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known 23mm CM1

initial diagnosis in 2014- have been stable. ~3 months ago began to develop upper/mid back pressure, unable to lie flat, intermittent pareasthesia of upper extremities, leg heaviness at nightime- some symptoms improved with gabapentin use- recent mr shows stabe mr head and no evidence of syringomyeloma on C or T spine MR.
Anyone ever experience similiar symptoms? Regular neuro has no idea what to make it- sending for another opinion- will see my 4th NS
1 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
May I ask,  did you also have a MRI of your Lumbar spine? Syringomyelia can form anywhere in the spine, so  all  areas  should  be checked.
Next, Did they do a CINE MRI?
And were ALL related co-morbid conditions  ruled out?

Have  any  of  the NS's you have seen ,  been  true Chiari specialists?
5 Comments
Thanks for your reply.
I have had a lumbar spine Mr- 2018- I saw a chiari specialist at Johns Hopkins-that’s who ordered the lumbar and I had a Mr brain with csf flow
In past  years, JH  was  not  considered  as  they did not have Chiari  listed as a specialty  ....I am not sure when  that changed.In looking over their site, no mention  of co-morbid conditions  like Ehlers-Danlos  were mentioned.....

Since with Chiari there is  a boatload  of other conditions and issues going on, you want the Dr to be into research of these conditions,,,,willing to collaborate with other Chiari  specialists.  

So,since  you  had a CINE did you have an obstruction? A retro-flexed odontoid? Impingement of the brain stem>?

When was your last MRI.....I have heard others that in 6 months or less they had a significant change,,,,so when ever you notice a change like this  you should contact  your Dr for further studies.
No retro flex of ondontoid or impingement of brain stem- my tonsils are elongated and “lopsided” one side hangs down further than the other.
My last Mris were 1 month ago- had  brain, Cspine and tspine-

NS I saw was in the Chiari clinic that was her speciality along with arterovenous malformations/aneurysms.
I have contacted my neurologist-she’s the one that ordered one of the Mr’s and now has referred me to a tertiary institute because she says they are stable meaning no syrinx found-and she can’t explain my symptoms. I am awaiting that consult
Ok gotcha.....
So all MRI's but the Lumbar region.....
Any testing for Ehlers-Danlos?...POTS?....
My worst symptoms happened just 22 days after my regular annual MRI. So symptoms are the most important. Selma is excellent resource.  I have been through the t spine chest symptoms, head pressure and more recently leg issues. Diagnosed at age 60 stable 10 years and then...  
So very interesting but challenging.  Thankfully no comorbidities.
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