Tarlov Cyst Disease Foundation

Home

About Us

Tarlov Cyst Information

Donate/Join Us

Surveys & Research

Our Library

FAQs

Find a Doctor

News & Events

Calendar

Site Search

Tarlov Cyst Disease Foundation

Surveys & Research

Research Update!
See exciting announcement on "News & Events" page.

The Patient Survey is for individuals who have been diagnosed with symptomatic Tarlov cysts.

Please include a name or pseudonym and please include your state and/or country on the form.

The Foundation's surveys will be utilized to compile a scientific database that will aid researchers in studying Tarlov cysts. They will be combined with surveys with physicians who are treating Tarlov cysts, and submitted to a research survey company. The analysis of this data will hopefully lead to answers regarding the causes of Tarlov cysts and solutions for improved treatment outcomes, for all those with Tarlov cysts.

Your medical information will remain confidential, protecting your identity; however, there needs to be some identifier on each survey, such as a pseudonym/nickname, if you do not wish to use your real name for the surveys. Please, be consistent with the same name from survey to survey.

Thank you for your participation in our surveys and know that your input will assist clinical researchers and physicians in finding solutions and answers that will benefit all those with Tarlov cysts in the future.

Purposes of the Tarlov Cyst Disease Foundation's Research Studies will be to:

Identify potential causes of symptomatic Tarlov cysts; identify incidence of cysts in the population geographically, as well as in relation to gender, age, and onset of symptoms
Assess symptoms and differentiate parasthesias, bowel and bladder issues, and other affected multiple organ systems, as well as pain patterns associated with symptomatic Tarlov cysts
Evaluate the best imaging parameters for improving the diagnosis of symptomatic Tarlov cysts
Develop a statistical analysis to evaluate the existing treatments utilized by the primary physicians of Tarlov cyst patients
Determine improved treatments and establish protocols with the best possible outcomes for patients with Tarlov cysts

Tarlov Cyst Disease Foundation Patient Survey

Tarlov Cyst Disease Foundation Patient Survey

I. General Information

A. Name/Pseudonym Email:
B. Address
Street address optional ;* state/country required
C. Gender Male Female
D. Current Age <30 30-40 40-50 50-60 >60
E. Age at onset of symptoms <30 30-40 40-50 50-60 >60

II. History

A. Date of onset of symptoms (Year)
B. Significant occurrences at onset of symptoms. Check all that apply.

	1. Fall
	2. Rear end collision
	3. Other motor vehicle accident (MVA)
	4. Lifting heavy object
	5. Long car trip
	6. Plane trip
	7. Other
	8. No particular significant incident

C.	Prior to Tarlov cyst diagnosis, had you experienced back pain or back injury with any other diagnosis? Y N

D. If you answered "yes" to B., did you receive surgical treatment? Y N
(If yes, briefly describe)
E. Non-surgical treatments you received. Check all that apply.

	Massage therapy
	Physical therapy
	Acupuncture
	Ice application
	Heat application
	Bed rest
	Muscle relaxants
	Other

F.	Date of first medical visit for Tarlov Cyst symptoms:

G. Who did you FIRST see for diagnosis and treatment?

	Family Practice /GP
	Orthopedist
	Neurologist
	Neurosurgeon
	Other

H. Describe your initial Symptoms (Briefly)

I. Diagnostic Tests you had initially: Check all that apply

	X-ray
	EMG
	MRI
	Myelogram
	CT
	Other

J. Referrals to other Health Care Practitioners?Y N
K. If yes, Check all that apply.

	Neurologist
	Neurosurgeon
	Orthopedic Specialist
	Psychiatrist
	Physical Therapist
	Acupuncturist
	Interventional Neuroradiologist
	Other

L. Did a Neuroradiologist read your MRI/CT/Myelogram? Y N
  (If not, who read it?)
M. Who initially diagnosed your Tarlov cyst?
N. What is/are the location of your cyst(s)?
     Size(s)
     Number of cysts

O.	Were there other names used for your cyst other than Tarlov? Perineural, Sacral, Meningeal, Arachnoid. Other?

P. Did any doctors tell you that:

	1.Tarlov cysts were the cause of your symptoms? Y N
	2. Tarlov cysts were never symptomatic? Y N
	3. They did not know what a Tarlov cyst is? Y N

Q.	What treatment options were described for you by your physician or referred physician?

III. Symptoms

Check all that apply

A.	Swelling that is visible and palpable(can be felt) over the sacrum
B.	Sciatica
C.	Numbness in hip or leg
D.	Pain in lower back
E.	Pain in hip
F.	Pain in Thigh
G.	Rectal pain
H.	Vaginal pain
I.	Pain in leg Left Right
J.	Headaches
K.	Pain in neck
L.	Pain in shoulders
M.	Tingling, Burning sensation in legs or feet Left Right
N.	Foot Cramps
O.	Leg Cramps
P.	Difficulty sitting
Q.	Sensation that you are sitting on a “rock”
R.	Bladder problems: 1. Incontinence 2. Frequency 3. Urgency 4. Residual 5. Inability to urinate and must be catheterized
S.	Bowel problems: 1. Constipation 2. Encopresis(cannot control bowel movement) 3. Take stool softeners and/or laxatives 4. Must use enemas
T.	Pain in ribs/ midback/chest(Thoracic area)
U.	Other

IV.Other Diagnosis/Medical Conditions

Type inside the box below any other medical diagnosis that you have in addition to TCs, such as congenital defects, connective tissue disorders, etc.

V.Other findings on your MRI/CT scan

A.	Ruptured/Herniated Discs Location(s)
B.	Bulging Discs Location(s)
C.	Arachnoiditis Type
D.	Osteoarthritis Location
E.	Scoliosis
F.	Kyphosis
G.	Lordosis
H.	Spondylolisthesis
I.	Other

VI.Treatment outcomes

Type inside the box below any treatments you have had for your Tarlov cysts and a brief comment after each as to improvement, no improvement, worse

VII.Medications

Type inside the box any medications you have taken for Tarlov cysts and if they helped your symptoms or not.

VIII.Activity Level

A. Are you currently employed? Y N

B.	If not currently employed, what was your previous job?

C. Are you unable to work due to Tarlov cyst symptoms? Y N
D. Have you applied for Social Security Disability? Y N

E.	Do you still: (Use the following codes for items below- S (same as usual) O (Occasionally) R (Rarely) N (Never)

1.Drive

2.Travel

3.Vacuum

4. Cook

5. Garden

6. Mow lawn

7.	Exercise If yes, what type?

8. Go to theater, movies?

9. Go out for dinner

F. Do you have problems with the following? (use same codes as in E. above)

	1. Sitting
	2. Standing
	3. Lying flat on your back
	4. Lying on the side of your cyst
	5. Walking
	6. Bending at the waist

G.	What is your preferred position of least discomfort?

H. What is your most uncomfortable position?

IX.Personal Impact of Living with Tarlov cysts

A.What can you no longer do because of your Tarlov cyst symptoms?

B.	What has changed in your life since the TC diagnosis, such as loss of job, social life, etc.

X. List 5 things you would like your family and friends to know about your Tarlov cyst Diagnosis.

1.

2.

3.

4.

5.

XI. List 5 things you would like your physician to know about you and your Tarlov cyst(s)

1.

2.

3.

4.

5.

Enter in the Code exactly as you see it before clicking the 'Submit' button.