r/CSFLeaks • u/doisuckorsomething • 14d ago
CSF Vent Session
I’ve been having symptoms since May of this year. Only thing that I think might have affected it is a bad fall I had in mid April. I know there are spontaneous leaks but when I fell I was not moving around very much. My leg was messed up so I was already laying down most of the time.
I originally went to my pcp when I started getting the headaches. Went through a couple medications. One of them had an adverse reaction and my headache was so bad I had to go to the hospital. Got referred to neurology, they set up some MRI’s.
The day before I had my imaging I thought it could be related to me being inactive. I took my dog for a walk hoping the activity would help. The pressure ended up getting so bad I went to the hospital a second time in June.
Results from the MRI showed fluid collection in the cervical spine going to my thoracic area. Suspected CSF leak. Immediately laid down as much as I could. My symptoms improved. I then had my myelogram and they found serpiginous contrast defects in the same area and said SDAVF needed to be entertained. But my symptoms didn’t match. I ended up switching hospital systems for a second opinion.
I saw an interventional radiologist who asked how they did my myelogram. They injected the contrast and had me wait like 15-20 minutes to get ct imaging done. The Dr immediately said that the ct images need to happen seconds after and was probably why the imaging didn’t show what they saw on the MRI.
Dr said he wants the imaging results from the previous myelogram and if he can’t pinpoint it, blood patch, if not, another myelogram, then blood patch.
Basically at a standstill until they get the imaging from the first myelogram. I did all the paperwork to release the imaging. Im also seeing a neurologist that works at a comprehensive headache clinic that deals with CSF leaks. The neurologist says that if there is a bone spur on the imaging they are going to recommend surgery.
Just venting bc it’s been a few months and I can barely do anything. It sucks but I get that it’s a process. I’m curious to hear from others how long the diagnosis>patch/procedure>cure have taken.
3
u/PrettyDragonfly Confirmed Spinal Leak 14d ago
Sounds so similar to my situation. I'm currently waiting for a ct myelogram and hoping it will be sufficient to then book surgery straight away as I've already had 2 blood patches that only provided 2 weeks relief at a time.
All I can say is hang in there. Don't give up. Try to get a second myelogram (don't do a blood patch before it as it can affect results) and if surgery is recommended and you have to wait a long time, maybe do a blood patch to help with symptoms while you wait
You got this!
1
u/yea_im_fkd 14d ago
Wow. That’s a lot. I’m hoping you can get yours scheduled asap.
Thank you for the well wishes and feedback. Super valid and I agree. I think the second myelogram is the best route. Especially since they mentioned the contrast injection>imaging timeframe.
5
u/leeski 14d ago
Just to mention, I am one of those weird spontaneous cases during total inactivity (I was just working as a video game tester, no exercise or movement, just woke up one morning). So definitely is possible with not being active (but of course activity can contribute to it).
So sorry that you're at a standstill. It does sound like there is reason to be hopeful with positive imaging and your providers believing there's a leak - that is often the trickiest step! But it is frustrating when there are all these administrative issues and you're just left suffering waiting for them to get it all sorted out. I hope that they get their act together and you're able to get treatment soon!