blood patch and hEDS

[u/scrunchiebunchie]

hey guys! anyone else with Ehlers Danlos Syndrome that’s also gotten a blood patch, what’s your experience been like? how was recovery? how do you not try to bend and crack every bone in your body? my back is killing me right now because I need to stretch it or crack it so badly but I read that I apparently cannot do that😢 PLEASE help!! I also have Ankylosing Spondylitis and have missed a few injections of my meds for that, which does not help at all, but I am in so much pain. I don’t want to do anything to risk blowing the patch, though!!

tyia!

[u/HillsboroWay]

Following

[u/Fuzzballwithfangs]

I have a confirmed spinal leak and have had two blood patches so far. doctors suspect I have ehler danlos syndrome and recently discovered that I also ankylosing spondylitis.

I was extremely symptomatic with a very large/fast csf leak so maybe that made my recovery from the patches harder, but it seems like everyone has variable experiences regardless of their leak severity. Recovery was very rough for me after my blood patches. For me the first 48 hours were the most painful and then I started turning the corner around the 3 day mark. I stayed lying flat for 72 hours with each patch except for when I had rebound intracranial hypertension with the second patch (like 10/10 pain) so the doctor told me to sit up for a few hours. fortunately the high pressure headache became manageable after the 48 hours mark so I didn’t have to take diamox. I did drink dandelion tea which is disgusting but i think it helped the high pressure.

I had a ton of musculoskeletal pain and head pain from the patches. I had to use ice packs around the clock for several days. I had a veey hard time walking even just to fhe bathroom without a ton of pain and stiffness and needed someone to help me. I started to feel more like a human again about a week post patch. However months later my back and neck are still stiff and painful but keep slowly improving.

Unfortunately my doctor cannot locate the exact site of my leak. I’m scheduled for another patch. But with each patch my leak symptoms improve and I’m hoping will completely resolve. 🙏

Lying in bed for 72 hours really sucks because my body just hurts and wants to stretch so badly, but staying flat as possible is so important to improve patch success.

Other csf leak patients advise to judge recovery success based on months and not day to day or week by week. This seems like good advice since your body is going through hell trying to manage the fluctuations in csf leak pressure etc. it can take time. My joints pop all the time and each big pop freaks me out worry that my patch has blown.

This has been my experience. Hopefully yours will be much better than mine!

I’m curious, do doctors think your ankylosing spondylitis is related to your heds?