just diagnosed with Syringomyelia
 

:confused: after a long battle i was finally given the bitter sweet diagnosis of Syringomyelia....the only option is surgery...i'll take all of the information i can get at this point...the best surgeons, the procedure, the after math, etc.etc.etc.etc.

thanks!

I do not have much to offer, but to say I am so sorry that you have this problem....I will keep you in my prayers.

Hi Northend, I also have syringo, I was diagnosed about 3 years ago. There are others here also and there is a syringo spot here although not much traffic there. I am not sure if I can share a web site and if it is a no no mods please let me know. It is www.asap.org There is tons of info there plus a support board also. Hope to see you there...SUe

Hi Northend,

I can't help you but also wanted to say how sorry I am that you have gotten this diagnosis. I hope things will work out for you. Sending lot's of hugs!
((((((((((((((((((((((((((((((((((((Northend)))))) )))))))))))))))))))))))))))

Linda

syringomyelia and possible b12 deficiency
 

hi had a mri and they think its syringomyelia ( got some of the symtoms ) anyway i looked up vitimin b12 deficiency and syringomyelia and their is a link and people have got better without surgery -i aint a doctor by the way - the usual b12 blood test is flawed do a urinary mma before b12 treatment .
i have just started b12 -the health food ones are no good you need methylcoblamin .

Hey I also have syringomyelia, I know kinda how it feels it sucks. Did the say what kind of surgery. I know the one my doctor was talking about is they would insert a tube into the cyst and it would drain into my lung..it's risky though because it deals with the spinal cord..Thankfully my cyst isin't growing so no surgery yet.If it starts growing then I'll have to have it.
Also I don't know if it's just me or I've noticed stress causes me alot of pain and more symptoms..
talk to your doctor see what kinda surgery they're looking into and if the cyst is growing good luck and don't leave it to long if you think it's a new symptom go to a doctor..Because the cyst can get to big where surgery's not even a option. I don't know if this helps at all

Arnold Chiari/Syringomyelia
 

Hi,
The best Doctors are at the Chiari Institute on Long Island, Ny. and in Chicago ,Il. Dr. Frim is in Chicago and the Dr.'s at The Chiari Institute are the best in the country. Personally wouldn't send people any where else.
Elf Queen

I have a question, I was found to have a syrinx cyst in spinal cord about five months after the birth of my fourth child.The symptoms started slowly at first was just a sore and painful shoulder and doc thought it was a strained trapezius and gave me anti inflammatorys.It started to get worse so i went back and told her.She sent me to P.T thinking it was a pinched nerve in neck caused by a bulging or herniated disc.I ent to about five sessions of P.T and the last one he put me in traction and every time the machine would pull my neck up my right leg would go up involuntarily.He told me he would not see me any more because of that and i needed to go get an MRI done because i also told him i had a feeling of pressure in lower back that made me feel as if i had to have a B.M and was also urinating to a point where i thought i may have been pregnant again,but i wasn't.Any ways doc ordered MRI and orfered it without contrast.While i was in MRI for like 30 mins and they take me out and insert contrast into my arm and i wanted to know why and they said because the doc here wants it put in so i knew they saw something.I went to my docs 3 days later to get results of MRI and she says no bulging or herniated discs but you do have a cyst on your spina cord.I was shocked and scared.I am having debilitating nerve pain that they put me on neurontin to help it .I have feelings of cold water that runs down spine and into right leg.I am also having a hard time walking and am now using a cane on occasion to assist me.This is not me i am 29 years old and full of energy.Now i am sluggish and slow.I get numbness and tingling in right hand and leg.I went to E.R the other night because pain spread into left arm and was so severe i bawled,I had taken my neurontin for that day and even 6omg of morphine and it barely touched it.The docs there treated me like i was crazy and making all my symptoms up.They said there is no way this cyst is causing these symptoms.They checked my reflexes and even though the right leg reflex is greatly diminished they still think i am crazy and there is nothing wrong.They diagnosed me with cervical radiculopathy..Someone please help..I am getting desperate..