Syringomyelia

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is syringomyelia?

Syringomyelia is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Causes may be congenital (present at birth) or result from trauma, meningitis, hemorrhage or tumor growth.

Common symptoms reported by people with syringomyelia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with syringomyelia

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Advil)
Type
Over the Counter Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Mobic)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Parafon Forte DSC)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Surgery
How many have tried
1
Tried for
syringomyelia (1)
Treatment name(s)

(Licensed Professional Counselor (LPC))
Type
Psychotherapy
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1) pain (1)
Treatment name(s)

(Lumbar Epidural Steroid Injection)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Prozac)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)

(Pill Organizer)
Type
Other
How many have tried
1
Tried for
pain (1)

Data from patients with syringomyelia, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with syringomyelia

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (1 evaluation)
Side effects
abdominal cramps
Total evaluations
1
Tried for
pain (2)
Treatment name(s)

(Advil)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (2)
Treatment name(s)

(Mobic)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Parafon Forte DSC)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
for syringomyelia (1 evaluation)
Side effects
Hospitalization stiffness/spasticity
Total evaluations
1
Tried for
syringomyelia (1)
Treatment name(s)

(Licensed Professional Counselor (LPC))
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1) pain (1)
Treatment name(s)

(Lumbar Epidural Steroid Injection)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Prozac)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)

(Pill Organizer)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with syringomyelia, who reported starting treatments within the last 5 years.
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Who has syringomyelia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 4
20s 14
30s 43
40s 58
50s 47
60s 24
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 14
20-29 years 28
30-39 years 23
40-49 years 18
50-59 years 2
60-69 years 2
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 32
Female 166

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 103
Not Diagnosed 2

These charts show data from syringomyelia patients who have completed their condition history
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