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-   Arnold Chiari Malformation & Syringomyelia (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/)
-   -   Am I at the end? anyone heard of these symptoms? (https://www.neurotalk.org/arnold-chiari-malformation-and-syringomyelia/163305-am-heard-symptoms.html)

MDW87 01-12-2012 08:23 PM

Am I at the end? anyone heard of these symptoms?
 
Hello, my name is Max when I was 16 (now 25) I had hurt my back pretty bad riding a dirt bike, thought nothing of it figuring i was superman and had gotten away with just a bruise and some scrapes, a few months later my hand was falling asleep at random times, not seeking help because of my fathers motto of "dont worry about it and it will go away" i allowed it to progress to the point of falling asleep for good within 2 months. , then urgently seeking help and doctors scratching their heads for a month until one doctor passed on my mri's to a associate because no one could figure out what was wrong diagnosed me with Arnold Chiari Malformation Syringomyelia having the cyst in my upper c section, that night the doctor told me to go to the emergency room so they could operate now telling me i would die soon if i didnt seek quick surgery.

Had the decompression done and went through therapy over the next few months spent two months in the hospital and ended up with losing the sense of touch in my left hand. Over the next years I had check ups things were going slow.. now a few months ago i'm at a bar and my 'friend' knowing i have back problems picks me up and bear hugs me from behind while i'm sitting in a chair :mad: (drunk people...) now two months later my whole left side of my body has gone cold as in wont warm up from natural body heat, purple, i just got home from the hospital a few hrs ago they ran test and cant find any circulatory problems.. Getting the MRI tomorrow..

Anyone else had these symptoms ? am I going to end up getting a shunt?.. dose the shunt stay in your body and if so what are the limitations with it? i would rather have the cyst removed but i've had a hard time convincing my neuro to do so.. he seems afraid to...

Can anyone just be up front and honest with me? please no sugar, I have accepted my reality and just want to know. my doctors favorite words are your going to be alright. everyone knows alright is code word for not ok.

PLEASE ANYTHING YOU WANT TO TELL ME SAY IT!! THANK YOU!!

razzle51 01-13-2012 04:58 AM

No 1 you need a new dr. You do not die from Chiari/sm . Maybe you do need a shunt if your spinal fluid is blocked . see what the Mri says . But your life is not over ... get a new DR. asap

razzle51 01-13-2012 05:00 AM

If you arer from SC get an appt with Dr Rosner , he is the best

MDW87 01-13-2012 09:57 AM

I'm from new jersey lots of good Neuro surgeons anyone have a particular recommendation

razzle51 01-14-2012 06:20 AM

Dr. Neil Feldstein
85 Rariton Avenue
Highland Park 08904
(ph) 908.846.4230
* Practices at: Columbia Presbyterian Hospital
New York City


Dr. Susan Hemley
Cooper Hospital,Department of Neurosurgery
3 Cooper Plaza
Suite # 411
Camden,New Jersey 08103
1-856-342-2701

Dr. Thomas Steineke
Neurosurgeon
Speciality Pediatrics
New Jersey Neuroscience Institute
JFK Medical Center
65 James Street
Edison, NJ
(ph) 1-732-321-7010

Dr. Edward VonDerSchmidt
419 North Harrison Street,
Suite 204
Princeton 08540
(ph) 609.924.3614
* Practices at: Robert Wood Johnson,
Princeton Medical Center


Michael G. Nosko, M.D., Ph.D, FRCS(C), FACS
Assoc Professor and Chief
125 Paterson Street, New Brunswick, NJ 08901-0019
Email- nosko@umdnj.edu
Phone 732-235-7756 Fax 732-235-7095
Practices @ Robert Wood Johnson University Hospital


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