Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 Hello Everyone, I new to posting things but here goes...I was officially diagnosed as having CMT Type 1A two years ago...purely by chance...my Mom saw an newspaper article on CMT and wrote the foundation for some information...what came back in the mail could have been written expressly for me.I've known for some time that my clumsiness and my penchant for falling was some type of disability..but was a bit scared to actually find out what was actually " wrong " with me. As a child I lived in England....my Father was US military and I spent some time at the Radcliff Hospital in Oxford where I was labled as having a severe primarily motor demyelinating poly- neuropathy(confirmed by sural nerve biopsy).I fall down alot..even now at age 33......my knees have pretty much taken the brunt of the impact and they're not doing so good and I've noticed something " new " ...my hands sometime become extra sensitive heat....sometimes when I stick my hands in hot water..whether for a bath or washing dishes, my fingers feel like they're being shocked or something...am I going crazy or has anyone else felt this? I'm really glad I found this group..take care and be safe linda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Hi , I am sorry to hear this about Maddux. I don't know much about the condition but would recommend you visit the links has given you. Please keep us updated on Maddux. Dustie --- In Plagiocephaly , " amanda " <girlgukdtieufh@y...> wrote: > My name is . I posted here awhile back about my son Maddux > (now 4 months old). At the time I thought he had Plagio combined > with Tort. He had a well check on March 11 with a new more through > ped. He ordered an immediate CT scan of my sons head. We got the > results back on Monday and he was diagnosed with Lamboid > Craniosynostosis. We are going next month to a neurosurgeon at > Childrens Hospital in Oklahoma City. I know this is a forum for > Plagio but, I was wondering does anyone here know anything about > this condition? I have searched and read everything I can and still > have not come up with a straight answer. Everything I read is > conflicting. Thank you so much. > > Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Hi , My daughter didn't have cranio. but during her treatment for plagiocephaly I came in contact with many children who did. I'd like to share an experience I had in case it helps. 's doctor is a surgeon at the Yale Craniofacial center in Connecticut and when we went to our appointments there there were always several children in the waiting room who had had the operation to correct synostosis. I often spoke to their parents, and I hope you will find it comforting that I always came away from meeting them and their children thinking - wow - isn't it fantastic that these kids were able to have the operation to correct a serious problem and now look great and have normal head growth. I basically felt in awe of what can be done with modern medicine/surgery and could see how difficult it would be to face such an operation but how fantastic it is that once you get through it everything can be ok again. I hope you can get in contact with parents who have made it through the other side of this through the cappskids group that posted about. Finally, I wanted to ask: Do you feel confident in your pediatrician's diagnosis? Will the neurosurgeon be doing his own scans and diagnosis? Do you think a second opinon from a second neurosurgeon would be in order? Best Wishes, , mom to , tort and plag, DOC grad. --- In Plagiocephaly , " amanda " <girlgukdtieufh@y...> wrote: > My name is . I posted here awhile back about my son Maddux > (now 4 months old). At the time I thought he had Plagio combined > with Tort. He had a well check on March 11 with a new more through > ped. He ordered an immediate CT scan of my sons head. We got the > results back on Monday and he was diagnosed with Lamboid > Craniosynostosis. We are going next month to a neurosurgeon at > Childrens Hospital in Oklahoma City. I know this is a forum for > Plagio but, I was wondering does anyone here know anything about > this condition? I have searched and read everything I can and still > have not come up with a straight answer. Everything I read is > conflicting. Thank you so much. > > Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Hi , I'm so sorry to heat about Maddux's diagnosis. Here is a link to a really great Cranio group: http://www.cappskids.org/board/ I'm sure they'll be able to answer any questions you have. Please keep us posted. Maddux will be in my prayers. --- In Plagiocephaly , " amanda " <girlgukdtieufh@y...> wrote: > My name is . I posted here awhile back about my son Maddux > (now 4 months old). At the time I thought he had Plagio combined > with Tort. He had a well check on March 11 with a new more through > ped. He ordered an immediate CT scan of my sons head. We got the > results back on Monday and he was diagnosed with Lamboid > Craniosynostosis. We are going next month to a neurosurgeon at > Childrens Hospital in Oklahoma City. I know this is a forum for > Plagio but, I was wondering does anyone here know anything about > this condition? I have searched and read everything I can and still > have not come up with a straight answer. Everything I read is > conflicting. Thank you so much. > > Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2004 Report Share Posted March 25, 2004 Hi , I am so sorry to hear that! I see that gave you the info on the cranio group. I am sure they can answers your questions. Please keep us posted on Maddux. Hugs, --- In Plagiocephaly , " amanda " <girlgukdtieufh@y...> wrote: > My name is . I posted here awhile back about my son Maddux > (now 4 months old). At the time I thought he had Plagio combined > with Tort. He had a well check on March 11 with a new more through > ped. He ordered an immediate CT scan of my sons head. We got the > results back on Monday and he was diagnosed with Lamboid > Craniosynostosis. We are going next month to a neurosurgeon at > Childrens Hospital in Oklahoma City. I know this is a forum for > Plagio but, I was wondering does anyone here know anything about > this condition? I have searched and read everything I can and still > have not come up with a straight answer. Everything I read is > conflicting. Thank you so much. > > Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi ... im really sorry to hear about Maddux's diagnosis. When we first started to travel " this road " with one of our twins, Ignacio, we were also told by the CT result that he had lambdoid suture partially closed. My dh and I went to the internet and tried to get every possible information about the condition. To make a really long story short we consulted two neurosurgeons who told us that the CT was really poor and was not the best possible study we could have gotten (even though we did the CT at the radiology department of a children's hospital). Both doctors said that Ignacio did not have cranio... he had a moderate to severe case of plagio combined with tort. Also, Ignacio has his sutures impacted... I dont know if that is the correct term in English but it means that his sutures are downward instead of upward and, the lambdoid suture had one plateon top of the other. So we were really relieved it was not cranio. I would really recommend that you get, at least, two opinions from different specialists (neurosurgeon, cranio-facial surgeons, etc) because a synostosis of the lambdoid suture is really rare. One of the doctors tole me that this type of cranio alone, not combined with any other suture closed prematurely, was less than 1% off all cases reported each year. But, as I always say, hope for the best but prepare for the worst. If Im not mistaken, because of Maddux's age he will be a perfect candidate for a laparoscopic procedure. So you can also try to check that out. I hope everything comes out ok. Please keep in touch. Annie Mom to twins, Ignacio & San , PR --- In Plagiocephaly , " amanda " <girlgukdtieufh@y...> wrote: > My name is . I posted here awhile back about my son Maddux > (now 4 months old). At the time I thought he had Plagio combined > with Tort. He had a well check on March 11 with a new more through > ped. He ordered an immediate CT scan of my sons head. We got the > results back on Monday and he was diagnosed with Lamboid > Craniosynostosis. We are going next month to a neurosurgeon at > Childrens Hospital in Oklahoma City. I know this is a forum for > Plagio but, I was wondering does anyone here know anything about > this condition? I have searched and read everything I can and still > have not come up with a straight answer. Everything I read is > conflicting. Thank you so much. > > Oklahoma Quote Link to comment Share on other sites More sharing options...
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