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6-7mm tonsillar descent probably Chiari 1 on mri scan

Hi. My daughter has had an MRI scan for headaches and visual field problems which shows a 6-7mm tonsillar descent probably Chiari 1. She has been referred to neurology and neurosurgery and when chasing these referrals both services have a 22-26 week wait. I’m thinking of taking her to see a Chiari specialist privately as I don’t want her to wait that long but not sure if it’s a neurologist or neurosurgeon who would be best to see? Should this referral be urgent? Any help greatly appreciated
3 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

No, in fact unless she is having breathing issues, I would take my time to find the right Dr...this is KEY !!! There are Drs that may be willing or offer to do surgery BUT make sure they are true Chiari specialists. It is also very important that they check and rule out ALL related conditions and the first one since she is a child is to make sure she does not have a breathing issue like sleep apnea.Her  PCP Dr should be able to RX a in home sleep study...NovaSom is a company that does these studies in the home which makes it easier on the subject.....and it is over 3 nights which is a better check with more reliable results.

Drop attacks are something to want to rush into seeing a Dr...but for headaches and visual issues see the Drs and see several to get the right one....see a neuro optho for her visual issues as it can be Chiari related....and can affect the optic nerve....rule it out....

Getting into a true Chiari specialist can take even longer then the wait you have now....as for which to see...most Chiari specialists are NS and have a NL that works with them.....the NL does the diagnosing....while the NS does the surgery....with Chiari surgery is not a cure and sometimes surgery can cause more issues then one had prior.....so nothing to rush toward.

Keep track of new symptoms and keep her Drs advised.
Avatar universal
Thank you for you swift reply. Really helpful
Avatar universal
So I don't really have an answer, but I want to tell you you're not alone. My son has Chiari 1.
Personally 22 weeks seems outrageous to wait for any kind of answers. Call around see if you can get in somewhere else.

A bit of a time frame for us: In about January we talked to the Peds about his head-aches. By February we saw a Neurologist. April was his 1st MRI- showed signs on Chiari. May we met with the Neurosurgeon. July we had the next set of MRI- found out how much his herniation is and went over all symptoms. Now we are probably looking towards surgery.

The waiting game is the worst, but I would not wait that long to even see a neurologist. Maybe talk to the Pediatrician about getting  a referral to someone else or pay out of pocket if that's an option.
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