Wednesday, September 30, 2009

Every Season

Every Season

I realized today I have been dealing with IIH (Idiopathic Intracranial Hypertension) for all four seasons of the year now. Winter, Spring, Summer, and now Fall.

It’s quite amazing to me that just a year ago I did not even know what IIH was or could even imagine the hell that would await me the coming year.

I mean really??? So far in the span of those four seasons I have had 8 hospitalizations, 3 brain surgeries, and countless Doctors appointments and test.

MRI, CT Scans, Blood Work, PICC Lines X-Rays…..whewww you name it I’ve done it.

I know more medical terminology than I ever wanted or cared to know.

I now don’t just have one Doctor anymore I have a team of Doctors.
My “team” consist of a Primary Care Physician, Neurologist, Neurosurgeon, and Pain Management Doctor. It only took until August to get this team “right” LOL….but seriously all of these Doctors are the best fit for me and my illness and they communicate wonderfully together which is great being that two are in Baltimore Maryland, one in Clinton North Carolina and the other in Cary North Carolina.

Here’s the update for now, but as we all know things can change but I pray very hard that it stays as is.

I will head to Baltimore on October 6th with Mom for admission to Sinai on the 7th. For this admission they will be placing a lumbar catheter and be doing pressure monitoring and then a drain trail. Basically for 24 hours they will continuously monitor the pressure (ICP) in my head. This will help give them a better idea of what the pressure is actually doing and what shunt and setting to use. After the 24 hours they will drain approximately 40cc of fluid to see if I get any relief from that. (DUH!? The whole things a big duh moment for me but that’s a loooong drawn out issue and well, lets just not go there.)

For the testing I will either stay 2 to 4 nights in the hospital depending on the first rounds results. If all goes as we expect we have a penciled in surgery date of October 16th for new shunt placement.

So there ya go. It can’t get here fast enough.

Not having the shunt currently in place is causing my head to feel like a giant balloon overfilled with air. Not fun.

Let’s face it folks, pain meds are only going to do so much as the problem is pressure. I need the pressure to release out of my head. There is only so much room up there and trust me your body really does not like it when you try to add to much

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