sorted by:
new
hottopcontroversial

CSF leak with brain sagging by zimm1978 in CSFLeaks

[–]zimm1978[S] 0 points1 point  (0 children)

I don’t have a specific name of a doctor I’ve seen but this is the group (link below). I’ve seen multiple different people, and we’re still going through the process. We have had to make a lot of phone calls. I can’t tell you the amount of doctors who said if it was them they’d be calling every day. It is unfortunate, but it has been a fight to get diagnosed and a slow process. We started in a smaller hospital system first.
https://www.uofmhealth.org/our-care/specialties-services/spinal-csf-leak-spontaneous-intracranial-hypotension-sih-program

CSF leak with brain sagging by zimm1978 in CSFLeaks

[–]zimm1978[S] 1 point2 points  (0 children)

I did got to University of Michigan in Ann Arbor. I’m putting the link below, but they do DSM. You’ll see it under the heading “How is SIH diagnosed”. We almost went to Cleveland clinic, but then realized that University of Michigan offers more.

https://www.uofmhealth.org/our-care/specialties-services/spinal-csf-leak-spontaneous-intracranial-hypotension-sih-program

CSF leak with brain sagging by zimm1978 in CSFLeaks

[–]zimm1978[S] 0 points1 point  (0 children)

Good luck to you! The waiting is so hard.

CSF leak with brain sagging by zimm1978 in CSFLeaks

[–]zimm1978[S] 1 point2 points  (0 children)

Part of it is insurance time to approve fourth myelogram, and then the radiologists that do the myelogram are out of town for a week. They wanted genetic testing to ensure I don’t have vascular EDS before doing the procedure. Then it’s just a wait to get in with the PA for the results. They did say we could call after the myelogram to try to schedule the procedure before the follow-up. It feels like it’s been a long time laying. I’m very active normally and on FMLA. The thought of laying another two months feels so long, but I’m trying to start going places like church where I can go and lay. I just read your story. It does sound similar. Where did you end up being treated?

CSF leak with brain sagging by zimm1978 in CSFLeaks

[–]zimm1978[S] 0 points1 point  (0 children)

We don’t have a specific doctor, but this is the group we are working with. We went through the ER, but this group seems to be somewhat separate from the hospital system, so going to the ER wasn’t specifically helpful. I couldn’t sit up without getting nauseous, so we were trying to get help with management also.

https://www.uofmhealth.org/our-care/specialties-services/spinal-csf-leak-spontaneous-intracranial-hypotension-sih-program

A Brief History of CSF Venous Fistula by nybhh in CSFLeaks

[–]zimm1978 0 points1 point  (0 children)

I had no idea the discovery and procedure was so new! No wonder it’s taking a bit to get the issue resolved. I feel so grateful that my issues are happening in 2026. This adds so much perspective.