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I'm a nervous wreck-1st NS appt

Mar 17, 2011 - 1 comments

I need to burn off some nervous energy and for me the best way has always been writing. Tomorrow is my first (of many or my last) appointment with the referred Neurosurgeon at Mass General Hospital. Dr. Coumans. I've researched him and found his photo. I know what schools he's studied at and where he's been published. I have not been able to find out how many chiari surgeries he's performed, though. It kind of hit me last night when I was talking to my husband: I said, "Honey. I'm seeing a NEUROSURGEON!! That's a doctor who operates on BRAINS!!!"
Husband: "I know, baby."
Me: "But, honey, that's like Dr. Shepard on Grey's Anatomy. You know, McDreamy?"
Husband: "I know."
Me: "This Neurosurgeon doesn't look anything like McDreamy though!"
Husband: "You know what he looks like???"
Me: "Of course!! I googled him and looked him up on the hospital website!"

I guess I'm more afraid of being shot down again. It has taken so long...4 years; my PCP 1 local NL, 2 Boston NL's who told me I was nuts & finally 2 NL's in Boston who diagnosed me back in get to THIS point! What if he looks at my 4-5mm and says that I don't have Chiari? What if he says my symptoms aren't Chiari? What if he says that I'm not debilitated enough?
See, that's the other thing. How can they look at how the symptoms debilitate a person? I HAVE to work. I have NO choice. No work=no pay. No pay=no life for my family! I've always put my responsibilities as a wife and a mom over my issues. I go to work every day because I HAVE to. I suffer through the pain and the chronic issue that goes along with this. I plaster on my fake smile and take care of the kids that come into my office. I sit with my lights dim and try to sit as much as possible so I don't get dizzy when I stand up. I am constantly dropping vials of insulin (and thank God the child thinks it's funny!!!!), and sometimes I leave my office to go to the bathroom to cry. But I can't leave work or I'll get fired. By 3:00 when I leave, I'm dead tired and attempt to drive home safely and I crash as soon as I walk in the door. Here is where I have (unwillingly) let Chiari affect my life. My kids are so used to mommy falling dead asleep on the couch or in the car on the way to dance class (daddy is driving). They are so used to listening to mommy complaining about the headaches and the arm aches and the leg aches and the back aches and the tingling and the "I think I'm going to pass outs". They can even recognize when I'm getting dizzy. But is this enough for these doctors? Will he look at this as debilitating?? And what if he does agree with the last NL and says "Yes, Mrs. Caramiello, you do have Chiari 1 Malformation"? Then what? Will he take the watch & wait approach or take the surgical approach? These just open up a whole host of more questions!!!!!!

To anyone that read this journal entry, I'm sorry for the rant. I'm excited & nervous & scared all at the same time!
Thanks for listening!

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by niki3350, Mar 18, 2011
Oh honey you have clearly put into words exactly what i was feeling and im guessing many others feel before we get to see a chiari specialist.  It *****, but hang on in there, im praying that you get the answers that you deserve and the help you deserve, but dont build your hopes up to much just in case you get a jerk of a ns that wont listen.

Hey honey if you do, dust yourself off take a deep breath and carry on your fight for answers.

Please keep us all posted on how it goes and no that you are in my thoughts.
Niki x x

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