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Ive had one for ten years as far as i know mine sounds the same spot as yours. This showed itself on a scan and was remarked upon but no action was taken nor was it even mentioned as I had no symptoms and the scan was for something else entirely. This is the UK. I fell down a flight of stairs carpeted when around 20. I also fell down cellar steps which were concreter and not carpeted. Ive no idea which is the culprit but suspect the first was responsible as I had severe lower back pain thereafter. Now I am listening to you as no mention of this has ever been done but I’ve got scan results from 2015 and 2018 respectively and it states Tarlov cyst in lower sacral whatever noted. That’s it. I have things that start off pain in that area such as sometimes walking upstairs or hoovering the sofas, husband does this and most housework now as I have arthritis everywhere and needs multiple joint renewal surgery but dont want it done as where to start? I am 69 now and worried from what I have read that it gets worse with time even if you stop certain activities that hurt. Any ideas. Im only part way through your video so will see to the end if there’s anything I can do, without surgery.

I have 4 tarlov cysts.

Can this cause Cerbral spine leaks.

Thank you so much❤

Thank you for sharing. Sounds so familiar to my issue's, story .❤

Thanks for this ❤

Thank you for this. I have chronic pain (no diagnosis yet, though my rheum said I had hyper mobility, positive ana as well as other symptoms) and I am 19 years old. I get judged harshly for sleeping so much and being unemployed, I get ashamed for even thinking about mobility aids but the pain is increasing in severity.

That is why my general dr has ignored my tarlov cyst but once I saw that in my MRI I had started searching for info about it and all the pain makes sense now

Thank you.

I've got a few conditions. I get the symptoms you're describing and have had them flare up badly at times over a period of decades including periods of weakness. I didn't have a sacral spine MRI but had other areas of my spine scanned including my lumbar spine which picked up other things. I had an abdominal MRI which picked up the Tarlov cyst and then the MRI spinal MRI picked up the Tarlov cyst as an incidental finding. They definitely cause a lot of pain and possibly some of the other symptoms. Lipedema is a connective tissue disorder which I was diagnosed with some years ago.

I've got one at S2 of the sacral spine 1.4 cm by 0.9 cm.

Two tarlov cysts were identified at S2 - sacrum following a lumbar MRI. I had an EMG at Mayo Clinic and passed with flying colors. I a now being referred to vascular for a CORONARY CT and Ankle BI. I have had ranging symptoms across the past 2 years but exasperating symptoms since the end of July, 2023 following a 1/2 trail marathon. I got sick following the race and my primary didn’t feel I needed a covid test. Symptoms became worse and worse. MAYO has ruled out the cysts and any connective tissue disorders, ruled out any musculoskeletal disorders and ruled out anything neurological. My leg symptoms are anterior down the thights, not posterior. I am able to bring on the symptoms with exercise. I will be proceeding with the vascular assessment at MAYO. If the pain is in fact from my TARLOV CYSTS - 17 mm, one would think my pain would be radiating down the s2 nerve and that is not occurring.

I feel the same way about all of this

I have a huge tarlov cyst in the sacrum from L5 to s3 but luckily been stable for over 15 years with no nerve root compression visible.

My legs and feet are going numb.

Ich habe grosse zyste,aber auch spinalkanalstenose. Alle Ärzte in Deutschland ,bei denen ich war,sagten die zyste macht die Beschwerden nicht. Meine Beine und Füße sind taub,schwer und es kommen Lähmungen. Kann kaum noch Gehen.

I also watched your video about the Tarlov Cyst Syndrome. Did you ever find anyone to do the root block or have treatment for that? Thank you for these videos. I cried after watching these. Finding someone who understands. The education watching these has been helpful. My story is much like yours. I am still trying to find a diagnosis and someone who believes Tarlov cysts exist.

May I ask if you had nerve root fenestration and imbrication? Because I read that the cyst can regrow if the nerve root isn't wrapped in a special material. Also, did the surgeon perforate your sacrum or went around it? Much appreciated!

I hope since you posted this you are doing better. Thank you for this post. Your story seems unfortunately like mine. I had the mri … osteoarthritis, bone spurs and 5 tarlov cysts and they said “but that isn’t causing your pain, must be your fibromyalgia”. And what’s worse I just went through the same over cancer…2 years being told I had gas…nope it was stage 3 crc. Drs never listen to women especially.

Thank you for your help ❤

Thank you ❤ I know this is real

Thank you for your video. I'm watching from Queensland, Australia and I, too, have a Tarlov cyst. I'm currently in a lot of pain but I'm struggling to tell if it's my spine or my cyst. It's making it difficult to go to work and even do basic housework at home. Thanks for your video.

Neurology never heard of Tarlov is ultimately a good thing. Just what the doctor ordered for a type of anger that clarify's.

You've had a facet joint procedure by interventional radiology?

You might ask him if the diagnostic block could be avoided using another way.

Just because one doctor wants to do a diagnostic block before surgery. Apparently doesn't automatically mean that's true everywhere. There's a case on an ehlers danlos case a two needle aspiration fibrin glue injection is used first before a determination of full on excision. All tarlov study's involve the two needle technique currently. Another possiblity to reduce cyst height serrapeptase . The enzyme specific for Tarlov. The surgeons give sacral cushions with ice water machines attached.

A focal dilation of the nerve root sheath . It can be harder than steel and wear away bone yet a half a second later be softer than a cloud seen in a dream.

Topically black seed oil works instantly for headaches

Think of nerves flowing over the back like long hair does. The cysts look like knot's in the hair.

Ever seen the surgery? Not approved by the Tarlov foundation because he's a spine surgeon. Big freaking deal doesn't matter to me . Neurosurgeon's have blown it too. "Tarlov excision master technique". Note the theoretical flow of CSF. Looks like tides gentle back and forth.

It's a horrible thing doctors no longer have control licence's to control pain with opioids. How to deal? Never take nsaids two days consecutively. Green kratom you can take daily. Only two things work topically for the arms. Lavender essential oil and lemon essential oil. For foot issues ingest spirolina . Try not to judge people who don't understand inner Armageddon. You absolutely correct about music . Gary Moore and Phil lynott "don't believe a word".

I won't say his name here. However minimally invasive Tarlov cyst surgery using tubular retractor's with the Scanlon modified technique.

See it's not easy putting it into words. Sacral matter's. You've come this far. Doesn't have to be progressive.

Was a ED diagnosis after a questionaire or genetic testing . Also the NIH has their own Tarlov neurosurgeon the Tarlov foundation doesn't know about. Young maverick Mexican neurosurgeon his method has three day recovery not three years. He's in Maryland. I'm Jordan you've had extreme luck with imagining. You're destined for massive betterment. I should know I have fibromyalgia and s1Tarlov right side. Zero pain. Why did the injection hurt you ?

Thanks for the snappy reply Patricia. Whether lidocaine ESI nerve- block. All are gasoline in the nerve . Heat treatment. What did the doctor say about that horrible reaction?

Any fibromyalgia?

Okay I see you've had a bad injection experience. Correct me if i misunderstand a diagnostic block?

Good you haven't had the surgery. All surgery should suspended until they over come three year recovery's. Most up to date trigger point epidural steroid injection process seems to be the way to go. If you have located sacral Tarlov. That's all you need to know. Pain free in one month. As in zero pain . Only six office visits per year.

Can you give me the name of the doctor in Texas that you spoke of in this video? I’m in Texas and I’m having awful pain and I’m getting my 3rd MRI soon to see if it’s grown - then to find a doctor… so when you said “the other doctor was in Texas” I thought, wow! I landed here out of nowhere, and this is why. I’ll finally be able to confidently go to a doctor about this and know that he knows what he’s talking about! Thank you!” 🙏🏼

Hi! It’s nice to meet a fellow Minnesotan who knows kind of what I’m going through. ❤

Thanks for this, I’m 25 and my EDS has been progressing in severity since I was 14 years old. However in the last few months my wrists have begun subluxing on a daily basis, and so I’ve had to switch from my cane to a walker. It’s been a journey of shame, pride, excitement, and doom/hopelessness all at the same time.

Thank you for your video. You helped me feel better. I gave in and used a wheelchair for a family outing today. It helped. I'm still dealing with getting out into the world after 2yrs of being ill. I'm 40 with 2 kids. It's hard to give into mobility aids but I have places to get to!! #sarcoidosis #POTS #hypermobility

Thank you for the ramble :) I’m going through a similar journey with EDS progression at 35 and having a lot of icky shame/embarrassment/feeling like a burden stuff. It helps to hear from someone else that’s going through it too and has dealt with that negative self talk in a healthy way.

I believe you and I believe in you! Xoxo

Hi! I’m not sure I understand your comment.