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Tarlov cysts
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Tarlov cysts

I was diagnosed a few years ago with three tarlov cysts in the sacrum.  I have severe pain directly over the sacral area with radiation of pain across my buttocks, down the back of my legs, left worse than right, "bear trap sensation" around left ankle, perivaginal pain, perianal pain.  Pain increases with standing, walking, sitting or riding for any period of time.  I have had SI joint injections, nerve blocks, caudal epidurals, etc to no benefit.  There is evidence of errosion of the bone inside the sacral area from the largest cyst. I am having a difficult time dealing with the pain and need to find someone who acknowledges the fact Tarlov cycts do cause symptons and what, if any, course of treatment could be ensued.  I would be more than willing to go to the Cleveland Clinic, as I hear it is the best, but do not know where to start.  I am in so much pain and so frustrated.  Pain wakes me up multiple times during the night.  Please, is there anyone who can help me.  Susan McDonald
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There have been reports in the literature of Tarlov cysts producing symptoms if there's nerve root compression. One thing that can be done to help document nerve damage is an EMG of the leg.  If the EMG shows nerve damage and the MRI only shows the cysts in the absence of disc disease or any other lower back problem, then the Tarlov cysts could be the culprit. If you are willing to come to the clinic for an evaluation, start with a spine surgeon (Drs. Benzel or Kalfas) and bring your MRIs, not just the report. They will revisit the diagnosis and make sure it's not something else, especially if there is true bony erosion. In the meantime, try a pain management specialist if you haven't already. Neurontin can be helpful. And use common sense in all your activites, don't overexert yourself or lift anything heavier than a gallon of milk. Good luck.
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Dear Susan,

I will be interested in hearing what the doctor has to say about this.  My understanding is that Tarlov cysts are another name for arachnoid cysts.  I have all the symptoms you describe except for the bear-trap feeling (although I have heard this described by several other patients with my condition) plus more problems that have gradually evolved over time.  In the beginning of my problem, however, your description might have matched mine word for word.  In my case, I don't have arachnoid cysts - but I do have arachnoid adhesions, a type of scar tissue that can form inside the spinal canal.  With me, this scarring formed after surgery to remove a cauda equina tumor when I was 29, but I know there are many other mechanisms by which inflammation can cause both scarring of the arachnoid layer of the spine, as well as the formation of cysts within the arachnoid layer.  

Arachnoid cysts and arachnoid adhesions do seem to run together, often linked to the same underlying cause - although I don't mean to exclude the possibility that an arachnoid cyst might form in isolation for some other reason.  I just write this note to let you know there are many others of us out here with spinal disorders relating to either arachnoid scarring and/or arachnoid cyst formation.  

Getting the right information about the particulars of your condition sometimes requires educating yourself about many overlapping syndromes.  Depending on where the cyst and/or scarring is, symptoms can vary a lot.  The bulk of these patients will be found under the broad umbrella of "arachnoiditis," a somewhat misleading term that seems to imply an ongoing "itis" (inflammation) of the arachnoid layer.  Actually, many of the worst consequences of arachnoid inflammation seem to come not from the inflammation itself, but from the adhesive scar tissue within the spinal canal that persists long after the inflammation has died down.  However, most of the medical literature still refers to this condition of intradural scarring as "arachnoiditis," so that remains the best way to find data.

Because arachnoid cysts and arachnoid adhesions often show up together, it can be difficult to sort out which of these is actually the cause of symptoms in any one patient.  Often, it seems to be a mixture of both.  I just wanted you to know that this is an issue that comes up a lot with other people too.  I would be happy to share what I have learned from my own experience with this disorder, and to help point you toward the places where you can find other patients who specifically have arachnoid cysts as well.  There is a great deal of information available about this spectrum of disorders, but unfortunately much of it is scattered in a way that makes it difficult for patients and their doctors to access.

I write this mainly to touch base with you as a fellow patient, and look forward to hearing the doctor's thoughts about your questions.

Sincerely,
Annika
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Annika-thanks for you imput.  The other problem, as though the tarlov cysts are not enough, I have fibromyalgia.  I just recently filed for partial disability and the insurance company is giving me a rash of !@#!@#!@. I am at a point with the pain and the subsequent depression that I do not know where to turn.  My neurologist acknowledges they are there are "the largest he has ever seen".  He has tried my on every form of "nerve medication" you can imagine with absolutely no good results and some pretty horific side effects.  My "Pain Management Specialist" doesn't talk to me and will not fill out disability forms - he just injects.  I am hoping when the doctor from this forum answers me that he can steer me to someone at the Cleveland Clinic in West FL.  I really need some help.  Thanks, Susan
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Dear Susan,

The symptoms of arachnoiditis and/or a tethered spinal cord (tethered by arachnoid adhesions) can be identical to those felt to be caused by fibromyalgia.  This is a topic that has concerned me greatly, ever since I have come across how often this diagnosis is given to patients who have known disorders of the spinal cord and spinal nervous system.  

There seems to be a failure in the general medical community in recognizing the "softer" signs of damage/dysfunction of the nervous system.  One of the main arachnoiditis symptoms that makes doctors consider fibromyalgia is the pain that occurs with different movements or body positions, which makes your body feel "trapped."  But in arachnoiditis patients, this is simply what happens when normal body movement causes increased tension on the stuck nerves and/or spinal cord.  When your spinal cord gets pulled on, it hurts.  And it may hurt in weird places, because you're feeling the pain referred from that part of the spinal cord/nerves (so you may feel pain in your legs, butt, perineum, upper body, even though it's actually the nerves or cord themselves that are getting pulled on).

In addition, when the scar tissue causes a tethering effect on the cord, there can be gradual damage to the motor nerves descending the cord (I have this).  In the early stages, the weakness resulting from this may be quite subtle, but the patient may complain of excessive muscle stiffness, tight tendons, and the bones "crunching" against one another (this seems to be because of the changes in the musculature). In these cases, the stiffness is coming from aberrant messages from the nerves to the muscles, rather than the muscles themselves.  This pattern of "stiffening" is called "spasticity", and happens whenever any of the upper motor neurons of the brain or spinal cord are damaged.  

It is much easier to recognize spasticity when it is further advanced, and most doctors are used to diagnosing spasticity in obvious cases, as when this happens as a result of stroke, cerebral palsy, spinal cord injury, or advanced MS.  However, in those diseases in which the motor nerves are damaged very gradually - such as MS, and tethered cord/arachnoiditis - you can see more clearly that it all happens on a spectrum, and that in the early stages the patient often has symptoms, but no findings that are obvious to the doctor on physical exam (muscle wasting, weakness, or reflex changes).  Only when they become obvious at a later point can the doctor feel sure what was going on, in hindsight.  Doctors who see a lot of these patients start to become more comfortable making the diagnosis on the basis of the patient's reported symptoms at earlier stages.

It is hard for me to keep reading accounts from patients with known spinal cord abnormalities, or known spinal injuries, who display all the signs of mild-moderate upper motor neuron damage, yet have their chronic muscle tightness, weakness, and contractions written off as "myofascial pain syndrome" or "fibromyalgia."  Not because I don't think those are real diseases, but because it fails to make the connection between the symptoms and their likely underlying cause in patients who have a spinal abnormality one would expect might cause these exact problems.  I'm not saying this is you, because I don't know if you have muscle problems.  But this issue comes up a lot among all groups of patients who have rare, poorly-understood spinal disorders.  It's fine for a doctor to consider all the possibilities, but one really has to be careful that one is capable of recognizing the signs of spinal cord/nerve unhappiness when they show up in these patients who have known abnormalities.

Other than the confusion surrounding mild muscle spasticity, another group of symptoms that can get an arachnoiditis patient diagnosed with fibromyalgia are the neuropathic pains that naturally result from the ongoing mechanical traction on delicate nervous system structures.  These symptoms are an expected part of having arachnoid adhesions.  Part of the problem is that there are many misunderstandings within the medical community of just how many symptoms the arachnoid adhesions themselves can cause, and what parts of the body may be involved.  

Once the arachnoid adhesions have a tethering efect on the spinal cord, that tension can potentially be transmitted through the entire length of the spinal cord.  This varies from patient to patient, depending on the exact effects of scarring in limiting the normal movement of the spinal cord.  Over time, some arachnoiditis patients with a tethered cord can develop abnormalities in their upper spinal cord, including what is called a syrinx (a hollowing-out of the spinal cord itself).  I just mention this to show the known link between lumbosacral adhesions and later problems in the upper cord.  A syrinx is now thought to usually be the end result of some other underlying spinal disorder, inclusing things like tumors, but also arachnoid adhesions and long-standing tension from a tethered spinal cord.  The syrinx may take a long time to form, but transient pain/numbness may show up earlier (this has been described in the literature as a "presyrinx"), due to the basic forces acting on that bit of the spinal cord that even tually could cause it to form a syrinx.

The result of this physical phenomenon is that many arachnoiditis patients have symptoms in their upper body and arms, as well as some other places.  This tends to come on in positions in which there's increased tension on the spinal cord, such as lying down at night, or prolonged sitting.  I have this, and if you read enough stories from patients with arachnoiditis and/or tethered cord, you'll see it come up again and again.  The medical literature explains scientific basis for this very well as it occurs in tethered cord and syrinx development, both of which are associated with arachnoid adhesions, and so it's not actually a medical mystery.  However, many of the more recent papers are new (as of this year), and the consequences of this information have not yet trickled down to many of the doctors who see these patients.  Poor understanding of the mechanics of the spine is the norm, unfortunately.  A lot of those patients end up with double or triple diagnoses, because their doctors can't understand how upper body pain/numbness/weakness could be linked to a lumbosacral problem.

A big part of the problem is that doctors are limited in their diagnostic tools, yet may not themselves be aware of these limitations.  MRI, EMG, physical exam - all are good for some things, but will miss others.  That's fine if the doctor understands what may have been missed - but too often I find a negative test result is taken to mean that the area investigated must be completely normal, without any understanding of whether the test would have been able to show the abnormality you're looking for or not.  The classic example for this is the EMG, done to look for damage to the motor nerves.  I am amazed that I still find doctors (even neurosurgeons) who think a normal EMG means the entire motor nerve system is intact.  In fact, the EMG is only able to test the second set of motor nerves that leave the spinal cord to travel to the muscles themselves. The upper motor neurons, which make up most of the motor fibers within the spinal cord itself, are completely invisible to an EMG.  

Another area of confusion is that joint pain is a frequent part of the whole arachnoiditis syndrome.  This falls into two general categories.  The first is that the pain may be purely neuropathic, meaning that the joint itself is okay, but the nerves to the joint are misfiring.  The other category, however, encompasses patients like me who are limping around on legs that have weak muscles from partial muscle damage.  When the muscles can't support the joints properly, this can put excessive, imbalanced forces on the joints as you use them, hastening the wear and tear that leads to arthritis. Eventually, clear signs of arthritis will develop on MRI and X-ray, even in young patients.  This has gotten some doctors confused into looking for some rheumatological component to explain the disease (i.e., fibromyalgia) when it actually is a simple consequence of the biomechanics of using a weakly-supported joint.

You may not have muscle problems at all, so I don't mean this necessarily to apply to you.  I just mention it because it's one of the main slip-ups I've seen in patients whose central nervous system injuries are diagnosed as fibromyalgia or myofascial pain syndrome.  A smart, experienced neurologist will know how to sort through the different possibilities, knowing that there are certain types of nervous system damage/dysfunction for which we currently have no reliable test.  One has to take the patient's story together as a whole, and have had direct experience with similar patients, to avoid falling into the common pitfalls.

I normally try to avoid writing a response before the doctor does, because I don't want to seem to contradict their reponse.  You should take everything I have said here as information passed on to you from a fellow patient, which may or may not apply to you.  

Sincerely,
Annika
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Now I'm really confused, my last radiology report stated there were several Tarlov cysts throughout my thorasic spine. I have always read that Tarlov cysts are only found in the sacral area. So how could these have been labeled Tarlov when in the thorasic, does anyone know?
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Hi,

Everything I wrote above was pertaining to generic arachnoid cysts inside the spinal canal, which are known to be associated with arachnoiditis. But even though Tarlov's cysts are classified as a specific type of arachnoid cyst (a perineural arachnoid cyst),they may be a whole different entity in terms of causes and prognosis.  That's my fault - when I'd heard/read about them before, they just came up in the category of arachnoid cysts.  So, just take everything I said in the context of intradural arachnoid cysts/arachnoiditis.

Thanks,
Annika
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Annika-OK - you sound incredibly knowledgable about all of this but who do I go see?  MRI did show the three cysts, one very large with one area of onset of bone errosion.  I have been told these things will grow to the point eventually of causing compression fractures.  I live in South FLorida and am clueless on where to go.  What I would really like to do is to check in some place that has knowledge of this and have a complete "systems" check as I also have the fibromyalgia, which may or may not be, trimeningeal neuralgia right side of face, empty sella syndrome.  I have been having a lot of lower pelvic pain also.  Is there such a place?  Thank you for the help you have give me.  If you want to email be directly, my address is ***@****
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Also-who is Dr Ed Benzel and which Cleveland Clinic is he located at?  Does this man know about this condition and the treatment for it
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Dear Sue,

This sounds very frustrating.  I get all my medical care up in Boston, and finding the right doctor to evaluate these things is not something I feel like I've figured out for myself.  The one thing about cysts is that there's a potential surgical treatment, so the most important thing to do is to get several competent neurosurgical opinions. Most other kinds of doctors will never have heard of this problem, and will be pretty clueless.  

But, where to go?  If you have the means to travel, I'd go for the top neurosurgical centers, wherever they are.  Even if you have to pay out of pocket for the consultation, I would do it.  The word "cyst" may make the problem sound benign and not such a big deal, but a cyst in the wrong place can have serious effects.  I have read the same research you have, about Tarlov cysts often being incidental and of no clinical significance (meaning, they're not related to the patient's symptoms), but there are also reports of patients having symptoms of full-blown cauda equina syndrome from these cysts.  Certainly, all the symptoms you describe are those one would expect if there were compression of the sacral nerve roots.  

I don't have any experience with the doctors at the Cleveland Clinic, although I have heard they are excellent.  I would be prepared to go for more than one opinion, not because the first one won't be any good, but simply to protect yourself by making sure you're aware of all the different possible recommendations and options you might have.  The key with any spinal surgery is advance preparation and making the right choice to begin with.  It's one of the areas of the body that is not very forgiving of mistakes.  I don't say that to scare anyone, but simply to express the reality.

Check out the websites for each of these centers.  They should include bios for each surgeon that describe their training, background, and clinical interests/specialties. Make sure you get someone who specifically is trained as a spinal neurosurgeon.  Many surgeons operate on both brains and spines.  I'm not saying a good surgeon can't do both, but in general it pays to see someone who only does spine, all the time.  

In addition to the Cleveland Clinic, other centers that are well-known for neurosurgery are Johns Hopkins Medical Center, the Mayo Clinic, and the neurosurgical departments up at Harvard (where I got my care).  There are several excellent spine neurosurgeons in New York, at NYU and Columbia.  There are many more, so forgive me for not mentioning other centers that may be as good or better than these.  I just don't have personal experience with any of them.

I can check on some of the names of people at these places.  Start off by seeing what you can find from their bios on the web.  That will tell you a lot.  Some of the people I've seen really only operate on tumors, so they wouldn't be appropriate for you.  I'll think about it and see if I have some preliminary names from other patients... but take everything with a grain of salt, because none of these surgeons come with a foolproof guarantee.  Regardless of the recommendations any one surgeon might have from happy patients, use your own instincts.  It's a risky field, and the only way to really educate yourself about how to make the right choice is to meet with several doctors, talk to a lot of different patients, and read as much as you can about your disease and other symptoms.  Once you find a doctor you feel you can trust with your care, then you can let him take over.  But picking the right one is something where you do have a great deal of control, so take your time and expect to feel somewhat overwhelmed by the impossiility of finding reliable information about this.

Talk to you soon,
Annika
***@****

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I have 5 Tarlov Cysts on the sacral area. I have had 8 spinal cord surgeries in less than 3 years. I have an implanted medication pump that contains Morphine & Bupivicain, pumping continuiously. I had my third spinal cord stimulator implanted in less than 3 years.
Ambulation is difficult, I cannot bear weight on my right leg. I have been incontinent with bowel & bladder since the first surgery in July 1999.
I am NEVER pain free. The Morphine helps, I literally cannot move or be touched without it.
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Annika,

You sound very informed.  Can you give me some links to medical information on this subject.  You have just described me completely.  I had a spinal fusion a few years ago and was told a few weeks ago that tarlov cysts were found on a CT.  please let me know were I can find some medical articles or info to show my doctor.  thanks

warly,
dabee
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Hello Everyone,
I was diagnosed with Tarlov Cysts last April I have noticed that some on here have them as well, I am looking into Fibrin Glue Injection to seal them. Has anyone here had this procedure done ?

JoJo2
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I have four Tarlov Cysts, and I am on Darvocet right now...
I am looking into having Fibrin Glue Injection done soon.
has anyone heard of this procedure ?

Mary
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Hello Everyone,
I was diagnosed with Tarlov Cysts last April I have noticed that some on here have them as well, I am looking into Fibrin Glue Injection to seal them. Has anyone here had this procedure done ?

JoJo2
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