We went today and got the results for my sons MRI's. He does have a 2 mm herniation Chiari which the NS doesn't think warrants any treatment at this time. He wants another MRI done in a year to check for progression. But on the other hand he does not have TCS!
Mommy came home, took a valium and relaxed for the first time in months! Thank you to everyone who has kept him in their thoughts and prayers.
Good News! How old is your son?? My daughter has Chiari's too and we are anxiously awaiting our appointment with the neurosurgeon-though I already know she has a 10mm and 6 mm herination and mild restriction of CSF flow and moderate crowding. I don't know what our NS will want to do or say....where did you go? We are going through Cincinnati Childrens Hospital.
Stephanie, he is 3 years. How old is your daughter? He is going to Dr. Moriarty in Louisville, KY. He's with Norton Neuroscience and Kosair's Children Hospital. What symptoms does your daughter have?
Stephanie said:
Good News! How old is your son?? My daughter has Chiari's too and we are anxiously awaiting our appointment with the neurosurgeon-though I already know she has a 10mm and 6 mm herination and mild restriction of CSF flow and moderate crowding. I don't know what our NS will want to do or say....where did you go? We are going through Cincinnati Childrens Hospital.
Caroline is 18 mths old. The Chiari was found on her MRI when she was 11 mths but was missed that time around and it wasn't until there was a peer to peer review done on the MRI that they found it....so we found out she had it when she was 14 mths old. She is fussy sometimes for no none reason ( I am thinking headaches) She is clumsy, she has a hoarse voice and swallowing issues. She has unexplained seizures also. Her right tonsil is 10 mm and her left tonsil is 6 mm. She has mildly restricted CSF flow and moderate crowding at the craional junction. Her right tonsil extends to her C1. (I know all this only from her last MRI the Cine MRI from August).
So glad to hear that your son's visit went well and that he doesn't have TCS!
Oh Stephanie I am so sorry to hear this. She is so little. I know you have to be worried out of your mind. Are they planning to do surgery any time soon?
Stephanie said:
Caroline is 18 mths old. The Chiari was found on her MRI when she was 11 mths but was missed that time around and it wasn't until there was a peer to peer review done on the MRI that they found it....so we found out she had it when she was 14 mths old. She is fussy sometimes for no none reason ( I am thinking headaches) She is clumsy, she has a hoarse voice and swallowing issues. She has unexplained seizures also. Her right tonsil is 10 mm and her left tonsil is 6 mm. She has mildly restricted CSF flow and moderate crowding at the craional junction. Her right tonsil extends to her C1. (I know all this only from her last MRI the Cine MRI from August).
Thank you Beeba and Anglyn. I am very very relieved by the test results. I know we have to monitor the Chiari, but it's nice to know he doesn't have to suffer through a surgery right now.
I am not sure at all about surgery. We don't see the NS until 10/31. It was originally schedulded for 8/26 but we were in the hospital dealing w/a MRSA skin infection she somehow got....we will have to see what the NS recommends. My family dr thinks they will do a wait and see appraoch....but she actually knew nothing about the decompression surgery at all-she was thinking a shunt when I said surgery LOL! She is hitting all her milestones right now so I am just not sure. I would like a sleep apnea test and a swallowing test to help make my mind up about surgery. What makes me wonder if they will want to do surgery is she does HAVE some CSF blockage.....
Jessi Linn said:
Oh Stephanie I am so sorry to hear this. She is so little. I know you have to be worried out of your mind. Are they planning to do surgery any time soon?
Stephanie said:Caroline is 18 mths old. The Chiari was found on her MRI when she was 11 mths but was missed that time around and it wasn't until there was a peer to peer review done on the MRI that they found it....so we found out she had it when she was 14 mths old. She is fussy sometimes for no none reason ( I am thinking headaches) She is clumsy, she has a hoarse voice and swallowing issues. She has unexplained seizures also. Her right tonsil is 10 mm and her left tonsil is 6 mm. She has mildly restricted CSF flow and moderate crowding at the craional junction. Her right tonsil extends to her C1. (I know all this only from her last MRI the Cine MRI from August).
Well I'm not surprised that her PCP didn't have a clue what you were talking about. Most PCPs don't. I got lucky with mine though, b/c I'm not the first Chiari patient she has had. I will be praying that they can hold off a bit. From my experience, surgery is enevitable, but the longer they can hold off, the better it will be for both of you, as long as it doesn't cause her to get worse. But they look at the size of the herniation, the csf blockage and the range of and degree of symptoms.
Stephanie said:
I am not sure at all about surgery. We don't see the NS until 10/31. It was originally schedulded for 8/26 but we were in the hospital dealing w/a MRSA skin infection she somehow got....we will have to see what the NS recommends. My family dr thinks they will do a wait and see appraoch....but she actually knew nothing about the decompression surgery at all-she was thinking a shunt when I said surgery LOL! She is hitting all her milestones right now so I am just not sure. I would like a sleep apnea test and a swallowing test to help make my mind up about surgery. What makes me wonder if they will want to do surgery is she does HAVE some CSF blockage.....
Jessi Linn said:Oh Stephanie I am so sorry to hear this. She is so little. I know you have to be worried out of your mind. Are they planning to do surgery any time soon?
Stephanie said:Caroline is 18 mths old. The Chiari was found on her MRI when she was 11 mths but was missed that time around and it wasn't until there was a peer to peer review done on the MRI that they found it....so we found out she had it when she was 14 mths old. She is fussy sometimes for no none reason ( I am thinking headaches) She is clumsy, she has a hoarse voice and swallowing issues. She has unexplained seizures also. Her right tonsil is 10 mm and her left tonsil is 6 mm. She has mildly restricted CSF flow and moderate crowding at the craional junction. Her right tonsil extends to her C1. (I know all this only from her last MRI the Cine MRI from August).