My son with Chiari

(Kee-ar-ee) Malformation

My 8yr old son, has a rare disease called Chiari Malformation.

Chairi Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms such as, painfull headaches in the back of the head, that increases in pain with straining or coughing, ringing in ears, painfull tingly sensations, and many other symptoms.

This video was originally made just for my son and our family during his stay at the hosptial for his decompression surgery. But i'm hoping that by uploading it, that I can help with awarness about this condition, that can be so misunderstood by many Dr's and patients, many people are still being misdiagnosed every year.

Please take the time to visit www.conquerchiari.org and educate yourself about Chairi/Syringomyelia even if you are not effected with it or not..

Knowledge is power :)

Thank you all
This video is best viewed at small size.


Update: Thank you all so much to all of you who have written to us.. Since the surgery, Alex still has some symptoms he deals with but not on such an extreme basis, and he is a happy, healthy young man. Who loves baseball lol... Recently, due to a copyright claim, I had to remove the original song that I had made this video with and do an audio swap.. I'm hopeing it will be back soon. Please check out this amazing song and artist. He's my son by Mark Shultz, true amazing singer.

Thank you all and God Bless

Category:

People & Blogs

Tags:

• Chiari
• Brain
• Cerebellum
• Spina
• Bifida
• Syrinx
• Syringomyelia
• Decompression

[xXGuitarlover11Xx]

Alex is one of my Friend's I'm glad he's okay! :')

[Lollipop12104]

Thanks hun!!!! I hope all is well.. and dont worry i'll join yoville like i promised ;) ... see you tommorrow... hugs!!

[123braky]

God bless you and your son. I am sick too I have SM and I am right now writing so late crying because I 3 kids and I don't want to go to soon. I have hopes but when symptoms come I can't stop my worries. Good bye.

[Lollipop12104]

Oh please be looking for a letter from me in your inbox soon!! My prayers are with you!

[louka5]

I've just read what you've written for this video and your son. I'm watching now extreme makeover. It's a family that has this malformation but the mother is helping people who have this desease.. She and you really made me cry.

All i have to say is that you people are blessed from God! There are times that I don't respect life but reading what you wrote gives me power to go on.

I just smile and laugh only seeing Alex smiling!

He is the real hero!!

[Lollipop12104]

Thank you soo much for your kind words and taking the time to write such a beautifull message.. God Bless!!! :) and Alex says hello :P

[clellard]

May angels be with you always. My family and I will say a special prayer tonight for you to keep you and your family strong.

[76msjackie]

THank you for uploading this. my son is having this done the 19th and i had no idea what he would look like after the surgery. You have helped my nerves 100%

[1thesauers]

My name is Heather I have a support group on FB called Zipperheads for Chiari, we support you and love you.

[Hevinlee]

I never heard of this disease before now. Please know that this video has struck a chord in my heart and I shall pray for a cure along with all my other prayers for other diseases as well. May God bless you and your precious son. ♥

[Hevinlee]

@Iggy2721 amen! and I shall pray for all who are here :)

[Iggy2721]

I would like to compliment you on this video and the fact that you are doing this. I have Chiari Malformation also and have been told that I need the surgery too. I can remember blacking completely out as a child, I had a tingling sensation and then slowly I would come back. That all has stopped now, God is the healer of our bodies. May the Lord be with all who have this. Bless little Alex Lord for being so brave. AMEN.

[littletoadtwo]

hi-

my daughter has CM..and 3 children..she needs the surgery but she is currently unemployed and has no health care..i worry about her constantly. She relies alot on muscle relaxers and mild pain killers. She is over whelmed by medical bills from her frequent trips to the hospital and dr. visits and the cost of her meds. I am glad to see so much is being learned and studied about this.. thank you for your video. ;)

[xalaoxi]

may God bless everyone single person...... thank you Lord

[mitch19636]

@lolliepop283 Thanks for the reply. You are cofrect that the word disease does NOT mean contagious. LUPUS is refered to as a disease BUT if course you can't catch it. :-) As for Arnolld chiari I was told by a professor that it is a Mal-formation.

Have a good day :)

[lolliepop283]

@mitch19636 It is a disease, and this is not misinformation. The word disease, does not mean contagious.. Many diseases, like diabetes and hypothyroidism, and hundreds of others are not contagious. Although I am sure when many people read the word "disease", they think "catchy"..but this is not misinformation. Thank you for your comment though :)

[mitch19636]

It is not a Disease I get tired of miss-information about ACM et al. You cannot catch it,

It is a strucual mal-formatio of the occiput and the surrounding structures