need reassurance

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

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need reassurance

Postby momof477 » Mon Jun 15, 2009 3:09 pm

I am new. My son (7) was dx'd with CM1 2 weeks ago. He seized twice at school back in Jan. After going through specialist after specialist, we were finally at a neurologist. He ordered a MRI which was the only thing left to do and it was found. We just saw the neurosurgeon this morning and we were told, that with how far his his down, that his symptoms WILL get worse. But we were told, "lets drag our feet on this and wait for the symptoms to get worse, which they will with him."

Right now he has severe headaches at least 4 times a week, his balance is WAY off while doing things (but wasnt bad during the neuro exam). I dont know.... I really dont want him to have surgery again. He has already been through enough (cancer treatment when he was 2). But I just cant let him sit and suffer with this till the dr "feels" it's bad enough. We did get our insurance to put through another referral for us to get a 2nd opinion. But down here in New Orleans (and in the deep south in general) it's REALLY hard to find a NS that takes our insurance.

I guess I am wondering if you would be doing the same as us. Or am I just really over reacting to this?

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Re: need reassurance

Postby Sara » Mon Jun 15, 2009 3:38 pm

yes you need a second opinion and if at all possible,try to get to the annual conference in July at ASAP. You will see all the experts all at once and find out how this situation should be handled. meanwhile, watch this video which might help
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Re: need reassurance

Postby jupes » Fri Jun 19, 2009 12:51 am

Hi Donna and Welcome!

Its hard to see our kids go through this and I agree that seeking another opinion from an expert is a good idea! There are some experts that will review your case and MRI films without you having to travel. Many others on here have done this. This may be a good start and help give you some direction without having to get insurance approval! Many of these experts will be speaking at the ASAP conference in Wisconsin so if you can come that would be great! Here are some names of Peds experts you could contact. Dr. David Frim University of Chicago, Dr Jerry Oakes University of Alabama, Dr. George in Texas, Dr Menenzes in Iowa and The Chiari Institute in New York .

Keep educating yourself and explore the articles and educational videos on this site. The Chiari Institute website has some great videos too! I found this all very helpful when my daughter was first diagnosed.

Hang in there and keep being a good health advocate for your son!

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: need reassurance

Postby Hope143 » Wed Jun 24, 2009 10:37 am

Hi Donna,

YOU ARE NOT OVERREACTING!!! Please listen to your instincts, mother's especially know their children.

We were basically in your shoes last March 2008. Told the same thing, very big herniation, 28 mm but lets wait a month. It was crazy. My son was heading towards paralysis. The surgery exactly 4 weeks later made a difference but didn't resolve everything. We went for a 2nd opinion because my son's NS started to say things like "his symptoms are psychosomatic" when he wasn't improving as much as he would have liked. We quickly learned his "ego" was too big for us. He wanted our son to fit into his 96% success rate. This PO'd my hubby big time and my hubby told him where to put his stats. TCI was very knowledgeable and helpful and we got a new dx of cm/sm and tcs. Alex was now really hurting and could barley walk (Oct 2008) and we were told to wait until he got worse. We were floored that this was the acceptable methodology used for these conditions. We'll I've never heard of a heart specialist saying "let's wait until you have a heart attack" before we can help you.

My husband is a chiropractor, a fitness expert and holistic wellness practitioner and he was going crazy with the lack of concern, the differing opinions and the lack of basic fundamental principles used for proper diagnosis and treatment plans. He took many neuro courses and knew that you do not wait until there is nerve damage or even the possibility of nerve interference if the problem is structural. My husband was the first to dx tethered cord in our son but our first NS totally disregarded my husband's opinion. That is why in our research we chose someone outside of the US and outside of the lacksidasical attitude held by these NL's, NS's with regards to these conditions. Dr. Royo in Spain has the philosophy that if you wait you will incur more damage. You need to fix a leaky dam or the dam will break.

Get more than one opinion if the problem is serious and is effecting your childs physical body, the ability to walk, see, feel, think, breathe, swallow, etc. These are real serious symptoms and the more the disease progresses the more challenges your child will face recovering from his challenges. As Jupes says the education is invaluable and the docs she mentions are tops in their fields.

May God give you the wisdom to make wise choices and find advocates for your son!
To support and guide my Magnificent Teen to reach his highest potential and overcome his health challenges!
28mm CM, 13mm syrinx, TSC, lymes, decompression, crainectomy, laminectomy, TC untethering in Barcelona, Spain. Better days ahead!
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Re: need reassurance

Postby CamsmomKelly » Wed Jun 24, 2009 1:37 pm

Im agreeing too!! Get that second or third opinion. Dr Frim looked at my sons MRI's and another local neruosurgeon. IM not so sure about the sit and wait theory if symptoms are showing you need to react. My son unfortunately has some permanent damage from his syrinx. NOT TO SCARE you about that because of course everyone is different with symptoms and such. I seen you said your son has Chiari, does he have a syrinx? The doctor said his symptoms will progress then IM at loss what they want you to wait for :roll:
mom of Cameren 11 yrs. old
Chiari,retroflex odontoid,syringomyelia,scoliosis
Chiari decompressions 6/2005,5/2006
Syringopleural shunt 6/2009
Boston Braced off & on 6.5yrs
scliosis surgery- soon
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