Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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Brain & Nervous System
/ Syringomyelia Support Group

Struggling and need some encouragement

ellahollander
ellahollander
I'm a 13 year old girl and was just diagnosed with syringomyeila. No one knows what caused it. The doctors can't fix me and all of my friends are being so weird. It's hard to because I have never even met someone with Syringomyeila and I just want someone who knows what I'm going through. Being in middle school is hard enough but when you add this- I'm just struggling. If you have any experience with my current issues or could just give me some words of I encouragement, I would be so grateful.
misshamp
misshamp
Hi, you have certainly come to the right place... our condition is rare or so I keep being told. Do you know whereabouts yours is???... I'm 38 and 5 months ago had my daughter, as soon as you mention syringomyeila health professionals almost go into melt down as they don't have a clue. everyone seems to have its different symptoms . Likewise I have friends that don't have a clue what I have or experience at times, and then there are those who feel sorry for you...
I wont give in to the pain, and you will find things that work best for you and make you comfortable...
Roni
Roni
Ask your doctor to do complete MRI of your entire spine to find cause of syrinx. Take it easy with exercise. No one who does not have a syrinx understands the degree of discomfort it can cause. Your friends are much too young to relate to your condition; they are going through their own "growing up" issues and are too self-absorbed to put themselves in your shoes. I have had spina bifida for 66 years and I can assure you that you will be able to live a full and meaningful life in spite of your condition. Take heart and be assured God loves you and will lead you to people who can help you find the answers you need. God Bless You!!
Roni
Roni
Also, ask your neurologist about using a TENS unit to help with any pain you experience. I have found it works wonders.