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Old 09-07-2012, 09:30 AM #1
llhoover llhoover is offline
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Join Date: Jun 2012
Posts: 6
10 yr Member
llhoover llhoover is offline
Junior Member
 
Join Date: Jun 2012
Posts: 6
10 yr Member
Default ? on developing a syrinx...

Quote:
Originally Posted by dtwaitmh View Post
Yes you can develop a syrinx that quick and if so that usually means surgery is not an option anymore it is a must unfortunately because if left to long it can do even more damage and possibly paralyze you etc. etc. Have you been checked for EDS (Ehlers Danlos Syndrome) which is seen a lot in combo with chiari? Also what about CCI (cranio-cervical instability) which is caused by EDS and you have to do a MRI preferably standing but can do one sitting just not as accurate. Also TC (tethered cord) and retroflexed odontoid bone? Please feel free to ask me anything. At Dallas Neurosurgical there is Dr. Jackson and Dr. Denning that a lot of people said they liked and had surgery with. Do you not qualify for Medicaid since you are not working? Also join the Facebook groups there are a lot of people on their that have been to doctors. I am in TX too and it took me 12.5 years to get diagnosed and I had to fly to NY to do that so I completely understand how frustrating and disheartening this is. Feel free to contact me anytime. I am also a member of the Yahoo groups but haven't been theirs in awhile just FB right now. Take care and don't hesitate to contact me.
I have a question regarding your statement about being able to develop a syrinx after being told by a NS that you don't have one...I was dx in June with Chiari (11mm)...The NS that I went to in the area that I live said that the MRI's showed no sign of a syrinx and to not worry about it b/c I would never develop one...I point blank asked him if I could!!! This is why I want to see a specialist with Chiari Malformation b/c I don't think this NS knows what he is talking about...There are just not any in the SW Missouri area! But I will travel to get to one...He said alot of my symptons are caused from the Chiari but just blew off the others that I have read on different forums that so many people have just like myself...So I was just wondering if a specialist told you that you could develop it or where you found the info so I could research it! Thanks
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