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Old 03-12-2012, 03:55 AM
dtwaitmh dtwaitmh is offline
Junior Member
 
Join Date: Mar 2012
Posts: 13
10 yr Member
dtwaitmh dtwaitmh is offline
Junior Member
 
Join Date: Mar 2012
Posts: 13
10 yr Member
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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.


Quote:
Originally Posted by lori del sol View Post
My main question: if your MRI finds you have a chiari malformation and no syrinx can one develop later on? And what new symptoms would arise?


My experience:
I was diagnosed with having a 7mm Chiari but no syringomyelia three years ago after four years of terrible pain, strange symptoms and misdiagnosis. I was grateful to finally have an explanation. Tried many medications and had many steroid injections into my spine. Eventually I lost my job due to my having many doctor appointments and the side effects of all the medications and lost my health insurance. I have not seen a doctor in over two years. The pain has become severe to where I spend days in bed. I constantly feel as if I've just been hit in the back of the head, pain in my eyes, tingling in various areas of my scalp, face, ears and neck. I am having more trouble with my balance when walking. I choke on food and saliva no matter how careful I am. I have almost no sensitivity to heat in my fingers (I have burned myself and not even known it). Vision problems are getting worse. It's driving me a little crazy at this point. I am currently trying to save the money to get a new MRI, I can not get a neurologist, pain management or neurosurgeon to see me without having testing done within the past six months.

I am looking for info and people to talk to, without being able to do much I've spent too much time thinking about it all recently. I'm also afraid of spending my money on a doctor that isn't experienced in chiari, so if anyone knows of a great doctor in Texas preferably near Fort Worth please let me know

Thanks ahead of time for your response!
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