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Chiari Bracelets

May 27, 2011 - 3 comments

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A good friend of mine just made me a beautiful purple bracelet! I posted this on my facebook. He's offering to make more!

Dear family & friends~

Greetings! I hope that this letter finds you well! As many of you know, I was recently diagnosed with Arnold Chiari Malformation type 1. What on Earth is that, you ask? Well, it's hard to describe, but in a nutshell the back portion of my brain (the cerebellar tonsils) are lying too low in my head...in fact, they are lying into my spinal column by 8mm. In the "normal" brain, the cerebellar tonsils lie above the opening to the spinal column. So what does this mean? Because there is a blockage in the spinal canal, the spinal fluid isn't flowing properly. This causes intense pressure headaches, dizziness, numbness, visual problems, back problems, speech issues...the list goes on.
There is no cure for ACM, however, there is a surgery that decompresses the spinal cord. I will spare you the gory details! After 4 years of my doctors telling me that my headaches are nothing more than just headaches, I finally have a diagnosis and a neurosurgeon who will be preforming decompression surgery on me on June 27th.
Raising awareness for Chiari Malformation has become extremely important to me. This disorder has affected my life in many ways. I wanted a bracelet that signifies Chiari awareness with the purple colors and ribbon. I asked a friend of mine, Chris Marinin, if he would make a bracelet for me. What he came up with took my breath away! He has offered to make more of these bracelets for me to sell for $20. That is only  the cost of materials and a $5 donation to a Chiari Malformation organization of my choice!

The bracelets are all sterling silver with 8mm deep puple beads (purple also stands for such issues as; lupus, pancreatic cancer, domestic violence, Alzheimers, Fibromyalgia, Chron's Disease & Colitis, Cystic Fibrosis).
If you are interested in purchasing one of these bracelets or for more information, please feel free to contact me!

Also, please feel free to check out these sites about Arnold Chiari Malformation:
www.conquerchiari.org
www.*****.com
www.chiaricenter.org
defeatchiari.com/resources/articles/chiari-malformations

Thank you!
Stephanie





Wearing Purple

May 26, 2011 - 5 comments

I can't remember to wear purple everyday to recognize every person who undergoes decompression surgery. But, I wanted to do something to symbolize this disorder that has had such a huge impact in my life. So, until my own surgery on June 27 (if they make me take it out), I have put in a purple hair extension in my hair to symbolize Chiari Malformation. For all of my Chiari sisters & brothers, both pre-op & post-op & even those stuck in limbo...I recognize and support your struggles every day! You are all in my prayers to have "good" Chiari days!

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 January...to 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!

It's been awhile...but I'm back with good news!

Jan 17, 2011 - 2 comments

I think the last time I was on here, was back in October or November. It was right around the time I had my last MRI and was told, by yet another doctor, that although my tonsils are low-lying, I do not meet the criteria for having a Chiari Malformation. At that point I just became completely frustrated with the medical community. And I was actually having a good couple of months symptomatically.
Anyway, I went back to the neurologist this past Friday for my follow up appointment and saw the doctor that I was originally supposed to see way back in October, but was unable to see me. She pulled up my MRI and went over my symptoms and told me that based on my symptoms, the shape of the tonsils, and a quick test she did to check for increased intercranial pressure (positional) I DO HAVE A CHIARI 1 MALFORMATION!!!! Even her attending physician agreed with her. He is from the camp that believes it is the symptoms and not the size (he diagnosis at 2mm!!). So at 4-5 mm I have a doctor THAT FINALLY BELIEVES ME!!!! I wanted to hug her!  I left the appointment and cried!!!  I was so relieved! I am being referred to a neurosurgeon to see what he thinks!!
There is SUCH relief in just knowing that I'm not crazy!!!!