Help VERY confused

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

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Help VERY confused

Postby piddmom » Wed Oct 21, 2009 12:01 am

So, my 3 year old had an MRI Sept 4th. MRI report stated Cerebellar Tonsillar Ectopia down to mid C-2 level. He has developmental delays, low tone, swawllowing issues, presumed headaches, stamina/endurance issues among a few other things!Our GI doc stated that his swallowing, oral aversions, choking and reflux is probably related to his Chiari.
So we FINALLY saw the neurosurgeon today, and during the appointment stated that his chiair is really only down to C-1, therefore is only a MINIMAL, barely meeting the requiremts for chiari classification, that there is plenty of room for his CSF, and that none of his symptoms could be caused by the Chiari. This doc could not give me an exact measurement of his chiari when I asked...

I then asked about a possible syrinx. (now mind you my son did not have a spinal MRI) He said no he absolutely does not have one. That it would be VERY rare to have a syrinx lower than what they saw on the brain MRI.

All that he reccommended was for us to watch him, no specific follow up, etc. And that this (meaning the Chiari) is not the cause of his "problems"

Should I be concerned? SHould I be trying to get another opinion? Unfortunately this guy is the only pediatric Neurosugeon in the state. Are there docs that will look at MRI's if I sent a copy of my sons' to them?

We are seeing a decline in my son's endurance, stamina, and muscle tone, so we are concerned.

Thanks so much....
Missy
Thanks so much...
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Re: Help VERY confused

Postby lttutrow » Wed Oct 21, 2009 7:45 am

Yes, in my opinion, you should be concerned about the consultation the neurosurgeon gave you. We found out after a year that we were not given the standard of care for a Chiari Malformation for our son, the nsg. had told us no full spine MRI was necessary. It definately is necessary, and is the standard of care, and when we finally had this done a year later by another nsg., the syrinx was found. Also, a tethered spinal cord can be a related condition that any child diagnosed with a Chiari Malformation should be checked for, which again underlines the necessity of the full spine MRI. Our second opinion nsg. told us that a nsg. not doing a full spine MRI when a Chiari is found really is malpractice, as there is no research to support that it isn't necessary.
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Re: Help VERY confused

Postby memom » Wed Oct 21, 2009 8:44 am

Hi MIssy -

I had a similar situation with my daughter who is 7. The first neurosurgeon we saw told us "chiari malformations are a variation of normal". He did not see any reason to do a MRI of the spine and sent us through all kinds of developmental test, occupational therapies, physical therapies, etc... none of which did a bit of good. Finally, when my daughter started having double vision and collapsing from leg weakness we sought another opinion. We found Dr. Keating at Children's National in Washington D.C. and were able to mail the first MRI for him to review and ended up having a full spinal MRI performed which revealed SM. Our daughter has CM 1.5 and SM.

I cannot urge you enough to get a second opinion ASAP! Look at the medical advisory board on this website to see if one of those doc's are close to you. We decided that traveling from Florida to Washington D.C. to see Dr. Keating was well worth it. He and the entire staff at Children's National are wonderful, they can take care of your child and your family too!

Good luck and keep us posted.

Memom
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Help VERY confused

Postby jupes » Wed Oct 21, 2009 9:33 am

Missy,

I agree 100% with the other replies. I would get a second opinion from a recommended expert. We can give you some names of experts closer to your state if you post what part of the country you live.

There are some other Peds experts you could attempt to contact in addition to Dr Keating. Many prefer to see you in person but it would be worth the travel to get expert care. If he is having symptoms and needs surgery, he is better off in "expert" hands rather than the hands of a less experienced NS. Some will try to work with your insurance and are use to seeing patients from out of state and different countries. A few will offer an opinion and direction if you mail the MRI films too!

Good luck!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Help VERY confused

Postby youngwife » Wed Oct 21, 2009 11:22 am

My vote is to ABSOLUTELY get a second or third opinion. I can't believe what that guy told you! :x And what if you didn't know any better???

YES! Find someone else ASAP! :|

Blessings,

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Help VERY confused

Postby piddmom » Wed Oct 21, 2009 1:43 pm

Thanks to all who have replied!!
Something did not sit right with me during this appointment. I don't get how radiology could say one thing and then the nsg says another with out showing me. UGH.

Do any of these other physicians require a referral to see them or send them and MRI?
Th reason that I ask is that we are seeking 2nd opinions for my boys immmunology and hematology issues, and the pediatrician is willing to do that referral but I don't know how willing she will be to do ANOTHER out of state referral. I'm beginning to think she will think I'm nuts if you KWIM?

Does anyone know where I can find articles to support getting a spine MRI and other associated problems with Chiari, that I could show my peditrician to give me some credibility.

We are traveling to CIncinnati for hem/immune stuff, so I could probably ask for neurosurge to see my son there. Does anyone know how they fare with Chiari?

Thanks again for you help, I may ttry to post his MRI images if I can here too.

Missy
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Re: Help VERY confused

Postby lttutrow » Thu Oct 22, 2009 9:29 am

I met several families via the internet that have used Cincinnatti for their child's Chiari, and they have been very satisfied with the care, but for the life of me, I can't think of the Drs. name!!! Perhaps someone else will chime in with it?? There are some that will agree to see them with just the radiology report and a copy of the MRI CD, but some do require a referral. I would hope that with your MRI report, your physician would understand your desire to have a second opinion, but I really do understand what you mean about that awkwardness. I went to college with my kids' primary care Dr., and still I got "the look" at first when we decided to pursue a second opinion. Have you read the asap booklet that is a free download from the mainpage? That might be helpful to share with your physician. Also, you can find research information at conquerchiari.org .
If you'd like to post the MRI pics, there are directions of how to post it within one of the moderator posts by Keesha at the top of the asap lounge.
Best wishes,
Lori
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Re: Help VERY confused

Postby jupes » Thu Oct 22, 2009 9:55 am

Hi Missy!

Some Doctors require a physician referral and others don't. If you contact their offices, someone will let you know what their referral policy is. I know Dr Menezes (Iowa) requires a referral and prefers to see you in person rather than just review MRI. I don't think Dr Keating requires a physician referral.

Dr. Frim (chicago) does not require a referral. Many have sent their MRI films to him for a second opinion.
dfrim@surgery.bsd.uchicago.edu
Office Phone: (773) 702-2123 Office Fax: (773) 702-3518
Office Postal Address:
David M. Frim, MD, PhD
University of Chicago Medical Center
5841 S. Maryland Avenue
MC 3026
Chicago, IL 60637

I know others have used Dr Luciano (Cleveland Clinic) and he is considered an expert. Check out some older posts discussing him!
STILL WAITING Postby SHANNON76 ยป Mon Feb 16, 2009 4:56 pm. Maybe you could PM one of the other parents from Ohio to get more info.

As for educational info- I downloaded material from here and the conquerchiari website and also had ASAP mail me some educational pamphlets. This has helped educate our doctors and others about this condition. I know how you feel about being labeled an "over protective" parent! :roll:

Good Luck!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Help VERY confused

Postby lttutrow » Thu Oct 22, 2009 10:00 am

I don't know why I didn't think of it before, but there is an Ohio support group at www.chiariansunite.org , and they can help you with names of nsgs. too.
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Re: Help VERY confused

Postby SamuelsMom » Thu Oct 22, 2009 9:23 pm

I agree with the second opinion. We go to Cincinnati Children's. My son does not have a chiari, he has an idopathic syrinx. He receives regular MRIs to monitor for changes. If you have any questions, feel free to pm me.
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