Tarlov Cyst, Maigne’s Syndrome and Back Pain

My Journey…

While this may seem off-topic, those suffering debilitating pain may find value in my experience the past 3 years, both physically and mental-emotionally.

I have now vastly improved, with remaining symptoms being mostly and usually just irritating, comparatively. (See 2023 update below).

I’m going to try to give practical advice and a time-line of events of what happened and what I learned.

These are mostly from posts I made in the Tarlov Society of Canada facebook group.

(This is NOT medical advice, do not take it to be such. It’s an accounting of my journey through back and perineal pain.)

Six crucial learnings are…

1) Imaging is not diagnosis, and may be meaningless to symptoms

That things found in imaging like MRIs does not mean they are the cause of the pain.

There are people in serious pain with nothing found in images, and there are people who’s images are riddled with things, who have no pain.

So don’t go exclusively by the images and don’t think a tarlov cyst is a diagnosis you can’t do anything about.

Mysofasical and trigger points are abundant in the body, and these can cause very severe pain.

So don’t despair, and don’t get stuck on one “thing” in your imaging or direction of investigation.

Doctors call this “tunnelling” and need to be wary of it themselves when investigating.

2) Keep Investigating

No matter how bad the pain, or how long you’ve had it, you can find relief and improvement if you keep going.

Keep researching, and most importantly, keep doing actual, real experiements on the body to test how it responds.

This is important because not only is science and medicine changing daily, so is your body!

Your doctor doesn’t spend enough time with you, nor on your problem, so be your own advocate.

3) Keep Moving

Keep moving, no matter what. I caused the secondary and worst part of my problems by not moving, by staying in bed.

While the pain was so severe I thought I couldn’t move, or that I shouldn’t move, but that wasn’t true for me.

If xrays and MRI’s show none of the issues doctors tell you not to move for, then move!

Even if its just walking every day.

My turn-around began when I started walking, working up to hours a day walking. It was painful, but it was crucial.

It took a lot of time to get me into this situation, it’s taking a long time to get out.

But there are rapid improvements possible. And then you may “plataeau” for a while.

Keep a log.

You will adapt to a “new normal” of pain and not realize you are still improving.

Remembering how bad it used to be helps you realize you are improving, and keeps you moving, so keep a log.

4) Don’t abuse treatments

It’s possible to do too much of a good thing. Don’t use too much heat too long, it can cause serious problems.

Don’t use too many or too much of “natural” remedies, if they can help, they can hurt. Including Serrapeptase and Nattokinase.

5) Keep going back to your doctor

Work with your doctor. Let them know what you’ve been trying, how things are changing, and what you’ve learned.

6) Learn to stay out of your mind

I had this advantage going into this ordeal, because it’s what I helped people with before my back “blew up.”

You must protect your mental health to best support your physical health.

Constantly thinking, driving the mind forward, stressing, not only negatively affects the body, it limits our intelligence and creativity in resolving the physical problem.

Pain is subjective. It’s an experience science does not at all understand very well. You have much “wiggle room” and power here.

It may sound crazy, but you can be in pain AND be happy, feel love, and be at peace. And to me, that reduces the physical experience and duration of pain.

I will be continuing to tweak this post, and will add more later, as well as a current (2023) update.

Hope it helps someone. Peace, happiness, and health to you.

Cindy

PS–Much of this is from my regular postings in the Tarlov Cyst facebook support group, so its a detailed account.

But first, Mar 2023 – Question from a person with pain and Tarlov Cysts

“Hi Cindy, thanks a lot for your messages. I was unable to answer sooner because I was in extreme pain and literally couldn’t do anything. I will try to walk every day. I will also do the mckenzie exercises but i’m a bit afraid it will make the cysts bigger or something else.. Is this a real fear? I know the exercise is mainly for herniated disc, but they did help you despite your cysts?”

Cindy – Nobody knows what makes the cysts appear, if they can or can’t be made smaller, or even if they are the primary or single cause the pain, or if they are secondary, and something else is primary, making them cause the pain, or if they are just symptoms of another problem causing the pain.

I do not know if my cysts have grown or shrunk, but my pain has diminished and is continuing to so far,  since I began moving and doing therapy.

“Motion is lotion” is truth.

It was when I was not moving, muscles triggered and locked up that it was terrible.

The only way to know what is real for your body is to experiment with it and see how it responds.

But a beginner does not know the McKenzie method well enough to know how much and how far to push in the process, so they need a coach at first.

I would absolutely combine it with trigger point therapy.

There may be multiple issues in spinal dysfunction, all making each one worse, so treat them all simultaneously.

I feel that McKenzie Method exercises are good for everyone (they are similar to but not the same as yoga), even those without cysts and without back pain, to prevent problems.

It maintains mobility and flexibility in a day and age when everyone is bent forward using devices.

Of course there are some conditions for which you should NOT use the method.

Get medical advice on that first.

REPLY:

those cysts are indeed a vague thing. I think I have the most pain in my pelvis.

I’m going to do the Mckenzie exercises, because they are accessible. if it doesn’t help then it won’t hurt … is it possible to recognize the triggerpoint yourself?

you are much further than me when it comes to recognizing your pain..

sometimes I only have a lot of pain on the right side, but it does not seem to me to be the site of the cyst.

I think it also depends a lot on my attitude. I have only visited so many physiotherapists that I had grown tired of it. I think I will have to look for another physiotherapist who can also do dry needling.

CINDY:

I had the most pain in the pelvis (that is where it was the worst at first, but then noticed all over the back up to the neck), the butt was as if gripped in a painful vice….

Doing pelvic floor therapy was huge for that. I used therapy balls on the hard floor for hours, wathing movies. Exceeingly painful, but exceedingly releasing within 12 hours.

The fact that your pain changes is a telling sign!

Yes, I think I go into great descriptive detail on trigger point release in the blog article (below).

I certainly recognized them (trigger points) and so can you. That was beneficial at the therapists, I could point them out.

You must become familiar with tiny ones, and bigger masses, and spasmed tight muscles.

You’ll see in my blog that the pain moved around. Was first worst on the left in the sacrum, then the right.

Yes, do dry needling at the physio, and tons, hours, or ball therapy, nerve flossing, and spinal mobilization yourself at home. Never stop it.

Get and read and use the McKenzie books… on back and neck. AND get a physio who specializes in it, see one at least once, they will teach you how to do this right and then you can do it on your own.

Another Question: “Has anyone told you that the cysts can calm down?

“Has anyone told you that the cysts can calm down? I wish someone told me that, the surgeon said they don’t. But for me there has been many flare ups in many yrare and then back to normal. But this time its really challenging and different. But I hope I will find ways 💪❣️“

The question is, what does “calm down“ mean? Does it mean they get smaller? Or what is it they are doing or not doing? We have to separate the cysts from the pain… they are not equivalent, they are not the same thing.

The doctors all say that the cysts never get smaller. But I’ve never seen any research that tracked the cysts and their growth development or any activity or change.

The theory is that the ones with necks or valves, will only grow bigger.

I quit being concerned about the cysts, and became concerned about the muscles and tendons and restrictions and the sensations and the lumps and bumps… and physiotherapy experiments and how my body responded.

Nobody really knows what’s going on because it is very complex.

I just keep trying different things and do more of what works.

Sometimes I cycle back and do something that didn’t work before because Ta-Da! Maybe now it does somehow today.

Perhaps it wasn’t ready before, maybe something else needed to happen, or release first.

Yesterday I looked at my MRI again because my neck healing had plateaued for a few weeks.

And I didn’t remember how many cysts there were or how big they were and especially I was interested in the spur— I knew there was one there somewhere.

After doing that and reading about the multiple cysts in the thoracic and cervical spine, as well as the spurs, I noticed that in reality, there is still mild improvement going on.

Recently this week I began laying on a foam roller vertically along the spine, dropping my arms and relaxing, opening… for 10-30 min at a time — and it is now making a difference.

This is how I know work on my iPhone laying on my back–never standing up looking down.

I hope that one day some doctor doing research wants to do another MRI on me. So we can see if anything changed with the cysts and the bone spurs, or not.

And I think that one day in the not too far future, that we will have technology that can make images of soft tissue, and pinpoint where trigger points are dysfunctioning.

Today I also remember, years ago before these two painful years, having the same restriction in the neck when I turned my head right. And that it completely disappeared after about 2-3 weeks of hot yoga.

So maybe its not the spur, nor the cysts.
We’ll see, as I plan to return to swimming and yoga.

March 2020

Covid hits Italy, and I open a support group there, doubling my work and cutting out my exercise and movement.

A slowly growing hip/back gets worse, then a shoulder issue starts and becomes a worse back issue. During yoga it become even worse, and I quit moving, mostly laying in bed to eat, work, and sleep.

By summer, it’s not improved. Covid has hit Canada and I can’t get to see a doctor.

An eventual telephone call leads to multiple referrals to many specialists, none of which I can see immediately, and for whom it takes months to just have a phone call with.

Pain is constant. I can’t sit, or stand, or walk without severe pain, deep aching, and sometimes sharp stabs and electric spikes.

My doctor prescribed a muscle relaxant which did not stop the pain. I did not want to take pain killers, I wanted to fix the problem.

My chiropractor, who has always been so helpful, has retired and I can’t find a comparable replacement,

By fall, the problem is worse and I start looking around for alternative therapies.

March 25 2021

I get a sacral MRI and the Tarlov Cysts are seen.I join the Tarlov Cyst Canadian facebook support group.

Please welcome Cindy Teevens to our group. We are happy you have found us but sad you had the need to find us. Please read through our information and ask any questions you may have.

March 25 2021

The MRI showed a 2.1cm cyst on S2 just a couple days ago.
But a day and a half ago it started getting better! The pain as well as the perineum symptoms improved.
I had begun babying it …not doing what hurts, and only doing what feels good. Bending my back over a foam roller feels good. Lifting hips feels good.
Walking feels good, had a challenge to walk 110 km this month with my sister, and no doubt it’s helping. Heat feels good. TENS seems to help.
Rolling glutes and hips on therapy ball hurts there but does help. Consciously relaxing the whole lower body and straightening the top feels good.
I started viniyoga, which is said to help, it’s very gentle and I think good, again only doing what feels good.
I work from home and began sitting with a cushion between the knees, it works the best for me.
At my desk for short periods I sit on a plastic exercise ball, conscious relaxing everything in contact with it.
Wishing that you find what helps ❤️.
(My theory at the time, and I had many throughout this ordeal…)
I watched a physio video on the McKenzie Method, think it’s collapse of the arch in the back he spoke about in the video… causing a disk bulging on the nerve higher up (I feel a problem there) and that swollen nerve making contact with the cyst.
When I do things to help the disk, that cyst pain improves. Releasing the butt muscles is probably also taking pressure off the nerve, plus walking making the body better able to hold itself up and off the nerve. My theory LOL.
I may be able to make the problem go away, but maybe perhaps temporarily, and it depends on whether that cyst grows or shrinks.
(I went on to buy the book on the McKenzie Method, “Fix your back” I think it was called, bought the back support, and this enabled me to drive.)

March 25 2021

Anyone seen this doctor? Dr. Kieran Murphy
Treatment of 213 Patients with Symptomatic Tarlov Cysts by CT-Guided Percutaneous Injection of Fibrin Sealant

March 26 2021

Can the pain of a cyst change sides? If the cyst is on the left, can pain go right?

March 26 2021

Schwannomas can mimic Tarlov, anyone with that experience?

March 26 2021

For relief… this is helping me right now… rolling my hips and glutes on a therapy ball! I do it several times a day.
It used to be painful itself to do, but as I iron out the lumps and bumps it get easier (these seem to be knots/spasms due to pain, compounding everything) …and the perineum symptoms and low back pain improve! Such a relief.
I also arch my upper back over a foam roller with hips raised a couple times a day.
And I just started with Serrapeptase which I heard some people had really good results with. (I already had some in the fridge because of a different issue it resolved.)
And I think walking, if you can do it, is huge for not just pain but also the problem. May start out short distances and gradually build up.
May you be healthy, happy, and pain free!

I am questioning if what I have is Tarlov, and comparing symptoms

Mar 27 2021

How many of you also have Angle Glaucoma?

March 27 2021

Yesterday I took CBD oil for the pain and was astounded how much it helped.
In addition to CBD oil, I’ve also started on serrapeptase, which has been known to dissolve cysts.
And I am going keto/low carb to lower sugar and inflammation in the body.
And while the pain is managed, I’ve upped my physiotherapy (using balls and rollers to release trigger points), and practicing “reverse kegals” pelvic floor drops.
The perineum issue responds to both the latter items, I am mostly without the anal swelling/blockage.

March 27 2021

Well this ends that debate…I’m going to print this out for my doctor, in case… “The clinical entity “Symptomatic Tarlov Cysts” is a highly under reported condition.
We aimed to perform an electrophysiologic evaluation in patients with Tarlov cysts to determine whether the cysts create electrical abnormalities that could translate into clinical symptoms. The findings are correlated with the data currently available in the literature.
Methods: Thirty patients with unexplained pelvic, sacral, perineal and/or leg pain who harbored small and/or large Tarlov cysts were selected at an outpatient clinic for physical medicine in musculoskeletal disorders. An MRI of the lumbosacral spine of each patient was reviewed.
An experienced physiatrist acquired information related to pain and paresthesia in addition to bladder, bowel and sphincter symptoms. An expert electrophysiologist performed nerve conduction and electromyography studies on the patient’s legs and the pelvic floor. A review of the case reports on Tarlov cysts was performed.
The symptoms of the patients in the study were compared with the symptoms reported in reviews and case reports. Results: In all cases, the presence of Tarlov cysts was associated with sensory neuron symptoms, such as pain and paresthesia, and with bladder, bowel, sexual, and/or sphincter complaints.
In all cases, electromyography documented axonal damage in multiple lumbar and sacral nerve root myotomes.
Conclusion: Symptomatic Tarlov cysts clinically and electrophysiologically represent a progressive chronic cauda equine syndrome.
In patients with intractable sacral, perineal, pelvic or leg pain, symptomatic Tarlov cysts should be included in the differential diagnosis.

March 28 2021

This is an excellent source of info! …

March 31 2021

OMG, “Another virtually unknown cause of craniovascular hypertension is thoracic outlet syndrome.”
Craniovascular pressure results in spinal fluid pressure, which results in Tarlov cysts.
Some years ago, due to an x-ray for something else, it was discovered I have an extra rib: Thoracic Outlet Syndrome (TOC).
Higher pressure would also explain the pressure they fear with my angle glaucoma. And the pulsatile tinnitus I had.

April 3 2021

Do all of you feel better laying down? I don’t.

Apr 3 2021

Does everyone with sacral cysts have pudendal neuralgia?

Apr 3 2021

Epidural block success… and some great notes on diagnosis and whether a cyst is a primary or secondary cause …

Apr 3 2021

Fascinating! I thought everyone with a cyst in the sacrum would experience pudendal neuralgia. But apparently a cyst is not the cause for everyone with pudendal neuralgia. In other words, they don’t necessarily go together.
Research Conclusion:
The increased prevalence of Tarlov cysts is likely not the etiology of pudendal neuralgia, yet both could be due to similar pathogenesis from part of a focal or generalized condition.
—
Pudendal neuralgia is a painful neuropathic condition involving the pudendal nerve dermatome. Tarlov cysts have been reported in the literature as another potential cause of chronic lumbosacral and pelvic pain. Notably, they are often located in the distribution of the pudendal nerve origin at the S2, S3, and S4 sacral nerve roots and it has been postulated that they may cause similar symptoms to pudendal neuralgia. Literature has been inconsistent on the clinical relevance of the cysts and if they are responsible for symptoms…

Apr 3 2021

How many of you also have fibrocystic breast tissue?

Apr 1 2021

Anyone try this?
LUMBO-SACRAL LOW INTENSITY SHOCKWAVE THERAPY FOR GENITO-PELVIC DYSESTHESIA/PERSISTENT GENITAL AROUSAL DISORDER (GPD/PGAD) USING UROGOLD 100 MTS

April 3 2021

Apr 3 2021

Anyone try this?

(I did not want to take any drugs, and after reading about this one, forgot about it.

I have not taken any drugs (including pain relievers) after my doctor tried me on a prescription muscle relaxant, which did nothing.

Apr 3 2021

Not news, but new to me. You can add your voice…
7,000 Different Rare Diseases and Disorders Comprise 65 Page RARE List™

Apr 28 2021

Heard people talk about “flares”… what’s that? What’s it like with and without a flare?

May 15 2021

This is a yoga/workout for the sacrum. I found it to be really good, and sacrum safe (it was severe yoga hip stretches that made my issue get really bad, last year). She’s very knowledgeable on hip and sacrum. https://www.youtube.com/watch?v=UGFZDfKRJZg

I was SHOCKED by the severity of symptoms that muscle problems can cause. When it’s really bad it’s easy to think that it must be nerve.

Well it is, but it can be muscles cramping down on nerves, and not an original nerve problem itself.

The body, especially the sacrum is extremely complicated and we need to do everything we can experimenting on our own bodies with what can be done.

It’s a infinitely more than we believe. Don’t give up! Just keep moving forward. 🤗

May 15 2021

I’M SO MUCH BETTER! Here’s what I did since joining here. Yes, I have a cyst. Three that I know of, two on the S2, one on the S1… but I’ve made the most amazing discoveries.
1) There are multiple conditions with the same described symptoms as tarlov cysts are ascribed: Pelvic floor dysfunction. SI joint instability. L5 misalignment. Pelvic tilt (many directions possible.) QL and Psoas Muscle trigger points. Pelvic upslip.
They are all related and one condition will aggravate another. I had almost all of them (though not positive on the upslip yet) and they are all healing.
None of them would be revealed in X-ray or MRI. (And there’s also Pudendal Neuralgia or Pudendal Nerve Entrapment. )
I had such bad symptoms at one point that one morning my left toe drooped and pain spiked and tingled down my leg to my foot.
I had constant dull back ache, pain morning and night, sitting and standing and bending and walking.
I had unusual constipation with small hard balls, and feces sitting in the last part of the bowels not moving until pushed down from above.
I had persistent genital arousal (PGAD).
I had a sensation of anal swelling, tightness, as if sitting on something hard, or like something was stuck.
I saw a pelvic floor therapist, was treated by a dry needling therapist, used an SI belt, saw a craniosacral therapist, and called my doctor who gave me a prescription muscle relaxant which didn’t really help much and a cream for the PGAD, which didn’t help at all—and who referred
me to a spinal surgeon on Ottawa and Toronto (both of whom I have yet to hear from).
I took CBD oil, which made a huge impact on the pain the first time, kept it at bay and lowered the inflammation. I still take it a bit for inflammation but often forget to take it because the pain is nearly gone.
I took serrapeptase for inflammation along with Nattokinase. Plus high potency vitamin C.
And I walked, even though it hurt, I walked… I did what I could and found myself able to do more and more. In March I walked 152 km total.
I did trigger point muscle release at home with hard therapy balls, even a tennis ball, working the spams out of them.
I stopped laying and sitting around and started moving, doing what felt good, which was sometimes just wiggling curled up in a baby pose ball.
Motion is lotion, so I lubricated the body every chance. And I added more movement into every day things, like parking further away, like rolling and stretching on the floor (as I am now even as I type this), like taking extra bends, squats and stretches as I emptied the dishwasher.
I never stand or lay still anymore, I am always moving or stretching (I do practice silent sitting meditation for 30 min. daily).
To help the bowels I took 400-600 magnesium citrate, daily, ate high fiber (popcorn yay!), drank lots of water, added psyllium to a meal every day, and take slippery elm infusion daily now. I pretty much quit all coffee and wine for now (though I never took much of either). And
I have bowels movements with feet on the toilet lid—squatting made it so much easier.
I did a gentle, not commonly known form of yoga called viniyoga for the sacrum, and stretching and strengthening targeted to the buttocks and hamstrings, and recently started some gentle core strengthening.
I realized, after being finally able to move my pelvis, that I didn’t know where it belonged! That I didn’t know how to stand any more, and that the way I was standing (probably done to avoid pain) was not good and now a part of the problem.
So I began practicing mindfulness of posture and posture correction. Huge!
Reverse Kegels and deep belly breathing are what are necessary to relax and help release the pelvic floor. (I realized my side, stomach and pelvic floor muscles were in constant contraction, which mostly couldn’t be consciously released. It took therapy.)
And most recently in the last two weeks, I went to an activator skilled chiropractor who realigned my pelvis and L5 again and again until the adjustments began to hold, with the help of the SI belt.
(Earlier on the belt was more of a problem due to other issues, but now it’s a key.)
In the beginning using the tens machine helped with pain. I’ve been using self massage recently with essential oil.
It’s been over a year of debilitating back and pelvic pain—which is now fading fast away.
I can walk until normally tired. I can and love bending ahhh such a relief. I can sit as long as I need (but I try to remember to use a timer for max 30-45 minutes at a time.)
The constipation is gone.
What’s left is some healing itchy-ness in the sacrum, left buttocks, genital area.
If I sit too long or do too much I may get a little set back, but put things back into position, give the body TLC, and keep on healing.
Apparently it takes 6 weeks for muscles that had atrophied to regain normality, and it can take much longer, months maybe a couple years for nerves to heal.
What about the cysts you say?
I don’t know if they are getting better or are exactly the same. They could be getting better. They could be exactly the same, and it could be that they never were the problem in the first place….
Or it could be that everything else was aggravating and pushing on them, so in a way they were secondary.
I could see that becoming a vicious cycle, one making the other worse, until my back blew up last year.
All the problems had to be addressed one by one, like peeling an onion, so that the next one and next one and next one could be fixed.
There were a few breakthroughs with trigger points, and in the end, it was a figure-4 stretch on a yoga ball, which I accidentally found out made a major difference.
I was giving a webinar and the pain was increasing, and I just intuitively felt to do this… and after I stood up 1.5+ hrs later–the pain was gone!
And the last basic problem (hip misalignment) was gone. I knew it. Could feel it. Things felt right again. Like a stone was taken out of the shoe.
Now it’s scar tissue, and sticky nerves that are being gradually “flossed” and released.
I do the figure-4 stretch multiple times a day now. It seems to re-align the SI joint and stretch the needed muscles.
Realignment is not holding yet, I have to keep doing it and getting chiro adjustments, but with strengthening we expect it to start holding up better and better, which it is.
I will keep any surgeon appointments I may get, and get their opinions and perhaps tests and examination.
I will never stop taking care of this to continue healing, and also as prevention.
I urge you to take action in all directions, to not get stuck in one direction or treatment.
Pay close attention to the body, get to know where the S1, S2, S3, etc are actually on your body (and where the cyst is).
Pay close attention to the sensations, how things feel exactly where, and how what movements affect things. (Take notes!)
The better you know your body the better a therapist or doctor can help you.
Try out and test all modalities on your body, get what you can out of each, move on when you plateau, possibly returning to one as you progress, keep moving on—and keep moving!
May you be happy, healthy, safe, and free!
(And now I find myself coming back here to remind myself what to keep doing haha.)
NOTE: I have returned here as I remembered more, add and will continue to update the post and add links below.

May 15 2021

MEMBER: What is reverse kegal? & I’m waiting on the yoga name.

Cindy: Kegal is the tightening of the muscles, a pull upwards. Reverse is a relaxing, and dropping downwards.

The first physio said I need to do Kegels, they just didn’t know better that with this condition its the opposite.

My pelvic floor muscles were in a constant state of contraction/spasm. I didn’t know it! It had become normal, until I began working on dropping, and first felt the drop!

It was like WOW! So then I used mindfulness to drop over and over, until I am mostly dropped rather than tight.

I used to find them tight a lot, now not so much. Things “down there” are nice and loose haha.

Click > What are reverse kegels

Reverse Kegels Video: https://www.youtube.com/watch?v=YMLytmxNcZs

Ultimate Cheat Sheet for Reverse Kegels:
https://flo.health/menstrual-cycle/lifestyle/fitness-and-exercise/reverse-kegel?fbclid=IwAR1PGC4XIVMFD1iPYoVNqiQzIN9lbIU2TiZFkdv3D3F15MD_oGiWHyRAyxU

The yoga is Viniyoga… here’s a couple links I watched, but you can search for more… https://www.youtube.com/watch?v=KjJ4CWFq8-Y

I haven’t tried this one yet… https://www.youtube.com/watch?v=duFYvKpnXQw&t=1499s
This is one of the yoga practices I did (but I’m still looking for the not well known yoga video for this.) I’ll also share a third yoga/strengthening video I used and love.

Group Support

Thank you for all the positive ideas. I’ve started moving again, too. really gentle at the moment. my symptoms change so much, but I’m trying to move with it and only stop if it hurts more. Can I ask, how do you know if something is inflamed? or is that just what the pain is?

Cindy: if there’s pain, you can guarantee there’s inflammation. They are a package deal. Pain may be caused because a nerve is pressed, or a bone out of alignment, or muscles spasming, or pulling or being pulled… and all of that will come with inflammation.

When you exercise and damage a muscle to grow it, you cause injury and inflammation, which is heat, and blood rushing to the area to heal it. Any injury will cause inflammation.
While the bones were out of alignment, the injury is ongoing, even as the body tried to heal it.
When things are put back in place, the inflammation will come, do it’s work, and gradually leave.
That’s what I’m experiencing now, a fading away of inflammation. Too much inflammation can be injury causing in itself.
MEMBER: I admire your attitude, it’s so easy to become inactive because of fear that things may get worse but it seems that you have pushed yourself to your much better self. Well done!
Cindy: I froze for a year, and things got really bad! We should not rest a painful back more than two days. Wish I knew then what I know now. Hoping it can help others avoid the long term pain I had and length of recovery now needed.

May 21 2021

Constipation continues to return at times… Here’s my recent fascinating research on that and pelvic floor dysfunction, which I also do have (but is slowly getting better)…
“A lack of response to laxative therapy can often increase clinical suspicion for pelvic floor dysfunction as the underlying etiology.
Biofeedback therapy is the best initial treatment for patients with pelvic floor dysfunction because it allows for retraining of the defecatory process.
Biofeedback provides visual and auditory feedback on the functioning of the anal sphincter and pelvic floor muscles, which can result in effective defecatory coordination.
Multiple studies highlight high success rates with biofeedback therapy in pelvic floor dysfunction, with results approaching 80%.
Patients with constipation can present with excessive straining, hard stools, or a sensation of incomplete evacuation. Approximately 25% of chronic constipation occurs secondary to defecatory disorders, notably pelvic floor dysfunction, which is also known as dyssynergic defecation.
Normal defecation is characterized by coordinated relaxation of the pelvic floor muscles, increased intra-abdominal pressures, and activation of the anorectal inhibitory reflex.
In dyssynergic defecation, patients experience inappropriate contraction of the anal sphincter at rest and while bearing down, and the pelvic floor muscles fail to relax.
In patients with continued symptoms despite laxative therapy and physical findings suggestive of pelvic floor dysfunction, the American Gastroenterological Association recommends further work-up with anorectal manometry and rectal balloon expulsion studies.
Defecography may be considered if results of anorectal manometry and rectal balloon expulsion studies are inconclusive.
Biofeedback therapy remains the cornerstone of treatment for defecatory disorders given its high rate of success. Biofeedback is a behavioral therapy that utilizes a multidisciplinary approach to correct pelvic floor dysfunction.
Specifically, anorectal manometers are implemented for close monitoring of the external anal sphincter pressures during simulated defecation of anal plugs, with appropriate modification by the patient.
Although its implementation may be relatively labor intensive, it has no adverse effects.”
(NOTE: my muscles were so seized up with trigger points and myofacial dysfunction that I’m sure the above would not have helped. Magnesium and aggressive trigger point therapy on the buttocks and hips made the difference with this.)

Group Support

MEMBER: Thank you for an insight into your journey… I’m going to give this some serious consideration as what is there to lose but plenty to gain? 🙏🏻❤️

CINDY: exactly! Had I thought “it’s the cyst” (and only the cyst), I would not be in the near pain-free state I am! What a relief! And I still don’t know how much, if any of it, has anything to do with the cyst! I will keep going with my therapies to find out! Yesterday I learned my local neurologist appointment is Sept 15. Lots of time for more experiments, therapies and discoveries. We don’t have to wait around, with things maybe getting worse! In fact, waiting around, being inactive will make things worse. All the best 🌸

MEMBER: thank you … I’m so lazy when I feel awful I become even more stagnant which worries me … 🥴😢

Cindy: yes it’s a trap you can’t fall into, because not moving makes everything g worse, and it makes recovery take longer. I quit moving because I thought it was good or I didn’t want to make things worse. Well that was the worse thing I could do! Keep moving, do whatever you can 🤗

May 22 2021

UPDATE: What’s left for me now is some tingling “rawness” on the left side of the sacrum and left buttock (little sensitivity in the perineum), along with constipation, tightness/limitation in the QL muscle (and maybe the Psoas, which the chiro is treating)–all seem to make slow daily progress.

I’m still wearing the SI belt, but starting to wean off it. I’ve learned that when pelvic floor dysfunction sets in, the pelvic muscles can cause constipation. And biofeedback and retrain these muscles and bowels. Found this article today… https://aboutgimotility.org/…/pelvic-floor-dyssynergia/

May 28 2021

I started this a couple days ago and it’s helping… https://somaticmovementcenter.com/iliopsoas-exercise/ (I also bought the paid program, and the first exercise is particularly good.)

More Tarlov Cysts discovered

June 8 2021

UPDATE… Thoracic MRI some months ago revealed 5 Tarlov cysts. This would have been disheartening if I clung to the idea that the cysts were the problem.
I am starting to see them as a visual symptom, not a cause.
The massive trigger points discovered all over this body seem to be the real culprits, and they are workable!
Plus, after I started Pilates to regain muscle function and strength which I didn’t know I lost (due to laying around due to pain), my symptoms vastly improved.
These are my two therapies now and they have giving me back near normal functioning.
Don’t wait! (on doctors or therapists), explore your own body with a therapy ball for trigger points, and do Pilates (even if you can’t do them at first and feel weak and look silly trying! Every effort to try strengthens you —fast!—and you will be able to do it all.)
Here are the two 7- minute workouts I used:

June 9 2021

UPDATE: about two weeks ago I finally got to speak with the Gastroenterologist, who after some questions said I mostly had dyssynergia (primary or secondary caused: primary possibly being the cyst, secondary would be caused by muscle spasm, which can cause bowel spasm and dis-coordination of the bowel with the brain). Research on dyssynergia and QL muscles (known to cause constipation), led me to the P-DTR technique above (which reconnects and aligns brain and body), and my local practitioner Jared.

June 9 2021

this amazing method… I can’t say enough about. I got treated by Jared last week in Ottawa and with one treatment, the most stubborn muscle issue (causing pain, spasm and nerve constriction) has half released… I see him again today.
I can’t explain the treatment, but it’s utterly painless it really felt like nothing happened. But the next day things got largely better. Truly amazing! It’s called P-DTR and this page is what got me interested in it enough to find someone in Ottawa …
(I didn’t get much more results from this, so discontinued it.)

June 9 2021

UPDATE – I am nearly 100% healed, and am better than before this all even started during Covid. Discovered two more modalities I’ll share in two more comments. What’s left is tight QL muscles but not as bad, daily gas, bowels are moving much better, occasionally some sacrum pain and tingling in the QL and sacrum (especially after doing some ball therapy.) I learned way more about the three causes of constipation and which mine was, and did the things to help it.

June 11 2021

Note: I noticed lots of bruises on my body so discontinued the serrapeptase and Nattokinase for now, and the bruises are healing. One shouldn’t be on them really long term.

I would try one treatment, use it until pain relief plateaued, then move onto another.

July 7 2021

I’ve found numerous cases where “tarlov cyst was removed” with no report side effects. No concern that it will fail or have disaster out results…
Though this case was even more rare, I’m most interested in the successful surgery and so far stellar results—and not having been done by the only two experienced surgeons I’ve found in the world.
“This case demonstrates that orthopedics and urologists should improve their understanding of Tarlov cysts to avoid misdiagnosis and mistreatment.”

July 9 2021

MAJOR UPDATE:
WOW yesterday I did an experiment.
I laid on my stomach to rest with a pillow underneath my hips and when I stood up the painful points down in the sacrum/tailbone—were gone!
It came back after a while so I did it again to experiment and it happened again.
Yesterday I was on a call for 1.5 hrs in that position and it’s feeling better and better, holding longer.
I’m working with an osteopath and can’t wait to tell him.
(The osteopath said and discussed very little, did a treatment and left. I got nothing from it, and also no idea what he thinks it was or what his treatement was supposed to do, so did not go back.)

July 18 2021

MAJOR UPDATE:  I accidentally discovered that laying on my stomach and arching my back, my butt upward, the butt and sacral pain dissolved right before my eyes… it moved upward toward the spine, in true McKenzie method style!

It has now nearly centralized on my spine, with slight left lean. Yesterday I also remembered that I had noticed months ago that didn’t have any natural lordosis (curve of the lower spine) … my lower spine was flat.

This will cause pain, and the more severe, the more pain and problems. Even perineal problems. If I don’t support a curve or if I flex the spine forward it makes the pain worse. True to McKenzie.

Mostly now, the pain is not in the sacrum any more. It’s in the lumbar/sacral area. So I am looking at treating it as hypolordosis.

July 25 2021

Anyone understand this…?
Elimination of the check-valve mechanism of the sacral Tarlov cyst using a rotation flap technique in a pediatric patient: technical note.

July 26 2021

UPDATE – get this, my doctor didn’t tell me that two slightly bulging discs were on my MRI. She told me about the Tarlov cysts though, which is really weird for doctors. I suppose maybe she actually thinks there might be something to the cyst—but the laying on my stomach and arching the back indicates the bulging discs are being helped, and that is helping the pain!

Always read your own MRI results!

It also showed some lesion on the liver which is assumed to be harmless but recommended for ultrasound follow up — something else my doctor did not mention. So I’m continuing with the McKenzie treatment but also went back to more trigger point therapy on the buttocks and hip especially the left to see if that is pulling everything out of alignment.

Experiment so that you can learn things and don’t be afraid of going back to things you’ve already tried because what didn’t work once maybe couldn’t work until something else was dealt with —and may now work!

Aug 22 2021

I spoke with Dr Murphy on the phone last week. He said 80% of the people who come to him don’t have a symptomatic cyst.
He doesn’t believe mine is the cause even though my largest one is 2.1 cm on the left S2 root, with another smaller one the other side. He said he thinks it’s facet joints and he wants to inject me with nerve block at the L5 level.
If it’s facets it is a diagnostic test as well as a therapeutic procedure. I’m booked for mid Oct, however…
I don’t believe the problem is at L5. (he didn’t actually examine this body, and he only spoke with me about 10 minutes … he didn’t hear everything I have to say and I feel he’s missing information.)
I know I have a problem higher up at T 12 L1 —and that area can cause all of the same symptoms as tarlov cysts.
I’m hoping my chiropractor through x-rays and tests will be able to confirm the problem is higher up …and if I do go for the injections I want it done at L1 not L5.
Of course we are both hoping that whatever the problem, conservative treatment will do it.

Aug 15 2021

I am researching surgical options for Tarlov Cysts

Thirty-nine patients were included. The most common symptom was sciatica (n = 22). Cyst aspiration was performed in 28 patients, 24 of whom showed clinical improvement and were offered surgery. Microsurgical cyst fenestration was performed in 17 patients, 16 of whom showed clinical improvement at long-term follow-up. There were no surgical complications. Ten of the patients who were offered surgery chose to be treated conservatively instead, four of whom showed progression of symptoms at long-term follow-up.
Microsurgical cyst fenestration seems to be a safe and effective option for symptomatic relief in patients with perineural cysts. Based on the results from our series and those of others, we propose an algorithm for the selection of surgical candidates.

Aug 15 2021

UPDATE: since discovering I had bulging discs and starting the McKenzie method treatment, I’ve made rapid improvement in many ways. I stopped sitting and standing totally for few days–and rigged my house for that since I live alone–to let it heal.
There’s still a problem higher up than the bulge at l3,4,5 but overall the bulge is improving, or seems to.
I can relieve pressure and swelling in the perineum and anal area by arching my butt in the air under a pillow, and that lasts for some time. I do it a few times a day. I sleep with a pillow around my waist.
I now walk on a treadmill while working on my computer (like right now). On some days I walk, talk and work for 3 hours or so.
Constipation is being well managed with diet and magnesium. I get to talk with Dr. Murphy next week and learn what he thinks about my MRI.

Aug 16 2021

Can’t wait for these results! Tarlov cysts Clinical trials.gov

I found a diagnosis that finally seemed to fit, that was not Tarlov Cyst; Maigne’s syndrome

Aug 22 2021

AUG 22 – I spoke with Dr Murphy on the phone last week. He said 80% of the people who come to him don’t have a symptomatic cyst.
He doesn’t believe mine is the cause even though my largest one is 2.1 cm on the left S2 root, with another smaller one the other side. He said he thinks it’s facet joints and he wants to inject me with nerve block at the L5 level. If it’s facets it is a diagnostic test as well as a therapeutic procedure. I’m booked for mid Oct, however…
I don’t believe the problem is at L5. (he didn’t actually examine this body, and he only spoke with me about 10 minutes … he didn’t hear everything I have to say and I feel he’s missing information.)
I know I have a problem higher up at T 12 L1 —and that area can cause all of the same symptoms as tarlov cysts.
I’m hoping my chiropractor through x-rays and tests will be able to confirm the problem is higher up …and if I do go for the injections I want it done at L1 not L5.
Of course we are both hoping that whatever the problem, conservative treatment will do it.

UPDATE: Once the pain started to ease in the sacrum my attention went to the flank pain that has been there all along and to the knowing all along that something was not right higher up the spine. Now I’m being assessed by a chiropractor for issues around T12-L1. I’ll get her opinion this Tuesday and a treatment plan.

DID YOU KNOW? That a problem that causes no pain at all at L1 can cause all the pain one experiences in the sacrum? And the hip. And the buttocks. And the genitals. And the flank. And cause bowel and bladder problems. And sciatica.

It’s known as the great mimicker and is called “Maignes Syndrome.”

But it has several other names too including Posterior Ramus Syndrome and TLJ Syndrome.

(I suspect (on and off) that it’s Maignes Syndrome and begin seeking treatment. I did do an intensive month of chiropractic, said to heal it rapidly, without much improvement.)

Intensive work with a chiropractor for one month, multiple times a week.

Group Member: I just read your seeking advice about it. Please keep us updated. Im intrested.
Cindy: I’ve been using a physio treatments for it and chiro adjustments, and its going great. Will post some here.
Chiro didn’t make much of a difference to the issue “higher up” but it did help get the sacrum moving. And the chiro suggests I get the nerve block test for Maigne’s, and has given me a couple ideas of what type of health expert would do it. I am tracking some down, and get to talk with my doctor Monday to get referred.
Last night I discovered that there is a nerve that comes out of the T1 that splits into two and one is called the iliohypogasric nerve, which feeds the abdominal was and it could be what is causing my gas symptoms. It’s counterpart the ilioinguinal nerve provides cutaneous innervation to the superior medial thigh and: in men also supplies the skin over the anterior one-third of the scrotum and the root of the penis. in women also supplies the skin over the anterior one-third of the labium majus and the root of the clitoris.

Trying alternative treatments (supplements)

Group Member:  Thanks for these advices , your attitude is inspiring ! What serapeptase dosage do you take ?
❤ 120,000 SU, once a day on empty stomach, not eating for 1 hour.
WARNING! after taking them a long time (probably too long), I had to stop because I was seeing bruising in many places!

Investigating drugs

In case anyone is wondering… “Ketorolac, sold under the brand name Toradol among others, is a nonsteroidal anti-inflammatory drug used to treat pain. Specifically it is recommended for moderate to severe pain. Recommended duration of treatment is less than six days.

***Note: I am allergic to NSAIDS, so I can’t take these.

Encouraging Tarvlo Cyst Group Members

CINDY, after a member’s share:
Great work! Yes, keep looking, keep digging, and sometimes coming back around where we’ve already been, having learned more, or seen changes.
Mostly I urge all to pay attention to your body and its sensations. It’s saying so much. Since doing that, and making diagnostic ideas fit to my body, and not my body fit to the diagnostic idea, I have gotten further faster.
Your muscles could absolutely be pushing on the nerves, and maybe even veins. The great thing about ball therapy is that you can do this experimentation safely on your own, every day, multiple times a day.
One thing in the body can be causing another which causes another problem. The pelvis is mysterious that way! We have to keep peeling the onion.

MEMBER: I’ve read the posts you’ve put on here – very interesting. Particularly looking at symptoms perhaps being unrelated to the cysts as it’s good to look at all options.

Before deciding on whether to opt for surgery on the cysts (surgery has it’s risks and there’s no guarantee of improvement), get tests to rule in/out conclusively that the cysts are the cause.

Before deciding on whether to opt for surgery on the cysts (very reluctant as no guarantees on results), I had a pelvic ultrasound and pelvic MRI… no conclusive results that the cysts are the cause.

CINDY: Thanks for sharing. I can only say… look everywhere at everything! Many things can cause this. Also check the pudendal nerve. Because cysts are on the “correct area”—but so are these other things!

“The obturator fascia forms a canal called Alcock’s canal, which encloses the pudendal vessels and the pudendal nerve, and cross the obturator internus muscle. However, the pudendal nerve can sometimes get trapped in the obturator fascia, leading to many types of pelvic issues such as Neuralgia or severe pelvic pain.” SO…

I did buttocks release with a hard ball and found about about this muscle because part of my butt was in excruciating pain while on the ball. The relief was immediate and got better the next days. Am still doing more therapy but am much not comfortable down below 😉.

Great exercise that really helped me!

Clinical application of the right sidelying respiratory left adductor pull back exercise.

More tarlov cysts are found

I began to realize that there was a problem higher up, in the thoracic area, and that it may be causing the lower pain and problems.
So we get a thoracic-cervical MRI and found 5 more cysts! At T12 and L1 especially. I’ll try to get details on that to include here later.

Sep 1 2021

I found more brutal (trigger point) spots in the lower butt, and did some ball therapy there yesterday and today, and the anal swelling and perineum symptoms vanished. It turns out my painful point is the obturator internus muscle, and guess what?…

The PUDENDAL nerve can get trapped or pressed due to that, causing bowel and perineum pain and symptoms! They have been 100% relieved, but I still have an issue higher up the spine, causing left flank pain.

And in discovering this muscle and it’s relationship to the pudendal, I discovered another condition of the spine which seems to be a matching part of all this… will post the link to it below.

UPDATE: – I have not had any pressure/swelling/pain in the sacrum/perineum/tailbone today! The first day since spring 2020. Last night, considering that I had been in bedrest for some months, I researched spinal instability because I clearly have a problem at T 12 L1. I found this exercise for the multifidus muscles and between that and this weeks chiropractic adjustments, I’m getting better!

Still wondering if the Tarlov Cysts were the cause of the bowel issues

Sep 3 2021

Who would have known that a spasmed butt muscle could cause so much pain for so long, and so much trouble!?!! I worked my obturator muscle (on a hard therapy ball) and got a huge amount of relief. “The obturator fascia forms a canal called Alcock’s canal, which encloses the pudendal vessels and the pudendal nerve, and cross the obturator internus muscle. However, the pudendal nerve can sometimes get trapped in the obturator fascia, leading to many types of pelvic issues such as Neuralgia or severe pelvic pain.”

Sep 7 2021

Cindy: My symptoms are very mild now. Nothing like they used to be. There’s still something “wrong” with the sacrum/lower back/T12L1, that I can’t quite pinpoint, but will keep working on it.

MEMBER: I was looking at some of your posts today and I found them very inspiring!
I had to go to an appointment today with a walker for the first time and have a friend drive me. I want more for my life so I will do everything in my power to get to a better place. My goal is to walk with ease again!!!

Cindy: yayyy bravo! There’s so much we can do, generally, and I say do all we can, improve as much as we can. Because, you never know unless you try.

SEP 12 2021

Cindy: very welcome! Go for it, I hope it works for you. Dr Murphy says that for 80% of the people who come to him the cyst is not the problem. It’s something else.

And believe me after this journey I’ve found so many things that can directly cause the same symptoms, and perhaps one even aggravates the other.

Like an onion we must peel it apart, except sometimes I found it useful to revisit an old therapy, which while maybe it couldn’t work then can now.

Like this one. (I actually wish I had never left it and worked it until all glute muscles were released and relaxed. And then exercises to active the again because they shrivel and weaken and that causes a whole host of related problems and symptoms too. After this I’m onto the hamstrings because they can cause lower back pain too! All the best 🙂 ).

Trigger Point Home Physiotherapy videos

I have sometimes held on a painful point for two minutes (I do use a timer)

You can also use a tennis ball:

GRID Ball: How to Release Tight Glutes with 5-inch Massage Ball
https://www.youtube.com/watch?v=25M2XOfkuGE

30 min Therapy Ball Tension Release for Glutes & Quads
https://www.youtube.com/watch?v=Mia7cNSTYv8

MEMBER: Thank you for sharing this website.
Do you happen to have any resource on what you are doing with the hard therapy ball? Do you lie on it, or sit on it or am I out to lunch 😉 ?

Cindy: yes I do, I sit on it, and roll around on it, and when I find an excruciating place, believe it or not I stay on it… breathe through it, melting the muscles into it.

And after that I roll around it, gently stretching and massaging the area with a massage gun, increasing circulation to clear it out and that combination was excellent.

Every day I find a different spot or more to work on. There should be no pain rolling on a ball. Will find something for you some link.

In research, was starting to cross-reference some other symptoms with Tarlov, to dig deeper

Sep 13 2021

Hydrocephalus associated with multiple Tarlov cysts I was interested in this because I also have angle glaucoma and high pressure in the eyes.

I discover what body position gives me some relief from what I was thinking was Tarlov Cyst pain

Sep 13 2021

ANYONE get relief by tilting the pelvis flat into the floor on belly?

Sept 14 2021

Can you experiment with this? Lie on your belly, propped on your arms, then further tilt your pelvis toward the floor, kind of leveling and flattening it snug against the floor…. and hold it there for a 10 minutes, and see what happens? (Nobody answered me.)

Oct 7 2021

UPDATE – I have postponed my procedure with Dr Murphy because my therapy has been getting results.
Also… The injection to block L5 is pretty invasive and there are some other tests I can do first, too. (Nerve conduction tests and Maignes nerve block test at skin level).
But I’m getting better and better! since realizing my left leg and hip were severely tight and not opening.
Especially the thigh it was riddled with severe muscle trigger points, and therapy on it is giving relief in the sacrum and perineum!
My leg was not hurting at all and so I didn’t know it was so bad.
I urge everyone to stretch and roll on a therapy ball all over your hips and legs, comparing side to side (that’s how I knew I noticed the difference).
Your body should be balanced, able to stretch equally and muscle roll on a ball without pain on one or both sides.
I have almost no more perineum pressure, and slight tingling down the lower back, sacrum, and perineum.
Constipation has largely improved.
Nerves heal only 1mm a day, so this is a slow process! But I notice the subtle improvements every day or so.

Tarlov Group Support

MEMBER: That is awesome! Did you have difficulty walking on that leg prior to seeing some improvements?
Cindy: oh I was nearly bed ridden with back pain for months, but never suspected the leg/hip.
It seems it’s pulling on the hip which was pulling on the lower back.
That whole side of hip/leg had dropped down, leg was functionally shorter, causing SI joint dysfunction and problems up the spine.
The butt muscles had also shut off and also contracted painful for trigger points, both sides. Lots of atrophy and inflammation. It was all a wreck.

MEMBER: Great that you’re getting some results now👍 You must be so relieved. I’m pretty much in my bed always now because I can’t put weight on my hip/ leg😔

Cindy: wow, so sorry to hear this. And I want to say take heart!

Because I spent most of 2020 in bed, and there was a time the thought “I guess this is my new life (of pain)—but that wasn’t true and was just a thought. (And I didn’t give up so that it became true).

Keep looking for real relief. Keep experimenting with your body, push and pull in places that you don’t think hurt (where you think there’s no problem), try different positions, even if momentary, to see what happens.

Keep coming back to what gives you even a little relief, and above all—keep moving!!!

If you don’t, things just get worse. Keep moving in whatever way you can, even in little ways, and keep trying to do just a little bit more.

“Motion is lotion” they say, and it is true.

Every morning I used to gently wiggle around in bed, “flossing” the nerves and muscles.

Sideways, up and down, curled over.

And then I walked, as slowly as needed, as much as I could though it hurt, and as long as I could. I think that’s where things started to turn around. Use crutches, or some support.

Do whatever it takes to move because this was my biggest error—not moving 😕.

It was excruciating, but I got the most relief from rolling on a therapy ball on my butt. First the right side. Then found out the left needed it. Then my upper left leg. It was hard, but worth it.

May you find relief and forward healing swiftly.

MEMBER: Thank you 🙏 I appreciate you taking the time to share all of that. May you continue to heal and feel stronger every day💖

Oct 23 2021

UPDATE… I had a nerve conduction test and the doctor said my pain is not coming from the spinal nerves (not directly I guess), not coming from s1 or s2… and not the cyst. It continues to gradually improve with physio esp focused on my inflexible left hip.

MEMBER: when you say “inflexible left hip” I wonder if you’re like me and have a connective tissue disorders? I had my right hip dislocated for years and when they found that it fixed about 60% of my constant pain.

For me they said the hip and pelvis had locked together because the ligaments were too weak to hold the joint in place. Since then when my hip “goes out” I go see my chiropractor and she puts it back in within minutes.

I’ve had to retrain the muscles and use a SI belt, plus baclofen to stop the spasms that were causing the dislocation.

There’s a lot of systems that can play a role in our pain.

Not everything is because of a Tarlov cyst. I just wish it was easier to tell if our problems are cyst related or because of other issues.

Cindy: thanks for all this, I will look into it. I recently had a nerve conduction test, and though they said my pain was not coming from the spine nor the cyst. S1 and S2 were working okay.

Is that the whole story? Maybe not. These things are complicated, as you say.

Next I am onto our city university pelvic pain clinic.

It may be that my spine is out of alignment, which may be producing the cyst.

Nov 15 2021

I’m getting stellar results from checking every inch of my body for trigger points, and releasing them.
Particularly along the left thigh, hamstring, and buttocks, AND the thoracic spine.
Paying attention this way you learn to identify trigger points in your own body – and it’s mind-blowing how much severe pain in the sacrum and tailbone a trigger point elsewhere can cause!
And how quickly it can be released.
Don’t just go to the physio once a week and think that will do it.
Become your own home physio, doing it 2-3 times a day in a different places all over your body, and you will peel this onion and get relief fast. Bodily and financial!
I’ll me interested to see how much, if any pain, is left due to my cysts.

Nov 16 2021

MEMBER: I do a lot of ball rolling and find that, in combo with physio and stretching, it can lower my pain. It doesn’t take it away altogether though, and will slowly return if I don’t keep up with the routine

Cindy:  have you looked into TLJ syndrome? As long as the spine is not fully mobilized there will be pain, which will cause muscle contraction, which will cause triggerpoints, which will cause spinal demobilization. It’s a vicious circle to break through the pain problem pattern. And if we are looking in the wrong area will never get to it. I’m hoping to get a diagnostic ultrasound guided nerve block in the TLJ. If this is it as suspected, then it may also be finally therapeutic.

Home Therapy Exercises for TLJ

Rehabilitative Principles in the Management of Thoracolumbar Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5731837/

Thoracic Region Self-Mobilization
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3325630/

Thoracic Mobilization with Tennis Balls

I may try this too… https://pubmed.ncbi.nlm.nih.gov/29706691/

You may find a painful spot, but keep looking around to find a really hot spot, the origin to all the pain around it. Used bodyweight to sustain pressure in a relaxed way, opening, breathing, and relaxing, even though this is very painful. The release is sometimes quite immediately noticed, and that discovery makes one realize how this works, how important it is, and knowing lasting relief ensues emboldens one to do more of this. After holding and releasing a hotspot, massage and gentle stretching and mobilize the area to clear it and smooth and soothe it. Use heat before, and even after.

When you find a hotspot you just be still and keep the pressure on it, breathing through it, opening and relaxing the muscles in the area. Using imagery of chocolate melting can help. First you may only be able to take the pressure of a big wide ball (in areas like the thigh and buttocks), but after that you can use a smaller ball to go deeper and get more pressure for full release. (It’s short term pain, but pretty immediate and long term release from pain.)

What I’ve learned about back and pelvic pain is that something as simple as muscle trigger points can be excruciatingly painful, and damaging to the spine.

And I’ve learned to use a therapy ball or tennis ball to discover where these points are, because these points themselves don’t hurt until you press on them.

And to compare how the opposite body party pressed in the same area feels—thereby you can without doubt discover them.

Holding them down for anywhere from 30 seconds to 3-5 minutes, even though the are painfully “hot” releases them and solves things.
And there can be many of these in one site or in multiple sites on the same limb or muscle and you work each one much like peeling an onion, until you can put pressure without pain.

There are certain body parts that correlate to pain in the pelvis and lower back. The glutes the butt, down to the hamstring, the inner thigh and the outer thigh are all generally productive areas to explore.

Oct 30 2021

This may be of use to some, esp if you have leg length discrepancy (one leg shorter)…

Nerve conduction test, pelvic/abdomincal ultrasound

Oct 30 2021

Last week I had a nerve conduction test, where the specialist doctor concluded that “the problem is not coming from my spine, including the cysts.” I.e… he found that my nerve roots from S1 and S1 are functions normally. I also had a pelvic and abdominal ultrasound which found nothing that could account for the sacral/lower/back/perineal problems and pain.

Nov 12 2021

UPDATE NOV 12 – upon doing physiotherapy on the TLJ joint which is the thoracic lumbar joint, which is higher up the spine, my sacrum but and anal pain drastically improved! I’m back to normal functioning with just a bit of pain.
There can be no indication (pain nor stiffness) that you have a problem in that joint —but still that problem radiates pain down into the lower back, sacrum and even the tail bone in the butt.
It’s a little known by doctors, or anyone, and it goes by many names including thoracic lumbar syndrome and Maignes syndrome.
I’d suggest everyone do physiotherapy on the thoracolumbar spine with two tennis balls. I’ll post the link below on how to do it.
If you get results that’s a big clue don’t you think? And it’s cheap, fast, and easy to do

Nov 14 2021

Something to consider…

Nov 30 2021

UPDATE: Discovered my spine is twisted in two directions. That will cause all manner of SI joint and muscle problems and pain. If you have one leg shorter than the other, you may be interested in this… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3679640/
And his exercises are REALLY helping… https://pritrainer.com/pri-left-aic-right-bc-beginner…/

Tarlov and other cysts on imaging

Support group member question: I maybe read this in your past posts but do you have sacrum TC’s?

Cindy:  Yes. 2.1cm on S2, and two smaller ones on S1.
and they’ve found cysts in my liver and kidney… And had two removed from a breast… while these are different… it’s a cysty body, so its possible I may have more elsewhere. The way I am seeing things is not in absolutes or black and whites. We don’t know which came first, pain from cyst or cyst due to other problem/pain… (chicken/egg)… and then at some point it’s all just a big mess LOL. But I do know there’s LOTS we can do to help with problems caused by cysts or resulting in cysts….

…and I had a nerve conduction test, where the specialist doctor concluded that “the problem is not coming from my spine, including the cysts.” Ie he found that my nerve roots from S1 and S1 are functioning normally.

Mar 2022

I started walking outdoors. Even in deep snow. It was hard work, but the pain was “worse,” so the snow didn’t matter haha.

Did a challenge with my sister and my app tracked that I walked more than I ever walked in my life in one month.

Got a treadmill and walk even more hours indoors even while working, because all I could do was walk with pain. (Standing was worse.)

My foot which had previous bunion and foot reconstruction started to severely hurt, and stopped my walking.

Second toe became inflamed, swollen and with boney bumps…it wouldn’t straighten, began curving downward: hammer toe

I massaged and stretched it, a few weeks, but to no avail.

I got orthotics, which also raised my leg 1/8 an inch, for whatever that was worth. No immediate change, but I still mostly wear them.

Realized my big toe has become ineffective, atrophied (weakened, useless), and my second toe was doing all the work.

So I began therapy on the big toe, exercising it, bending it, gripping with it, and both toes began to recover.

At one point foot and leg cramps were getting real bad. I’d had them most my life, on and off, but magnesium supplements I used to take managed them.

I’d gone back on the magnesium for constipation, in higher dose than ever before, but my cramps were still getting worse.

June 30 2022

Mental Health during pain and physical illness… My Tarlov Cyst journey started in 2020 with three sacral cysts, and this year I discovered five in the thoracic spine.
The lower back pain was so severe it had me working, eating, and sleeping—living!—on my belly.
That’s the only position that gave some relief for nearly two years.
I’m sure I don’t need to tell you that navigating doctors and the system is challenging in the best of times, and aggravated during Covid lockdowns.
While my physical health suffered, my mental health never did.
I met many of you here and heard your Tarlov stories and similar struggle, with mental-emotional pain added ON TOP of the physical…
…and my heart cracked because I just couldn’t imagine having both of these.
You may be wondering how I could have NOT suffered mental emotionally, and it’s because of the work I did prior to my Tarlov journey, (starting in 2009).
I’ve been helping people with mental-emotional breakthroughs ever since, but have not sharing my methods in the physical health area. (I have mostly served spiritual, not religious, seekers.)
This personal Tarlov experience opened my eyes and gave me more compassion for people with health issues, in particular for pain, and is making me rethink who I serve.
I’m aware that not getting stuck in the mind, not adding mental-emotional distress to the physical pain and problems enabled me to better seek and find the information, resources, assistance, and tools I needed to help the bodily condition, and faster.
It freed me to test and apply treatments in the clinic and at home, to find and use what worked for this body.
It also kept me from becoming desperate, doing desperate things, or giving up.
I’ll always remember the first turning point when I began to get relief!
There have been many more since, in a constantly improving direction.
Now all my symptoms, including the bowel, PGAD, SI joint, and pelvic floor dysfunctions are all vastly improved and I’ve returned to nearly normal functioning (still with daily home therapy.)
And I am returning to my regular workload… And am thinking of helping those in physical pain.
So I’m reaching out to see if anyone feels that mental-emotional assistance would serve you at this time.
Message me, and maybe I’ll hold a zoom group of Tarlov cyst patients interested in the mental emotional side, to discuss this.

(If you want you know more about me you can google my name you will find me all over the web, since 2010, when I began speaking about my mental-emotional/spiritual breakthroughs.)

Jan 2023

While my symtpoms are still in most of the areas they have been in for the most part, I categorize them more as pain irritating rather than pain. That makes me think the thoraco-lumbar issue has been a major culprit all along, and there’s still some work to do.

Feb 11 2023

I missed my dry needling appointment this week, and my neck/traps, which is now the bigger pain than the sacrum/perineum, had gotten worse this week.

It reminded me of a neck problem back from 2010 after whiplash from being hit from behind in a car, and the phyisotherapy I did back then, so I quite the current exercises and started doing the same McKenzie ones that gave me neck relief back then… and I got immediate relief around the neck!…

Pain above caused pain “down under!”

…AND THEN a couple days later, the sacrum/perineum had sudden relief ahhhhhh for the first time in two years+, the problem is receding, getting milder, and centralizing, moved up out of the perineum, and back up the spine just like McKenzie said. Amazing!

Amazing that a problem higher up was causing a problem so much further away, lower down. Or at least contributing to it. This truly has been like peeling an onion.

Don’t get tunnel vision focusing on one thing. Keep experiementing, keep peeling, and keep in mind old injuries.

I just re-ordered two books I thought I was done with (and gave away to others who had pain): Treat Your Own Neck and Treat Your Own Back, by physiotherapist Robin McKenzie. Excellent books.

Could this possibly become fully healed?

About a week ago I had the thought, for the first time, that it’s possible it could all go away and my back could feel better than it has since I was 20.

The problem in the neck was worse on the right, more pain and restriction there, so I used all the exercises in the McKenzie book (read it to understand that).

Since I still have some lumbar symptoms I’ve also returned to McKenzie exercises for the back and it seems to benefit it further, though response had plateaued before.

Feb 19 2023

What’s left is neck restriction and a “fuzzy“ nerve irritation feeling, mostly in my neck, the base of my head (on the right side), a little less pronounced down into the thoracolumbar area.

There is also pressure down into the perineum, like a nerve is being cut off; similar the pressure and pins and tingles from sitting on your foot too long.

The problem in the neck are of restriction now, not so much pain. There is clicking and popping. The muscles and fascia feel stuck, as if glued together. Moving is kind of like rubbing Velcro together.

My therapy includes “flossing,” nerves and muscles, moving them back and forth and massaging them. I used to focus like that on the sacrum, then the thoracolumbar area, now mostly the neck.

While the issue recedes up to the neck, the rest of the symptoms are still there lower in the body, but they are weakening, while gradually moving up the spine.

Such flossing movement causes clicks and pops in various locations far away from the neck, even down into the sacrum at times!

I had professional trigger point massage on the back and neck for the first time, but it really didn’t do anything.

I think physiotherapy is much more effective.

My assessment of the issues

While I do have one leg slightly shorter than the other (after being hit by a car at age 8 and being in a cast for 6 months), I had

  • much more severe functional shortness caused by complete distortion of the skeletal system,
  • a twisted out of place pelvis/SI joint,
  • muscle weakness from the pelvis to the neck,
  • triggerpoints from the inner thighs, buttocks, through the pelvic floor,
  • and all along the spine to the back of the head and jaw.

The left side of my body was dropping down and twisting left as the right side was hiking up and twisting right.

Basically my spine was collapsing and twisting from top to bottom, and the trigger points were almost the only thing left holding it all together.

This is what can come from not moving, laying in bed too much for too long.

The greatest benefit came from intensive trigger point therapy (ball pressure and especially dry needling), Pilates, and the McKenzie method.

Second in place were benefits from the left AIC therapy, especially important early on.

These therapies woke up my muscles, strengthened them, pulled things and push things back into position to allow healing to happen.

Caution against narrowing your search

There were so many dysfunctions, that had I thought there was only one issue, I’d still be in pain looking for it!

The body is whole, with this bone context to that bone, and one thing affects another.

I realized this early on and wished to find a professional who knew it all and could asses it all and come up with a wholistic plan.

I never found that person.

I don’t know if they exist, as yet.

For the most part when it comes to mechanical body pain, we have many divided specialists who only know some thing about their one particular area of expertise.

So the owner of the body, the one who knows the most about it intimately, must be the one to not get frustrated, but to keep an open mind, and keep experimenting with the body, and most of all, keep moving forward.

And keep moving, because motion is lotion.

My maintenance plan will be yoga for life and Pilates

My Muse on Tarlov Cysts

Could it be that Tarlov Cysts are the body’s way of coping, or just what happens, when the spine is twisted out of position by trigger points, imbalances, muscle spasms, and weak muscles?

Each on of those, including the cysts, aggravating the others, making the whole thing worse?

Hmmm looking very plausible now.

Muscle trigger points are normal and natural in the body, but they can get aggravated into shortening the muscle, presumably the muscle trying to hold things in place, but get stuck and frozen there.

Perhaps cysts are something similar.

I’d love an MRI to check on and compare the state of my cysts now.

To see if they changed, to know if they were the cause of the severe pain, or a symptom themselves of other issues.

I’ll keep my eyes peeled for research studies.

Gratitude

I am ever so grateful for the precise expertise of Eli at First Step physio therapy in Ottawa.