Back from TCI - and thank you...

[Guest guest]

From the bottom of my heart, thanks. You guys, my cheerleaders,

helped me to go to TCI and I am so glad I did.

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!