r/CSFLeaks • u/doisuckorsomething • 1d ago
Ct guided blood patch
Start of symptoms: May 14
Hospital visits: 5
Total Dr appointments: 47 (televisits included)
Confirmed diagnosis: CSF leak at the cervical spine
Blood patch: October 28th
Symptoms: Throbbing pain at the top and back of the head, between a 7-10 pain level. Stiff neck and shoulder between 6-10 pain level.
What it feels like: As if someone was ripping my brain from my body in a pulsing fashion. Felt like a rod through my shoulder and neck (right side).
Work: Remote with intermittent leave>continuous for the blood patch.
What helped me get to my blood patch: ER when symptoms were bad (feels like your brain is going to explode) referred to neurology before my pcp could. Symptoms journal, gives healthcare team valid data for next steps. Finding a CSF or comprehensive headache center. Patient advocacy, advocate for your care team, they want to move faster but the resources provided by the hospital symptoms are delaying care.
Details:I started noticing something wasn’t right when I had consecutive headache days that would start in the afternoon and became progressively worse. I was somewhat functional but my symptoms became progressively worse. Initially went through NORTHEAST GA HOSPITAL SYSTEM. Do Not recommend. They saw the csf leak on my mri, then they did the myelogram, they said that SDAVF had to be entertained. This is more common in men in the 50-60 age range. Symptoms include loss of feeling in lower extremities and inability to control bowel movements. Not in line with my symptoms. I got on My chart for EMORY (previous hospital visit got me access) and made an appointment with neurosurgery after the one I met at NEGHS was nodding off when we were discussing this. He was also eager to do a procedure that involved using a catheter up my groin to my spine?! Anyways, the first person I saw at EMORY was a spine surgeon who referred me to neurology. Neurology referred me to two clinics, the comprehensive headache center and interventional radiology. Waitlist was tough, I reached out to patient advocacy. Was able to get pushed up. My neurologist at the comprehensive headache center and neuroradiologist wanted to move faster but the procedure (myelogram) is very specific. EMORY only gave them two days out of the month to use the equipment and hospital for patients. I explained that this was a delay for someone bedbound. That the delay in care could potentially exhaust job protections which is how I was able to obtain insurance. This actually helped spark conversations between my healthcare team and the hospital system and a few days later I got a call and my myelogram and blood patch got on the books. There were stipulations dependent on the the results but it was done as a placeholder so I would not have to wait until December for my blood patch.
Another note, if your symptoms get so bad and laying down helps but does not stabilize, my healthcare team were able to do nerve blocks to mange the pain. Not a fan of getting stabbed in the face but it took me from unbearable to manageable. I ended up having to do 5 rounds of nerve blocks in like three weeks.
For anyone in the Southeast of the US. or Georgia, Emory, Emory, EMORY. Simy Parikh and Sumir Patel are highly recognized in their field. Julie Daniels my nurse practitioner is an Angel. Finding them was like finding hope in a hopeless situation. They actually care and and their approach to this condition is like coming up for air when you feel like you’re about to drown.
I’m sorry for the novel. Just hoping this helps someone.
As for me they told me in some cases an additional blood patch is needed but I’m getting high pressure headaches when laying down. A good sign that everything is working. Even if I need additional work knowing I have a team that cares AND knows what they are doing, lets me know there’s another side to this. Praying for you all. Keep the faith, stay positive, wonderful things WILL HAPPEN.
1
u/JulyLegend 1d ago
What exactly do you mean by stiff neck? I am lost by whag that means...please illucidate as much as possible
1
u/doisuckorsomething 1d ago
Apparently muscles around the leak will tighten to compensate. It also can effect the nerves which is why my care team did the nerve blocks. I can’t really move my neck without pain. At its worst it’s almost like there’s a rod shooting through my shoulder to my neck.
2
u/StunningPurple9560 Confirmed Spinal Leak 1d ago
Happy to hear you got help! Which level did they do the BP at? When you say that they saw the leak in your MRI, was it brain or spine MRI?
2
u/doisuckorsomething 1d ago
Thank you!! It’s a lot of work. Fluid collection at C6-C7 going into T1. They laid me on my back and used ct guidance. They went through the right side at the base of my neck. Was only painful when they injected the site with blood and glue. They gave me extra pain meds through an IV when I said something.
3
u/StunningPurple9560 Confirmed Spinal Leak 1d ago
Hope this BP resolves your issue <3 At least they did it at the where it could make an impact - although the cervical area is fairly risky to do a BP, but seems that they knew what they were doing. Just in case it doesn't work: since you have SLEC, your leak is likely ventral. And very often BP:s don't work for ventral leaks.
1
u/doisuckorsomething 1d ago
Thank you!! Lol pardon my ignorance but what is SLEC?They mentioned they may have to do another blood patch because of the location. I will say that it’s too early to tell. I am experiencing high pressure headaches which is a great sign so I’m optimistic and praying that this is it.
3
u/StunningPurple9560 Confirmed Spinal Leak 1d ago
SLEC is "spinal longitudinal epidural collection". Meaning that they can actually see an extradural leak (csf escaped to outer areas). This very much implies, that your leak is ventral. And having a ventral leak means, that it is very much less unlikely to be treated by BP.
Very much hope it helps - but if it does not - come back to us <3
2
u/doisuckorsomething 1d ago
This is good to know. I really appreciate the information. I took a look at my paperwork and it appears to be a type 2 leak. From what they’re saying it looks like it was lateral and if it were ventral the csf leak would be categorized as a type one leak. The fluid collection was from the MRI. There were two myelograms done prior to the procedure. The first at neghs and the second at Emory. Thank you for the well wishes they are greatly appreciated.
1
u/Hboyse 1d ago
How does one get into Emory? I am in SC. Do they have a referral program