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02-04-2010, 10:15 AM | #21 | ||
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Junior Member
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I have a syrinx in spinal cord and was having symptoms long before they found it.i have tingling numbness in right arm and leg,and a feeling of cold water running through spine and into leg.the left arm was hurting so bad the other night i was bawling like a baby and could not even pick up or feed my six month old.i am now using a cane to help me walk.i went to er for the severe pain in left arm and they treated me as if i was crazy.they said the cyst could not be causing my symptoms and it is not impinging any thing.furthermore they said they spoke to my neurosurgeons partner whom i have never even seen yet until feb 23 and he said they said they will not even operate on me.was just wondering where to go from here?? Do i keep my appt with neuro or what?? What else could be causing symptoms??? If not the cyst what else could it be?? Also my cyst is from c/6 to t/2 and is 8mm wide.could it be ms????help i am losing my mind!!!!!!!!!!!!
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02-11-2010, 12:31 AM | #22 | ||
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there is hope! i have had a syrinx for 2 yrs. iwas ready to hav surgery until i was put on lyrica and carbamazepin.... walkn, talkn, thinkn again. thank God! still considrn surgry cz im 29 with no kids but ive come so far not sure if i shld risk it. yes stress does seem 2 ncrease symptoms. God bless!
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02-14-2010, 12:01 AM | #23 | ||
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http://www.asap.org/ http://www.chiariinstitute.com/ http://www.csfinfo.org When the problem is very rare, not every doctor in the discipline has experience to treat that problem. SM and ACM is very rare and you need to see someone who has treated SM and ACM patients. Otherwise, they don't understand. |
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03-03-2010, 12:35 AM | #24 | ||
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Junior Member
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Vicky,
I want to encourage you to keep fighting for the care that you deserve. One trick up my sleeve is to get an idea, through research and chatting with others who have been through this, of what tests and possible imaging I might need before I even go to dr. or ER. And I usually carry a complete copy of the hospital and dr office reports and images from my Decompression and Laminectomy. I also make sure I have a close friend or loved one with me who is supportive and can back up my account of my symptoms. I find that a doc is much more likely to probe a little further in trying to diagnose when I have asked for certain tests and they know they should run them, because if they don't and I get worse....they could be liable. I don't like to work the system that way, but I have 3 beautiful daughters and a husband who I adore and I need to stay as healthy as possible. And then of course, if nothing else is working, sometimes I just play the b**** card. What r they gonna do, spit in my food or give me a shot with a super long needle. HA. |
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03-26-2010, 11:09 AM | #25 | ||
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03-26-2010, 03:45 PM | #26 | ||
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New Member
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You will be just fine, easier said then done my 18 year old has it and my 14 year old as well and myself and im a mom of 4 you can do it hun
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08-21-2011, 10:47 PM | #27 | ||
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09-01-2011, 08:24 PM | #28 | ||
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New Member
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Was diagnosed with borderline Chiari and have syrinx in cervical area. Have had pain and problems in the "cape" area between shoulders. Almost positive this resulted from a fall in 2009. I see the neurosurgeon on Sept. 26. Do NOT want to have decompression surgery. The doctor (bone and joint specialist at that) who discovered this said NS will probably want to do full spine MRI and then go from there.
Has anyone out there chosen to forego decompression and perhaps opt for shunt only? Did this help? I've researched this topic until I'm more confused now than I was in the beginning! Any help will be greatly appreciated!!! |
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10-25-2011, 01:21 PM | #29 | ||
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New Member
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I often get feelings like this and knowing what it comes from helps, after the pain subsides. I've had numbness, tingling, burning, squeesing... Doctors often think your crazy when you say the pain moves or doesn't stay in opne area. I feel like my alternator is tripping out. Any new research or success for you? |
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10-26-2011, 05:28 PM | #30 | ||
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New Member
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Hi, posting from Cape Town, South Africa
My post op relief was a dream but 2 years on my symptoms have creeped up on me with a vengeance. Sharp stabbing pain in back, tightness in neck, sensitivity to light, trouble focussing on text when reading, constant need to use the loo, good ole "Chiari" headache is back! Cannot hold my blowdry brush (imagine how long it takes me to do my hair!), vertigo. Painkillers have helped some but I think I've overdone it over the years - tum burns now if I consume even one pill - doc says I may have developed an ulcer! My apologies for my rant - just had to get it out... |
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