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.
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.
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.
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 too went to Mayo last nov -23 2 cysts on s2 with thigh , pelvic , hip foot pain, pulsatile tinnitus high pitch 24/7. They did neck X-rays and he said neck was fine so I declined mri on neck . Last month I started shoulder, pain, arm, pain down the right side into the hand into the collarbone area of my back shoulder blade so I got my primary tube order. An MRI of the cervical and thoracic spine , my gut feeling was right I ended up having multiple cyst in the upper spine. Of course, the radiologist did not measure them. So trust your gut instinct. I even had heart attack symptoms but I didn’t do heart testing because I truly felt I had cysts on my upper spine and I was right . I Was dismissed by Mayo and was told by a Nuro surgeon to not let anybody operate on me! So now I will be sending all my info to the top 2 physicians in California and Texas.
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.
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.
I’m sorry to hear that. Are there any specialist in your area? Have you been to the Tarlov Cyst foundation website to check for providers in your area. Do you use a coccyx cushion to relieve tailbone pain when you are sitting? I have been having more severe pain as of late also. I will be getting an MRI in two weeks to see if my cysts grown or if something more is going on. Please keep me updated.
@Beautifully Broken w/ Patricia thank you for your kind words. I tried going to work this morning but I had to return home after 1 hour. I will look into getting a cushion and I will see if I can locate a Tarlov Society too. Sorry to hear you're in pain yourself again. I will be seeing my doctor tomorrow and organise a scan too.
@@di3352 make sure the scan is of the sacrum. The cysts can be anywhere in the spine but typically in the sacrum. A lumbar spine MRI won’t show that are. And I’m not sure if you have Amazon? They have a huge selection of coccyx cushions.
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.
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!” 🙏🏼
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!
No. I have no had any treatment done. I did find someone that is going to perform the diagnostic nerve block this week to confirm the pain is from my cysts.
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?
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.
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
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.
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 ?
There could be a connection between Ehlers Danlos syndrome and Tarlov Cyst disease. I have not seen any other surgeons on any other sites, but the one I’ve looked at. There is one in Texas and there’s one in California. I had a consultation with both of them. I’m not sure I would trust that. This would take a three day recovery. And since I have so many illnesses, my body doesn’t heal normally. So if it’s a three-year healing time. I would probably take twice as long.
@@godzgirl371 you'll never see a result search for National Institutes of Health Tarlov cyst surgery. This guy in my opinion is the real deal one. The NIH is about purity of research. Not advertising a business promotion for something not ready for the masses anyway . LOOK UP minimally invasive Tarlov cyst surgery using tubular retractors with the Scanlon modified technique. That's the great surgeon at the NIH. I'm not going to say his name for one reason. He doesn't care about fame at this time. The Tarlov foundation exists to promote Fiengenbaum only .
But truly currently I don't believe in surgery for nor the speciality to repair cerebral spinal fluid leaks with epidural blood patches. Those guys turn off comments. On their channel's. To me it means they are lying nothing else. Trigger point epidural steroid injections with only two specific procedures. Can safely put them all out of business. I'm proof of that.
@@jamesmcconnell2473 they were not too pushy. I’m not sure that I said that. The doctor in Texas wanted me to have a diagnostic nerve block because so many other doctors had diagnosed me with different things and he needs to make sure that it’s my cysts that are causing the pain. However, I cannot find anyone in my area that was willing to perform that nerve block. So I have not proceeded to move forward. My health is declined so much that I would not probably heal properly from that surgery.
Yes, I have had several bad experiences with injections. For my Tarlov cyst, disease, the neurosurgeon wanted me to have a injection of lidocaine to see if that would stop the pain even for 10 minutes.
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.
I am not able to have epidural steroid injections two to my Ehlers Danlos syndrome. I cannot have those. It causes me a flare, and it can cause more harm to my collagen.
@@godzgirl371 been my experience flare's are a type of a payback mechanism due to pushing. Take May you're feeling decent right now. So why not push it. Correct? May 29 the is why you should never push it during good times. May 29 the flare lasts nine days. A secondary flare will be 32 days after May 29. Time to push is when you wouldn't dare. During the flare. Only times where's there's no payback mechanism.
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.
Sadly, I’m not doing better. I’m actually on my way to get an MRI to see if things have gotten worse.
I'm Intrested in Tarlov cysts and your discoveries. I have one tc
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 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.
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.
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.
Have you reached out to the specialist in California and or taxes? If not, I highly recommend doing so.
I too went to Mayo last nov -23 2 cysts on s2 with thigh , pelvic , hip foot pain, pulsatile tinnitus high pitch 24/7. They did neck X-rays and he said neck was fine so I declined mri on neck . Last month I started shoulder, pain, arm, pain down the right side into the hand into the collarbone area of my back shoulder blade so I got my primary tube order. An MRI of the cervical and thoracic spine , my gut feeling was right I ended up having multiple cyst in the upper spine. Of course, the radiologist did not measure them. So trust your gut instinct. I even had heart attack symptoms but I didn’t do heart testing because I truly felt I had cysts on my upper spine and I was right . I Was dismissed by Mayo and was told by a Nuro surgeon to not let anybody operate on me! So now I will be sending all my info to the top 2 physicians in California and Texas.
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.
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.
I’m sorry to hear that.
Are there any specialist in your area? Have you been to the Tarlov Cyst foundation website to check for providers in your area.
Do you use a coccyx cushion to relieve tailbone pain when you are sitting? I have been having more severe pain as of late also. I will be getting an MRI in two weeks to see if my cysts grown or if something more is going on.
Please keep me updated.
@Beautifully Broken w/ Patricia thank you for your kind words. I tried going to work this morning but I had to return home after 1 hour. I will look into getting a cushion and I will see if I can locate a Tarlov Society too.
Sorry to hear you're in pain yourself again. I will be seeing my doctor tomorrow and organise a scan too.
@@di3352 make sure the scan is of the sacrum. The cysts can be anywhere in the spine but typically in the sacrum. A lumbar spine MRI won’t show that are.
And I’m not sure if you have Amazon? They have a huge selection of coccyx cushions.
@@godzgirl371 thank you so much. I'm feeling much better again. :)
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.
Thank you for sharing. Sounds so familiar to my issue's, story .❤
Hi! It’s nice to meet a fellow Minnesotan who knows kind of what I’m going through. ❤
I hope you have a good medical team that can help you!
And nice to meet you too!!
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!” 🙏🏼
Feigenbaum, Frank, M.D. (Neurosurgeon)
Feigenbaum Neurosurgery P.A.
Energy Square 1, 4925 Greenville Ave., Suite 1307
Dallas, TX 75206
Phone: (214) 351-8450
Fax: (214) 366-3713
I wish you luck. Keep me updated if you’d like.
Size doesn't matter is what the experts say.
You wouldn't be in Houston would you? Kristi Tate
@@jamesmcconnell2473 I’m not
@@godzgirl371 thanks Patricia but I'm talking to you and Kristie Tate both she's in Texas. See if through her you somehow find a way. See what I mean?
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!
No. I have no had any treatment done. I did find someone that is going to perform the diagnostic nerve block this week to confirm the pain is from my cysts.
Thank you so much❤
Thanks for this ❤
Thank 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?
Can this cause Cerbral spine leaks.
I have 4 tarlov cysts.
You might ask him if the diagnostic block could be avoided using another way.
Think of nerves flowing over the back like long hair does. The cysts look like knot's in the hair.
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.
ich D sind die Ärzte Dr. Warnke in Zwickau, Dr. Brelie in Bonn und Dr. Sommer in München. Es werden immer mehr, die die augen für Tarlov öffnen
In germany most Doktors dont know Tarlovzysten
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
I've got one at S2 of the sacral spine 1.4 cm by 0.9 cm.
I won't say his name here. However minimally invasive Tarlov cyst surgery using tubular retractor's with the Scanlon modified technique.
Thank you ❤ I know this is real
I hope you’re able to find the help you need
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.
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 ?
There could be a connection between Ehlers Danlos syndrome and Tarlov Cyst disease. I have not seen any other surgeons on any other sites, but the one I’ve looked at. There is one in Texas and there’s one in California. I had a consultation with both of them. I’m not sure I would trust that. This would take a three day recovery. And since I have so many illnesses, my body doesn’t heal normally. So if it’s a three-year healing time. I would probably take twice as long.
@@godzgirl371 you'll never see a result search for National Institutes of Health Tarlov cyst surgery. This guy in my opinion is the real deal one. The NIH is about purity of research. Not advertising a business promotion for something not ready for the masses anyway . LOOK UP minimally invasive Tarlov cyst surgery using tubular retractors with the Scanlon modified technique. That's the great surgeon at the NIH. I'm not going to say his name for one reason. He doesn't care about fame at this time. The Tarlov foundation exists to promote Fiengenbaum only .
But truly currently I don't believe in surgery for nor the speciality to repair cerebral spinal fluid leaks with epidural blood patches. Those guys turn off comments. On their channel's. To me it means they are lying nothing else. Trigger point epidural steroid injections with only two specific procedures. Can safely put them all out of business. I'm proof of that.
@@godzgirl371 okay you spoke to Dallas and Sacramento . Just one question then ? Were they too pushy ?
@@jamesmcconnell2473 they were not too pushy. I’m not sure that I said that. The doctor in Texas wanted me to have a diagnostic nerve block because so many other doctors had diagnosed me with different things and he needs to make sure that it’s my cysts that are causing the pain. However, I cannot find anyone in my area that was willing to perform that nerve block. So I have not proceeded to move forward. My health is declined so much that I would not probably heal properly from that surgery.
Any fibromyalgia?
Okay I see you've had a bad injection experience. Correct me if i misunderstand a diagnostic block?
Yes, I have had several bad experiences with injections. For my Tarlov cyst, disease, the neurosurgeon wanted me to have a injection of lidocaine to see if that would stop the pain even for 10 minutes.
Hi! I’m not sure I understand your comment.
See it's not easy putting it into words. Sacral matter's. You've come this far. Doesn't have to be progressive.
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.
I am not able to have epidural steroid injections two to my Ehlers Danlos syndrome. I cannot have those. It causes me a flare, and it can cause more harm to my collagen.
@@godzgirl371 any chance the injectionist not up to snuff. Sometimes a nerve needs to be destroyed to stop leaking CSF.
@@godzgirl371 Tarlov is by definition a connective tissue issue if I understand it correctly?
@@godzgirl371 a doctor in Houston is rewriting the book for Tarlov clinical practices
@@godzgirl371 been my experience flare's are a type of a payback mechanism due to pushing. Take May you're feeling decent right now. So why not push it. Correct? May 29 the is why you should never push it during good times. May 29 the flare lasts nine days. A secondary flare will be 32 days after May 29. Time to push is when you wouldn't dare. During the flare. Only times where's there's no payback mechanism.
My legs and feet are going numb.
Mine do as well…