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xx Tarlov Cyst Surgery
« Thread started on: Nov 28th, 2006, 11:01am »

Analysis: General Tarlov Cyst Survey

Roland Wong MSc, MD, FRCPC

Introduction

The Tarlov cyst (TC) Internet survey was launched on October 18, 2003. On December 5th, 2003 we have 89 Tarlov cyst respondents and 7 in the comparison group. Only those with Tarlov cyst are reported in the above site. The number of new respondents continues to be strong: from November 27 to December 5th, 2003 we added seven TC responses and 2 responses to the comparison group.

This commentary is preliminary and a further analysis will be done. Your comments will help in further analysis in the future. When you read the above summary at the surveymonkey.com web site, the numbers may not be identical to the numbers given here because you have live up date as responses come in. We really need more in the comparison group without low back pain.

The objectives of this survey are to:

generate explanations (hypotheses) for what causes TC
the distribution of the condition (epidemiology] of TC, in terms of age and sex and place.
describe symptoms among those with TC
describe the abilities and disabilities among the TC group
describe cyst size, surgery, fibrin glue injection and their responses
remedies and treatments
things and events that have help and hurt those with TC
There are a total of 62 questions in the survey. Embedded within these 62 questions are other questions.


Epidemiology

About 95% of the respondents are female and 5% are males. The gender distribution among this group may reflect users of Tarlov Cyst support group rather than the actual distribution of TC within a population. There are no known reasons for the large sex differences in this condition. The possibility of increase occurrence among females, however, cannot be ruled out. Based upon this survey there will be an assessment of the reported perineural cysts and their observed sex distribution. MRI studies of perineural cysts will be examined.

The large majority of people replying are between the 36 to 65 years of age. The peak group is between the 46 to 56 years of age.

Most of the respondents are from North America, that is, United States and Canada. There are five replies from United Kingdom and Australia. There are 2 replies from Europe. The places of residence may reflect the method in which the survey was conducted. The survey was in English and most likely English- speaking countries provided most of the responses. If the survey is conducted in French or in German; there will certainly be a different distribution in terms of place of residence. Among respondents from the United States, 15% of the respondents are from California. The next largest groups of respondents are from Florida, Texas and Georgia. These states represent some of the warmer areas in the United States. It is not clear if there is a relationship between the TC and warmer climates. It is also possible, but not likely, that people with the condition have moved to warmer places. We will also develop a ratio of number of respondents versus the total number of Internet users within a state in order to investigate this question further.


Causes and risk factors of Tarlov cyst

One of the questions that may be asked is whether TC is more common among obese individuals. Further analysis will provide a body mass index, that calculates a relationship between the weight to height.

In order to answer questions on risk factors we need a comparison group to answer some of the questions. For example, do people with symptomatic TC have more chances of being in an accident compared to the comparison group? The comparison group is, however, too small to allow for the comparison.

The other hypothesis for causation of Tarlov cyst included years spent in heavy physical jobs as well as being involved in previous motor vehicle accident, previous back injuries or previous slip and fall accidents. This question will be answer later, when there is a sufficiently large comparison group. We need adult members (over 18 years) of the same sex for the comparison group.


General health

Three questions were taken from the SF- 36 survey instrument. The SF- 36 instrument has been used in many large studies of general health of the United States population (and other parts of the world). The questions 22 to 24 ask about the general health of the respondents. Further analysis of this question, will be provided in a later edition. Severe pain is reported by those with TC.



Symptoms and History

Pain is reported most commonly in the buttock and sacrum area. When the sacrum S2 level is affected, the most common area where the pain is referred to is at the buttock and at the sacrum level. When there is a compression of the L5 nerve root, the pain may be referred to the big toe and lateral calf. When the S1 nerve root is affected, it may be referred to the lateral side of the foot and to the back of the heel. An area of the S2 involvement is at the instep or medial side the foot. In some individuals they may be loss of muscle in the inside edges of the foot.

Among the TC group many have associated disc herniations. The most common levels for disc herniation are between L4 and S1.There is also spinal stenosis, a condition where the nerve roots may be "squeezed" from different directions in about 10 to 20% off the respondents. Again, the most common level for spinal stenosis are between L4 to S1. (Q27 and 28).


Tarlov cyst respondents

A total of 88 people with Tarlov cyst responded to this survey. Many of the respondents have known about the condition less than two years ago (Q30).

About 50 % of TC measures 2 cm or about 1 inch. The common locations are at S1 and S2. At S3, 12% have a cyst (Q31).

About 24 % of the group has had an invasive procedure for the condition. Eleven percent have had 2 or more procedures. The most common procedure is percutaneous aspiration. A total of 10 fibrin glue (FGI) procedures were performed. A later analysis will examine the progression of the procedures in each individual. A total of 11 excision surgeries were done and 8 had grafting surgery (Q33).

Among the 77 procedures, there was 1 aseptic meningitis or inflammation of the lining of the spinal cord or brain, 10 bladder problems, 6 bowel control problems and 4 procedures were associated with an inability to walk for at least 4 weeks (Q34).

Six of the 8 procedures continued to have Tarlov cyst with fluid after the FGI procedure. Two procedures did not have post procedure MRIs (Q35).

Three months after the first FGI, 2 out of 7 felt better after the procedure. The majority 4/7 found no difference. Six months later 1/3 felt better. The FGI survey conducted elsewhere on Tarlov.net provides a much more detailed description of the benefit of the procedure (Q36).

Eleven individuals had surgery and at 3 months none felt better. Eight of the 11 felt mostly worse or definitely worse. At six months and one year, 5 out of 8 procedures were definitely worse. In the second surgery, 3 out of 6 felt better after 3 months. Six months post surgery, none of the 5 procedures reported being better. The TC Surgery survey should again be consulted for more details. The individuals who responded to this question would help greatly if they also participate in the TC Surgery survey (ditto for FGI respondents) (Q37).

Several individuals notice that when they have reoccurrence of oral or genital herpes, TC symptoms change (Q38).

A TC cyst may be large and exerts mass effects on the surrounding structures including compression of nerves affecting bladder function. Fifty percent of TC people have frequent urination problem, Twenty eight percent have dribbling difficulty and 19 % have bladder infection. Close to 25% have difficulty initiating urination (Q39).

Constipation (49%) and abdominal pain (38%) affects many TC individuals. The problem may be from ingestion of narcotic analgesics. About 13% have diarrhea (Q39).

Sexual functions are significantly affected. Normal sexual health requires adequate physical and psychological functioning. Two thirds of individuals have lost interest in sex. About a third experience painful intercourse and do not reach orgasm. For many males, erection is not possible (Q40).

Falling asleep is a problem for 60% of TC respondents and they usually cannot find any comfortable position. Sleep is associated with frequent breaks; 70 percent wake up three or more times a night (Q41).

Two third of the TC group are irritable, sad and "blue", and have poor concentration. A full 40% have been diagnosis by their physicians as having depression. About 15% have suicidal thoughts and reflect the depths of their psychological condition (Q42).


What other intervention helps?

About two third of the TC group says stretching and walking 15 minutes causes pain. Eighty (80%) says sitting down 30 minutes causes pain. Fifty percent of the TC group finds lying down is helpful (Q43).

Heat or cold provide comfort to the majority of the TC group. Hot packs are especially comfortable (70% feels less pain). Cold packs help 40% of the TC group.

Fifty percent found massages to be helpful and 20% found it to be painful.

A small number found these procedures to be of benefit: ultrasound therapy (29% less pain), interferential current treatment (16%), inversion tables (17%), cranio-sacral therapy (12%), and herbal remedies (6%).

TENS treatment is delivered by a battery powered, cell phone size machine that costs around US $200 (some are a lot cheaper). Small carbon electrodes are attached to the affected area and the user controls (pulse pattern and intensity) the use of the instrument usually at home. Fifty one percent found benefit from using the machine.

Manipulation, for example, by chiropractors helped 40% and caused increased pain in 22% among those who have tried it. Acupuncture helped 36% of respondents.
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« Reply #1 on: Nov 28th, 2006, 11:01am »

Oral medications are used by many respondents and in descending order from more helpful to less helpful: long acting narcotics, for example, MS Contin (70% decrease pain), short acting analgesics (54%), anti-inflammation medication (48%), Neurontin or gabapentin (45%), anti-depressants tricyclics (37%), prednisone (29%), anti-depressants SSRI (15%), other anti-depressants Effexor, Wellbutrin, Remeron (8%).

Fifty five percent do not feel that their pain control is adequate. Fifty seven percent cannot tolerate the side effects. Half of those who have tried analgesics are afraid of being addicted. Thirty two percent of the physicians decline to prescribe pain medication.

Nine percent cannot afford the pain medication.

Forty percent rate their pain as being severe or very severe. A further 37% have moderate pain. Only 6% of the group reports that they have no pain.

Question 45 to 55 is taken from the Oswestry Low Back Pain Disability Questionnaire. Further analysis will be given after scaling the questions using a statistics package.

Earlier on in question 25, the Roland -Morris Questionnaire was used. These two survey tools have been used in thousands of previous surveys and the TC group may be compared with other published groups to arrive at an estimation of disability.

Fifty two percent of respondents have financial problems and 31% are severely stressed (Q56).

Among the 24 individuals who applied for disability, 8 were rejected. Almost all those rejected (7/8) do not understand why they have been rejected. Many will not appeal because they no longer have the energy or the financial means to get help for their appeal.

This survey has attracted the interest of 24 individuals who do not routinely follow the TC support group.

There were many helpful and interesting comments in the "open questions" and will be summarized and reported later.

This is a preliminary guide to the survey and more detailed versions will be broadcast as we continue with the analysis. There are few comments and opinions in this write up because we hope that members and survey participants will provide their own thoughts and comments.

We thank all those who participated in this survey and those who were on the "pilot’ survey and who also guided the construction of this survey. Thank you Roger, Donna, Judy, Adi and numerous others in the TC support group have inspired many of the survey questions.

http://www.tarlovcyst.net/survey/report1.htm




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