Saturday, June 13, 2009

Winner, Winner Chicken Dinner

Winner, Winner, Chicken Dinner

Yes I actually came out of a Doctors appointment not wanting to go back in and body slam the Doctor. (to be fair, I am dealing with an illness that is rare and most Doctors have little knowledge about)

I had a huge smile on my face and a weight lifted off my shoulders.


It seems that I have finally found the right Doctor to treat me. He is an expert in the field of Intracranial Hypertension and boy does he know his stuff.

This is one of those appointments that are really hard to explain. Why is that you ask?

Well for one thing when is the last time you met with a doctor for a little over two hours and had his undivided attention? Yep you read that right. Over two hours.

The thing that really impressed me about him is that he said that we can’t just look at the shunt, we have to look at everything and see what other factors are going on that could be affecting me/head pain.

To start off with he had me tell him my version of events of what has happened since January.

That was a long and drawn out conversation.

Next was the neurological examination. Eyes, reflexes, cordination..ect….

Then onto the down and dirty…what to do with me now.

One interesting thing he did have to say was about the the surgery I cancelled…ya know the second shunt I was going to have placed… the surgery at Wake Wed.

He said that I “Don’t need two exhaust systems” I kid you not…his exact words. LOL!!!! Why in the hell could he have not told me that over the phone earlier, well we will never know.

He feels that yes I do have Intracranial Hypertension and it is not under control. Why…well that could be several reasons.

#1- I could have a blockage of the shunt. When he looks at my CAT scans he sees that my ventricles on the right side of my brain (the side where the shunt is placed) are much smaller than the right. This may be an indication that the ventricles have collapsed onto the shunt valve. Also, because I have had three abdominal surgeries in the past I am at greater risk for lesions and adhesion in the abdomen. This could mean the end of the shunt tube has adhered to one of them and it should be free floating.

#2- I have trouble sleeping and snore…also while in the hospital previously my family noted that I would stop breathing for seconds then gasp for air and continue breathing again. Signs of Sleep Apnea…which according to him have been and can be attributed to Intracranial Hypertension.

#3- Which I still don’t understand is that I may actually be having an overdraining issue, a low pressure issue. I won’t go further into that because I really don’t understand it myself.

Overall it was an overwhelming appointment…but in a good way! I have never had a Doctor seem so interested in the whole me. He talked about everything from the shunt, my weight, to my vision disturbances. It was refreshing.

He wants to help; he wants me to be back to the real me. He is ready to do what it takes, whatever it takes to get there. Sighhh…. What relief….I cannot even begin to explain it.

He was so down to earth, so easy to talk to, to real. He listened, he asked questions. He has a plan. He is not about to throw the towel in.

So what is the plan you ask?

I will head back to Baltimore on Monday for my appointment on Tuesday. On Tuesday I will have a Shunt Patency test. This test will show if I have a blockage in my shunt. They will take a needle and inject die into my shunt and watch the flow.

If there is a blockage, well we shall go from there….that would mean surgery.

If there is no blockage seen then I will admit to Sinai hospital for ICP monitoring. They will insert a monitor into my brain. This will monitor the spinal fluid pressure in my brain for 48 hours.

Whewww did you catch all that.

So that’s the wrap up, for now.

Oh what a ride it’s been, but life is like a ride isn’t it…It has its ups and downs and levels out at times. But we all just hope we get to ride the ride of life for a long time.

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