I was wondering what kind of doctors have done your spinal taps. I will be looking for a local one, as my NS is not familiar with the doctors here. I am sure my NS will tell me in his area who usually does them (radiologist, etc), but I might need more options...IE: a radiologist? a neurologist? an anasthesiologist?
I appreciate any and all responses, as well as what your experiences (good, bad, and ugly!) have been with a spinal tap.
thanks so much!
hi
its reccommended that you should not go for SPINAL TAPS, this can cause your tounsil to descend further, and cause more issues, with chiari as you know there are CSF issues, this can disrupt the flow,
My NS couldnt stress the high risks that are involved due to having this done, he also told me that if anyone wanted to touch me to ring him as it would cause great issues,
this is very danagerous. i cant stress enough, please be careful.
What are the reasons for having this done? are they testing for Autoimmune?
Do you also have other issues going on?
joelene
I have had Brain, cervical, and thoracic MRIs, a CINE MRI as well as neck x-rays. I have a right cerebellar tonsil that is 5-6.5 mm, depending on who reads it and a left one at 0mm. When the NS was going through my MRI, he noticed that the large ventricle (I totally forget what it is called right now)in the center of my brain was squished, indicating possible pseudotumor to him.
He ordered a C Reactive Protein test to check for inflammation and a Gluten Allergy test as possible causes for the brain inflammation. He said if those came out normal (which of course they did), then he wanted a lumbar puncture to check CSF pressure. My order reads as follows:
"Measure ICP in lateral position with legs relaxed. If pressure >25, drain 10-40cc if possible. Send CSF for protein, glucose , cell count, culture, gm stain"
I believe the NS goal of having a LP done is to rule IN or OUT a pseudotumor. I have read and he told me that if there is a pseudotumor present that Chiari decompression surgery may not work, and he wants to avoid a failed surgery.
He said I "puzzled" him....yep...i always wanted to puzzle a brain surgeon.
I have the LP scheduled by a radiologist. He is not a neuroradiologist, but I contacted a general surgeon friend of mine, and he highly recommended this particular radiologist. The radiology dept at the local hospital said he is very experienced.
Let's hope so....it is scheduled on Sept 17th
So, would it make sense to call the radiology dept and request a blood patch? Do some docs not use one? Believe me, I am so sick of being tortured, prodded, and poked on top of feeling like crap all the time, ANYTHING they can do to help the puncture would make me happy.
My CINE showed 4 areas of restriction, but no blockage. 3 of them were around the chiari, and the 4th one was posterior to C5 . The NS said that 2 of them could show restriction just because I was laying down. Gawd, when I looked at the CINE, a couple of those spots looked like they were totally blocked, but obviously, I am not a doc.
I agree with potential probs with gluten...not sure if I can even picture total elimination, but cutting wayyyy back is certainly possible :-) I don't eat much anyway, thankfully, but I sure do love stuff with gluten in it here and there. The bloodwork for gluten wasn't just below the reference range, it was "Class 0, below detection"
so...I wait again. Now it's the LP. I hope to god that the doc doing it knows his stuff. If it is negative for pressure, then I guess the NS and I will talk potential decompression surgery.
I am fine with going through this and that test, it's the waiting for them and the results, and a gameplan that is flipping killing me and making me feel crazy. I want answers, I want to feel better, I want to be believed.