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 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.

Thank you!! I appreciate you letting me know and giving me advice. My friend was born and raised in China. She moved her after college. I asked her to look up some information about the herbs, considering it all says CHINESE HERBS work and I can't read Mandarin. After not only reading about it, she called one of the Neurologist there and he pretty much said, they have Medicines that do help make a huge difference but NOT HERBS!! I think it is sad, how people/companies try to take advantage of people. People who found out they are sick and looking for help! Really, what is this world coming to? Soo sooo sad!
Julie

I was diagnosed with the same thing, the doctor said and I quote "this is the biggest Syrinx I've ever seen I don't understand how you are not paralyzed?" After 4 surgeries and a shunt hopefully things will get better, but as for you be careful with hot and cold items, please do your research you will find that some or all of problems that you are having could be related to your syrinx due to the pressure being placed on your spinal cord. I also have 2 young children, my oldest 11 saw me have a seizure right in front of him,it is very difficult for them, dont forget that you are Supermom to them and nothing should be able to hurt you, so I hope the best for you, any way that I can help please feel free to ask.

I also have a syrinx in my lumbar spine, i understand what you are going through. mine was found by mistake, i had an avm and they found the syrinx doing an mri scan. if you have any question please feel free to asks!

I was diagnosed with a syrinx cyst.It is located at my c/6 to t/2 and is 8mm in width.I am just wondering does this mean i have syringomyelia???? My regular physician is clueless but i am going to see a neurosurgeon in February.I do have several symptoms all in right side.My right hand goes numb and right leg.My right shoulder is sore and i get like tingling and burning in it.Also a newer symptom is the feeling of very cold water is being poured into spinal cord and also goes down into leg and foot..Any responses would be greatly appreciated.Thank you.

I was diagnosed with a syrinx cyst.It is located at my c/6 to t/2 and is 8mm in width.I am just wondering does this mean i have syringomyelia???? My regular physician is clueless but i am going to see a neurosurgeon in February.I do have several symptoms all in right side.My right hand goes numb and right leg.My right shoulder is sore and i get like tingling and burning in it.Also a newer symptom is the feeling of very cold water is being poured into spinal cord and also goes down into leg and foot..Any responses would be greatly appreciated.Thank you.

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 was diagnosed as having a syrinx in spinal cord but was having symptoms way before they found it.i was not told that i had syringomyelia or cm. My cyst is from c/6 to t/2 and is 8mm wide.the right side has been mainly affected with numbness tingling and a feeling of cold water running through it.my left arm started to hurt so severly the other night i was bawling and could not even hold baby to feed him,so i decided to go to the er and they treated me like i was a crazy person.they said they looked at my mri and the cyst could not be causing my symptoms it is not impinging anything.and furthermore they said they spoke to my neurosurgeons partner,whom i have not even seen yet until feb23 said they will not do any operations on me.i am just wondering do i keep appt with neuro???what do i do now?? If not the cyst causing symptoms what else could it be??? Someone please help me!!!!!i am on neurontin and selexa for depression and am now using a cane to help me walk..does anyone have any insight to this please help me i feel like i am losing my mind....