Chiari Entry #3

Chiari Diary entry No. 3: Date 12/12/08

               Well it is Friday.  It snowed last night so there wasn’t any school and Maggie stayed home with me and Quen. Tristan went to his cousins house to spend the night and Jessi started work back at Dr. Meffert’s as a  Chiropractic Therapist.  Maggie and I put up the Family Room Christmas tree and I did a little work on the rest of the room also trying to finish the remodel.  I am forcing myself not to over do it as that seems to bring on the symptoms hot and heavy.

 Jessi went with me to my neuro appointment with Dr. Ahmad yesterday.  We think the world of him.  Dr. Ahmad gave us the results of my CINE MRI.  The CSF flow in the anterior portion is minimal.  It is being blocked by the 4-6mm herniation of my cerebellum.  Thus he is referring me to a Neurosurgeon.  He recommends that I have the surgery after the holidays.  I asked him about waiting 6 months and he advised against it.  He said that there is no reason to wait that long and continue as I am.  I suspect that he thinks I will get worse if I wait too long.  He also scheduled an MRI of my cervical spine to determine if I also have a syrngomyelia (cyst in spinal canal) and for a EMG of my left arm to check nerve damage and rule out Carpal Tunnel.  This will prevent me from having extra tests by the surgeoun when I go.

So I guess that means some research over the next few weeks of the doctor that he is suggesting and comparing that to the doctors that we have found.  We are looking at the University of Pittsburgh on his recommendation and The Chiari Institute of New York ( our find).

Jessi has been so great.  A few weeks ago she did have a little difficulty though.  I felt like she kept staring at me waiting for the back of my head to explode or something. LOL.   I think it was just worry and coming to grips with the possibility of surgery.  She is my rock, my warden and soon to be my nurse.  She has always been and will always be the Love Of My Life though.   What can I say other than that she obviously loves me as much or more than I love her. No doubts. No question about it.  She is so strong and doesn’t even realize it.  She is my Lois Lane, always there when Superman needs help because he over estimated something.

Maggie has also been great.  I mean she is only 8 years old.  We fixed breakfast together today and she helped me with Quen also.  She is worried also and doesn’t quite know how to express it.  So what if she has a blond moment.  She is great just like her mother.

Tristan seems to know that something is going on but not what it is.  I don’t think he is ready to know yet either.  He is 4 years old and just lost his Papa to Lung CA.  He is such a sweet kid.   He gets upset still thinking about that and he got upset the other day about Mama Faye because he knows she is sick.  He associates getting sick with Papa now.  He worries that sick means dying.  We have tried to explain that isn’t so, but once again he is only 4.

Quen is completely oblivious.  He is 2 years old.  What can I say. He is the devil incarnate here on Earth.  Not really but man he is rotten, conniving and yet so innocent and sweet.  You can see it in his grin and his eyes.  He is pretty loving toward everyone despite his devilshness though.

Well it is snowing again and I should probably close.  Yeah I’m worried.  A lot.  But I can’t let them see it.  You see I’m Superman.  I am suppose to take care of everyone. Not them taking care of me.  I do the rescueing around here.  Not them. This sucks so bad.

Our search for a Neurosurgeon

Part 1.

Finding a Chiari specialist is hard to say the least.  Not to mention finding one that you feel safe and trusting of is even harder.  My local neurologist suggested that we look at University of Pittsburgh Medical Center and at University of Virginia.  I also wanted to look at Cleveland Clinic because we have a friend that had work done there and they were very pleased with the whole experience.

UPMC  (University of Pittsburgh Medical Center) was our first encounter with a Neurosurgeon and it was not a good one.  We researched the Docs credentials on-line.  We found articles and even other people that had been to him.  everything seemed to be OK as far as we could tell.  We found one person that did not have a good experience and we wrote that off as a personality conflict.  Boy were we wrong. 

We gathered up my MRIs (brain, CINE and cervical) and went to see UPMC’s specialist.  After waiting in an over crowded waiting room for 3 hours.  We were finally escorted to an exam room where we spoke with what appeared to be a med student.  He informed us that they did Chiari Decompressions on occasion and that he was going to speak with the Doctor and they would be back shortly.  Forty five minutes later and middle age man poked his head through the door and said we needed new films and that he couldn’t read anything that we brought and proceded to leave.  Whay was going on here?  We got him stopped just long enough to ask what he meant and he said to schedule films there at UPMC and then he would see us.  He said that the radiologist report from home was inaccurate and that he didn’t trust it, even though it said I had a 4mm herniation and my neuro reports confirmed my symptoms and the radiologist report.  ” I couldn’t have Chiari unless it was a 5mm herniation.”

I live almost 5 hours from pittsburgh.  My insurance wasn’t paying for this visit much less all new MRIs and they wanted an hour and a half MRI session that they scheduled two weeks away.  It sounded to us like the Doc didn’t know all that the articles claimed that he knew.  I will refrain here from mentioning his name but if you email me privately I will release it.  To say the least we felt like we had made a useless trip that was expensive and futile.  Talk about crushing someone’s moral.

After speaking with the other person  that had been to UPMC about our experience we found that we had been treated the same way as her.  Rudely with no profressionalism.  We did not go back, nor did we look back.