Friday, June 19, 2009

Baltimore for Testing

Baltimore for Testing

So back to Baltimore I go…this time with Mom.

Boy that is one tough ride. Between the construction and D.C and Baltimore traffic whew!!!! Now, yes I do fly for free but sometimes it is a hassle but driving is a hassle to. Pick your poison.

Mom and I stayed at the Radisson and it was very nice. Our room had Sleep Number Beds and to tell you the truth, I don’t see what the fuss is all about? Overrated is the word that comes to mind, but that’s just my opinion. We had a great dinner at Crossroads and then headed to bed.

The hotel was situated in a shopping complex with stores such as Talbot’s, J. Jill, Chico’s, Jean Pool, Pied Piper, and Williams Sonoma so needless to say Mom and I had no trouble killing time before my two o’clock appointment.
The only issue I was having (besides my head) was that I had myself so worked up I was hot as hell. I felt like I was roasting!!! Even though it was rainy and cool outside. So we headed over to Sinai and up to Radiology.

Check in went ok..not as smooth as it should have been, but that’s a long story. But thanks to the wonderful lady at registration we got it all straight. I must say she was absolutely delightful and had me at ease in no time.

Another great thing at Sinai is that they let my Mom go back into the X-Ray/Scan room with me and stay the entire time!!! My Mom is my rock so this was the cherry on the top, so to speak.

The Nuclear Medicine Doctor got me all set up and we waited for Dr. Williams to come in. He made his grand appearance and off to the races we went.

First off he has to shave some hair around the shunt area. Seriously I think….Seriously. Pretty soon here people I am going to run out of hair to cover up all this shaving business!!

Next he cleaned the shunt area and then used a numbing cream. Now for the fun part. The needle. Actually, at this point in my life I have been prodded, poked and stuck so many times it really does not bother me anymore. Yea Right!!! This needle went into my head, well actually into the shunt reservoir. To make this even more fun (like it could be) it took three times to get the needle into the right place. Ouch!!!!

So after the radioactive die is in he has we turn my head back and I lie still for twenty minutes. The entire time I have to lie still. Not hard, not painful. I talk with Mom and listen to the Nuclear Medicine Doctor talk to us about his growing up in Kenya.

After the twenty minutes is up they have me sit up for ten minutes. Hmmmmm. Then I lie down again for another round of imaging of fifteen minutes. After that round they decide they want images from the side view. Hmmmm. Ten minutes of those images.

They let me go to the waiting room after that while they page Dr. Williams. At this point I have no idea what the results are. I just know I have a horrible headache and am ready to hear something. So the tech comes out and I think she is going to tell me that Dr. Williams wants to see me but no….he wants ten more minutes of imaging. This is when I know something is up.

After that round Dr. Williams is there and we look at the results together.


This is the Sigh heard around the world. Not really..but you get the drift.

As usual, with me anyway..If you can’t go big, go home.

The images show very little if no flow in the first 20 minutes. After I sat up for ten minutes the die did move some, but not much. This pattern continued through each continued round of imaging.

They never saw the die leave the tubing and exit into my stomach. FYI, it should have easily done so within ten minutes in a normally operating shunt.


So where do we go from here??? Good question my friends.

This test could indicate one of two things or both
The shunt is obstructed/blocked
The ventricles in my head have collapsed onto the valve and are causing low pressure and over draining

He did not admit me to the hospital for IPC monitoring because he feels that the shunt may obstructed (which this test is mostly showing) the results would not be valid and it would be pointless to but me through that.

So, he wanted a few days to process the information and also consult with a Neurosurgeon and see what the next best step would be.

What could that be? Well anything from simply adjusting the shunt setting and seeing if that helps to surgery to explore if there is a blockage in the abdomen or brain.

I have a phone conference scheduled with him today at four o’clock and I am very anxious to see what he has to say.

Now it’s just a waiting game and looking at the clock constantly.

I am so thankful to have found a Doctor that is really interested in finding the cause of the problem and finding the solution. I have said it before and I will say it again. Intracranial Hypertension will always be a part of who I am, but I will not let it be what defines me.

“Live your life crazy, and love every minute”

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