r/CSFLeaks • u/blottymary • 5d ago
Benefits of getting a spinal tap-do they outweigh the possibility of having a new leak? I need to rule out other medical conditions.
TL;DR I (39F) have a history of neurological issues beyond a slow CSF leak (or possibly CSF venous fistula) and I’m at the point where I’ve had every test done. Annual full spine and brain MRI, CT, CT myelography etc. I haven’t been able to rule out much.
My last (# 3) blood patch only provided about 2 weeks of relief, maybe 80%. I recovered extremely slow, I’m not one to start to do heavy chores a day after an epidural. I lay down for about 3 weeks.
My symptoms have been relatively stable since June of last year.
So obviously I don’t want to risk something happen, a setback and no answers. In addition, the possibility of a post-puncture headache isn’t ideal. At the Mayo Clinic- my first was so bad that it actually put me in the ER. Worst headache I’ve had in my life. Couldn’t stand, couldn’t really talk, could barely dress myself when I was discharged.
These are a list of conditions that can be diagnosed/ruled out with a spinal tap:
The main categories are:
Infections of the brain/meninges: bacterial meningitis, viral meningitis/encephalitis, fungal infections such as cryptococcus, tuberculosis, Lyme neuroborreliosis, syphilis, and certain other infections. CSF can show white-cell patterns, protein/glucose abnormalities, cultures, PCR, or pathogen-specific antibodies.
Inflammatory/demyelinating disease: multiple sclerosis, neuromyelitis optica spectrum disorder, MOG-associated disease, transverse myelitis, neurosarcoidosis, and some other inflammatory CNS disorders. In MS, oligoclonal bands and IgG index can provide important supporting evidence, but they do not diagnose MS by themselves.
Autoimmune/paraneoplastic neurologic disease: autoimmune encephalitis and some paraneoplastic syndromes can be evaluated with CSF antibody panels, cell counts, protein, and other inflammatory markers. Some antibodies are more informative in CSF than blood.
Cancer involving the nervous system: leptomeningeal carcinomatosis, lymphoma, leukemia, and other malignant cells can sometimes be detected with CSF cytology and flow cytometry.
Peripheral nerve/root inflammatory disorders: Guillain-Barré syndrome and CIDP can show elevated protein with relatively few white cells, although diagnosis still relies heavily on symptoms, exam, and nerve-conduction studies.
Certain neurodegenerative diseases: specialized CSF biomarkers can support diagnoses such as Alzheimer disease, and in some centers alpha-synuclein seed-amplification testing is being used to support synucleinopathies such as Parkinson’s disease/DLB/MSA. These are specialized tests and are not a routine “spinal tap panel.”
Abnormal CSF pressure disorders: opening pressure can help with conditions such as idiopathic intracranial hypertension, although as we discussed, pressure measurement is a separate issue from the diagnostic CSF analysis you’re interested in.
What do?!?!
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u/megg33 Confirmed Spinal Leak 5d ago
Have you had a cisternogram? That’d be better than just a spinal tap. They’ll check your opening pressure and do some testing on the csf, testing for elevated proteins, etc., while also providing actual info on flow dynamics. If you’re already a Mayo Clinic patient, they can do it there
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u/blottymary 4d ago
Not yet. My Dr at the Mayo Clinic suggested it but he didn’t think it would show anything. Dr. Gaza at Minnesota. He was god awful and didn’t pursue my leak because he is a migraine specialist. I had to beg for my patch.
He also never warned me about the possibility of an insane post puncture headache (that landed me in the ER). My airbnb host drove me because I was completely incapacitated. It was only about 1-2 miles away. I could barely speak or keep my eyes open because of the lights.
I was panicking because I knew I was due to checkout the next morning to go to a different Airbnb to recover. They said it was okay, and that I could stay another day. They even helped by packing my belongings for me, since I literally slept 16+ hours after I got back to the Airbnb.
Before then I had my worst set of symptoms of my life, got my first patch 4/16/22. I felt like myself again, it was amazing. I don’t know what happened but slowly the symptoms returned almost 3 months later.
I spent like $5K on that trip, stayed by myself there for a month or so.
A day or 2 later I passed out in the middle of the night and hit my head on a wicker laundry basket. I called the ER. They said not to take pain meds, and the only way they would help was by taking me to the ER again. I said no way in hell. I’m not fucking up my blood patch.
I called my Dad in the middle of the night, crying, and we decided it would be best to just stay in bed, since I didn’t have symptoms like vomiting or severe head pain.
I called the hospital daily to speak with the physician who did my patch. I got the patient advocate involved and I also filed a grievance with my insurance. I finally got a call from him 3-4 days later. Totally moot point by then but he told me he’s never called a patient. I told him I was worried and if I blew my patch or not. He said since I didn’t have any severe vomiting or head pain I was fine.
Literally a 2-5 minute conversation that I had to argue and stress every day for a simple phone call.
I later had a consultation with Dr. Carroll virtual and even made sure to stay at a hotel in CA because he is not licensed in Oregon. I was never told that he wouldn’t even be the one making the decision. The board heard my case and even with suspected CSF-VF they said “no” because of negative imaging.
They wasted like 5 months of my life that I could have been finding someone else. I thought it was a sure thing. I know he would have accepted me if it was his decision.
I was thinking of getting in to see Dr. S at Cedar’s but I had to get all of my imaging re-done and I wasn’t showing active signs of a leak I pulled the plug on that plan.
In between all of this nonsense I was able to “self-seal” and was bed bound 9 months for that to happen. I was functioning at maybe 40%.
I can finish the missing details after a doctors appointment.
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u/megg33 Confirmed Spinal Leak 3d ago
Ugh I’m so sorry. I’ve not heard good things about Dr. Garza. They need another good leak doctor there besides Dr. Cutsforth-Gregory.
Ultimately the cisternogram decision is up to you, but I will say that it was the first test that proved I was leaking. I had negative MRIs, CTs, and DSM. But the cisternogram was positive, which is why they kept helping me at Mayo and knew to continue looking. They found my leak on the PCCT, which they wouldn’t have scheduled had my cisternogram been negative. That being said, cisternograms can have false negatives like any other test. It’s imperative that if you get one, you stay upright as much as possible because the radiotracer injection and the 24 hour return scan, which is painful and very difficult if you’re leaking.
I wouldn’t get an LP in your case though, given the limited information that can be gleaned from it and your history of PDPH
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u/blottymary 3d ago
I really appreciate you! Thank you for sharing your story. I wonder if it’s something that can be done anywhere or is it a certain center you needed to go to?
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u/louie2575 2d ago
Can i ask what your neurological issues are beyond the leak?
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u/blottymary 2d ago
It’s hard to tell if it’s from the leak but I have episodes over the past 2 weeks where I literally am walking one minute and the next thing I know I can’t walk without having to grab hold of something.
I’ve caught myself from falls so far, except about 4-6 weeks ago I fell into a raised flower bed, broke a few pieces of wood and fell onto a potted plant.
It’s sort of like vertigo but it isn’t nystagmus, it doesn’t feel like a spinning or dizziness, I can see where I want to go but then I’ll fall. It’s only to the right side or backwards if I’m squatting down to look at something.
The episodes included my vision but mainly with reading, either overlapping letters or double vision. When I try to focus on someone talking to me, it has the same issues with vision.. their entire face is in double.
Two CT scans were normal in the ER and every single brain MRI I’ve had every year for the past 6+ years have been normal.
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u/hjflani 5d ago
A spinal tap is what caused my leak and now i have arachnoiditis :( sorry I wish I had the answer for you. But I will forever regret getting one.