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.

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.

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

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!!!

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?

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.

I too have Syringomyelia and a Chiari Malformation. It is kinda scary too. Mine is very large (from the basically the base of my skull to the bottom of my shoulder blades). I have been having symptoms since I was 12 and they figured out my malformation when I was 19. I had surgery for my Chiari Malformation a year ago last month.

My symptoms are better. I haven't been in to see my neurologist since I was cleared to go back to work and such, because we currently have no insurance. However, I had a spinal scan done tonight, actually, and it shows that my spine has curved from my neck to the bottom of my shoulder blades, which syringomyelia might cause.

I'm the queen of head injuries, so that has probably not helped. There are a lot of things I think I really need to quit...like, heading soccer balls and playing softball (major triggers of my symptoms before).

It's hard. A big life adjustment. Maybe I don't know enough about it to be scared of it yet, but it's not the end of the world. Could be worse, could be better...but this is how it is. The sooner I accepted it, the sooner I pretty much forgot about it.

Constantly, I am in pain...but I keep really busy, so I don't have time to think about it. My family is totally understanding and helpful. For the guy who started this post, tell your family. Let them love you through this. Let them help you. You aren't a burden. They will count it an honor, a joy, to walk this road with you. If you don't let them, it's just gonna hurt them more.

I do wanna say this...and if I'm breaking forum rules, sorry...this is my first time. But I serve a good God. He has given me trials that are huge for someone who is only 21. But He's still a good God. He does not stand back and watch idly as I wander blindly through life, hitting all of these walls and hardships. He is walking with me, His hand in mine. And I know FULLY that if God wanted to heal my syringomyelia right now, He could. For some reason, He doesn't want to, but that doesn't mean He isn't in control. It doesn't mean He isn't with me. And it doesn't mean He doesn't care. He just has other, far greater plans.

Ya'll, this is some tough stuff. Not gonna lie. I'm one of those "I need facts" kind of people. If it's wrong with me, I wanna know more than the doctor does about it. I got attacked by a dog at 18 and he ripped open my face pretty bad and the first thing i wanted was to see it. Sometimes the "facts" scare me. Until I remember that God is bigger than the boogie man...and He's bigger than anything I go through.

This may sound crazy weird but if anyone needs to talk or vent or what-not, shoot me an email. I don't give churchy answers. And I actually GET IT...because I'm there too.

I get it - too. and struggle every day. There are no churchy answers for pain that we cannot understand, and a healing that does not seem to come. But, OMG what I have learned that i could not have learned any other way. Still learning, lots today just being on this site. Hang in there sometimes is just the phrase of the day. just hang in there. and see what comes into your hand. ~WyndyHopes~ and Believes

I am wondering how the Herbs worked for you? Thank you, Julie

I'd caution against those products, based on some net evidence of the company making them.

They are very high in price, contain little substance, and
have appeared on complaint boards, for poor service or not sending the product.

Here is one opinion of Botanical Sources on a blog:
http://onesickmother.typepad.com/my_...rces-scam.html
(be aware there is some strong language on this blog)

I found this when searching for a similar product mentioned on our PN forum here.

Buyer beware.