My 17 year old son with special needs was just diagnosed with Chiari last week it’s been a scary
week for us. We are waiting on a neurosurgeon consult now but we heard the wait will be quite long.
His MRI report states he has a 47 mm cerebeller tonsil as well as a 8 mm syringomyelia.
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Mom, glad you found us. Sending prayers for your son and family- how can we support you? Let us know.
Jenn
My son started having head aches about 5 months ago along with vomiting at times. They range from just head aches to migranes I didn’t think much of it at first but he started missing a lot of school. I took him to my gp and he suggested a MRI which he had June 14/14 and we got results back last week. The results showed he had 47 mm Chiari as well as a 8 mm syringomyelia and it suggest he see a neurosurgeon and have a c spine MRI.
My son is 17 and has MID and ADD so he may look 17 from outside but inside hes not 17 emotionally or mentally.
Where I we are one week into this is he has a C Spine MRI booked for Aug 4th and referral sent to pediatric neurosurgeon at sick children’s hospital in Toronto.
So now it’s a waiting game.
So sorry to hear of your sons diagnosis, Nina. I will keep you both in my thoughts.
Nina, my (unsolicited)advice:research the types if Chiari decompressions and tag-along-diagnosis that are frequently seen…
Does this NS perform:
**a duraplasty -why or why not?
A laminectomy
A tonsillectomy -why or why not?
**Plate placement to back of skull- why or why not?
These are all performed or not performed based on the preference of each NS. For example, If an NS does not do the duraplasty because his patients have a high incidence of CSF leaks when he does…move on to to another NS!
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Dysautonomia
Tethered cord syndrome
Sleep apnea
Jenn
Looking at that MRI and you describing his symptoms, let me make a few suggestions.
If you are already getting a cervical spine MRI, ask if you can also have a thoracic and lumbar MRI added. I suspect, looking at those images, the syrinx will go below the cervical level and the thoracic and lumbar MRIs will allow for following the syrinx and rule out any associated pathology(tethered cord or other spinal cord anomaly).
While the above questions are important, you are in a little of a time crunch. The Sick Kids team is among the best in Canada. You want to see them. Their age limit is 18 for new patients http://www.sickkids.ca/AmbulatoryClinics/First-Time-Users/General-Referral-Guidelines/index.html
My wife and kids are Canadian citizens(dual citizens). I know that Canadian system as well as a foreigner can. Contact your referring MD, ask for the above studies, do your homework so you can be an advocate for your son(coming to this site is a good step), and keep moving forward.
While you are right, it is a waiting game, you don't want your son to suffer in the meantime or him to age out of Sick Kids.
Ty all so sorry it taken so long to reply but its been a crazy past month.
So my son has had a c spine done and today his T spine on Wednesday he sees a NS at Sick Childrens hospital and his lumbar Mri on the 26th.
Nervous but happy his neurosurgeon appointment is just 2 days away, wrote out his medical history, questions to ask and his MRI cds ready to go. His C spine MRI showed that his syrinx is 6 mm wide by 16 mm long and like the first his tonsil herniation is 47 mm.
Wish us luck please.
