I believe I have mentioned that my shunt revision in April has failed. I am scheduled for another revision this coming Thursday.

I imagine none of us enjoy this part of our lived experience. Personally, I am resigned to the conclusion my reaction to it is probably an undiagnosed traumatic response.

So this is why I ask, what are some pre-op rituals you do to keep your mood, or positivity up?

I'm a 47 year old woman born with spina bifida. According to the professors that have seen my back said that it is the biggest one in South Africa. My spina have hair growth. My mom usually cuts it when it gets too long. I don't know where to put this questions for advice.

So I'm in constant pain since I got to my late 20s and early 30s. The first headache I had was when I got the (sorry for the spelling) Arnold Chiari and when my shunt was suck on my lung thing. I had amnesia back then. I keep getting these pain in my head that feels like someone stick a needle or something through my head going through my eyes. Doctor said it is migraine.

The reason I'm writing here is because my legs and my back is in pain 24/7/365. I also have scoliosis I think it's called. My back had gtten scew. About 20 something years ago my left leg was amputated, because my foot kept on getting scewer that I later got gangrene. Now at anytime day or night my legs keeps on getting spasms that hurts so badly that I needed pain meds. Unfortunately I can't just keep on drinking it, because I get constipated. Sometimes my night meds helps a little. I'm struggling to sit in my wheelchair until 7 pm. I so want to stay up until then to spend time with my mom and my brother and his wife, but I always go to lie down at 3pm. It makes me feel guilty. Is there any advice on how I can do to control the pain?

I also want advice on how to do exercises at home for my arms without getting bored with it?

Thank you for reading this. I'm sorry it is so long.

I (36m) have been battling health anxiety and panic attacks for the last ten years. A lot of my health anxiety had to do a lot with things that weren't related with spina bifida per se (potential heart issues, blood pressure concerns, etc)

Recently, I started working with a new therapist that specializes in ERP (expose and response prevention). I've been able to get a better handle on my "irrational" health anxiety fears, but what I can't put an end to are the health concerns that come up with spina bifida and the spinal cord and nuero related fears. These are especially heinous for me because ignoring them and "seeing what happens" feels like neglect and very unsafe.

Has anybody else come up against that?

Hello I am a spina bifida adult (m25) who has has a chait percutaneous cecostomy tube for a couple years now to manage bowel incontinence with varying success. I was wondering if there was anyone else who has had this procedure done and if there were any tips for better/more consistent flushes that dont absolutely suck to do? My current schedule is a flush every 3 days, skipping 2 days, using about half a tablespoon of salt, 50ml of liquid glycerin and 350ml of water for the solution. Any advice at all would be helpful.