concerned mother of three

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

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concerned mother of three

Postby Firecracker » Sun Nov 04, 2007 12:19 pm

Hi! Let me introduce myself, I'm a mother of three two have been diagnosed with Chiari type 1. My daughter who is now 10 had the decompression surgery at age 6, she is doing fine now. She has other health issues supposingly not relatted to the Chiari. That is a whole other story. Now my oldest son 12yrs old has been complaining of headaches, had an MRI Thursday that evening the doctor called and said he two has Chiari Type 1 with a reduced flow to the dorsal to cord. I am not sure what this means other than it sounds like my daughter situation where the spinal fluid was not getting to the brain. He is scheduled to see the NS at Childrens Hospital in Columbus [Dr. Kosnick same one that did my daughters surgery], on Tuesday Nov. 6th. I have been sick to my stomach worried! I have an 18 month old son also, both he and my oldest son has the Sacral dimple. My oldest son had the surgery on the dimple at age 3. Does anyone know if the sacral dimple is somehow relatted to the Chiari? We have a cousin with the sacral dimple also. I trust the NS we are going to, but Have read alot of the stories on here and wonder if I should be going to one that specializes in Chiari. Also has anyone had the same reading on the MRI [Chiari type 1 w/reduced flow to the dorsal to cord]. What does this mean? Now I am worried for my youngest [18 month old]!
Firecracker
 

Postby brianfsmom » Mon Nov 05, 2007 8:15 am

Hi Firecracker

Sorry to hear about the results your son received - that's never anything anyone wants to have to deal with even once, and then again with another child. However, there are plenty on here who have done so, and hopefully they will respond!

I wanted to reply about reduced flow - since the CSF flows all around the spinal cord, it sounds like they are reading this as partially blocked. Perhaps there is fluid getting by in front and not in back? Either way, I wouldn't worry about the specific terminology. It sounds like a lot of words to say that the chiari is interrupting the flow of CSF.

As for the sacral dimple, they can sometimes be linked to spinal cord abnormalities, such as tethered spinal cord. Have the doctors ordered spinal MRIs along with the brain MRIs to look for a syrinx or tethered cord? I think that TCI (the chiari institute) has some informative videos on their website if you want to learn more. You can just google them and their site pops up.

Good luck with the appointments. I would ask the doctor about the 18 month old and the dimple. He can give you better advice. Hang in there!
brianfsmom
 
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concerned mother of three

Postby Firecracker » Mon Nov 05, 2007 9:07 pm

Brianfsmom, Thank you so much for the information and your concerns. They have not that I know of done a Spinal MRI along w/brain MRI syrinx or tethered cord, but I will ask about that tomarrow. I am so glad I watched the extreme makeover show and found this sight. Its nice to know that there are people you can talk to that understand. Thanks again! I will let you know what the out come is.
Firecracker
 

Results w/ns today

Postby Firecracker » Tue Nov 06, 2007 9:14 pm

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 midline 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 sinused 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. 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. I do not understand some of the MRI findings should I be a little more concerned? I am glad were not talking surgery but I still feel we are not totally out of the dark! Sorry for the long posting and thanks for listening.
Firecracker
 

Postby Janice » Wed Nov 07, 2007 9:33 am

Hi Firecracker,

It's good news that surgery is not needed yet. Let them keep an eye on your child and most of all listen to any new changes he reports and be observant of anything that you feel should be reported either to the NS, NL or PCP. Whichever doctor will be managing his care.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Postby brianfsmom » Wed Nov 07, 2007 8:05 pm

Hi Firecracker,

My opinion based simply on three years of reading these boards, and my own experience: the waiting time will not hurt your son. They can only comment on the spinal cord down to the level of C3 because that's probably as far as they can see with the brain MRI.

If the CINE MRI showed reasonable flow, then there may well not be a syrinx. Is your son's neurological exam normal? Did you ask about the sacral dimple?

I'm not sure about the anti-inflammatory but if anything would work other than surgery it is worth a try. December 11 is not that far away if this is to be his next exam.

Otherwise, if you can afford it and you would feel better, seek a second opinion. No harm in doing so other than on the pocketbook. We got several opinions, I always think everyone should.

Good luck! It sounds like that was pretty good news, maybe it will even help him! Please do keep us posted.
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm

concerned mother of three

Postby Firecracker » Wed Nov 07, 2007 9:36 pm

Hi brianfsmom, So glad to hear back from someone. Yes I did ask about the sacral dimple and the NS said its not relatted to the Chiari. He also said that the chiari is not heriditary, but its a little hard to believe when you have two in the family diagnosed with it so far. You asked if his neurological exam was normal, the only exam he gave him was to jump on each foot, looked in his eyes and asked him where the headaches were. I guess it was normal because he was able to do it. As far as getting a second opinion, theres no issue with money we have two insurances what one doesn't take care of usually the other picks up. We sure are thankful for that! I don't know what we would do if we did not have both because my daughter has alot of health issues, lets just say we own a few wings at childrens hospital they always have our room ready for us. Thanks for listening
Firecracker
 

Postby brianfsmom » Thu Nov 08, 2007 7:50 am

Hi Firecracker,

If you can afford it then you should try to get another opinion from someone who is recommended by a chiari patient.

As for the exam, that's what got my son diagnosed. He does have the syrinx, though, and it did show up on the cervical spine MRI. When he had the cervical spine MRI they saw the top part of it in the thoracic spine, and the doctor sent him back for the whole spine series.

At minimum, I think all chiari patients should have the brain and cervical spine MRI, but what do I know ;-)

I just wanted to explain the exam since it was a critical reason the MRIs were ordered: he was found to have spasticity in his legs and hyperreactive reflexes. He also had numbness in his hands, but that's self-reported. Without having checked the reflexes and muscle tone, the doctor would never have known about these two symptoms. They got better after surgery, too. We pray they will stay gone!!! It's been nearly three years since he was diagnosed.

Good luck. But it does sound like you have time to wait and think about things.
brianfsmom
 
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Joined: Thu Jul 26, 2007 2:31 pm

Postby angie7 » Thu Nov 08, 2007 12:26 pm

I posted on about this on your other thread "Results from N/S"......
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
 
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concerned mother of three

Postby Firecracker » Thu Nov 08, 2007 7:56 pm

Thank you so much angie7 and brianfsmom, your info. has been very helpful. I was wondering if TCI would take a look at a faxed copy of the MRI results before we made a trip there? I'm willing to do what it takes to make sure my son and daughter are going to be fine.
Firecracker
 

Postby angie7 » Thu Nov 08, 2007 10:28 pm

Like I said in the your other post, Dr Menezes and Dr Frim both specialize in peds, if they are closer, I would recommend them...
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

Postby brianfsmom » Fri Nov 09, 2007 8:00 am

Hi Firecracker

A good neurosurgeon won't even bother with the radiologist's report. S/he will want to see actual films. My son's neurologist doesn't even agree with the printed report half the time, and his surgeons NEVER looked at it.

Many years ago I think TCI would review films prior to seeing a patient, but from what I read here they are just too busy to do that now. Also, they won't accept your insurance, you will have to pay and be reimbursed, and it may be more than your insurance deems reasonable and customary, so you might not get it all back.

I'd agree with Angie, if there is someone else closer, you're better off to start there. Your son's case actually sounds fairly straightforward, you just need someone with a good background. Where do you live?

Good luck!
brianfsmom
 
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Joined: Thu Jul 26, 2007 2:31 pm

Postby Firecracker » Fri Nov 09, 2007 12:07 pm

Angie7 and brianfsmom, Hello glad to hear from you guys again. It definitly sounds like I need to pick either Dr. Menezes or Dr. Frim. I live in Ohio, so I pretty much in between all of them. How would I get ahold of them? Thanks again for all the help
Firecracker
 

Postby angie7 » Fri Nov 09, 2007 12:15 pm

Dr Frim's info
The University of Chicago
MC-4066
5841 South Maryland Avenue
Chicago, Illinois 60637
773-702-2475
773-702-5234 (FAX)
dfrim@peds.bsd.uchicago.edu

Dr M's info
Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616
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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