Results w/NS

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Results w/NS

Postby Firecracker » Wed Nov 07, 2007 10:48 am

Hi everyone! I just postted on here the other day with concerned mother of three. Here is what the NS had to say! First off the results of the MRI on the brain no contrast findings: the following pulse sequences were obtained: sagittal T1, fast spin echo T2, and 2D cine phase contrast through the foramen magnum. Additionally, axial proton density, T2, and coronal FLAIR imaging were performed. No hydrocephalus. Normal gray and white matter signal on all pulse sequences. No abnormal extra-axial collections. Patient does have a Chiari I Malformation with 9mm of cerebellar tonsillar ectopia. Cine phase contrast images show normal flow ventral with the cord with reduced flow dorsal to the cord. I do not see significant tonsillar motion with the onset of systole. The upper cervical cord is normal to the level of 3C without syrinx. Other medline structures are normal. The visualized portions of the paranasal sinused and mastoid air cells are free of disease. When the NS seen my son he asked him where the headaches were and had him jump on one foot. He said the headaches could be comming from the crowding in the sinuses and prescribed him an antiflamitory IC CYPROHEPTADINE. He did not want to rush into surgery with this and said he had lots of room back there. I asked him if he was going to do a MRI of the spine and he said not right now. He wants to see him when I go back with my daughter for her yearly MRI on the 11th of Dec. {she had decompression in 2004 when she was 6yrs old}. Please help I'm not sure what to do at this point. My son has these headaches 3 or 4 times a week, numbness in hands and feet, and has always struggled in school with motor skills and reading w/comprhension. I do not understand some of the MRI findings should I be a little more concerned? Do they always do a Spinal MRI w/brain MRI when they diagnose you with Chiari I? They did with my daughter and it was'nt till they did the spine that they knew she would need surgery and she did'nt have hardly any of the symptoms. I am glad were not talking surgery but I feel we are not totally out of the dark! Sorry for the long posting and thanks for listening.
Firecracker
 

Postby angie7 » Thu Nov 08, 2007 12:19 pm

Honestly, a 9 mm herniation is rather large. Most specialists in CM will recommend surgery for someone with this size herniation and the fact that he is having symptoms. It is good that he doesnt have a syrinx yet, but the longer the herniation is allowed to stay there, it will continue to crowd and can cause a syrinx. Once a syrinx starts to form, the nerve damage will take hold. The MRI stated "reduced flow <of csf>", that alone can cause a syrinx.

In my opinion, you need to get him to a CM specialist ASAP. They are the true experts in this disease and know the ins and outs of this disease. Where are you located? Here are few that highly recommend: Dr Oro in Colorado, Dr Frim in Chicago, Dr Menezes in Iowa and TCI in New York. Travel is usually a definate with dealing with CM. I live in Indiana and travel to Colorado to see Dr Oro, but it is worth every thing to see an expert.

ETA: I just wanted to add that most doctors dont reconize CM as being a problem, when in fact it is. I was told by the #1 NS in my town that I didnt have CM. I traveled to Dr Oro shortly after that and was dx with CM and found to have no flow of csf to my brain. If I would have listened to the NS in my town, I could have died. So just understand that we dont recommend specialists just b/c, we recommend them b/c they understand that this disease is very serious.....
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

results w/ns

Postby Firecracker » Thu Nov 08, 2007 8:11 pm

Hi Angie7, Thanks for the info., When I seen the MRI results I also thought a herniation of 9mm seemed high, and also the reduced flow but he is actting like its not a big deal. I have talked with my husband and we would like to get a secound oppinion. I think I would like to try the TCI but as I postted on the other site [concerned mother of three], do you think I could fax a copy of his MRI results before we seen them?
Firecracker
 

Postby angie7 » Thu Nov 08, 2007 10:26 pm

I have never been to TCI but I do know that the other specialists do want the MRI's before an apt is made, so I would think TCI would do the same. I would give them a call and make sure....

I know that Dr Menezes in Iowa and Dr Frim in Chicago specialize in CM/SM peds and they are both excellent doctors. Are either of them closer to you?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida


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