Syringomyelia

vicky429 · 02-04-2010, 10:15 AM

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!!!!!!!!!!!!

crystal moss · 02-11-2010, 12:31 AM

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!

Sheri_TOS · 02-14-2010, 12:01 AM

Quote:

Originally Posted by vicky429

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!!!!!!!!!!!!

You need to find someone knowledgable on SM. Check out:

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.

chiarichic · 03-03-2010, 12:35 AM

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.

JNINE · 03-26-2010, 11:09 AM

Quote:

Originally Posted by ryguy

I too have just discovered this. I also have 2 young children and a wonderful wife. I am about to buy these chinese herbs called mignitin and/or omeglatex. Look them up if you like, its worth a try i guess. im tired of living on pain meds. please be in touch if youre willing.

My husband was diagnosed w/ SM in 07. His pain doc prescribes methadone and xaxax together - horrible and dangerous combo, in my opinion. I stumbled across the chinese herbal treatment website the day before I read your post. I am curious to know if you tried it. Please reply, thanks

mammadukes · 03-26-2010, 03:45 PM

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

witherspoon10 · 08-21-2011, 10:47 PM

Quote:

Originally Posted by choudsal

Hi

I have just joined this forum and recently after 2 MRI scan's and months of severe pain down my right side, pins and needles, burning pain and severe one sided head aches i was told that i had a cyst in my spinal cord which may or may not be causing my symptoms. This has come as a bit of a shock to me as a i am in a full time job with two young very demanding children and at the same time i am the main breadwinner. I have had a lot of time off work because i simply can't tolerate the pain. I can't have any anti- inflammatories because i had an asthma attck from them last year, and my GP won't go beyong CO-Codamol because she inssits that i would not be able to function aftertaking them- i need to drive to work and drive for the school run apparently anything strnger than co-codamol would effect driving. Can anyone tell me if this condition is permenant and whether or not and is it classed as a disability? I have been referred to the pain clinic they have suggested injections into my neck- which does not sound to welcoming- but has anyone been through this and did it help them? Please could some one affer me some tips to deal with this condition!

What is going on have right side pain radiating to chest wall feel like heart attack if i did not know my heart is on the left i would swear i was having an MI. my back is tight now back is burning with a feeling of fluid goind down spine. had 3 epidural blocks helped for a minute but not significantly is this cm or syrinx no headaces really but have spasm feels like pleurisy. sister has cm with syrinx. neurologist said no compression I dont belive because of the pain, Neck is crunching dont know just dont know

brendatis · 09-01-2011, 08:24 PM

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!!!

TeachMA · 10-25-2011, 01:21 PM

Quote:

Originally Posted by witherspoon10

What is going on have right side pain radiating to chest wall feel like heart attack if i did not know my heart is on the left i would swear i was having an MI. my back is tight now back is burning with a feeling of fluid goind down spine. had 3 epidural blocks helped for a minute but not significantly is this cm or syrinx no headaces really but have spasm feels like pleurisy. sister has cm with syrinx. neurologist said no compression I dont belive because of the pain, Neck is crunching dont know just dont know

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?

cins · 10-26-2011, 05:28 PM

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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