8 years later and doctors are still dismissive of Tarlov cyst pain and symptoms. We patients are abandoned and ridiculed by every type of doctor we see, so the suffering continues.
Great to see you Reta on a You Tube video, discussing this Rare Disease, Tarlov cyst Disease, and to know that all your hard work is finally getting the recognition you deserve, Love Sharon xx soft hugs xx
Sou portadora deste cisto também e já cheguei a passar 9 meses com dificuldades para andar por conta de dores fortissimas. Tomei muitos remédios que me fizeram mais mal do que bem. Hoje me mantenho em um estado razoável e a doença está controlada. Comecei a caminhar e hoje pratico corrida de rua 4 vezes por semana gostaria de passar isto para todas as portadoras. Parabéns pelo belo trabalho!
I was diagnosed last year. I have been given the diagnosis of IBS, Gerd, peripheral neuropathy, and herniated disc in my lumbar spine and told see a pain managment doctor. I am so glad I understand a littie and know I am not crazy or a hypochondriac.I have a question can I have flare ups?
Thank you for sharing I have tarlov cysts disease in my spine and pelvis eroding my sacrum bone and nerves in my spine. I get spine fluid leaks and body flares
We’re you able to get treatment? I know this video is old now - she says there were only three neurosurgeons treating this at the time. What kind of imaging (if any) determines whether this is what you have? I’ve spent YEARS in pain, trying to find answers.
No wonder Disability denied my case! My quality of life is gone, pain 24/7 I've refused to take pain pills and I've been on medical marijuana for 3 years now. No doctor seems to find the source of my pain and when I bring up the Tarlov cyst shows up on the MRI report..they totally dismiss it and think I am there for pain mess which I don't even ask for. It's sad how some of us have to live this way.
+E. SS denied me too, had to get a lawyer & have a hearing w/ a judge, MD & social worker. I took articles with me and the MD didn't have any questions for me as I answered all of them. I am now a retired nurse and worked neurosurgery for several yrs having never heard of TC's before. Don't be quick to jump into a procedure as infection is a common complication. Plus they aren't sure what causes them. I had a fusion L5-S1 in 1990 and one theory is scar tissue from prior procedures is a cause. Get informed=be armed. There is no quick fix. Just learn all you can & maybe get a lawyer & get a hearing scheduled. I think they don't know what it is so they put it on the bottom of the pile, Be cautious with some videos from MD's that sound like they can fix TC's, exhaust other non-invasive tx FIRST! Lying flat freq. helps greatly! Take care!!
+E. I was just DXd 2 weeks ago. Then spent 11 days in hospital so I could be eligible for Ketamine Infusions (was on another med) recommended by my new Pain Management doc. SS Disability denied me first time around (in 2009 or 2010) and I also had to get a lawyer to finally get approved (with the help of my PCP) for Fibromyalgia and Lyme in very late 2013.That's 4 years I couldn't work and had no income. The SS judge on my case, after postponing the adjudication, offered me a deal an hour before my court case was set to begin. They offered me HALF of the money I was "entitled" to, leaving me in an impossible conundrum. If I refused the offer, I had no way of knowing they'd be favorable or not. My lawyer agreed I should take the deal to make sure I got some money and insurance. Lots of fun! In the past year I've been DXd with Glaucoma (downgraded to high eye pressure), Intussusception (small bowel blockage) and 5 herniated discs with stenosis and the Tarlov Cyst Disease. Every time I go to the ER or the Pharmacy they assume I am a drug seeker. Since 2000 I have NEVER even asked for any kind of opiate meds and was using a Duragesic patch for pain (which I NEVER asked to be increased or asked for breakthrough pain meds). This past year I've had real trouble with the patch so I asked to be taken off of it (which started this whole snowball rolling with the DXs). Slowly, this disease takes your livelihood, your dignity, your life. I was fortunate to have wonderful children who have helped me these past 6 to 7 years. Without them I would be living on the streets or dead. I must lie (mostly) flat all day and travel in a wheelchair, which is very hard to tolerate, to doctor appointments. Rarely can I enjoy a meal at a restaurant or see a movie in a theatre. It sets me back for days to weeks. Docs keep throwing more drugs at the problem. I'm hoping the PM doc's therapy will help, but it only works with 50% of the population. I hope your case is resolved soon as I know how much it takes out of you to go through it. Good luck with finding the right care for your DX and with your SSDI case.
I have it for 10 years now in 2011 they found it but was dismissed months after as they told me was an mri image irregularities... They told me for years I was having somatic disorder.... Ive been loosing my life quality over the years...I'm 31 and I look like an old lady.... Walking with a cane, taking opiates, in pain 24/7 altough the pain intensity vary. I've lost a good amount of sensibility in my right side... And I feel tingling all the time... My headaches kill me last time i was on the floor screaming (those fluctuations on the spinal fluid) yeah they can be very nasty. They told me i was crazy over the years.... Until this last month my doctor demanded the hospital to accept me and they were too saying I was nuts with stress... Until the 3rd day where they made a new mri with contrast and then they found a tarlov cyst with 1.3 cm.. Seems small but my bones are already with problems there and I have functional scoliosis due to the pain and bad positions to bear the pain.... Nobody wants to do surgery cuz they told me the cyst will just come back. I imagine everyday myself raising my child working and living a normal life.... But I can't im in pain everyday.... I fight against this everyday and I no longer attach myself to depression.... Cuz cmon feeling crap and sad aint gonna get us better..... So advice for you... Do your life the best you can. Be gentle with yourself and don't care what others think. You are doing the best you can but don't go down the depression hole it will help you in absolutely NOTHING. accept your life will never be the same accept to live with your new self...
I commend you for staying positive. As someone who lives with few, to no answers for life-altering chronic pain, I try also to focus on the things I CAN do. I refuse to take drugs that doctors want to give me though. I feel like that’s a losing path for me. But I do occasionally take a high quality organic CBD oil when it gets real bad. Also several doses of turmeric mixed with black pepper (I fill my own capsules) helps lessen inflammation. Most pain involves inflammation. When it’s bad, I take two capsules every hour for several hours. It helps every time. Good luck. And I hope you find answers! Power on! 👊
Yo tengo mi cirugia tengo 6 meses pero mi dolor es mucho quiera saber si unas terapias para mejor mi dolor .porq tanta pastillas ya estoy cansada . Pense q al operame no hiba a tener dolor y tengo mas vivo Dallas TX
very sad that there is so much cancer research being done when they already have a cure BUT nothing being done for those of us suffering in pain with Tarlov/Perineural cysts. I happen to be one of the lucky 3% with a 2 small cysts at my C5-6 and another at my C6-7 level.
@Krista, i just found out the same. one in c6/7 and one c7/T1 for me. Do you have any formaminal narrowing or dish issues above or below where your cysts are?
I live in uk there is no group to help us any ideas cos I like to know more.i been in agony for years now and it taken a nasty turn to my groin anyone who has this condition know what I mean....the doctors I spoken to not got clue fortunately seen on MRI but they were taken as being one of those things buggered don't think of it.....so depressing I stuck in bed 24/7.if I had money I would come see that doctor in America but logistic of flying home half way around world after operation like that is damned if I do damned if I dont
I have a Perineural Cyst same as "Tarlov Cyst" on my cervical spine on the left side of c6 and c7. It became symptomatic in February 2019. I Fell in December 2018 and hurt my left hand. I wore a splint then in February 2019 signs of Dupuytrens appeared in my left hand along with pain that went from my hand to my neck and vice versa. other issues noted on my neck MRI are Cervical DJD, lordosis, and Neural Foraminal Narrowing. With this evidence the Neurologist I first saw said I had Fibromyalgia? Now since my dispute they added cervicalgia. I am left to wonder if the Perineural Cyst on my neck is the main issue that has been agonizing with tingling pain in all my limbs but mainly in my upper extremities, with migraine headaches. Currently trying to work with my Dr's If the Perineural Cyst is the main issue but they say I can't Diagnose myself. I am surrendered in pain knowing I can not argue with Education. I am Thankful for information like this. Truly, Maribel Email marjacques@yahoo.com
I’m SO sorry you’re suffering with all of that! 🥺 Doctors say you can’t diagnose yourself?! ..but are they doing anything to find answers? If you don’t take matters into your own hands when it comes to researching it, I’ve learned that most often they sure as heck won’t research for you. They give you the 30 minutes in their office, then forget about you. Hang in there.. but most of all, keep pushing for answers! Keep researching!! My personal care physician has often told me that if I can figure this out she’s happy to refer me to someone. 🤯 She’s sympathetic, but that’s about all. She knows nothing - not even enough to know what kind of doctor or tests to refer me for. I DID find some answers online, and asked for a referral to se a specialist several states away - and he was the first person to confirm one source of my pain. I cried when I finally - FINALLY - felt heard. I thought I was finally on the right path. Except there’s no fix for what he found. I believe there’s more going on so I keep searching… I’ve seen countless doctors and spent a fortune on tests, and travel to see doctors ..and still searching for more answers. I’ve mostly learned to live with life-altering pain. Never stop advocating for yourself!
@@jazzmoos5382 Thank you for your encouragement. I believe my Dr’s have learned that academia is not before it’s Maker, for our Potter chose the foolish things to shame the wise..No longer do they call my medical issues fibromyalgia but a Spine disease. I have a new neurologist that works with me in the 20 minutes . She has been allowed to practice medicine instead of practicing pharmaceutical routine quota for their benefactor. Our God is with us all in Spirit and Truth. Blossom in HIM, 🌹✨🌺
kooter stonecipher , Yes I have multiple cysts at that level also and I get dizzy spells. Sometimes I feel like I am going to fall over. Vertigo for me can get bad at times.
I have several at T2, neurologist is convinced it's an inner ear issue even though you can clearly see the cysts in my cts and MRIs. When I mentioned TCs, he said he never heard of them and then lechured me how he went to medical school and I didn't....
Saya juga punya kista tarlov. Saya didiagnosa psoriasis artitis dan ankylosing spondylitis. Sayaada sacrolitis juga ditulsng ekor. Hari hari merasakan nyeri . Adakah yang bisa membantu saya.
Hi...i have tarlov cyst @ S2 S3 (recurrent).. tarlov cyst removal done on 2015... now i'm suffer for the recurrent cyst... i also have haemangioma at my spine, multiple cyst & haemangioma at my liver..
8 years later and doctors are still dismissive of Tarlov cyst pain and symptoms. We patients are
abandoned and ridiculed by every type of doctor we see, so the suffering continues.
So true we are all being failed and we are suffering 🥵 sending love and healing vibes
Great to see you Reta on a You Tube video, discussing this Rare Disease, Tarlov cyst Disease, and to know that all your hard work is finally getting the recognition you deserve, Love Sharon xx soft hugs xx
Sou portadora deste cisto também e já cheguei a passar 9 meses com dificuldades para andar por conta de dores fortissimas. Tomei muitos remédios que me fizeram mais mal do que bem. Hoje me mantenho em um estado razoável e a doença está controlada. Comecei a caminhar e hoje pratico corrida de rua 4 vezes por semana gostaria de passar isto para todas as portadoras. Parabéns pelo belo trabalho!
Jak tego dokonalas co robiłaś że tak się poprawilo
Danke ,gut zu wissen ,dass man nicht allein ist mit dem Schmerz 🤗
I was diagnosed last year. I have been given the diagnosis of IBS, Gerd, peripheral neuropathy, and herniated disc in my lumbar spine and told see a pain managment doctor. I am so glad I understand a littie and know I am not crazy or a hypochondriac.I have a question can I have flare ups?
Thank you for sharing I have tarlov cysts disease in my spine and pelvis eroding my sacrum bone and nerves in my spine. I get spine fluid leaks and body flares
awe that isn't good
We’re you able to get treatment? I know this video is old now - she says there were only three neurosurgeons treating this at the time. What kind of imaging (if any) determines whether this is what you have? I’ve spent YEARS in pain, trying to find answers.
Just diagnosed! Most likely about to get drainage within a few weeks. Very excited for the relief
No wonder Disability denied my case! My quality of life is gone, pain 24/7 I've refused to take pain pills and I've been on medical marijuana for 3 years now. No doctor seems to find the source of my pain and when I bring up the Tarlov cyst shows up on the MRI report..they totally dismiss it and think I am there for pain mess which I don't even ask for. It's sad how some of us have to live this way.
+E. SS denied me too, had to get a lawyer & have a hearing w/ a judge, MD & social worker. I took articles with me and the MD didn't have any questions for me as I answered all of them. I am now a retired nurse and worked neurosurgery for several yrs having never heard of TC's before. Don't be quick to jump into a procedure as infection is a common complication. Plus they aren't sure what causes them. I had a fusion L5-S1 in 1990 and one theory is scar tissue from prior procedures is a cause. Get informed=be armed. There is no quick fix. Just learn all you can & maybe get a lawyer & get a hearing scheduled. I think they don't know what it is so they put it on the bottom of the pile, Be cautious with some videos from MD's that sound like they can fix TC's, exhaust other non-invasive tx FIRST! Lying flat freq. helps greatly! Take care!!
+E. I was just DXd 2 weeks ago. Then spent 11 days in hospital so I could be eligible for Ketamine Infusions (was on another med) recommended by my new Pain Management doc. SS Disability denied me first time around (in 2009 or 2010) and I also had to get a lawyer to finally get approved (with the help of my PCP) for Fibromyalgia and Lyme in very late 2013.That's 4 years I couldn't work and had no income. The SS judge on my case, after postponing the adjudication, offered me a deal an hour before my court case was set to begin. They offered me HALF of the money I was "entitled" to, leaving me in an impossible conundrum. If I refused the offer, I had no way of knowing they'd be favorable or not. My lawyer agreed I should take the deal to make sure I got some money and insurance. Lots of fun!
In the past year I've been DXd with Glaucoma (downgraded to high eye pressure), Intussusception (small bowel blockage) and 5 herniated discs with stenosis and the Tarlov Cyst Disease. Every time I go to the ER or the Pharmacy they assume I am a drug seeker. Since 2000 I have NEVER even asked for any kind of opiate meds and was using a Duragesic patch for pain (which I NEVER asked to be increased or asked for breakthrough pain meds). This past year I've had real trouble with the patch so I asked to be taken off of it (which started this whole snowball rolling with the DXs). Slowly, this disease takes your livelihood, your dignity, your life. I was fortunate to have wonderful children who have helped me these past 6 to 7 years. Without them I would be living on the streets or dead. I must lie (mostly) flat all day and travel in a wheelchair, which is very hard to tolerate, to doctor appointments. Rarely can I enjoy a meal at a restaurant or see a movie in a theatre. It sets me back for days to weeks. Docs keep throwing more drugs at the problem. I'm hoping the PM doc's therapy will help, but it only works with 50% of the population. I hope your case is resolved soon as I know how much it takes out of you to go through it. Good luck with finding the right care for your DX and with your SSDI case.
Same with me
you will find the right doctor who understands don't take no for an answer.
I have it for 10 years now in 2011 they found it but was dismissed months after as they told me was an mri image irregularities... They told me for years I was having somatic disorder.... Ive been loosing my life quality over the years...I'm 31 and I look like an old lady.... Walking with a cane, taking opiates, in pain 24/7 altough the pain intensity vary. I've lost a good amount of sensibility in my right side... And I feel tingling all the time... My headaches kill me last time i was on the floor screaming (those fluctuations on the spinal fluid) yeah they can be very nasty. They told me i was crazy over the years.... Until this last month my doctor demanded the hospital to accept me and they were too saying I was nuts with stress... Until the 3rd day where they made a new mri with contrast and then they found a tarlov cyst with 1.3 cm.. Seems small but my bones are already with problems there and I have functional scoliosis due to the pain and bad positions to bear the pain.... Nobody wants to do surgery cuz they told me the cyst will just come back. I imagine everyday myself raising my child working and living a normal life.... But I can't im in pain everyday.... I fight against this everyday and I no longer attach myself to depression.... Cuz cmon feeling crap and sad aint gonna get us better..... So advice for you... Do your life the best you can. Be gentle with yourself and don't care what others think. You are doing the best you can but don't go down the depression hole it will help you in absolutely NOTHING. accept your life will never be the same accept to live with your new self...
I commend you for staying positive.
As someone who lives with few, to no answers for life-altering chronic pain, I try also to focus on the things I CAN do. I refuse to take drugs that doctors want to give me though. I feel like that’s a losing path for me. But I do occasionally take a high quality organic CBD oil when it gets real bad.
Also several doses of turmeric mixed with black pepper (I fill my own capsules) helps lessen inflammation. Most pain involves inflammation. When it’s bad, I take two capsules every hour for several hours. It helps every time.
Good luck. And I hope you find answers! Power on! 👊
8 years old….time for update from someone in this foundation.
Yo tengo mi cirugia tengo 6 meses pero mi dolor es mucho quiera saber si unas terapias para mejor mi dolor .porq tanta pastillas ya estoy cansada . Pense q al operame no hiba a tener dolor y tengo mas vivo Dallas TX
very sad that there is so much cancer research being done when they already have a cure BUT nothing being done for those of us suffering in pain with Tarlov/Perineural cysts. I happen to be one of the lucky 3% with a 2 small cysts at my C5-6 and another at my C6-7 level.
Krista Silvestre
@Krista, i just found out the same. one in c6/7 and one c7/T1 for me.
Do you have any formaminal narrowing or dish issues above or below where your cysts are?
I live in uk there is no group to help us any ideas cos I like to know more.i been in agony for years now and it taken a nasty turn to my groin anyone who has this condition know what I mean....the doctors I spoken to not got clue fortunately seen on MRI but they were taken as being one of those things buggered don't think of it.....so depressing I stuck in bed 24/7.if I had money I would come see that doctor in America but logistic of flying home half way around world after operation like that is damned if I do damned if I dont
Hi does spine anesthesia could cause Tarlov Cyst to grow or worsen? Should I avoid Spine Anesthesia?
Doctors in Port Charlotte or North Port areas.?
I have a Perineural Cyst same as "Tarlov Cyst" on my cervical spine on the left side of c6 and c7. It became symptomatic in February 2019. I Fell in December 2018 and hurt my left hand. I wore a splint then in February 2019 signs of Dupuytrens appeared in my left hand along with pain that went from my hand to my neck and vice versa. other issues noted on my neck MRI are Cervical DJD, lordosis, and Neural Foraminal Narrowing. With this evidence the Neurologist I first saw said I had Fibromyalgia? Now since my dispute they added cervicalgia. I am left to wonder if the Perineural Cyst on my neck is the main issue that has been agonizing with tingling pain in all my limbs but mainly in my upper extremities, with migraine headaches. Currently trying to work with my Dr's If the Perineural Cyst is the main issue but they say I can't Diagnose myself. I am surrendered in pain knowing I can not argue with Education. I am Thankful for information like this. Truly, Maribel Email marjacques@yahoo.com
I’m SO sorry you’re suffering with all of that! 🥺
Doctors say you can’t diagnose yourself?! ..but are they doing anything to find answers? If you don’t take matters into your own hands when it comes to researching it, I’ve learned that most often they sure as heck won’t research for you. They give you the 30 minutes in their office, then forget about you.
Hang in there.. but most of all, keep pushing for answers! Keep researching!!
My personal care physician has often told me that if I can figure this out she’s happy to refer me to someone. 🤯
She’s sympathetic, but that’s about all. She knows nothing - not even enough to know what kind of doctor or tests to refer me for.
I DID find some answers online, and asked for a referral to se a specialist several states away - and he was the first person to confirm one source of my pain. I cried when I finally - FINALLY - felt heard. I thought I was finally on the right path. Except there’s no fix for what he found. I believe there’s more going on so I keep searching…
I’ve seen countless doctors and spent a fortune on tests, and travel to see doctors ..and still searching for more answers. I’ve mostly learned to live with life-altering pain.
Never stop advocating for yourself!
@@jazzmoos5382 Thank you for your encouragement. I believe my Dr’s have learned that academia is not before it’s Maker, for our Potter chose the foolish things to shame the wise..No longer do they call my medical issues fibromyalgia but a Spine disease. I have a new neurologist that works with me in the 20 minutes . She has been allowed to practice medicine instead of practicing pharmaceutical routine quota for their benefactor. Our God is with us all in Spirit and Truth.
Blossom in HIM, 🌹✨🌺
They are the same . Find a trigger point injections
I have a tarlov cyst at the T1 vertebra, It is very painful. Does anyone with the cyst at this location have dizzy spells and almost pass out?
kooter stonecipher , Yes I have multiple cysts at that level also and I get dizzy spells. Sometimes I feel like I am going to fall over. Vertigo for me can get bad at times.
I have several at T2, neurologist is convinced it's an inner ear issue even though you can clearly see the cysts in my cts and MRIs. When I mentioned TCs, he said he never heard of them and then lechured me how he went to medical school and I didn't....
Yes! I have one at C6/7 and another at C7/T1 and get dizzy spells when bending over.
Saya juga punya kista tarlov. Saya didiagnosa psoriasis artitis dan ankylosing spondylitis. Sayaada sacrolitis juga ditulsng ekor. Hari hari merasakan nyeri . Adakah yang bisa membantu saya.
Hi...i have tarlov cyst @ S2 S3 (recurrent).. tarlov cyst removal done on 2015... now i'm suffer for the recurrent cyst... i also have haemangioma at my spine, multiple cyst & haemangioma at my liver..
After surgery ur cycst come back