tag:blogger.com,1999:blog-5399243340969545020.comments2019-02-10T14:30:15.627-08:00Kyle's Chiari Malformation BattleKylehttp://www.blogger.com/profile/01342538338238312438noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-5399243340969545020.post-56858906552694350102019-02-10T14:30:15.627-08:002019-02-10T14:30:15.627-08:00Kyle,
My name is Dr. Laura Criddle, and I run an ...Kyle,<br /><br />My name is Dr. Laura Criddle, and I run an organization (www.tcarprograms.org) dedicated to training nurses who take care of trauma patients. We’ve taught a 2-day course for RNs at over 400 hospitals across the U.S. As you can imagine, nurses love to see pictures of REAL patients, rather than staged photos, but it’s very difficult to locate such images, particularly photos of children. Searching the web, I ran across your December 2011 blog and read about your ordeal. There’s a wonderful picture of you in your halo, in traction. It sounds like you've made a great recovery. I would humbly request permission to use this photo in our training courses. Most nurses never get an opportunity to see a child in a halo before they are suddenly in a position to provide patient care. We always say "Photo courtesy of . . ." and give you credit for sharing your image.<br /> <br />Sincerely,<br />Laura M. Criddle PhD RN <br />Chief Clinical Officer<br />TCAR Education Programs<br />lcriddle@tcarprograms.org<br />www.tcarprograms.org <br /> <br />33470 Chinook Plaza, Suite 373<br />Scappoose, OR 97056 U.S.A.<br />Office: (503)-608-4900<br />Cell: (503)-543-5677<br />Fax: (503) 961-7236<br /> <br /> <br />Anonymoushttps://www.blogger.com/profile/08207132845458012922noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-42883011583257345132013-03-30T12:18:40.057-07:002013-03-30T12:18:40.057-07:00I just found out that my Kyle also has klippel Fei...I just found out that my Kyle also has klippel Feil. His c2 and C3 are fused. He is 11, has a short neck, low hairline and limited mobility in his neck. I didn't know he had this and he was on the tackle football team. Thankfully he escaped without injury. He started to walk on his toes and I noticed his head was not turning without his shoulders. We took him to a pediatric spinal specialist and a neurosurgeon in Miami. He has a malformed c2 and basilar invagination. He does not need decompression surgery yet, but may in the future. It was comforting to read your page. Thanks for posting. Kristen, Tallahassee FLAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-44191941177196847232012-12-19T04:45:28.112-08:002012-12-19T04:45:28.112-08:00Really very informative .....keep sharing.
Cpap O...Really very informative .....keep sharing. <br /><a href="http://www.cpapmachinescanada.com/cpap-ontario.php" rel="nofollow">Cpap Oakville</a><br /><br />jon wilsonhttps://www.blogger.com/profile/04726829113690962449noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-81479157772667810932012-11-18T12:30:36.053-08:002012-11-18T12:30:36.053-08:00Hi Benjamin's Mom! Thank you for sharing your ...Hi Benjamin's Mom! Thank you for sharing your story. It truly helps me and those who are looking for answers. <br /><br />I was going to post an update on Kyle sometime today but in the meantime, we found out Kyle's brainstem is still compressed causing more neurological issues. He does have tracheomalacia too and the left side is paralyzed. <br /><br />Please continue to follow Kyle's blog and let me know if you have a blog for Benjamin. <br /><br />May Benjamin continue to grow healthy and strong!<br /><br />Thank you so much!!Kyle's mom....Christynoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-27569955798238099442012-11-18T11:21:14.031-08:002012-11-18T11:21:14.031-08:00Benjamin's Mom
Hi there! I just read this bl...Benjamin's Mom<br /><br />Hi there! I just read this blog for the first time. My two year old son has Klippel-Feil as well. Benjamin had sleep studies that showed over 500 events per night. One day he stopped breathing, but (through the help of others) we were able to resuscitate him. It was then that we discovered through a bronchospy and a CT scan that Ben had tracheomalacia (soft floppy airway) then we disvovered that the artery from his heart (inominate artery) was crossing over his trachea and everytime he grew, he was slowly choking himself. This is rare. We were then able to improve his condition significantly by having surgery that stitched his artery from his heart into his chest wall. One of the first things I discovered (about 3 weeks post-op) was that Benjamin no longer had a quiet muffled voice...he was loud!!! Good luck to you. Please contact me if you have any questions.<br /><br />Karen karendgartner@hotmail.com<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-72477815334980344382012-10-15T22:35:30.619-07:002012-10-15T22:35:30.619-07:00Excellent information provide for us.................Excellent information provide for us.....................thanks for sharing<br /><a href="http://www.cpapmachinescanada.com/cpap-toronto.php" rel="nofollow">cpap machines Toronto</a> jon wilsonhttps://www.blogger.com/profile/04726829113690962449noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-62550911273538573222012-10-14T00:59:09.834-07:002012-10-14T00:59:09.834-07:00You're an inspiration Kyle!
Once you're o...You're an inspiration Kyle!<br /><br />Once you're off the halo, you may want to join the patient (and survivor) support group http://www.chiarisupport.org/.<br /><br />I am a member of the community and I would like you to know I will be sharing your story with the rest of the ChiariSupport.org family.Armando Abrerohttps://www.blogger.com/profile/14350620326005578199noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-27318812756640534102012-08-01T02:37:08.243-07:002012-08-01T02:37:08.243-07:00He is a strong boy. I admire his will to fight and...He is a strong boy. I admire his will to fight and survive.christinehttp://hottubonline.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-66154979742885712282012-07-28T18:12:24.138-07:002012-07-28T18:12:24.138-07:00That is interesting Julia. I always felt there is ...That is interesting Julia. I always felt there is a better reason for Klippel-Feil than what we were told. I just want Kyle to feel good and be healthy and strong. Thank you so much for posting information on the mutations in the GDF6 and GDF3 genes.Christy...Kyle's momnoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-39852061534944776762012-07-25T13:28:53.506-07:002012-07-25T13:28:53.506-07:00Hello, my name is Julia I am 46yrs old I was born ...Hello, my name is Julia I am 46yrs old I was born with Klippel-Feil syndrome with Sprengel deformity, Thoracic outlet syndrome,DDD,Spondyloysis,Tortous colon,Ehlers-Danlos syndrome, & other health issue's. In April of 2011 I was diagnosised with Chiari Malformaiton, I have always had headaches daily but the doctors have always blamed it on my birth defect. I did not get a diagnois for my deformity till about 6 yrs ago, I have known since I was little that I was diffenrent but when I was 18 a doctor did xrays & found my birth defect, but he could not give it a name...So I have seen many doctors in my life time & no answers...I read your post about KFS the blood supply was cut off,I would like you to read this: Mutations in the GDF6 and GDF3 genes can cause Klippel-Feil syndrome. These genes provide instructions for making proteins that belong to the bone morphogenetic protein family, which is involved in regulating the growth and maturation (differentiation) of bone and cartilage. Cartilage is a tough but flexible tissue that makes up much of the skeleton during early development. The proteins in this family are regulators of cell growth and differentiation in both embryonic and adult tissue. The GDF6 protein is necessary for the formation of many bones and joints in the limbs, skull, spine, chest, and ribs. The protein is involved in setting up boundaries between bones during skeletal development. While the GDF3 protein is known to be involved in bone and cartilage development, its exact role is unclear.<br /> GDF6 and GDF3 gene mutations that cause Klippel-Feil syndrome likely lead to a reduction in functional protein. While the GDF6 and GDF3 proteins are involved in bone growth, and the GDF6 protein plays a role in the formation of vertebrae, it is unclear how a shortage in these proteins leads to incomplete separation of the vertebrae, specifically the cervical vertebrae, in people with Klippel-Feil syndrome.<br /> Some people with Klippel-Feil syndrome do not have identified mutations in the GDF6 or GDF3 genes. The cause of the condition in these individuals is unknown.<br /> <br />I hope & pray that Kyle is doing Much better, I can't believe that the Doctors have done so many surgery's on him...If you have any question you may ask...Take Care & God Bless JuliaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-56625384818553865252012-07-11T18:15:04.590-07:002012-07-11T18:15:04.590-07:00@Armando. Yes, you may post a link from my blog. A...@Armando. Yes, you may post a link from my blog. And I will check out your site too. Thank you.Kylenoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-61360447546457060892012-07-08T03:58:37.540-07:002012-07-08T03:58:37.540-07:00This sounds great, the fun side despite chiari. Do...This sounds great, the fun side despite chiari. Do you mind if I post this link in our ChiariSupport.org site? Visit us there, too!Armando Abrerohttps://www.blogger.com/profile/14350620326005578199noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-8063164844730201902012-07-03T08:04:01.592-07:002012-07-03T08:04:01.592-07:00I love this! This made me smile so big!!!!! When I...I love this! This made me smile so big!!!!! When I was in the Philippines, my boyfriend's family got into an icing (as in cake topping) war! It was crazy!Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-26375220135059462622012-07-01T15:07:49.457-07:002012-07-01T15:07:49.457-07:00Powdered sugar fight sounds like so much fun!!Powdered sugar fight sounds like so much fun!!Chiari-Lifehttps://www.blogger.com/profile/01538081710674620507noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-15827044684127909182012-05-20T17:21:50.483-07:002012-05-20T17:21:50.483-07:00So very thankful that things are getting better!!!...So very thankful that things are getting better!!!! But I am still sending plenty of love and prayers!Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-43647838264104212912012-05-13T07:13:28.402-07:002012-05-13T07:13:28.402-07:00I am so sorry you all have had to live through thi...I am so sorry you all have had to live through this nightmare! I am sending prayers and many gentle hugs your way!HB the Cupcake Princesshttps://www.blogger.com/profile/01715350995396583048noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-27478251022313823662012-05-12T10:16:30.572-07:002012-05-12T10:16:30.572-07:00Sending major prayers up for Kyle! and prayers for...Sending major prayers up for Kyle! and prayers for you as well.Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-69091620549054744862012-05-06T13:30:19.095-07:002012-05-06T13:30:19.095-07:00My heart goes out to you! Wishing Kyle all the bes...My heart goes out to you! Wishing Kyle all the best. I'll keep him in my prayers.Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-36390196330001002492012-05-06T08:13:57.912-07:002012-05-06T08:13:57.912-07:00This is Kyle's mom.
Last Wednesday we were ru...This is Kyle's mom.<br /><br />Last Wednesday we were running around doing errands and we stopped at a pizza place to eat. We ordered the pizza to-go but we it was a beautiful day so we took it outside to eat. Kyle sat next to me, my 1 yr. was on my lap, my girls and my husband sat across from us. When we were almost done, an elder using a walker came up to us and told us we had a good looking, polite family. So sweet of him. Then he looked at Kyle and said, "How are you young man? Are you ok? What happened, why are you in a halo?" The gentleman took the time to listen to Kyle. I was holding back tears.Christynoreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-75924475873310535872012-04-26T21:42:02.727-07:002012-04-26T21:42:02.727-07:00Kyle it is because of you that I am never afraid t...Kyle it is because of you that I am never afraid to approach someone who looks different. I make direct eye contact and smile. I try to see thru their eyes into their soul. Thanks for being such a great example at such a young age.Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-65479642703513500732012-04-03T13:13:57.224-07:002012-04-03T13:13:57.224-07:00Kyle is such a trooper!!!! He is such an inspirati...Kyle is such a trooper!!!! He is such an inspiration! I can only imagine what it must be like for a mother to watch her son suffer. My hats off to you for remaining strong for Kyle! Thanks for sharing your journey with us.Shalunya21https://www.blogger.com/profile/01722631904930417516noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-67583307372962230402012-02-29T20:52:57.357-08:002012-02-29T20:52:57.357-08:00Thank you.Thank you.Kylehttps://www.blogger.com/profile/01342538338238312438noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-80494167790596255152012-02-29T19:27:34.926-08:002012-02-29T19:27:34.926-08:00You are dealing with more any 12 year old should h...You are dealing with more any 12 year old should have to deal with. God bless you, and thanks for sharing. We will never be normal. We just have to find a new normal! Take care of yourself. HugsApril1616https://www.blogger.com/profile/05465640821629836521noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-5310567255796023432012-02-29T12:56:26.890-08:002012-02-29T12:56:26.890-08:00Thanks Kyle (and Mom) for sharing this. I'm re...Thanks Kyle (and Mom) for sharing this. I'm reading all the posts in the Chiari Carnival. I appreciate everyone sharing his/her stories.Stacy S. Jensenhttps://www.blogger.com/profile/09646270238659432058noreply@blogger.comtag:blogger.com,1999:blog-5399243340969545020.post-32928938194691373252012-01-08T19:00:35.544-08:002012-01-08T19:00:35.544-08:00He slept a lot until the end of the first week. I ...He slept a lot until the end of the first week. I think because his pain was finally in control AND he got a T.V. on the fifth day post-surgery.Christyhttps://www.blogger.com/profile/15785039270857257511noreply@blogger.com