Ranting time. Uuugh, I've never thought I'd prefer the pain of the beast to another form of pain, but I do.

My pseudotumor cerebri / intracranial hypertension has come back. Thursday I am having surgery to put a shunt into my spine. The condition makes it so I either make too much spinal fluid, or, I do not drain it properly. (They're not sure which it is, it doesn't matter.)

The past month I've wished it was just the beast and I again. It feels like something is squeezing my brain and trying to squeeze the life out of me. The emotional instability it causes, the beast feeds on. I've found myself trying not to move, wishing that it was just the beast, not the PTC. The beast is horrible, but this shit is a nightmare... because I lose myself. I get confused, I vomit, I have all of the sypmtoms of a brain tumor...

The worst part is,, I thought I was side switching. I feel like such an idiot for thinking that's what it was...

My headache specialist and everyone else is hoping this will somehow help the clusters. I know it won't. If it was going to help, having the LP on the 23rd of July would have made him ease up on me. Instead, he was waiting for me as soon as the anesthesia wore off. (And had more fun since I was forced to lay flat.)

I keep telling myself, 2 more days, and it'll hopefully just be the beast and I again. Just 2 more... I can fight the beast, and at least with the beast, we have so much hope. So much research, so many things that can be explored. I don't feel hopeless with CH, because I know eventually we'll have a cure.

We're gonna figure this out.

PFDAN
Mystina

Sorry I missed this thread.  We'll bump you up on our prayer list.

Jerry

Quote:

Ranting time. Uuugh, I've never thought I'd prefer the pain of the beast to another form of pain, but I do.

Wow Mystina,

I had to google your condition after reading the above quote. It sounds extremely painful, mimicking the pain of a brain tumour. I really hope your surgery offers you some relief and if it helps the clusters all the fricken better... :)

Sending you big positive vibes and please keep us posted on how you fair out...

Take care


Lefty...!

Yikes....sorry for your extra pain.

I once had a spinal for a hernia surgery...The plug dislodged, and I was leaking spinal fluid.   It caused a really bad headache, I had to stay upside down. literally.    I rode to the hospital with my feet in the air, and my head hanging over the seat!   Once they replaced the plug , and took some of my blood and put it into my spinal fluid, I was ok.

very scarry!     Just hope this info can help ya in some way!

never heard of making too much spinal fluid.  I wonder if it produces the same kind of headache?
   good luck,   Lorac

Well, the PTC headache is better! The beast is still here, though the dose of morphine they gave me after the surgery made him GTFO for a while. Incisions hurt but I'm okay otherwise. Thank you all for your prayers and good thoughts :)

The only bad thing, other than my surgery being difficult was my 2 year old nephew saw me passed out post-op and thought I was dead, and keened and wailed. They tried telling the little fella I was just sleeping but he told them "No she not, she dead!" and was only satisfied when I woke up so he could hold me and kiss me. I feel bad about scaring him.

My left hand doesn't want to work right which is weird but I was told that's normal.


lorac wrote on Aug 13^th, 2009 at 4:20pm:

Yikes....sorry for your extra pain. I once had a spinal for a hernia surgery...The plug dislodged, and I was leaking spinal fluid.   It caused a really bad headache, I had to stay upside down. literally.    I rode to the hospital with my feet in the air, and my head hanging over the seat!   Once they replaced the plug , and took some of my blood and put it into my spinal fluid, I was ok. very scarry!     Just hope this info can help ya in some way! never heard of making too much spinal fluid.  I wonder if it produces the same kind of headache?    good luck,   Lorac

It's similar, but a lot worse. I don't know if yours ever gave you the 'squeezing' feeling, but it's similar to that...  Low pressure headaches are a BITCH, but usually I do fine so long as I lay flat.

The IH headache, nothing helps except them shoving a needle in your spine, or putting a shunt in. It literally feels like your brain is being squeezed so hard that it's amazing that you can breathe at all... At least that's how it feels for me. They say that each patient experienices the pain differently.

Thank you all for your kind thoughts and prayers, every single one counted <3
PFDAN
Mystina

I've been gone, missed this one. About time you catch a break kid, glad you're finally catching a break. [smiley=heart.gif] [smiley=hug.gif]

Joe