Frustration

Ok, my illness, gonna start with filling you in about what this whole IH thing I talk about is...IIH is Idiopathic Intracranial Hypertension.  Idiopathic means they don't know why, Intracranial means inside the skull around the brain and Hypertension means high pressure, so add that together and it means high Cerebrospinal Fluid (CSF) pressure around the brain and that they basically don't know the cause of it or why it's happening.

So basically spinal fluid is squeezing my brain...yeah...ouch...

Anyway, I had a shunt placed in my head on January 31st, a week before that I had a "bolt" placed in my head for 2 days that measured my intracranial pressure (icp).  The VP shunt starts in the top of my head and the tube runs down behind my ear, down my neck under my rib cage and then goes into my tummy near my belly button, all under the skin of course.  Here are some pics of those surgeries.

The above is me with the ICP bolt, attractive with my swollen face and glasses lol

This is the incision on the top of my head

This is where they fed the tube behind my ear

And the belly incision where the inserted the tubinng into my abdomen.

So all was well for about 2 weeks after the shunt was placed and then I started getting this blinding pain under my left ribs they cannot figure out what is going on and I am beyond frustrated because it has happened 3 more times since then and I have had o many CT Scans that I am gonna start glowing soon!!  My doctor suggested to the ER doc that I may need a psych evaluation...really?  Let me grab you by the family jewels and twist and then when you cry out in pain I will suggest that you need a psych evaluation and lets see how he feels about that!  Ugh, doctors can be so egotistical like his shunt placement cannot possibly be causing me any pain because he is perfect!

Anyway, I spoke with his PA and she said it was un-called for and that I will be getting an apology from him...can't wait for that!

Somy frustration is with medical stuff, why is it so hard to figure things out?  Before I was diagnosed with IH I was told it was just my anxiety...why is that the first place that doctors go?  They can't figure it out, so it must be mental...they can never just not know or understand something...it's mental...we are crazy because they don't know something...make sense?  Nope!

So I have decided that my only option in this dilema is to lose the weight I need to in hopes that this IH weight combo is not a myth and that my IH may actually go into remission and I can get this shunt outand voila!  Belly pain problem solved!

Ok, that's enough of the frustration blog for tonight, mor to come, I will update when I have more.  I go to the Nutritionist on Thursday so weight/nutrition update to come then, and I get the stitches out from my latest surgery which was to remove some tubing and re-position the shunt in my abdomen whch obviously worked well...update on the tummy to come soon too.

I do plan on writing about other things as well :)

Stay Tuned! <3 Lov and Hugs <3