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.
Condition: Syringomyelia (Entire spine), Arnold Chiari I Malformation, L5 and C5 bulging discs
I've noticed people have been asking about possible symptoms for both of these conditions. I've had so many that I may miss some. They affect everyone differently. Here are some of the symptoms I've experienced:
1) Chronic severe pain: Began in upper right quartile gradually spreading downward and then gradually affecting left side of body but not as severely. Variety of pain: shooting, sharp, pin prickling, burning, stabbing, sledgehammer. Can not stand for anyone to touch me.
2) Numbness and tingling in extremities
3) Sharp shooting pains in back of head
4) Sensations, tightness, pain in side of face
5) Visual disturbances
6) Burning pain in extremities, arms, and along spine
7) Hands turning purplish black when cold or walking
8) Drawing sensation followed by shaking (Maybe a tremor)
9) Pulsating, nerve twitching in legs after walking
10) No sweating under normal conditions or takes 30 minutes to break a sweat
11) No reflexes in arms and hyper-reflexes in legs
12) Spasms at night in legs
13) Insensitivity to heat and cold and sharp items which has led to injuries
14) Hoarseness and feels funny when swallowing, hurts when talking or singing
15) Headaches
16) Fatigue: This is a major symptom even when not taking meds.
17) Cold hands and feet even when core is hot
18) Legs buckle at times.
19) Off balanced at times.
20) Difficulty focusing at times
21) Difficulty adjusting to sudden temperature and pressure (wind) changes
My NS had told me that my previous surgeries (Shoulder, Partial Hysterectomy, and Bladder Tack) may have all been as a result of my condition., Thank God I'm not paralyzed and have not lost bowel/bladder function.
No breathing problems, just sinus congestion and allergies.
What is your condition and symptoms. Please make it in the form of a list. If you forget something like I've probably done, we can just add it later. Maybe, another time, we can talk about things we like to do for recreation to give people some ideas of doable activities.
I've noticed people have been asking about possible symptoms for both of these conditions. I've had so many that I may miss some. They affect everyone differently. Here are some of the symptoms I've experienced:
1) Chronic severe pain: Began in upper right quartile gradually spreading downward and then gradually affecting left side of body but not as severely. Variety of pain: shooting, sharp, pin prickling, burning, stabbing, sledgehammer. Can not stand for anyone to touch me.
2) Numbness and tingling in extremities
3) Sharp shooting pains in back of head
4) Sensations, tightness, pain in side of face
5) Visual disturbances
6) Burning pain in extremities, arms, and along spine
7) Hands turning purplish black when cold or walking
8) Drawing sensation followed by shaking (Maybe a tremor)
9) Pulsating, nerve twitching in legs after walking
10) No sweating under normal conditions or takes 30 minutes to break a sweat
11) No reflexes in arms and hyper-reflexes in legs
12) Spasms at night in legs
13) Insensitivity to heat and cold and sharp items which has led to injuries
14) Hoarseness and feels funny when swallowing, hurts when talking or singing
15) Headaches
16) Fatigue: This is a major symptom even when not taking meds.
17) Cold hands and feet even when core is hot
18) Legs buckle at times.
19) Off balanced at times.
20) Difficulty focusing at times
21) Difficulty adjusting to sudden temperature and pressure (wind) changes
My NS had told me that my previous surgeries (Shoulder, Partial Hysterectomy, and Bladder Tack) may have all been as a result of my condition., Thank God I'm not paralyzed and have not lost bowel/bladder function.
No breathing problems, just sinus congestion and allergies.
What is your condition and symptoms. Please make it in the form of a list. If you forget something like I've probably done, we can just add it later. Maybe, another time, we can talk about things we like to do for recreation to give people some ideas of doable activities.
You've certainly got enough on your plate to deal with. Research SCS and ask your doc about it if you think it might help you.
Good luck dear.
pain under my shoulder blade so bad I am unable to even move my arm for weeks at a time
leg spams when laying down
extreme fatigue (not even on meds yet)
face and ear pain shooting through my head every day for about 1-2 hrs. (Thought it was bad sinus's, but found out it is spinal headaches)
very uncoordinated, falling, dropping things, tripping over nothing
Numbness and tingling in extremities worse in my feet at this point
tremors
have a hard time adjusting from sitting to standing
cut and burn my hands accidentally a lot without noticing right away
chest pains
They have diagnosed me with severe disk degeneration, Facet's disease, stenosis, syringomyelia (syrinx from T spine down to S1) andvseveral bulging and protruding disks
swelling on right side of body especially after any traveling or walking a lot.
pain in my neck down to my back only on the right side
numbness to heat or coldness
cant feel a sharp object on the right side.
am starting to experience leg tremors at night
I have facial numbness and loss of balance on the right side also.