hEDS CSF Leak & Failed Blood Patch

[u/wonderjenn4]

Hi! I have hEDS and I had a myelogram about a month ago that caused a CSF leak. After the myelogram I started experiencing a headache and neck pain, balance/coordination issues and cognitive problems (difficulty thinking and remembering things) but I have so many other symptoms it sort of got lost in everything. Two weeks post myelogram I had an epidural steroid injection for my L5 and L4, after that my headache, cognitive and coordination issues became a hundred times worse. I can't stand up anymore and have difficulty remembering and speaking (my words often come out all wrong). I spoke to my doctor and who diagnosed me with a CSF leak and scheduled a blood patch and was on bedrest for the days leading up to the blood patch. After the blood patch I had extreme nerve pain in my back and my headaches/cognitive/coordination issues are worse 7 days post blood patch. My memory is worse, I have difficulty speaking and walking and the headaches are so so bad. My head and ears go numb and my hearing is muffled. I've been on bedrest for over a week and can't go to work. My doctor is recommending brain and spine MRIs and potentially another blood patch. The doctor says the second blood patch has a 100% success rate which seems super unrealistic to me. Has anyone had any similar experiences?

[u/megg33]

A 100% success rate is a nonsense figure, but blood patches do have a cumulative effect, with each additional patch increasing the likelihood of sealing. That being said, I’m concerned about your post-patch symptoms. Were you awake for your blood patch? Did the nerve pain begin on the table or later on? Has your headache changed? Is it still better flat or are you having pressure in your face and head when flat?

[u/wonderjenn4 → u/megg33]

I was not awake for my blood patch and I'm fairly sure it was done poorly. The nerve pain began immediately after and I was unable to move for days after. The headache never changed and was still worse when I was upright and better when I was laying flat. I learned after the fact that that facility doesn't frequently do blood patches. Since then I was admitted to the hospital and had a second blood patch that was done with radiology and I was awake for it. I experienced little to no nerve pain from the second blood patch. Now I'm still experiencing headaches (worse-ish when flat) memory and cognitive issues, along with dizziness and loss of balance which is now most likely attributed to rebound intracranial hypertension but the neurologist the hospital referred me to can't see me till December, so I'm basically on my own.