Chiari 1 Malformation 3 year old

[SweetBoyMom]

Hi,
Two days ago we found out my son has Chiari 1 Malformation 10 mm.  He has always been delayed in speech and language - so we don't really know if he has headaches or tingling in his hands and feet b/c he can't really tell us.  He also has dilated perivascular space above the parietal lobes, which I now have learned one controls language - so we are hoping this will help with his therapies.  His was found while doing an MRI looking for signs of a mini stroke.  

We are nervous.  We meet with the neurosurgeon soon, but in the meantime, I have been trying to read stories of others who have gone through this and their recovery.  So far, what I am getting out of some stories is how painful the recovery is, and it concerns me for my son.  So can anyone share their story - give me the honest truth - particulary anyone with a young child - how they handled it - recovery, etc..

Thank you!

[selmaS]

A shunt?..does he have hydrocephalus?

I went to The Chiari institute in NY and was very pleased...it is the NS that do not work with insurance at all,.and u may be able to get  ur insurance to cover if u can show that u need a specialist and u have none in ur area/???just a thought.

Most drs only check the cervical spine for a syrinx, but they can be found in the thoracic and lumbar areas as well.....
There is a good dr in ur area u may want to try...Dr Rosner...he is listed on this forum...well respected despite what the NC medical board has been doing to him.

Michael J. Rosner, MD, FACS, FCCM
Neurological Surgery
80 Doctors Drive, Suite 4,
Hendersonville, NC 28792-720

Check to see what insurance he takes and find out what u can.....I hear many many good things , so it is worth a look.

"selma"

[SweetBoyMom]

Selma,

The news was given to us by his developmental specialist, so he referred a lot of my questions to the nuerosurgeon, which of course, we have not met with yet.  He had a normal MRI of the head - and we were just lucky they looked at his neck.  I was told our next steps would probably be a shunt and a scan of his spine. As far as exactly what he has - I don't know at this point.  I have been reading the report, but still dont' understand everything - like "bilateral parietal lobe white matter dorsal to the ventricular atria" - I don't know what that means.  The report is in technical terms.

It does say "chiari 1 malformation with inferior displacement of cerebellar tonsils 10 mm. no obvious upper cervical syrinx seen".  He does not have symptoms of balance or weakness issues that I can tell.

I too am concerned about the nuerosurgeon being a Chiari specialist.  I really wish I could get him into the Chiari institute in NY, but they do not take our insurance - and it would cost so much money for us, money we don't have.

I am scared of surgery for him, so I will make sure all other is considered first.

Thank you!!
JM

[selmaS]

I understand and u r so right to be well informed...but, being the top NS of peds at Dukes is  still something u need to look at closely....u want a true chiari specialist.....or at least get a few opinions to figure which dr is the best for ur DS.....

Do u know if he has a CSF blockage?The delays most likely indicate that...but I was wondering if they told u about that or if he  had a CINE MRI?

And then of course there r related conditions, like a syrinx, tethered cord, Ehlers- danlos....and a few more.

Be sure ur DS is checked for everything related b4 u consider surgery.

"selma"

[SweetBoyMom]

Thank you!
We were informed today he will be seen at Duke Children's Hospital by Dr. Herbert E Fuchs, he is the chief of pediatric neurosurgery.  

Thank you for welcoming me!  I too wish it were for another reason, but at this point I am trying to educate myself before seeing the Dr.  I have already gotten one piece of advice off the board - about sleep apnea and chiari - so I will be asking about that.

I can't believe my sweet boy is going through this.

[selmaS]

Hi and welcome to the Chiari forum.

I do not have a child with this, but we do have a few members that do...and I am sure they will post some info to help u.

My main reason to reply was to welcome u here, even tho no one is happy for the reason u had to seek us out...support is needed to help us all ...and this is a very good place for it : )

Also, I would like to mention, be sure the NS u see is one that deals with chiari day in and day out...it is the best advice we can give....get multiple opinions and be sure the dr is well informed of chiari in pediatrics.....

We do have a thread with names of chiari drs, but u still have to research them to find the best dr for u.

Again, glad to have u join us, but not happy for the reasons.

"selma'