1. Welcome to the TC Survey

If you have one or more Tarlov cysts, please complete this survey. We also need your friends without Tarlov cysts (2 would be great) to complete relevant sections. They will serve as our comparison group. They should be of at least 18 years of age. We sincerely hope you can complete all applicable sections, because your inputs will contribute greatly to the understanding of this condition. All records are kept strictly private: only anonymous statistics are published. All question with a * must be answered and the last question with a * is question 22. If you get back pain during the survey, get up, stretch and come back to the survey later! . Thank you very much.

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* 1. Do you have the following conditions?

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* 2. My gender is:

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* 6. My current body weight in pounds is:

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* 7. My current height in inches is (4 ft=48 in., 5 ft=60 in., 6 ft=72in):

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* 8. Do you have a family history of Tarlov cyst?

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* 9. Is there a history of severe low back pain in parent/ brothers or sisters?

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* 10. Do you have the following medical conditions?

  Yes No Don't know
Diabetes (sugar diabetes)
Hypothyroid (low thyroid)
Gout (high uric acid with foot pain)
High blood pressure
High cholesterol level
Herpes (genital) infection
Cyst elsewhere in the body
Chronic cough
Smoking
Alcohol (more than 14 drinks a week)

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* 11. If you have a cyst in your body other than Tarlov cyst, please indicate where it is or are located (check all that apply).

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* 12. Do you have a cyst elsewhere not previously described? Please go to the next question if not applicable to you.

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* 13. Have you worked outside home over the past 10 years?

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* 14. If "yes" to previous question, the following applies to the last three jobs of more than 3 months from most recent to most remote. You may combine the jobs if they have similar physical demands.

  Lifting 10 lbs more than 25% time Lifting 20 lbs more than 25% time Lifting 30 lbs more than 25% of time Repetitive bending more than 50 % of the time Standing or walking more than 50% time Sitting more than 50% time (including driving) Sit on vibrating machine (e.g. tractor trailer)
Job 1
Job 2
Job 3

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* 15. Number of years at each job?

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* 16. Have you had low back injury at work with lost time from work?

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* 17. Have you had a motor vehicle accident requiring lost time from work or house keeping?

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* 18. Have you had a low back injury from sporting activity requiring lost time from work or house keeping?

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* 19. Have you had a slip and fall accident requiring time off work or house keeping?

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* 20. Have lifted something heavy that caused low back pain and required time off work or house keeping?

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* 21. Have you twisted your back suddenly that caused low back pain and required time off from work or house keeping activity?

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* 22. In general, would you say your health is:

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* 23. The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?

  Yes, limited a lot Yes, limited a little No, not limited at all
a. Vigorous Activities, such as running, lifting heavy objects, participating in strenous sports
b. Moderate activities such as moving a table, pushing a vacuum cleaner, bowling or playing golf
c. Lifting or carrying groceries
d. Climbing several flights of stairs
e. Climbing one flight of stairs
f. Bending, kneeling, or stooping
g. Walking more than a mile
h. Walking several hundred yards
i. Walking one hundred yards
j. Bathing or dressing yourself

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* 24. How much bodily pain have you had during the past 4 weeks?

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* 25. IF YOU HAVE LOW BACK OR BUTTOCK PAIN PLEASE CONTINUE WITH SURVEY. If you do not have low back or buttock pain, THANK YOU for your input. Please exit at the end of the survey and push "done".

When your back hurts, you may find it difficult to do some of the things you normally do. This list contains some sentences that people have used to describe themselves when they have back pain. When you read them, you may find that some stand out because they describe you TODAY. As you read the list, think of yourself TODAY. When you read a sentence that describes you today, put a check on the sentence. If the sentence does not describe you, then leave the space blank and go on to the next one.

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* 26. The pain in my back radiates (spreads) to my: (check all that apply)

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* 27. Do you have disc herniation and if so at what level?

  Yes No Don't know
L1/L2
L2/L3
L3/L4
L4/L5
L5/S1

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* 28. Do you have spinal stenosis according to MRI or CT?

  Yes No Don't know
L1/L2
L2/L3
L3/L4
L4/L5
L5/S1

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* 29. Do you have a Tarlov cyst?

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* 30. How long have you known of the following

  Less than 1 year 1 to 2 years 3 to 4 years 5 to 6 years 7 to 8 years 9 to 10 years over 10 years
Low back pain likely due to Tarlov cyst
First diagnosis by MRI or CT
Tarlov cyst first recognised by a physician as cause of back pain

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* 31. Please describe, the location and the size of Tarlov cysts to the nearest cm.

  1 cm 2 cm 3 cm 4 cm 5 cm 6 cm More than 6 cm
Level S1
Level S2
Level S3
Level S4
Level S5

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* 32. Have you had an invasive procedure for a Tarlov Cyst?

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* 33. If you had an invasive Tarlov cyst procedure, did you have the following? (Complete one row for each surgery if applicable, you can check off more than one check mark)

  Percutaneous aspiration Fibrin glue injection Excision surgery Grafting surgery Other surgery
Procedure 1
Procedure 2
Procedure 3
Procedure 4

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* 34. I had the following complications after my surgery(s) (check all that apply)

  Aseptic meningitis Arachnoiditis Bladder problem Erectile Function (male) Bowel control Unable to walk 4 weeks after surgery
Procedure 1
Procedure 2
Procedure 3
Procedure 4

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* 35. If you had FGI, please select which one applies:

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* 36. If you have had FGI (fibrin glue injection), which of the following applies to your condition after FGI (compared to before FGI):

  Definitely better Mostly better Don't know Mostly worse Definitely worse
3 months after first FGI
6 months after first FGI
1 year after first FGI
3 months after second FGI
6 months after second FGI
1 year after second FGI
3 months after third FGI
6 months after third FGI
1 year after third FGI

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* 37. If you have had Tarlov cyst surgery, which of the following applies to your condition after surgery (compared to before surgery):

  Definitely better Mostly better No change Mostly worse Definitely worse
3 months after first surgery
6 months after first surgery
1 year after first surgery
3 months after second surgery
6 months after second surgery
1 year after second surgery
3 months after third surgery
6 months after third surgery
1 year after third surgery

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* 38. Please indicate if you ever had the following herpes infections and if you ever noticed an apparent interaction between between your herpes and your Tarlov cyst (TC) conditions.

  I have had this condition I never had this condition At least once, TC and herpes seemed to interact I have never noticed a seeming TC-herpes interaction
HSV1 (herpes simplex virus), e.g. cold sores
HSV2 (herpes simplex II) e.g. genital sores
Herpes Zoster (shingles) e.g. chicken pox re-activation
Epstein-Barr virus (EBV)
Cytomegalovirus (CMV)

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* 39. My bladder and bowel functions are as follows (check all that apply):

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* 40. My sexual function may be described as (check all that apply):

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* 41. My sleep may be described as follows (check all that apply):

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* 42. My mood and psychological functioning may be described as follows (check all that apply):

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* 43. The following intervention if (applicable) has affected me as follows:

  Definitely causes pain Causes pain No effect Decreases pain Definitely decreases pain
Stretching
Walking 15 minutes
Lying down
Sitting down 30 minutes
Heat
Cold
Massage
Ultrasound therapy
Inversion tables
Cranio-sacral therapy
TENS
Interferential Current
Chiropractic Manipulation
Acupuncture
Herbal
Anti- inflammation eg Celebrex, Vioxx, Indocid
Prednisone
Anti- depressants (SSRI) eg Paxil, Prozac, Celexa, Zoloft, Lexapro
Other anti-depressants Effexor,Wellbutrin, Remeron
Anti-depressants ( tricyclics) eg amitriptyline, nortriptyline.
Short acting analgesics eg Tylenol, Codiene
Long acting narcotics eg MS Contin, Oxycontin
Neurontin

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* 44. My pain control is:

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* 45. If pain control is inadequate, the following are reasons (check all that apply):

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* 46. My pain intensity

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* 47. My personal care (washing , dressing etc):

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* 48. My Lifting today:

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* 49. My walking today:

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* 50. My sitting today:

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* 51. My standing today:

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* 52. My sleep today:

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* 53. My sex life today:

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* 54. My social life today:

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* 55. My traveling today:

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* 56. My financial condition is:

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* 57. Have you applied for disability insurance?

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* 58. If your disability claim has been rejected, do the following statements apply to you (check all that apply):

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* 59. E-mail (optional) may be provided here or if you wish to be completely anonymous please provide first 3 digits or letters of your zip or postal code followed by the month of your birthday.:

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* 60. Please provide names, addresses, telephone and specialty of physicians who have helped you (just give a name and specialty if you don't have other information on hand).

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* 61. Are you a member of TarlovTalk or any other forum of the Tarlov Cyst Support Group?

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* 62. Your suggestions regarding ways to improve the Tarlov Cyst Support Group:

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* 63. Any other comments and THANK YOU so much for completing the survey. Results will be posted in about 6 weeks:

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