all or most of the same stuff I do!! Other then muscle relaxers is there any other therapy that can help with chronic pain???
The significance of online communities lies in the emotional support and understanding they provide, empowering patients to express their concerns, fears, and triumphs without fear of judgment. Such platforms foster a sense of belonging and camaraderie, helping patients navigate the complexities of their conditions and treatment options.
Anxiety (Including GAD)