Sunday, May 24, 2009

Back on the Saddle again..or maybe it's back off..who knows

Back on the Saddle again…or maybe it’s back off…who knows

Well it was home sweet hospital again. I got to spend three glorious nights there. Rex Hospital sixth floor. I must say it’s a great place to be when your head feels like it will explode. They have these wonderful blackout shades on the windows and no one dare turns on a light when coming into your room.

And to make it even more fun. They remember me here. Even the IV team that came to put my PICCU line in did. The nurses knew me but were sad that I had to be back.

So why was I back on floor 6. My head of course. The never ending saga these days.

This bought of pain started this past Sunday and just got worse and worse. I laid in bed with my shades drawn and my medicine arsenal ready to go. I started with the small guns. Relpax..that did not touch a thing. Sighhh so its gonna be one of those.

Monday- everything hurts; even my toenails feel like they are going to explode. Because Wes is working I go ahead and call Mom so that she can pick up the girls fro school. Mom calls the Neurosurgeon to get the results of last weeks x-rays on the abdominal pain and they came back fine (of course they would, nothing is ever cut and dry) that night Mom stays until Wes gets in from flying. We call the on call Neurologist and he advises me to try Torodal injection and then to take 300mg of Seroquel because that will make me sleep and hopefully get rid of the pain. I really hope and pray this will work.

Tuesday- I wake up and my head is spinning, I am nauseous and sweating. My head feels like a gorilla is making bananas pancakes on it. Wes gets the girls to school and I go hide under the covers. But first I take a Toradol shot. These are the lovely shots that you put deep into your thigh….most of the time they work…no so much this time.

Mom calls later that afternoon and it is all I can do to carry on a conversation. She picks up the girls from school and stays. Wes is out flying on an out and back and will not be home until 2:30am, so Mom plans to spend the night. As the afternoon wears on I am still in excruciating pain so we call my Neurologist office. They want me to take another Toradal shot and then also do a sleep therapy. (Sleep Therapy is 1 Ativan, 1 Phenegran, and 1 Percocet. Night Night me.

Wednesday- The pain, the pain….I wish I was saying the plane, the plane….LOL

Enough is enough. Wes is home and he calls the Neurologist office and says what do we do. Basically we are told I need to head to the hospital for DHE IV treatments. If you have read my previous post you know what that’s all about. If not try using the back buttonJ
So we wait for Rex to call that they have a bed for me and hi ho, hi ho it’s off to Rex we go.

They get me all set up PICCU line (tons of fun and everlasting scars there), vitals, history, usual meet and great. Now its time for the meds…Thank God.

They give me Morphine shot right off and I do get some relief until the other meds get a chance to start kicking in. They gave me sleep meds that night and I did in fact sleep.

Thursday was pretty much a blur and when you are in dire pain that’s probably a good thing.

On Friday my Neurologist finally gets my Neurosurgeon to come see me (I won’t go into to much detail on that issue)

Basically he came in and pumped my shunt. He said that it pumped down good but did not re-bound quickly. This could be caused by millions of things. One could be that the shunt has shifted position in my head and the tip of it is suctioning to my head and not allowing fluid to flow correctly.

He also said that we might want to consider putting in an LP shunt. This is a shunt that is placed into your back. I would still keep the VP (one in my head) shunt.

So to determine these things he orders a lumbar puncture. AGHH I hate those thing. But at least this time they did give me an Ativan IV before having it done.

Now before I tell you the opening numbers from this LP lets go back to some basic facts

:Normal opening pressure for most people is 7-17
:My first lumbar puncture has an opening pressure of 43
: My lumbar puncture 3 weeks ago with a shunt was 21
I had my shunt adjusted down after that one to allow for more fluid to drain
:My lumbar puncture today was 25

What in the world is going on!!!!!!!! This should not be happening. My shunt should not be letting this happen.

So after taking the reading they did drain me down to 10. And by golly my head feels tons better today. That is unless I am standing up, but that’s just a low pressure headache issue that will resolve on its own.

So my Neurologist came in late this afternoon and after seeing the Lumbar Puncture results feels that the DHE IV treatment is not doing me any good and that I am really having a pressure headache. NO DUH/ He feels that the shunt is not working like it is suppose to. Wes even asked him point blank this question.

So they discharged me. And here I sit. My head is feeling so so right now, but I attribute that to them draining the fluid down today and hate knowing that it won’t be long until it regenerates.

Something has to give. I have been saying for weeks now that something is just not right. Sometimes we just know our body. Between the vomiting, nausea and the horrific headaches something is not working.

I will be calling my Neurosurgeon a call first thing Monday (it may be Tuesday since Monday is a holiday) and setting up an appointment ASAP. I want and need a plan of action.

No one ever wants more surgery but if that is what needs to happen to make me feel alive again, where do I sign up.

I want my life back.
I want to enjoy playing with my girls again.
I want to be at work and be productive.
I want to enjoy being with my husband.

I want my life back….I have already lost to much time of it

No comments:

Post a Comment