Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 I found out that type 1 which is the one Logan has, is the easiest to deal with but all 3 types have to have surgery and that is making me nervous. I found this sight just in cas anyone is curious... It tells about it. THakns for all your input. > Hi, > My dd has a syrinx in her spinal cord, which is like fluid that is > collecting in the middle of the spinal cord, anyway, many times the > chiari malformation goes along with the syrinx. In my experience > orthos do not know as much about this, a pediatric neurosurgeon would > be the person to see about the chiari. This condition or combination > of conditions can cause scoliosis. I think that they say that the > chiari malformation can block the flow of cerebrospinal fluid, which > affects the spine. The amount of fluid in my dds spine has gone down, > but they monitor the situation with MRIs, she is due in July for the > next one. Surgery is done for some cases of this, I don't remember at > what point they do it or not do it. We were told our dd would have to > have decompression surgery for the syrinx if it got too big. > HTH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 , I think that it may have been Logan...(?) His Moms name is Jen. Jen recently sent the group an update on Logan, and I think his decompression surgery went well. The post was very recent, so you shouldnt have to go back that far. HRH Chiari malformation Hi,I am looking for the mom whose son had the Chiari surgery this summer. I will try to search the messages, but someone I know is looking for help with this as her son was diagnosed today. Plz, can I give her your email? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Hi Jen, That was me or rather my daughter Alison (16 mo) who has it. The MRI showed a very mild, they called it borderline Chiari Malformation. It measured at only 5 mm. They told me that she shouldn't have any problems or symptoms at all because of it. I hope they are right. _____ From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of jmdroberts Sent: Wednesday, September 13, 2006 8:30 PM infantile scoliosis treatment Subject: Chiari Malformation I just read someone's post who said their son??? had Chiari and was wondering if it is common in this site? Logan had his decompression surgery but I knew no one with it also in a kid. It is more commonly found in adults. Just curious Thanks! Jen 6, Logan 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 My son was 4 when he had his chiari malformation. As a result of it he has scoliosis. He is now 9 and wears a night brace for his scoliosis. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Hi Tammy, <<...and when he went in for his pre-op today the MRI results showed he had this.>> I'm sorry to hear Landon has Chiari. I know there are a few types of Chiari - most common are type I and II. This could very well be the cause of his scoliosis, or at least a big contributing factor. I'm glad they caught this now before it gets worse. There are varying degrees of symptoms in kids with Chiari. I suggest you talk with the ped. neurosurgeon about Landon's specific situation - many of the stories you hear on the internet are extreme. I hope Landon does well. Interesting the neurosurgeons are suggesting casting before a surgical release of the Chiari condition. I'm not sure casting would be beneficial prior to having the Chiari problem fixed. Interesting. Keep us posted. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. http://autos.yahoo.com/carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Hi Tammy, <<...and when he went in for his pre-op today the MRI results showed he had this.>> I'm sorry to hear Landon has Chiari. I know there are a few types of Chiari - most common are type I and II. This could very well be the cause of his scoliosis, or at least a big contributing factor. I'm glad they caught this now before it gets worse. There are varying degrees of symptoms in kids with Chiari. I suggest you talk with the ped. neurosurgeon about Landon's specific situation - many of the stories you hear on the internet are extreme. I hope Landon does well. Interesting the neurosurgeons are suggesting casting before a surgical release of the Chiari condition. I'm not sure casting would be beneficial prior to having the Chiari problem fixed. Interesting. Keep us posted. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. http://autos.yahoo.com/carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Hi Tammy, <<...and when he went in for his pre-op today the MRI results showed he had this.>> I'm sorry to hear Landon has Chiari. I know there are a few types of Chiari - most common are type I and II. This could very well be the cause of his scoliosis, or at least a big contributing factor. I'm glad they caught this now before it gets worse. There are varying degrees of symptoms in kids with Chiari. I suggest you talk with the ped. neurosurgeon about Landon's specific situation - many of the stories you hear on the internet are extreme. I hope Landon does well. Interesting the neurosurgeons are suggesting casting before a surgical release of the Chiari condition. I'm not sure casting would be beneficial prior to having the Chiari problem fixed. Interesting. Keep us posted. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. http://autos.yahoo.com/carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2011 Report Share Posted May 19, 2011 Hello, My son also has a chiari malformation. They would not cast him either until it was addressed by a neurosurgeon. As it turned out my son needed the decompression surgery at it was done @ 12 months old. He was then casted approx 6 weeks later. Do you already have a pediatric neurosurgeon in mind?? Where do you live? These docs that are experienced w/chiari are far and few between so don't be suprised if you have to travel. Let me know where you live as I know a few good docs. Hopefully surgery won't be needed! Please feel free to email me privately at missikay10@... if you would like to talk further. Best, mom to Isaiah Jenn Sedor <jennsedor@...> wrote: >Greetings, > >Thanks for all your responses about my son - they have been so helpful. > >His surgeon called yesterday with news about his MRI - He has a type 1 chiari malformation (which I googled relentlessly of course) > >The surgeon won't consider casting until decompression is off the table. > > >Does anyone else here have experience with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Jenn, My son has Chiari and infantile scoli. He was decompressed at 18months and then casted. He is now almost 6yrs old and doing fantastic. You can read his story on the isop website under congenital stories Devyn's story. If you have any questions please. Feel free to ask. You can email me privately if you would like. Rochelle > > Greetings, > > Thanks for all your responses about my son - they have been so helpful. > > His surgeon called yesterday with news about his MRI - He has a type 1 chiari malformation (which I googled relentlessly of course) > > The surgeon won't consider casting until decompression is off the table. > > > Does anyone else here have experience with this? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Hi group, Has anyone had a vertical MRI for Chiari Malformation? Has anyone had a supine MRI for Chiari M. that SHOWED the malformation? Has anyone been diagnosed with Chiari and had surgery? Any ME/CFIDS resolution? Marti Quote Link to comment Share on other sites More sharing options...
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