Thursday, April 23, 2009

Wasted Away Again In...Oh Wait..Never Mind....

Wasted away again in…oh wait…never mind…

We are supposed to be at a Jimmy Buffet concert tonight.

Singing at the top of our lungs and having a great time….but we are not.

There are several reasons why we are not.

Very good reasons. Reasons that just plain suck.

But it kind of worked out for the best because I would not have been able to enjoy it at all. Let me tell you why.

Lovely Intracranial Hypertension has struck again. The B!@#h!!!!! Ummmm you get the picture.

I started having whooshing in my ears again. It’s a sound in my head of being underwater near a pump. It at times sounds like an AK47 constantly going off. It’s a great indication that my pressure is up.

Also last Thursday I had a full Field Vision test that showed some Edema in my right eye and also some mild vision loss, not good. I am occasionally experiencing visual disturbances which are enough to drive a person insane. My eyes don’t seem to want to focus on anything and my peripheral vision is lost for minutes at the time. These are not good things. These are signs of high pressure, things my shunt should not be allowing to happen.

The results of the above test where sent to my Neurosurgeon and he wanted me to have a Lumbar Puncture done (also known as a Spinal Tap) Oh yes, just great…..sigh…..

So of course he wants the Neurologist to do this. If you all remember I was (key word was, we will get to that later) seeing a new Doctor at Duke. Well to make a long story short, I was not able to get a return call from their office after repeated attempts.

So I did what I swore I would never do…..I called Dr. Idiot…yep….Don’t burn bridges kid’s and I am so glad I did not.

What’s so great is that I called them on Monday, got an appointment for consultation on Tuesday and they were able to schedule the lumbar puncture for first thing Wednesday morning. Whewww…..

Now keep in mind I still have not heard anything back from Duke and I have been calling repeatedly. There is something really wrong about that. He may be a great Doctor, but if you cannot get calls back (not even from a nurse ect..) then as a patient that does not work. Granted it may not be the Doctors fault at all, he may not know. It could be the staff; it could be they are too large. Well, I take that last part back because Dr. Idiots practice has over 20 Neurologist and is huge so that is not a good excuse. Basically, the way Duke handles their patient relations is horrible. It does not work for me.
Well enough about that.

So back to the lovely Lumbar Puncture….

It was not fun. How could it be?

You lie on your side and they numb your back with a shot (that hurts like hell) then they take a hug needle and place it into your spine. The first thing they do is take an opening pressure reading. This is the number I was looking for. Mine was high and it should not be. Then he takes fluid off. This is the part that makes me question my judgment for even waking up that morning. In the process of taking fluid off, he is also lowering my pressure which will hopefully relive some of the awful symptoms I am having. Before he is done, he takes a closing pressure reading.

All done.

Then there is the aftermath.

Lucky for me my previous two LP’s were when I was already in the hospital, I was sedated, on heavy pain medication and could not have told you what day it was.

This time, OMG!!!!!!

The positional headache is a nightmare. I cannot stand or sit up for more than 10 minutes at a time without my back feeling like it will explode into my feat. Upon standing I get what feels like a head rush. Imagine what it feels like when you have eaten ice cream too fast, that’s me right now.

So, I called this morning to the Doctor, (like I was told to do if this happened as I might need a Blood Patch which would rid the symptoms immediatly) only to find out that because I have a shunt I cannot have a Blood Patch.

You have got to be kidding…..sighhh..there is that little black cloud….

So here I sit…I mean lay….because that is all that I can do for now.

I will apparently just have to wait out this positional headache. Unless my Neurosurgeon feels there is something else they can do. But wouldn’t you know he has been in surgery all day so my Neurologist has not been able to talk to him yet!! But that’s okay because these two Doctor’s have been great.
Yes, I just said Dr. Idiot was great. And now he needs a new code name. He was actually friendly. Hmmmm Maybe Doctor Moody or Doctor Surprise would be a better way to refer to him. Whatcha think?

So on I go into another day; head held high and chin up.

1 comment:

  1. oh sweetie I'm sorry to hear about the low pressure headache, they really do SUCK! I had mine for 5 solid days, and let me tell you, I would NOT wish it on my worst of enemies. I'll take high pressure any day. My neuro at the time actually told me it was better for me to be leaking fluid since I had IH, than for me to come in for a blood patch. ugh. Anyway, drink up as much caffeine as you can stand, and stay off your feet as much as possible--the more you move around, the longer it takes to heal.

    Hugs! Hope you feel better soon!