Lumbar Pseudomeningocele Recovery

Hello everyone,

I am a 29yo physical therapist who is currently going through the same thing as most of you and would like to share my story in the hopes of getting any insight on the recovery process. I will try to keep my story as brief as possible.

1 year ago, there was an incidental finding of Tethered Cord Syndrome, and surgical intervention was recommended which required opening the dura. Surgery went well, but unfortunately, a rare complication called pseudomeningocele developed in my lumbar region. I had a cyst the size of a soda can bulging out of my lowback which was filled with CSF. I was unable to lay on my back or bend due to severe pain that would shoot down my legs. I guess it was pressing on my nerve roots. The surgeon drained it with a needle (~220cc) every week. But it kept coming back. This happened for 2 months. Eventually, another surgery was scheduled to re-suture the dura, but miraculously the cyst went away on the day before surgery.

During this whole time I would have massive headaches when upright. For the first 2 months, I was bedridden. And then very gradually I was able to tolerate sitting upright or standing (1-2 hours/week). After about 3 months, I was able to go to work, although the headache was always there at 4-5/10. It is now nearing post-op 1 year, and the headache is still there.

I declined the 2nd surgery because the cyst went away which meant my body was self-recovering. I declined epidural blood patch because I didn't want any complications such as arachnoiditis. Or maybe I'm just too afraid because rare complications don't seem all that rare to me anymore. I know I must be still leaking because of the headache, but I never followed up to seek medical intervention because I just wanted to move on with my life (new grad PT at the time).

Every day have been a battle since my surgery. The headache pain isn't quite too physically debilitating to where I have to be flat 24/7, but it's just frustrating and mentally draining. I have a hard time concentrating, and I seem to get agitated more easily. I feel like I can never explain myself to my peers because I feel like they just wouldn't understand. Afterall, I LOOK perfectly normal to them. What they don't see is that I am fighting through pain every day just to keep up with doing all the normal things of daily life... all the things that must be done upright.

Since it is nearing my 1 year anniversary since the surgery, I am feeling more hopeless these days. I used to be active and went to the gym or played basketball every day. I have not been able to do any of this since my CSF leak because it actually makes the symptoms worse. I tried to self-prescribe low level exercises to myself... which all just made my symptoms worse. I also recently put a pause on working because I don't know if working is hindering the healing process or not.

Wondering if I should start seeing doctors again... maybe try the epidural blood patch?

Has anyone else try to wait it out and self-recover without medical intervention? How long did it take?

Thanks in advance for reading my story and sharing your input.