I did end up going to TCI, but with a promise to my family that I would only let them diagnose me, and not go for any operations through them, at least not at this time. As it turned out, they did not suggest any surgery. Here is my report:
I am very tired, but I want to just say, it was a success; I received answers that I needed after several doctors at home had done nothing for me but diagnose me with fibromyalgia.
I have intracranial hypertension - raised CSF pressure throughout the head and spine. It may be due to a blood vessel in the brain that is not properly draining blood from my brain. As a result, my brain is swelling and being pressed out of the foramen magnum (sp?) at the bottom. As a result of that, I have a 4mm tonsillar herniation - like a mild Chiari, yet not Chiari Malformation Type I, because I do not have a small skull, which goes with CMI - this is all what Dr. Bolognese told me. I have a normal sized skull, but a swollen brain, and so my brain was being pressed out of the skull. Also, my pituitary glad is being squashed flat (‘empty sella’ - something to google), and my ventricles are small. All from pressure in my head.
On top of that, I had a spinal tap on July 27, and comparing the MRI from before the Spinal Tap to the MRI done at Manhasset Diagnostics on the workday before my appointment at TCI, my tonsillar herniation worsened - it got dragged downwards further. This was due to the spinal tap being done without radiology, and by the technician going in blind, when doing the spinal tap. He stabbed me more than once, which created a CSF leak, and the leak created a vacuum, which dragged my cerebellum downward to tonsillate and herniate further.
So, what they have to do is reduce my CSF pressure (to help out my cerebellum, my pituitary glad and my ventricles), which would usually be done with Diamox, but I have an allergy to Diamox, so they want my doctor to prescribe lasix, a diuretic, at 10 mg every other day. A very low dosage, because my blood pressure is good - almost normally low - and a higher dosage of lasix would make me ill. They want my doctor at home to monitor me with blood tests each month while taking the lasix. If the lasix does not work, I would have to have monthly spinal taps, but under radiography so that no leaks occurred, which would cause my tonsils to herniate even more. Spinal taps of 30 ccs for a few months have been proven to cause the body to eventually regulate itself - for some reason not known - so that CSF pressure becomes normal. However, if spinal taps caused further complications for me - ‘spinal headaches’ like I had before (you can google that term) - then the third step would be to install a shunt into me. But a lumbar (lower back) shunt is contraindicated because it would pull my tonsils down possibly from 4mm to 10mm. So possibly a shunt in my head could be used - even there, there are risks though because I have small ventricles, as small as the shunt itself, not like regular ventricles.
My tonsillar herniation (I hesitate to call it chiari) is not at this time blocking the CSF flow, either behind or in front, so Dr. B. recommended no surgery, even though my pressure is in the high 20’s (28) and he said that in the high 20’s they do start to think about doing surgery, but he wants to stay with conservative treatment for me. He I should try the most conservative treatment for at least 6 months - before even considering a shunt, much less surgery. If it were anyone but Dr. B himself, I would have run to TCI for a second opinion. But it was Dr. B., and so I fully trust his judgement. I have seen all of his videos and know there is more than enough reason to believe he knows exactly what he is talking about, and that being conservative is the best idea. I thanked him and told him that many others thank him too, for all he is doing for us!
It’s a bit scary to me (my diagnosis)… but Dr. B. was so great, so funny and kind. Dr. Mora was kind, too, but mostly just told me postural exercises to increase my head stability and relieve muscle tension. After I saw Dr. Mora, before I saw Dr. Bolognese, I was a bit confused as to if anything was wrong with me at all. But I told myself that there is a difference between a Neurologist and a Neurosurgeon and to just hold on, until I could see the Neurosurgeon. Now, looking back, Dr. Mora’s gentle and kind suggestions for me, which he typed out for me to take home, are wonderful and really helping me in daily life while I wait on the medication that I hope will help me.
4mm herniation, ICH (pseudotumor) …haha I finally have letters to put after my name!