Tarlov cysts are spinal nerve root lesions filled with spinal

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Tarlov Cysts

Tarlov cysts are spinal nerve root lesions filled with spinal fluid, found most often at the sacral level through MRI scanning.
Tarlov cysts can be asymptomatic or cause a serious neurological disorder called Tarlov disease.

Benefits of Hyperbaric Oxygenation (HBOT) – Case Study
HBOT pioneered by Dr Mal Hooper for the treatment and management of Tarlov cysts has been innovative. Many patients with
failed back surgery often have the finding of Tarlov when MRI investigation is taken below the level of the disc operated i.e.
L5/S1 level. In many patients CT scan will not afford diagnosis particularly if the images do not go further than the operated site
which is the level CT scan and MRI are limited. Tarlov cysts are typically sacral cysts and below the L5/S1 level.

Hyperbaric Oxygenation is a method of breathing 100% oxygen at levels greater than normal atmospheric pressure. HBOT
dissolves greater amounts of oxygen into the brain and spinal cord structures. The cerebral spinal fluid oxygen levels are greatly
elevated which immediately reduces chronic inflammatory hypoxic induced irritation. Opportunistic infections also do not
replicate and associated DNA activity (apoptosis) in markedly reduced.

HBOT is safe and non invasive; providing an effective measure to control Tarlov pain and in certain instances - reduction in the
size of the Tarlov cyst.

Example: Ms K Coates who has suffered a 30-year history of complex back and leg pains. Ms Coates grew up on the family
farm riding horses, mustering cattle, performing heavy farm work and for relaxation she competed in horse riding events and
played competitive polo cross. Ms Coates had a long history of horse related falls and injuries. Ms Coates has sought a
multitude of treatment and therapies receiving numerous doctor’s consultations and referrals. She has a history of manipulation,
physiotherapeutic supports and even cortisone injections leaving her condition getting progressively worse. Over more recent
years she also complains of pins and needling and weakness in her legs. Ms Coates has requested an MRI of her back but
informed by her various doctors that MRI was not indicated and her condition could be ‘fixed’.

Eventually MRI revealed a large tear of the L4/5 disc and a large Tarlov sacral cyst. Manipulation is contraindicated and
incidentally cortisone injection to the ‘inside of her sacroiliac joints’ obviously resulted in aggravation of the Tarlov cysts.

Hyperbaric Oxygenation was commenced and within 40-hours of intensive e saturation Ms Coates reported that she was pain
free for the first time in many years! All parameters of clinical assessment improved. The constant swelling she felt across her
sacral spine that pre-empted her episodic back pain ceased. HBOT combined with specific immune stimulating injections and
appropriate physical therapy including whole body vibration resulted in dramatic reduction of her back and leg pain.

Hyperbaric Oxygen Therapy Benefits
•     Mobilizes the patients own circulating stem cells providing a fertile neurovascular platform for further stem cell related
      therapies and implantation (American Journal Physiology - Heart and Circulatory Physiology Nov 05)
•     Elevates the amount of dissolved Oxygen into compromised and damaged tissue structures. Accelerates recovery and
      promotes stabilization of individuals suffering complex and progressive neurodegenerative illness and disease
•     Enhances immune capabilities - increasing white blood cell (WBC) and Natural Killer Cell (NK) function; accelerating
      wound healing and infection control. This has a ‘killing’ effect which dramatically raises the potential to fight chronic
      infection and overcome delayed healing
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•      Accelerates new tissue formation (fibroblast and collagen synthesis) essential for repair – ligaments, disc, muscle and
       bone structures
•      Increases blood flow into retarded tissue by fostering new blood vessel capillary growth into the damaged and
       compromised areas. This is called neovascularization
•      Activates damaged and non-functional neurons (nerve cells). This is extremely important in chronic injury including spinal
       cord, brain injury and neurologically impaired patients. Chronic swelling and inflammation deprives vital Oxygen, which
       results in nerve cells becoming abnormally low in metabolic function. In fact, in many spinal cord and brain injured
       patients’, nerve cells are not completely severed but remain intact. However, the nerve cells are ‘non-functional’ because
       of the massive swelling that ultimately results in progressive scar formation because of Oxygen deprivation. Studies have
       demonstrated by raising the amount of Oxygen efficiency into the damaged area scar formation is reduced, blood flow is
       improved and dormant, non-functional and damaged nerve cells can be reactivated. Obviously, the best outcome is to
       start with aggressive HBOT in the early stages of injury
•      Reinstates normal lymphatic drainage creating a ‘clearance’ effect reducing chronic swelling which causes painful
•      Many prescribed drugs, antibiotics and immune stimulating vitamins and amino acids require Oxygen and are in fact
       greatly enhanced with benefits of Hyperbaric tissue Oxygenation
•      HBOT changes cellular metabolism by altering Oxygen deprivation towards Oxygen efficiency at a cellular level;
       changing the cellular substrate from an anaerobic metabolism (energy poor) into an aerobic metabolism (energy rich).
       This has a net clearance effect enabling the body at a cellular level to detoxify and reverse the radical accumulation of
       toxins that ultimately mutate into abnormal cells (including cancer cells)
•      Significantly reduces the ability of chronic infections including bacterial, viral and cancer cells to replicate and proliferate.
       Chronic infections do not survive in a high Oxygenated environment

Back ground
Tarlov cysts are spinal nerve root lesions filled with spinal fluid. Tarlov cysts can be asymptomatic or cause a serious
neurological disorder called Tarlov disease. A propensity for developing Tarlov cysts may be passed through the mother or
father. A cyst will typically remain asymptomatic until the onset of the disease stage is initiated by an event such as an accident,
heavy lifting, fall, or, hypothetically, another disease such as one of the many forms of Herpes, Chlamydia, Rickettsia,
Mycoplasma and other opportunistic infections. Most often, however, the "trigger" is unknown.

The onset of symptoms may be gradual or sudden, mild or severe. The progression and severity of symptoms differs widely.
Typically, Tarlov cysts in the disease stage cause symptoms in the distribution of the affected nerve root, initially pain, and,
later, dysfunction. Without successful treatment, Tarlov disease may result in disability and require major lifestyle changes.

Tarlov cysts differ in structure. A cyst might incorporate nerve elements or be free of them. A cyst can be valved or non-valved.
A valved cyst has a structure in its neck that makes it easier for cerebrospinal fluid (CSF) to enter the cyst than to leave it. In a
non-valved cyst, CSF flows freely between the cyst and the dural tube. Patients often describes ‘swelling that comes and goes’

Tarlov cysts are typically on posterior roots; anterior cysts are rare. Multiple Tarlov cysts are not uncommon. Although a large
cyst can cause symptoms by pressing on an adjacent structure, symptoms may also be caused by hydrostatic forces of the
cerebrospinal fluid. The pulsating spinal fluid exerts pressure on nerves in the cyst or cyst wall, thus causing the cyst to expand,
stretching nerve elements and causing or increasing symptoms.2 Therefore, cysts even smaller than one centimeter can be
highly symptomatic. Manipulation in contraindicated.

Common symptoms include sciatica and pain in the sacral area, and buttocks. The legs and feet may or may not be involved.3
Symptoms can be opposite-sided. Tarlov cysts can also cause pain and disorders in the organs of elimination and reproduction,
hypoesthesia, paresthesia, and pain in the thigh from lack of blood supply (neurogenic claudication).4 The postures of sitting,
standing, walking, and bending are typically painful, and reclining flat on the side is usually the only posture that offers relief.

Pain from Tarlov cysts is similar to pain from herniated lumbar discs and some gynecological disorders. A person who has a
Tarlov cyst and any Tarlov cyst symptom needs evaluation by a specialist who has the expertise to determine if the symptoms
are from a Tarlov cyst or another cause. However, it is the rare specialist who is familiar with Tarlov cyst symptomology and
recent research on Tarlov cyst treatment.

Few patients understand that neurology is a vast subject and that it impossible even for a specialist to be up-to-date on every
rare disease. When faced with a patient asking about an MRI report that indicates a Tarlov cyst, the specialist may consult a
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neuroscience textbook and find there the initial, mistaken supposition of Isadore Tarlov that these cysts would not cause
symptoms. This notion was soon contradicted by clinical experience and long ago corrected in journal articles by Tarlov and
others, but misinformation on this most crucial aspect of Tarlov cysts persists in medical books.

A major turning point in the medical history of Tarlov disease occurred in 2000 with the publication of the first of several major
medical journal articles that report the outcomes of particular surgical approaches to their treatment. Nevertheless, out-of-date
textbooks continue to be used by specialists, and this results in the denial of pain management and disability status to patients
with severe symptoms. Untold numbers of persons with this disease suffer for long periods without diagnosis and treatment, and
some have surgery for another disease when the actual cause is Tarlov disease.5

The treatment of Tarlov cysts is controversial. The reports of our members from around the world suggest that surgical
treatment is difficult to obtain and quite risky when it is found. As one doctor said to a member, "You would need to ask 25
surgeons before you find one who operates on Tarlov cysts, and then you would not want him to do it." However, there are
undeniable examples of successful results from both surgical and non-surgical interventions, so the choice of surgeon is of the
greatest importance and patients should be prepared to travel, possibly for a long distance, for reliable treatment, particularly if
one is seeking a major surgical operation rather than the outpatient alternative.

Our surveys show that some members of this support group have benefited from treatments at institutions where outcomes
have been published, but at a much lower rate than the published results. Our surveys also show that several surgeons who
have not yet published and do fewer procedures have better track records. At Johns Hopkins, Baltimore, neurosurgeon Donlin
Long and neuroradiologist K. Murphy collaborate to provide 1) a minimally invasive CT-guided procedure for valved cysts, and
2) surgery by Dr. Long if the CT-guided procedure fails or is not appropriate to the cyst.

For MRI of Tarlov cysts, Dr. M. R. Patel recommends scanning axially through the cysts and, post-operatively, to obtain pre-
and post-Gadolinium axial images. Some Tarlov cyst patients cannot tolerate lying on their backs for a full lumbosacral scan
without sedation, so the scan might be completed in multiple sessions or tailored to scan only the relevant portion of the spine.

Conventionally, lumbosacral scans stop at the S1 level. It may be necessary, therefore, for the prescribing doctor or even the
patient to inform the technician that the S2 and S3 levels must be scanned.

The fundamental premise of the Tarlov Disease Support Group is give and take. Individuals with Tarlov cysts who take from
others' experience and who will give back by full participation in our post-operative surveys are invited to join the Tarlov Disease
Support Group. Physicians as well as caretakers and family members of patients are welcome. There is no charge for service;
the group operates on the basis of donations.

Is the condition Tarlov cysts or Tarlov disease?
The term Tarlov cyst is ambiguous, inasmuch as it may be taken to refer to a harmless anatomical feature or a potentially grave
disease condition. For this reason, we are introducing the unambiguous term, Tarlov disease.

In promoting the use of the name Tarlov disease, we are following the convention of naming a disease after the researcher who
first discovered or effectively disseminated information on the disease, in this case, the great American pioneer in neuroscience,
Isadore Tarlov.

Are Tarlov cysts a kind of cancer?
No. Symptomatic Tarlov cysts are morbid enlargements that continue to grow, which, according to some medical dictionaries,
qualifies them to be classed as tumors. Although Tarlov cysts continue to grow, they do so, however, because of the pressure of
spinal fluid within them, not through uncontrolled cell division as in the case of a neoplasm or cancer. Like cancer, Tarlov cysts
can cause severe pain and damage distant organs such as the bladder and the brain by affecting the flow of cerebrospinal fluid
and nerve energy. Therefore, although Tarlov disease is not a form of cancer, and although its progression is typically slow,
Tarlov disease should be taken with great seriousness.

Can Tarlov disease cause death?
Tarlov disease must be taken with great seriousness, because Tarlov disease can advance to the stage of constant severe
pain. If not successfully treated, a person in this stage of the disease can die from the stress of the suffering, from the pain
medications (hepatitis), or from suicide.

What are the disability impacts of symptomatic Tarlov cysts?
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Different Tarlov cyst sufferers respond differently to various postures and activities, and there is no typical onset or rate of
progression of the disease. Most have difficulty sitting, but a very few can sit all day. Some are relieved by standing or walking,
though the great majority are made worse. Some experience severe pain at onset, but the symptoms are mild at onset in other

Many persons with Tarlov cysts report that they are able to exceed their usual postural or activity limits for a time, but they then
"pay for it" by experiencing a delayed flare. For example, after exceeding their quota earlier in the day, they will later in the day
experience pain that is so severe that, even with narcotic pain medication, they cannot sleep. Flares can last for days, weeks,
and even months

A doctor might write, correctly, "The patient showed no sign of distress during the visit," and the patient will be denied disability
benefits because of that statement, even though, in fact, the patient was afterward housebound and bedridden for several days
or weeks, because the amount of sitting and walking involved in the doctor's visit exceeded his or her personal quota.

An individual's symptomology can vary drastically in response to environmental conditions or other variables. The disability
impacts of symptomatic Tarlov cyst were summed up in the following statement by a spine specialist retained by a American
governmental agency (Social Security Administration) to evaluate a Tarlov cyst patient: "He needs to sit when he needs to sit,
walk when he needs to walk, and lie down when he needs to lie down."

How to get a diagnosis?
There are exceptions, but most members of our group have found it is difficult or impossible to get a diagnosis of symptomatic
Tarlov cysts from a neurosurgeon who does not himself operate on Tarlov cysts; however, specialists who treat Tarlov cysts are
few and far between. It is advisable to join the TarlovTalk Forum (free of charge) in order to review the outcomes of several
surgeons, and to note the great differences between outcomes achieved by different surgeons. A surgeon might operate
frequently and Tarlov cysts yet have a low rate of success, or operated less often with a high rate of success. For the patient
who lives at a distance, specialists are often willing to review films, arrange a phone consult, and provide a preliminary
diagnosis and proposal for treatment, pending an office visit.

However, any competent neurosurgeon can rule out all other possible causes of the symptoms as a useful and necessary
starting point. Therefore, it could be advisable to ask your primary doctor to request a local neurosurgeon to rule out any
possible cause of your symptoms other than Tarlov cysts, even though that surgeon might say, incorrectly, that Tarlov cysts
never cause symptoms.

Your primary doctor can also refer you to a local urologist to check for neurogenic bladder. The urologist can examine the
bladder wall and perform tests of bladder functions (urodynamics) that are affected by sacral nerve root dysfunction.
Neurological/orthopedic examinations usually include movements that can cause a severe, long-term flare to a patient with a
Tarlov cyst. It is suggested to inform the doctor of your limitations. Follow link for an example.

What are the current nonsurgical treatment options?
Fibrin glue injection (FGI) is nonsurgical treatment option without the costs and recovery time of open surgery. The procedure is
for valved cysts only, so a myelogram with delayed CT scans will often be ordered to qualify a cyst for FGI. FGI is typically
carried out by an interventional neuroradiologist, sometimes with the presence of a consulting neurosurgeon. The success rate
of this treatment varies widely from hospital to hospital (subscribe to TarlovTalk to obtain access to outcome surveys).

A cyst sealed by fibrin glue can continue to shrink for a very long time. In the Author's experience, an S2 cyst sealed in 2003
suddenly became asymptomatic after 2-1/2 years. An MRI showed the cyst had been totally absorbed back into the nerve root.

Today, for convenience, packaged fibrin glue (Tisseel brand) is use instead of glue made from the patient's own blood at the
hospital lab. At Johns Hopkins Medicine, Dr. Kieren Murphy recently began uses an additional needle to vent the cyst during
aspiration and injection, and early reports on outcomes of FGI at Johns Hopkins are promising.

One hypothesis developed in our alternative treatments forum (TarlovAlt) regards the possibilities that 1) herpes viruses and
other opportunistic infections can cause some Tarlov cysts to be symptomatic, 2) herpes viruses and others thrive in an acidic
(hypoxic) environment, 3) diets or supplements that make the Tarlov cyst environment alkaline can thereby reduce or eliminate
Tarlov cyst symptoms, and 4) L-Lysine, a widely available and inexpensive amino acid known to be effective against Herpes
could relieve Tarlov disease symptoms. Several members of the Tarlov Disease Support Group have achieved control of their
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symptoms through dieting or L-Lysine. One member reports the elimination of cyst that was displacing the thecal sac after
several months on L-Lysine.

What are the surgical options?
The number of surgeons who have established a good ratio of successful to failed operations, confirmed by the experience of
our members, is extremely small. It is not unusual for a surgeon to have been "burned" by an attempt at Tarlov cyst surgery that
failed badly, harming the patient and the surgeon's reputation, as a result of which the surgeon, and other surgeons who hear of
the experience, say that they "would not touch a Tarlov cyst with a 10-foot pole".

There are a number of different types of Tarlov cyst surgery that are described in articles found at this Website and at the
TarlovTalk Forum home page. Often any type of Tarlov cyst operation is called a sacral laminectomy, although the laminectomy
is only the orthopedic portion of the operation--the removal of bone needed to gain access to the cyst(s).

Tarlov cyst operations are available only where a surgeon is interested in treating this disease. Most top hospitals around the
world, with several notable exceptions, provide no treatment whatsoever for Tarlov cysts. When it is performed, it is most often a
neurosurgeon who performs the Tarlov cyst surgery. However, orthopedic surgeons also do Tarlov cyst surgery.

Surgeons' claims of a high level of success need to be questioned, inasmuch as patients are reluctant to complain to their
surgeons. It is possible that the surgeon is offering the surgery that he believes to have a high rate of success, but when our
members report their results, the success rate is very low. Therefore, reports on surgical outcomes from members of this group
may well be more reliable than the surgeon's estimation.

Post-operative CSF leak is the most common complication, but these leaks can heal themselves in some cases. The patient
might be advised to stay in bed with the foot of the bed raised, and to wear a corset to control swelling. CSF leaks can also be
sealed in a re-operation. A minority of our members have experienced a post-operative CSF leak.

Only one member sustained a serious infection--bacterial meningitis--from a Tarlov cyst operation. The most common negative
outcome is the failure of the operation to eliminate the symptoms, and it is not rare for the surgery to worsen an existing
symptom or cause a new one.

Therefore, it is strongly advised to join our TarlovTalk forum, read previous messages to learn about the experience of members
who had surgery at different hospitals, and review the results of the current Tarlov Cyst Operations Survey that was launched in
January 2005. It is necessary to join the group in order to have access to all surveys.

Do Tarlov cysts cause bladder problems?
Tarlov disease often leads to retention, chronic subacute urinary tract infection (UTI) and other bladder problems, including
interstitial cystitis, with or without felt symptoms. Symptoms might be falsely ascribed to age, gender (in the case of women), or
other causes, rather than to the Tarlov cyst.

Individuals with these Tarlov disease symptoms are often informed that their urine tests are negative for UTI. However, this
means that the sample is negative for acute infection. It is suggested to ask if the test is positive for subacute infection. Tarlov
cyst suffers with chronic subacute UTI and cystitis are also vulnerable to discomfort from diets that create urine that is either too
acid or too alkaline. In this case, a pH-balanced diet will be helpful. This topic is discussed in the TarlovAlt Forum.

If you have one or more Tarlov cysts, one important question is, "Do I have a neurogenic bladder," that is, a bladder that is
functioning improperly because of a sacral nerve disorder. Another important question is, "Do I have interstitial cystitis (IC)?":It
possible that you need treatment for both Tarlov cysts and bladder disorders that are related Tarlov cysts.

What tests will the urologist do?
The standard urological test for Tarlov cyst disease is urodynamic testing for neurogenic bladder. In one component of this
testing, the bladder is filled with water through a catheter and the responses noted. Signs of sacral nerve dysfunction shown in
this test include: 1) a delay in the "go" sensation, resulting in abnormally high bladder volume and 2) reduced compliance, that
is, the bladder does not expand in proportion to the increased volume of liquid, resulting in abnormally high bladder pressure.

Another useful test is cystoscopy: a tube with a miniature video camera is inserted into the bladder via the urethra. A normal
bladder appears smooth and supple. A neurogenic bladder shows muscularity (trabeculation). This condition occurs when the
sphincter fails to open normally on attempt to urinate, causing the bladder to squeeze harder to expel the urine. A third possible
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test would be a kidney ultrasound to see if urine is backing up into the kidneys. The ultrasound is not uncomfortable and the
others tests entail only mild discomfort.
If urological test results are consistent with sacral nerve defect, then you could have an urgent need for treatment for Tarlov
disease. Urologists who test for neurogenic bladder understand that a neurogenic bladder is caused by a spinal injury or
disorder, so in the absence of any other such injury or disorder, the finding of neurogenic disorder by a urologist is close to a
"laboratory test" for Tarlov disease.

If you are suffering from neurogenic bladder, self-catheterization will give temporary relief while you await treatment for the
primary cause by a specialist in Tarlov disease. Members who have relied on self-catheterization say that, once the initial
reluctance is overcome, it is not as difficult as one might imagine.

What tests do neurosurgeons use?
Tarlov cysts are usually discovered when MRI's are performed for patients with low back pain or sciatica. As part of the work-up
for surgery, some neurosurgeons prescribe CT-myelogram, or, infrequently, EMG.

The CT-myelogram involves a lumbar puncture to inject dye. Images are taken at intervals to ascertain the rate at which the cyst
fills with spinal fluid. You might or might not have a headache for a day or two afterward the lumbar puncture. There are lumbar
punctures in which the patient feels virtually no pain, and there are lumbar punctures in which the pain is excruciating.
Obviously it is preferable to have the puncture performed by an expert who is known for precise and painless punctures.

Gad or Gadolinium is a chemical injected into the bloodstream to help enhance or show structures with MRI. This kind of
injection usually reserved for post-operative scanning.

EMG stands for Electromyogram which loosely translated means electrical testing of muscles, but in fact has come to mean
electrical testing of nerves and muscles. On the one hand an EMG can find nerve weakness referable to a Tarlov cyst; on the
other hand the absence of such weakness is not a basis for concluding that the cyst is asymptomatic.

How about exercise, physical therapy or TENS?
It is not possible to "work out" Tarlov cyst symptoms through exercise. Many exercises that are commonly therapeutic for back
and leg pain worsen Tarlov cyst symptoms. One of our members cautions:
    "I had physical therapy and it made things much worse -- more pain. I then had acupuncture (with electricity in the
    needles) and went through 12 hours of the most intense pain I've ever known. I had an MRI done before acupuncture
    and after (just a coincidence) it seems the acupuncture caused hemorrhaging in my spine."
However, acupuncture or the right kind of physical therapy can bring substantial relief.

Deep tissue massage by a friend, loved one or professional can bring substantial if temporary relief from pain caused by Tarlov
cysts, such as in the sacral area, hips and thighs where sore points are formed.

A therapist might not know how sensitive the surgical site is after a Tarlov cyst operation (much more sensitive than after disc
surgery, for example). Therapists must be instructed not to work in such as way as to cause vibrations or rapid motion in the
surgical site. Failure to heed these precautions can result in a severe flare. If acupuncture is prescribed, seek an acupuncturist
who is a pain specialist. There is no inherent danger in needling around the surgical scar as it begins to heal.

Public hot tubs and spas (unlike swimming pools) are inherently dangerous even when one is in perfect health. However, if you
have your own spa, its use could reduce stress, pain, and the need for pain medication. Use at moderate water temperatures
and keep the surgical site away from any but the mildest jets.

Your therapist or doctor might prescribe a TENS unit, that interrupts pain signals to the brain with electrical stimulation. Placing
electrodes too close to the spine can produce headaches. One of our members reports,
    "...four pads are placed around the painful area in an X fashion. This has helped with the buttock pain for me. I do have
    to be careful not to place the electrodes directly over the Tarlov cyst--this increases the pain." Another member finds
    that she can get by with using narcotic medication for flares only, by the regular use of low-intensity TENS with an
    anticonvulsant such as Neurontin or Keppra."
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Anecdotal evidence suggests that a person who has a Tarlov cyst, operated on or not, should avoid heavy lifting, falls,
accidents, and straining. Each person needs to find the most suitable kinds and amounts of activities within the guidelines given
by his physician.
Avoiding chronic or acute exacerbations could require changes in habits and lifestyles. Favorite sports, exercises and
recreational activities may need to be surrendered.

If severe symptoms do arise, it could be necessary to drastically limit everyday activities such as sitting, standing and walking.
Unless one has successful treatment, these limitations could require changes in career plan, occupation, and in working and
living environments.

Do Tarlov cysts cause bowel problems?
40% of those with Tarlov cysts say they have no bowel problems. However, Tarlov cysts can affect nerves that control
elimination, resulting in constipation or fecincontinence.

Constipation can be a major contributor to the pain suffered by persons with Tarlov cysts, before or after surgery. Moreover,
narcotic pain medications cause constipation, and, after an operation, greater amounts of pain medication are typically required
while the site heals. Bowel and sphincter sensations and are dulled as a side-effect of the surgery or as a symptom of ongoing
nerve compression. Some of these effects may be permanent.

Straining at the toilet when constipated can creating a prolonged Valsalva event that severely aggravates sacral nerve irritation.
It is therefore suggested to moderate the ingestion of foods and supplements that cause constipation and to add foods that
increases bulk and moisturize the bowels. Consult your primary or a bowel specialist as soon as possible, before symptoms are

The following is a list of various measures that some of our members have found helpful for constipation. Colonic irrigation and
enemas are measures of last resort, to be used only when dietary changes and stool softeners fail, or, with doctor's approval
and instructions if a surgical operation or other event causes the bowels to "shut down".
1. Foods that treat constipation.

2. Psyllium seed powder, orange Metamucil or the straight stuff found at health food stores, or similar products found in
your part of the world. Use only if you will increase your water intake accordingly, or these products will worsen rather
than help constipation.

4. Local fruits Have a large bowl of fruit for breakfast every morning.

5. Enemas Rather than irritating or damaging a nerve by straining at a hard stool, take an enema in a position that can
be comfortably assumed without causing pain.

6. Rectal douching Water under light pressure is forced around and above the obstruction by a professional using
special equipment, or by one's self using an ordinary shower hose.

What if I am incapacitated after surgery?
According to reports from members, one could be permanently incapacitated even if there are substantial benefits from an

However, patients often reach conclusions about the outcome of surgery a few days or a few weeks after surgery, whereas it is
possible to experience progressive improvement in physical conditioning and increased exercise tolerance well beyond the first
anniversary of the surgery.

To maximize your potential for recovery, be extremely dedicated to following the post-operative instructions of your surgeon. Err
in the direction of doing less than permitted, and follow the common-sense rule to stop immediately any activity that makes the
pain worse.

When an operation fails and all treatment options have been exhausted, the quality of pain management, including lifestyle
adjustments, is particularly important. Pain management can make the difference between a life of agony and despair and a life
that is rewarding and meaningful.
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If you have suicidal thoughts, let others know and welcome help. Stay with this support group, and make and keep friends
through exchange of email and phone calls with other members. However, one needs real live people also, so make an effort to
socialize more, and to deepen relationships in spite of the limitations of the disease.

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