Monday, October 3, 2011

~ July 2011 MRI & NS Appointment ~ Blessing in Disguise

On June 28th
I had another MRI of my brain to try and figure out just what in the world is going on in this head of mine... I had been having horrible "pulling" in the back of my head, my dizziness is debilitating and not to mention the pain! Horrible head pain, mostly around the brain shunt and in the area I was decompressed. As you know, I had surgery on June 6th to change the Lumbar Shunt valve from a fixed 1.5 to 1.0. With me having Chiari~ I wont go any lower than a 1.0 since my lumbar drain is the reason I acquired a Chiari Malformation in the first place. I technically shouldn't even have a lumbar drain, but my neuro surgeon is done trying to work on my collapsed ventricles in my brain...

I have unilateral SLIT VENTRICLE SYNDROME, My Pituitary Gland is completely compressed "FLAT" (as stated on MRI) a " a perplexing amount of CSF in the suprasellar cistern represents a Cyst with possibility of arachnoid adhesion's" A Colloid Cyst along the anterior recess of the third ventricle, it is more prominent than the 2009 MRI and is now LARGER and in a different location than on the prior study. NO CHANGES in the brain stem & Cerebellum.

But read below regarding the adhesion's.. It's VERY interesting. I had gone to Neuro Rehab during the month of June, and it barely helped with my dizziness. Then I read about Arachnoid Adhesions... It all made sense after that!

Needless to say I am my own advocate, HAVE TO BE! And I had the results of the MRI and the CD in my hands before my neurologist. I waited until after the 4th of July to call her about the results. I had left Dr DeLeo a couple of messages regarding the MRI results and that I had questions about it. It took quite some time to hear back from her, I thought it was because my neuro surgeon took a 2 week vacation, and she was wanting to talk to him about it before talking to me... She finally calls on July 15th and we spent a half hour on the phone. The Colloid Cyst was her biggest concern, it's blocking CSF flow to the third ventricle. And the fact that it has moved, and is now bigger. In 2009 the radiologist called it an Arachnoid Cyst, My neuro surgeon was not overly concerned about it said people get them all the time after brain surgery. Now it's bigger, and has moved... My theory is that it's responsible for my current brain shunt failing. The Colloid Cyst is blocking the third ventricle, and that's the ventricle where my brain shunt pulls fluid from... I don't know, I'm not a Dr but it seems like the logical reason, for after three years of a wonderfully functioning brain shunt to stop working...

July 19, 2011
Chicago Bound...

Post-op appointment with neuro surgeon. I know~ my surgery was June 6th but I had to cancel one appointment, then came the 4th of July week and after he went on vacation for two weeks. Typical post op appointment at first, we talked about how I was doing since the last shunt valve change. I proceeded to tell him that my SWOOSHING came back on July 28th... He just kinda threw his hands in the air, looked me in the eye, and said that there is NOTHING ELSE he can do for me. I tried talking to him about the MRI, handed him the report, he barely looked at it, and said, "I cannot help you any further! You need to go to Mayo or somewhere like that!" I was devastated, cried... BUT I knew that he was probably going to do this. He wouldn't even entertain the possibility that the Colloid Cyst was blocking CSF flow to my brain shunt. He had his mind made up, I think before he even came into the room... He has tried to dismiss me as a patient once before but he had to keep me a little longer to fix his screw up on my lumbar shunt tubing... I had already talked to my neurologist about a referral to Indy Dr, she said I just needed to talk to my Neuro surgeon about the cyst and we'll go from there, I tried to tell her this was coming, she didn't think he'd turn me away... BUT HE DID! When I got home from the NS appointment I called Dr DeLeo's office and left her a message that I needed the referral to Indianapolis and all my records sent to Dr Michael Turner, MD.

Blessing in disguise!

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