WELCOME!!

If you are reading this it's because you are family or a friend or someone who is suffering or has a loved one suffering from Chiari Malformation.

I hope that you can be educated and learn the strength and bravery that Kendall is showing throughout her journey...

Say a pray, give a thought, hug the ones you love....

Kendall Bug

Kendall Bug

Wednesday, December 2, 2009

The Long Awaited Update...SORRY ALL! :)

 So much to say and not sure that my brain will flow through to my fingers....

We made our trip to Long Island on 11/22.  What should have been a 4 hour trip turned into 6 due to the Giants game and us getting stuck on the George Washington bridge! ACK!

Night 1:  Arrival at the Ronald McDonald House (RMH).  Barbara the ever so wonderful house manager showed us around the AMAZING house and then off to our room.  Waiting for my sweet princess was a TY beenie giraffe, a homemade crocheted blanket and a dr. Seuss book. FOR HER TO KEEP! Of course she was more than elated!!  We went to this little diner around the corner from the house and got monster burgers and filled up on greasy food before bed. What a wonderful evening. Really.

Morning 1:  Testing day.  We went to the Manhasset Diagnostic Imaging center for our first appointment at 1.  She had an Xray, a CT scan and an MRI. Poor kiddo.  What a trooper she was though. The cool thing about MDI was that we were allowed to sit in the room with her while she had her CT and MRI so she wasn't alone in the rooms.  By 4 we were done and she was FINISHED! LOL!  She said she was "over it" :) that's my girl. 

Evening 2:  We left MDI and went on a shrimp cocktail hunt. Kendall was craving the cocktail! We stopped at a restaurant called Benihana and after ordering drinks and realizing there was no shrimp cocktail, we up and left :) It WAS all about Kendall ..... after all.  Ended up at a place called Seven Seas and she got her wish. Gary got Philly cheesesteak, KJ got her shrimp and chicken tenders, I got chicken and pasta...and heartburn!!!  Went back to the RMH and played some Wii and dress up and then watched a movie and took a trip to la-la land.

Morning 2:  9am appointment at the Chiari Institute. This is where it gets a little confusing so if I lose you, I apologize.  We saw Dr. Amit Shelat and Dr. Salvatore Insinga and honestly these 2 men were wonderful. They were so patient with all of our questions and interacted so well with KJ.  Here's the skinny:

Kendall has 2 other conditions in addition to her Chiari I.  She has platybasia - malformation of the base of the skull due to softening of skull bones or a developmental anomaly, with bulging upwards of the floor of the posterior cranial fossa, upward displacement of the upper cervical vertebrae, and bony impingement on the brainstem AND basilar invagination - Basilar invagination occurs when the top of the second vertebrae moves upward. It can cause the opening in the skull where the spinal cord passes through to the brain (the foramen magnum) to close. It also may press on the lower brainstem. The brainstem is a stalk-like part of the brain that connects the main portion of the brain to the spinal cord.  Clear as mud?  Yea, me too.


Basically the doctors said that the Chiari is the least of our worries.  Her brain stem is compromised by her spine. It is putting a large amount of pressure on her spinal chord and brainstem.  Her skull and spine are actually rubbing against eachother with no padding in between.  This causes a "bobble head" effect. Kendall does not have the ability to hold her head in an upright position for very long without her neck getting tired.  Wouldn't know it to look at her.  Because of this KJ has to be careful.  No more trampoline, no roller coasters no horseplay.  At least until after surgery.
 
Surgery. ****stomach falls to feet****  No questions remain about it. It HAS to be done. The question now is WHEN? 
 
Dr. Insinga ordered us to have a dynamic MRI done when we got home.  This was done on Monday 11/30.

He also advised me to keep a journal for the next 2 months to monitor her symptoms and side effects. Write everything down. Watch her like a hawk.  The problem? Kendall has lived with these conditions her whole 8 years of life. How the hell does she know what is normal? How does she know what life is like without the headaches, the weakness, the other nuances??? 

Follow up appointment with Dr. Bajwa here in JC. 12/2:  Dynamic MRI (this is an MRI in which they have KJ move her neck to see if there is still compression on her brain stem when she flexes and extends her neck) shows that her brain stem is definitely compromised when she moves her neck. Solution? Dr. Bajwa prescribed a philadelphia collar (a neck collar that will extend her skull off of her spine to alleviate some of the pressure) for her to wear for a couple hours every night.  She will also start physical therapy for her neck muscles 3 times a week.  If nothing else, the collar and PT will help to strengthen her neck and just prime her for surgery. 

Long and short of it all:  The first week in Feb we will make another trip to LI to see Dr. Insinga to see what the progress is, if any. Hopefully at that point we will know when the surgery will be.  They are hesitant to do it now because of her age.  It is more involved and complicated than just the decompression surgery for the Chiari. It was involve rods and bolts in her spine.  For now, my life is devoted to paying attention to things that she may not understand. To documenting EVERYTHING, to helping her understand that for now, she can't do everything that her friends are doing...no jumping on the bed, no wrestling...just to be careful.  I tell her she is my precious fragile cargo. 

Its. Just. Not. Fair.

So....until February we are ladies-in-waiting :)

On another note:  If anyone reading this ever has the opportunity to donate to a charity, if you have a couple bucks or some spare change, please, please donate to the Ronald McDonald House. This is truly the most amazing charity and it helps so many families get through such horrible times.

7 comments:

  1. So glad you had the chance to go to TCI and get their feedback ~ they are truely a wonderful group of docs and have given me new life ~ hang in there ~ Lace

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  2. I just found this online. I'm 40 years old. I found that I have Klippel Feil syndrome,playbasia and basilar invagination in May 2009 when I fell and needed stitches. They ran cat scans and mri on me. It broken my heart when you said that she lived with this condition for her whole life because I know what you and her are going through. My doctor says that you get used to the pain and the headaches that how I lived with this for 40 years. Now I will have to have surgery to stabilize my spine. I will pray for Kendall.

    Tella

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  3. i love you both so much!!!!! my heart, my prayers, my soul are all with you!! not a day goes by that i dont think of you both!

    love nicole

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  4. http://www.conquerchiari.org/subs%20only/Volume%206/Issue%206(2)/GNS%20Minimally%20Invasive%20Surgery%206(2).asp

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  5. Thank you all for your comments. I believe that Traci posted the link to her story on conquer chiari and I think that your success story is simply WONDERFUL and congratulate you on conquering Chiari!!! Unfortunately Kendall has to have more than just the decompression surgery. She will need a rod placed in her spine to connect her skull due to the basilar invagination :( I did look into Dr. Di and do wish that we could acheive results with the minimally invasive surgery but in her case there is no way to avoid the 2 surgeries. Thank you so much for sharing.

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  6. Well hello there! Aren't you such a sweet girl. Your smile is wonderful! :)

    I am 25 years old and have EDS, Chiari and Tethered Cord. I am also a patient at TCI (I am from Canada.)

    I am so glad you had a good appointment with the wonderful doctors! I had my Tethered Cord release November 07 and Decompression April 08. Like Kendall I have CCI/CS ect. I still have to have fusion done, but due to my Osteoporosis, I have to put it off for awhile yet.

    I have a website, if you would like to check it out, join it, ect. Would it be ok if I added Kendall's blog to my links? And possibly her picture aswell?

    Lots of love and hungs! :)

    Kristen

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  7. Hello Kendell and Kendell's Mom,

    It's good to hear that you both are getting some answers about Kendell's chiari. Hopefully she is on her way to a healthy and pain free life. A few months ago I believe my wife contacted you, her name is Andrea. She just had the decompression surgery yesterday with Dr. Di at the Cleveland clinic. Since I have been sitting by her side as she sleeps, I've been able to read many blogs. It sounds like Kendell has a full plate of issues, bless her little body. I've read that some others have suggested Dr. Di, all I can say is the man is amazing and I could just hug him every time he comes in the room. I don't want to give you two any advice because I'm sure you've gotten plenty of that..but based on what I learned and what I know about Dr. Di and the Cleveland Clinic is that they are a GREAT team. Also I don't know how much you know about his procedure, but with Dr. Di's surgery the occipital bone is left intact as well as all those neck muscles. He only has to cut one muscle between C1 and the base of the skull...as you know this is much different from the standard procedure. This means that she will not get muscle spasms for a year...in addition her neck is more stabilized.

    I am not sure if Dr. Di also performs the other procedure with the rod that she needs. Perhaps another neurosurgeon does....it is so sad that she will have to have both surgeries. What a strong girl! Anyways I just wanted to share this information with you because we have been in your situation before (almost) and we luckily found the Cleveland clinic after the chiari institute. ( I also wanted to mention that the cleveland clinic likely accepts your insurance if its Bluecross Blueshields)

    Anyways, the best of luck to the both of you. I hope that in a year or two from now she will be living the pain free life she deserves. =)

    Donya

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