Guest guest Posted May 27, 2012 Report Share Posted May 27, 2012 Hi Amber, I'm not sure I've ever posted here before but my name is . My son (13) has Chiari and Pseudotumor. He was dx at 3 but didn't need the Chiari decompression until he was 9. We are also in Oklahoma! We live north of OKC. Dr. Rekate was our 2nd opinion when my was diagnosed at 3. (This was when he was at the Barrow Neurological Institute in Arizona) We chose to go with another Doctor, but sounds like you are getting two good opinions. If you ever have any questions about traveling out of state for treatment, just let me know! We have come across a lot of resources over the years. tnajk@... On Sat, May 26, 2012 at 8:49 PM, & AmberB < barnesfamily777@...> wrote: > ** > > > Hi, My name is Amber, and my 5 year old daughter, Kaylie was dx with > Chiari this past March. She currently has only had a brain MRI... but this > Tuesday she will have a full spinal and Cine MRI. They will be checking for > tether cord as well, as any syrinx. > How we found out: Kaylie has had frequent headaches for the past year... > and has the year has gone by, they have become daily. She also has daily > eye and ear pain. Her other symptoms are: she is light & noise sensitive, > sometime neck pain, VERY emotional, toe walker (not all the time... but at > least half the time), clumsy... she runs into things, she has a pinky nail > size spot on her back that has been there since she was born... it sit just > slightly left of her spine, and in the thoracic & lumbar area...this spot > is not seen all the time... it fades in and out... it will come up... get > real pink, then fade away... lasting for about a week. During this time she > complains of back pain. Kaylie has also started bedwetting. > We live in Oklahoma... I have 2 other children... 7 yr & 2yr. I do plan to > have them MRIed... I think my 7 yr old, probably has chiari as well... but > not as many symptoms as Kaylie. All three are toe walkers.. my 7 yr old is > the worst... she has gone through cast/braces.. and will walk flat > sometimes... but not all the time... before her casts/braces... she was > always toe. > > We currently have appointments with Dr Rekate & Dr Ben Carson in June. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2012 Report Share Posted May 28, 2012 Welcome to this group, where you will find great support and information. Best wishes in your journey to better health for your children. Peace & comfort be with you and yours Peggy ________________________________ To: Sent: Saturday, May 26, 2012 9:49 PM Subject: My Introduction!  Hi, My name is Amber, and my 5 year old daughter, Kaylie was dx with Chiari this past March. She currently has only had a brain MRI... but this Tuesday she will have a full spinal and Cine MRI. They will be checking for tether cord as well, as any syrinx. How we found out: Kaylie has had frequent headaches for the past year... and has the year has gone by, they have become daily. She also has daily eye and ear pain. Her other symptoms are: she is light & noise sensitive, sometime neck pain, VERY emotional, toe walker (not all the time... but at least half the time), clumsy... she runs into things, she has a pinky nail size spot on her back that has been there since she was born... it sit just slightly left of her spine, and in the thoracic & lumbar area...this spot is not seen all the time... it fades in and out... it will come up... get real pink, then fade away... lasting for about a week. During this time she complains of back pain. Kaylie has also started bedwetting. We live in Oklahoma... I have 2 other children... 7 yr & 2yr. I do plan to have them MRIed... I think my 7 yr old, probably has chiari as well... but not as many symptoms as Kaylie. All three are toe walkers.. my 7 yr old is the worst... she has gone through cast/braces.. and will walk flat sometimes... but not all the time... before her casts/braces... she was always toe. We currently have appointments with Dr Rekate & Dr Ben Carson in June. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2012 Report Share Posted May 29, 2012 My daughter also has chiari, was decompressed, and still has some of the symptoms that your daughter exhibits. She is a toe walker and so is my 5 year old son, which is scary. I have concern for both. We are getting Kirstie tested for EDS this coming September, and this is why it is worth it to see a chiari expert and not just a regular neuro, which we had no choice on. If you cannot, I cannot impress upon others the importance of checking on related to chiari syndromes and what not because many of them can sometimes explain some of the chiari symptoms and can explain why even after decompression they still have problems. My daughter had an atleast 5 inch syrinx so it was not hard to get a doc to do the decompression, but it was not needed to operate without a lot of her symptoms. We did the MRIs of the entire spine and brain as well which is really recommended. Thankfully, she did not have any other symptoms. Be your children's advocate and figure all this out early I say. This is our responsibility in my eyes. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2012 Report Share Posted May 30, 2012 Hi..Hope you get the answers you deserve,, The toe walking MAY point to tethered cord.. Please let me know if I can be of any help.. Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa My Introduction! > Hi, My name is Amber, and my 5 year old daughter, Kaylie was dx with > Chiari this past March. She currently has only had a brain MRI... but this > Tuesday she will have a full spinal and Cine MRI. They will be checking > for tether cord as well, as any syrinx. > How we found out: Kaylie has had frequent headaches for the past year... > and has the year has gone by, they have become daily. She also has daily > eye and ear pain. Her other symptoms are: she is light & noise sensitive, > sometime neck pain, VERY emotional, toe walker (not all the time... but at > least half the time), clumsy... she runs into things, she has a pinky nail > size spot on her back that has been there since she was born... it sit > just slightly left of her spine, and in the thoracic & lumbar area...this > spot is not seen all the time... it fades in and out... it will come up... > get real pink, then fade away... lasting for about a week. During this > time she complains of back pain. Kaylie has also started bedwetting. > We live in Oklahoma... I have 2 other children... 7 yr & 2yr. I do plan to > have them MRIed... I think my 7 yr old, probably has chiari as well... but > not as many symptoms as Kaylie. All three are toe walkers.. my 7 yr old is > the worst... she has gone through cast/braces.. and will walk flat > sometimes... but not all the time... before her casts/braces... she was > always toe. > > We currently have appointments with Dr Rekate & Dr Ben Carson in June. > > > > ------------------------------------ > > Please Visit Our Website at: http://www.chiariconnectioninternational.com/ > Lots Of Information That May Be Helpful > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.