Hi and welcome to the group. I am not able to offer any feedback regarding surgery as I have not had it. It does sound like you are pretty much at a similar place symptom-wise as I am though so I can certainly understand your fears. I am still working 4 days a week (a desk job that does not involve any lifting. In all honesty, I am finding this very difficult but am just not ready to give work away. Thankfully my boss is very accommodating of my needs and I can get up and move around as much as I need.
I think you are probably right that alot of the neurosurgeons don't feel comfortable in taking the risks that the surgery poses. But I can certainly understand where you are coming from with the fear of becoming paralysed if you don't have it. That is probably my greatest fear - along with the loss of a great deal ( if not all) of my independence.
I don't know whether I have helped, but I know there are quite a few who have had surgery. At least be assured I do understand.
Best wishes. simt37

Hi Starlight and Welcome ... your inquiry about the surgery is perfectly normal Syringomyelia is a touchy subject among Neurologists and Neurosurgeons as there is alot of controversey about the shunt or even even the decompression surgery first off shunts have a bad track record for getting clogged or being an area for infection here in Canada there are not many Neurosurgeons who would even do the surgeries unless absolutely necessary I have had Syringomyelia for going on nearly 11 years now but only found out about it in 2009. I stopped working in 2008 and have not been back to work since and I am currently in a battle to get Ontario Disability but they seem to think I am not disabled my syrinx runs from my T5-T9 plus a number of herinated disks between C4-6 and L4-5 which give me quite a deal of pain plus vertigo and nausea trouble walking sitting standing and forget about even bending but I have been told I am not a surgical case and my NS have referred me back to my family doctor so I am back to square one but at least my family dr understands but here is a web site you can check out to be more informed
healthguide.howstuffworks.com/ventriculoperitoneal-shunt-dictionary.html hope this is of some help keep us posted
blessed be
Lori

Hi , sorry that you are in so much pain and having all the symptoms that I had early in my journey with SM . I had to have the surgery to place a shunt in my c-spine . And my NS at the time was concerned that if my symptoms got any worse I would end up paralized . It is a dificult surgery to say the least ,and very dangerous as all surgeries are . There is about a 32% chance (that is what myNS said) that the shunt could clog . If it clogs they as far as I know can`t take it out or replace it ,and I don`t know if they have any way of cleaning the clog out either . You do need to ask your NS a lot of questions about it . I don`t know if you can get to any place where they really do these surgeries but there are a few of them around . I had mine done in Denver ,Co . You might be able to talk to a doctor at The Rocky Mountian Neurological Alliance and find out some more information . One of my doctors there was Dr, McVicker the surgeon was doctor Dailey but he has since moved to California . I still have pain and numbness and the tingling and other strange things too . But so far the progression has been slowed down . I was also told up front that there is not a cure but they can try to slow down the progression . When you look for a NS ask them if he or she specialize in SM or Chiari Malformation and how many patients have they treated with it . I hope this has helped you in your quest for answers . By the way there is another site that you should check out it is called www.smawarness.ca it does have a lot of information and also ASAP.org .Let us know how of if we have helped . I am here and on the other places too .

Thank you guys, just hearing other peoples stories makes me feel not so alone in this battle!

Dr. John Oro http://www.auroramed.com/conditions_we_treat/chiari_malformation/our_medical_director.htm

He's the best I've heard of, but specializes in Chiari Malformation & tethered, hope your insurance covers it.

best wishes.

Hello starlight.I to am 30 years old with four children.I was dx'd about a year ago. When they found mine they told me it was from my c/5-t/2 and was 8mm in width.There was no room for any csf fluid to flow through.I went to see a NS and he said he wanted to do another MRI on the whole spine to make sure there was not another syrinx and to make sure of no tumors and tethered cord.I got the MRI done and went back to see him, he said there was no known cause for the syinx but i was going to need surgery asap.So when i walked out of there that day i had my surgery scheduled for the following month.We had a discussion about the pro's & con's of the surgery and he was honest with me that it is only a step to slow down the progression, there is no cure and that even with the surgery i could still continue to get worse, but without it i would become paralyzed.So,on April 21 2010 i went to the hospital to get the Syringsubarachnoid shunt placement surgery.I came out of it okay and i am not going to lie i was in some awful pain.I could hardly move and could not get up to go to the bathroom. I was released 2 days later and made the recovery at home.It has since been almost 9 months since the surgery and i have not gotten any better. I have since then found out i have a second syrinx that goes from my t/3 all the way down to basically my butt bone.Which the NS did not tell me.But like everyone is telling you, please be sure you go to a NS who specializes in the SM. I am hoping i helped you a little and if you have any questions, feel free to ask. Thank you .

I am in a very similar place. 31 with two little boys. I do have AS, RA, fibromyalgia and degenerative disc disease. I'm usually in constant pain but then it tripled. Can't lay down without screaming. Started to have the numbness and bladder control loss etc. just thought it was the AS. I have two syrinx that they can see so far in my thoracic. 8mm and 5mm. Just did another MRI on whole spine to make sure there aren't tumors and to see if I have more. They referred me to a neurosurgeon so now I'm just waiting. I'm scared and want to hear others experience. I hope everything works out for you! We need to be there for our babies! Much love!

I have also syringomyelia.

Hi, I have had sm for 36 years. I've had 2 back surgeries. My surgeon explained to me early on that the surgery was not going to give me back what I had lost, it was to keep things from getting worse. He also told me in time it would return. I now have a large syrinx again but have not found a surgeon that will do the surgery. Too much scar tissue and other damage in my back from the previous surgeries. I honestly don't know what will happen now. I'm in a wheelchair because my legs won't support any weight. I've also lost bladder and bowel control. I wish I could give you some positive information. I guess after all these years I should be thankful that these problems were kept at bay for so long. I wish you luck. Hang in there. KM