In this presentation from our November 11, 2023, Bridging the Gap conference, members of our community share their thoughts on recovery after spinal CSF leak.
Transcript
Anna: Something they don’t tell you about recovery is that after you have relief, whether it be through a blood patch or another method, there’s still a lot to deal with. After my second blood patch, I felt a lot of really positive feelings. But I also felt anxious because life had been so uncertain and confusing for a very long time. I went to therapy to talk about the aftermath of all of this and needed to do a lot of healing. I had to constantly fight with insurance to receive medical care. I would say that dealing with the medical system itself was its own traumatic experience.
Asia: What no one tells you about recovery is that you will need to relearn your entire body and really know what your boundaries are, what you are able to do normally versus what you have to readjust to. Exercise used to be a really big part of my life pre-leak, and I feel like since I’ve been sealed, which has been about four years now, I still have a lot of PTSD, a lot of confusion around how to move forward in this new space.
Penelope: For six years, I’ve had my symptoms to a lesser or greater extent. Very, very rarely have I been without. Now after this third blood patch, I feel as if it’s worked. But the same old thing is, crops up: “How are you?” “Oh, I’m fine.” Um, and, “How are you?” “Oh, I’m, I’m not so good today.” And it’s alienating because I don’t know whether I’m up for the day and people who love me don’t know how to deal with that anymore. Um, it is very complicated.
Mike: Right when I was starting to get some normalcy again, I started leaking again, about nine months after, and I think after you go through such tumultuous up and downs and being sealed and getting your life back for a short period of time and then leaking again and then wondering if you’re going to ever get better and then here you go, you’re up again and work hard to get back again, you get frustrated.
Michal: Now we’re picking up the pieces in a way. The other day I went to pick up my kids from school. And I had a headache, just a normal headache. And I said to my, one of the girls, she wanted to invite a friend over. And I said to her, listen, I have a really bad headache. And I just want to go home. And she was hysterical, and she said, Are you going to have a vertigo now? Are you going to have… Are you going to have to go back and lie in bed?
Rita: I think as I’m going through recovery, like, we don’t know what that means, we don’t have enough, like, longterm data, it seems like. Sometimes what’s scary I think is, um, knowing like, is it, is it fixed? Are you sure? Is it fixed? Like, is this something new? Is this just lingering symptoms? Is, is my nervous system healing and that’s why I’m still experiencing something sometimes? Like, it’s hard, the unknown of why sometimes you’ll have different symptoms, even though you’ve had a successful treatment. Like, even though your brain MRI is now normal, why do I not feel normal sometimes? I think that’s, that’s difficult.
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