I have been suffering for the last 5 years. I was finally able to get an MRI in which they provided evidence of the Tarlov cyst. My GP dismissed it and said theres no way that is causing you symptoms and there is nothing to do. I pushed and he said he gave a referal to a neurosurgen but he was really dismissive and told me my pain was the buldging disks and tried to push more meds. I'm in Ontario Canada, and I'm struggling to find someone who will listen to me and my pain.
I went through the same thing for 3 years. I finally found Dr. F's website and was shocked to see how many people go through this nonsense. I live in Colorado but called Dr.F and got the ball rolling. I flew to Dallas, had my appointment, which was incredible, flew home the same day, and waited to have my surgery a few months later. I have been pain-free and have my life back. My advice is to give his office a call.
What is the prevalence of CSF Leaks stemming from Tarlov Cysts? How many patients have Connective tissue diseases/conditions, such as Ehlers-danlos Syndromes. How do you address those instances during surgery & is there post-operative follow-ups with surgical patients to ensure that symptoms of such are being followed?
Hello dear Doctor Frank Feigenbaum, I am a family father and husband of Regina Reichel and live in Germany. My wife has Tarlov cyst. I need your help. unfortunately I can only speak German and Russian. How can I communicate with you? I need your help as soon as possible. I'm waiting for your reply. Kind regards, Pavel Reichel
I have a tarlov cyst on s2 and s3 and the constant pain, walking, standing, sitting sometimes is more than I can bare. This video is 2 yrs old. Is there any new information. I live in Arizona. And the only treatment is physical therapy which causes me more pain. I dont think any of the pt really understand that this is different from herniated disc which i also have and bulging disc pushing on my nerve root which i think is also the s2 and s3 nerves. I cant seem to find any relief no matter what i do. If there is anything someone can suggest i try. I would be so grateful to try anything that may give me some relief.
You sound like me. 😢 All the doctors wanted to do was injections. Expensive and not really helpful more than a day or two. I was thrown out of st. Luke's in kc when I lost bowel & bladder control. I begged for help, to no avail. It was traumatic & I already have trauma from medical issues. I just suffer until it bursts.😢
I was fortunate to have Dr. Feigenbaum do my tarlov cyst surgery last September 2022, and I can finally say that I'm FINALLY FREE OF PAIN! I was literally bedridden from the pain that caused by 6 tarlov Cysts in my sacral area! I was desperate for any kind of relief, but nothing worked! I finally found Dr. Feigenbaum when my husband said into his cellphone "doctors who treat tarlov cysts" and up came Dr Feigenbaum's video!" The next day I called his office and within weeks I was in his office for a consultation. He said I was definitely a candidate for surgery, and 4 weeks later we flew back to Dallas from Milwaukee WI for surgery! This surgery was life changing!! I can finally say that I am out of that horrible pain, and able to enjoy life, my new grandson and a lot more things!! Thank you Dr Feigenbaum for devoting your life to this horrible disease! I am forever in your debt!!
I have perineural cyst S2 - S4 the size of an orange, 8cm long ond about 3 cm Wide and it has eroded bones away.. constant pain in my head, back and legs, erektion problem also.. been to about 20 doctors here in sweden where i live and they all been saying that it is to small to ever cause pain and just send me home with pain killers.. but ive finaly met a doc thats gonna help me with this and I hope i get surgery soon
@@FlipMaczhello ! After i wrote this i got numb and paralysed from waist and down. So I ended up at the emergnecy center then send of to Uppsala here in sweden. I got surgery and now everything is even better! Years of pain is gone and im no longer paralysed :)
I have “numerous” tarlov cysts. I am seeing my first neurosurgeon in a couple weeks, I wish I lived closer to where I could see this doctor I'm in so much pain😢
When I was in my mother’s womb they told her I had spina bifida. When I came out it had apparently corrected itself. Today I have 6 Tarlov Cysts. Is there a connection between this phenomenon that you know of?
I was recently diagnosed w/ Tarlov Cyst in Sacrum and Spina Bifida Occulta (hidden). The nuero surgeon said that is why I have the cyst. She said, prior to a physical examination, she expected I have a visible birthmark in that area (I do). As a young child i had biopsies done of the birthmark 4 years. I had bladder issues and others then too.
What is the root cause of these cysts? Also is there anyway to dissolve them internally naturally? I just feel like we're not meant to have these problems something's going on with our environment or the food we're eating that's causing these types of issues.
From what I've learned so far, physical trauma and connective tissue disorders are two of the top suspects. With connective tissue disorders, (I have one myself) I believe it's due to so many parts of our bodies being more flexible/loose than people without connective tissue problems, so the nerve root covering is able to dilate more easily. On top of that it seems like higher pressure in the fluid that can fill these cysts can be more common in connective tissue disorders, so between the laxity of the tissue and the higher pressure, it expands like a balloon. It's not something that can be dissolved because it's not an extra thing on a random part of your body, it's more like having a straw made from balloon material that you push a lot of fluid through but then stop it at one end, some part of it will expand to allow more fluid in because of the extra pressure. There is nothing in any research I've found yet that's a "natural" solution (though even the definition of that can vary a lot). One thing I have seen people discuss that may be worth looking into is that keeping inflammation down might be something that helps it from progressing. I can't say for sure and would definitely recommend seeking out qualified sources for that. I also haven't come across anyone who's gotten there's to go away on their own, although I'm sure many people are trying as the prospect and cost of surgery, for example, can be overwhelming. If you want to talk to more people with these to feel less alone and get more ideas, I highly recommend checking out the FB group facebook.com/groups/cystersandmysters/
I was told my Tarlov cysts were consistent with my EDS- Ehlers Danlos syndrome. I probably spelled it wrong. (EDS can also mean estrogen depletion syndrome, so I wanted to clarify.)
why dont they call these herniations instead. i have multiple cysts in my neck and sacral area, meningeal and tarlov, you cannot wrap the meningeals cysts right? and since theyre not actually of growing tissues like a cysts, shouldnt they call the out pouchings herniations then? mine bither me tothe pointof uncontrollable pain, i feel like going after the pain is fruitless since technically youtrying to wrap a weakness in thespinal sheath isnt possible. i cannot sit,stand nor sleep, participate in anything, to the point of wishing our creator would take me home. what would you suggest to someone like myself with many cysts do to control pain, opioids are a no, an implanted spinal cord stimular alsodoesnt help either????
Y’all tell me if i’m wrong but from what i’ve read they are cysts filled with CSF fluid. The doc drains them first and then wraps the nerve so that there’s no room for the cyst to redevelop. From my understanding. Are your doctors suggesting any treatments? There are non surgical treatments available. As long as your docs aren’t dismissive
Are you saying a spinal cord stimulator does not help with your back and leg pain? My doctor has recommended the spinal cord stimulator …I am getting a second opinion, I have had a spinal cord stimulator in the past and also an neurological stimulator, they have both since been removed because they caused me so much pain. Just remember, things can get worse via surgery😢
If I had the money to visit his clinic, I Wwould be there and opt for surgury if he suggested I happen to live near Toronto Canada and currently making every effort to resolve this,.D V
Where is your Cyst located? Currently been dealing with a Tarlov cyst located in the cervical at the C7 nerve root going on 7 years. I met and visited with Dr Feigenbaum back in 2017 and had my surgery scheduled before covid messed everything up.
@@harleygates9474 i got C5 C6 and C7! Twins! I’d Fist bump but too much of that radiating arm pain haha! What did he say about the cyst and treatment and risks if you’re willing to share?
I have Tarlov cyst in my sacral area . Were I live they will not touch me with a ten feet pole . My question is how do I get my medical insurance Anthem Blue cross pathways gold plan for individuals in my area to be able to come see you for help ?
I’m not sure about your insurance question but if you call his office , they are very helpful and maybe can help you with that. I just had a phone visit with Dr Feigenbaum but as of right now, I’m not sure of the total cost of his phone visit. I don’t live anywhere near Dallas but I’m trying to figure out all these expenses because I’m considering having him do this surgery. It’s beyond me how no doctors in my area have a clue about helping . I’ve had these for years and up until now, the Drs have dismissed them as causing problems. Sorry this is long but I hope it helped some. Please consider calling his office, they are helpful .
Having several Tarlov cysts is essentially the same as having cauda Equina syndrome correct? I've been having CES symptoms for a year and an MRI just showed that I have several Tarlov cysts at the s2-s3 level
I have the same . It shows in my MRI last August 2022 and my last MRI feb 21 2023. But my doctor is not concerned. Even though I tell him all the symptoms. I don’t know what to do.
Hey, so i have a pretty extensive team of doctors at this point. I was getting completely gaslit by my first neurologist saying everything was psychological and thankkkkkfully i told another one of my doctors about it and she said: « when that happens i really want you to call the office and ask for a second opinion ». So I did, they assignmed me to a neurologist P.A. Who is an ABSOLUTE QUEEN, discovered my tarlov cysts and csf leak and is now coming through for me at every turn. Not all doctors are equal sorry y’all. Some do not care about their job, and some are super smart and very interested in their patients and their cases. Whenever you’re getting gaslit ask for a second opinion and change doctor! This is your actual life, for them it’s another day at the office. It’s hard to advocate for ourselves but we absolutely have to as we’re the only ones who will and can. You got this!!!!
I have been suffering for the last 5 years. I was finally able to get an MRI in which they provided evidence of the Tarlov cyst. My GP dismissed it and said theres no way that is causing you symptoms and there is nothing to do. I pushed and he said he gave a referal to a neurosurgen but he was really dismissive and told me my pain was the buldging disks and tried to push more meds. I'm in Ontario Canada, and I'm struggling to find someone who will listen to me and my pain.
I went through the same thing for 3 years. I finally found Dr. F's website and was shocked to see how many people go through this nonsense. I live in Colorado but called Dr.F and got the ball rolling. I flew to Dallas, had my appointment, which was incredible, flew home the same day, and waited to have my surgery a few months later. I have been pain-free and have my life back. My advice is to give his office a call.
I also live in Canada. The neurologist I saw didn't specialize in Tarlov's so dismissed me with no follow up with someone who may have knowledge.
What is the prevalence of CSF Leaks stemming from Tarlov Cysts? How many patients have Connective tissue diseases/conditions, such as Ehlers-danlos Syndromes. How do you address those instances during surgery & is there post-operative follow-ups with surgical patients to ensure that symptoms of such are being followed?
i follow
Hello dear Doctor Frank Feigenbaum, I am a family father and husband of Regina Reichel and live in Germany. My wife has Tarlov cyst. I need your help. unfortunately I can only speak German and Russian. How can I communicate with you? I need your help as soon as possible. I'm waiting for your reply. Kind regards, Pavel Reichel
You have to write to his clinic or email. And you have to have a referral. Are you aware of that?
I have a tarlov cyst on s2 and s3 and the constant pain, walking, standing, sitting sometimes is more than I can bare. This video is 2 yrs old. Is there any new information. I live in Arizona. And the only treatment is physical therapy which causes me more pain. I dont think any of the pt really understand that this is different from herniated disc which i also have and bulging disc pushing on my nerve root which i think is also the s2 and s3 nerves. I cant seem to find any relief no matter what i do. If there is anything someone can suggest i try. I would be so grateful to try anything that may give me some relief.
You sound like me. 😢
All the doctors wanted to do was injections. Expensive and not really helpful more than a day or two. I was thrown out of st. Luke's in kc when I lost bowel & bladder control. I begged for help, to no avail. It was traumatic & I already have trauma from medical issues. I just suffer until it bursts.😢
I was fortunate to have Dr. Feigenbaum do my tarlov cyst surgery last September 2022, and I can finally say that I'm FINALLY FREE OF PAIN! I was literally bedridden from the pain that caused by 6 tarlov Cysts in my sacral area! I was desperate for any kind of relief, but nothing worked! I finally found Dr. Feigenbaum when my husband said into his cellphone "doctors who treat tarlov cysts" and up came Dr Feigenbaum's video!" The next day I called his office and within weeks I was in his office for a consultation. He said I was definitely a candidate for surgery, and 4 weeks later we flew back to Dallas from Milwaukee WI for surgery! This surgery was life changing!! I can finally say that I am out of that horrible pain, and able to enjoy life, my new grandson and a lot more things!! Thank you Dr Feigenbaum for devoting your life to this horrible disease! I am forever in your debt!!
I was diagnosed by a PT to have chronic Equina Syndrome. I did not start therapy yet- that was at initial intake. I am beginning PT soon.
I have perineural cyst S2 - S4 the size of an orange, 8cm long ond about 3 cm Wide and it has eroded bones away.. constant pain in my head, back and legs, erektion problem also.. been to about 20 doctors here in sweden where i live and they all been saying that it is to small to ever cause pain and just send me home with pain killers.. but ive finaly met a doc thats gonna help me with this and I hope i get surgery soon
Any updates u can provide on your situation?
@@FlipMaczhello ! After i wrote this i got numb and paralysed from waist and down. So I ended up at the emergnecy center then send of to Uppsala here in sweden.
I got surgery and now everything is even better! Years of pain is gone and im no longer paralysed :)
@@moslypighi there!
I had surgery and my doctor did not use glue, he used fat to surround the nervs and now im even better then before :)
@@GooffyyDude the Tar lov Cysts had paralyzed you? Wow.
@@FlipMaczyeah somehow it became bigger and the doctors didnt understand either
I have “numerous” tarlov cysts. I am seeing my first neurosurgeon in a couple weeks, I wish I lived closer to where I could see this doctor I'm in so much pain😢
how did it go?
How do I contact you? I am from Ontario, Canada
You have to Google his name and get his address and email to contact. Plus you have to have a referral.
When I was in my mother’s womb they told her I had spina bifida. When I came out it had apparently corrected itself. Today I have 6 Tarlov Cysts. Is there a connection between this phenomenon that you know of?
I was recently diagnosed w/ Tarlov Cyst in Sacrum and Spina Bifida Occulta (hidden). The nuero surgeon said that is why I have the cyst. She said, prior to a physical examination, she expected I have a visible birthmark in that area (I do). As a young child i had biopsies done of the birthmark 4 years. I had bladder issues and others then too.
What is the root cause of these cysts? Also is there anyway to dissolve them internally naturally? I just feel like we're not meant to have these problems something's going on with our environment or the food we're eating that's causing these types of issues.
From what I've learned so far, physical trauma and connective tissue disorders are two of the top suspects. With connective tissue disorders, (I have one myself) I believe it's due to so many parts of our bodies being more flexible/loose than people without connective tissue problems, so the nerve root covering is able to dilate more easily. On top of that it seems like higher pressure in the fluid that can fill these cysts can be more common in connective tissue disorders, so between the laxity of the tissue and the higher pressure, it expands like a balloon. It's not something that can be dissolved because it's not an extra thing on a random part of your body, it's more like having a straw made from balloon material that you push a lot of fluid through but then stop it at one end, some part of it will expand to allow more fluid in because of the extra pressure. There is nothing in any research I've found yet that's a "natural" solution (though even the definition of that can vary a lot). One thing I have seen people discuss that may be worth looking into is that keeping inflammation down might be something that helps it from progressing. I can't say for sure and would definitely recommend seeking out qualified sources for that. I also haven't come across anyone who's gotten there's to go away on their own, although I'm sure many people are trying as the prospect and cost of surgery, for example, can be overwhelming. If you want to talk to more people with these to feel less alone and get more ideas, I highly recommend checking out the FB group facebook.com/groups/cystersandmysters/
Just realized he explained part of that similarly with the hose having a weak spot, hadn't watched most of the video yet!
I was told my Tarlov cysts were consistent with my EDS- Ehlers Danlos syndrome. I probably spelled it wrong. (EDS can also mean estrogen depletion syndrome, so I wanted to clarify.)
I have all the symptoms,i think my doctor is missing my diagnosis😢
After MPT today in my documents is written tarlov cyst s2 16mm....
So how's it going for you? My Tarlov is 10mm.
why dont they call these herniations instead. i have multiple cysts in my neck and sacral area, meningeal and tarlov, you cannot wrap the meningeals cysts right? and since theyre not actually of growing tissues like a cysts, shouldnt they call the out pouchings herniations then? mine bither me tothe pointof uncontrollable pain, i feel like going after the pain is fruitless since technically youtrying to wrap a weakness in thespinal sheath isnt possible. i cannot sit,stand nor sleep, participate in anything, to the point of wishing our creator would take me home. what would you suggest to someone like myself with many cysts do to control pain, opioids are a no, an implanted spinal cord stimular alsodoesnt help either????
Y’all tell me if i’m wrong but from what i’ve read they are cysts filled with CSF fluid. The doc drains them first and then wraps the nerve so that there’s no room for the cyst to redevelop. From my understanding.
Are your doctors suggesting any treatments? There are non surgical treatments available. As long as your docs aren’t dismissive
Are you saying a spinal cord stimulator does not help with your back and leg pain?
My doctor has recommended the spinal cord stimulator …I am getting a second opinion, I have had a spinal cord stimulator in the past and also an neurological stimulator, they have both since been removed because they caused me so much pain. Just remember, things can get worse via surgery😢
It doesn’t help to the point that I am able to control pains that linger or are strains..my scs helps control about 50+% of the pain I get.
@@girlnextdoor7012 it helps ease 50-75% from c spine to L spine for %50 of the time
@@tearose3763 how are things now?
My mother has a tarlov cyst at s2 s3 level. Now her symptoms are worst. How can I contact you?
If I had the money to visit his clinic, I Wwould be there and opt for surgury if he suggested I happen to live near Toronto Canada and currently making every effort to resolve this,.D V
Where is your Cyst located? Currently been dealing with a Tarlov cyst located in the cervical at the C7 nerve root going on 7 years. I met and visited with Dr Feigenbaum back in 2017 and had my surgery scheduled before covid messed everything up.
@@harleygates9474 i got C5 C6 and C7! Twins! I’d Fist bump but too much of that radiating arm pain haha! What did he say about the cyst and treatment and risks if you’re willing to share?
Hey I’m in Toronto as well, u want to connect?
I have Tarlov cyst in my sacral area . Were I live they will not touch me with a ten feet pole . My question is how do I get my medical insurance Anthem Blue cross pathways gold plan for individuals in my area to be able to come see you for help ?
I’m not sure about your insurance question but if you call his office , they are very helpful and maybe can help you with that. I just had a phone visit with Dr Feigenbaum but as of right now, I’m not sure of the total cost of his phone visit. I don’t live anywhere near Dallas but I’m trying to figure out all these expenses because I’m considering having him do this surgery. It’s beyond me how no doctors in my area have a clue about helping . I’ve had these for years and up until now, the Drs have dismissed them as causing problems. Sorry this is long but I hope it helped some. Please consider calling his office, they are helpful .
Having several Tarlov cysts is essentially the same as having cauda Equina syndrome correct? I've been having CES symptoms for a year and an MRI just showed that I have several Tarlov cysts at the s2-s3 level
I have the same . It shows in my MRI last August 2022 and my last MRI feb 21 2023. But my doctor is not concerned. Even though I tell him all the symptoms. I don’t know what to do.
I’m experiencing the same type of experience about the doctors saying “it shouldn’t cause pain” although it COMPLETELY does
Hey, so i have a pretty extensive team of doctors at this point. I was getting completely gaslit by my first neurologist saying everything was psychological and thankkkkkfully i told another one of my doctors about it and she said: « when that happens i really want you to call the office and ask for a second opinion ». So I did, they assignmed me to a neurologist P.A. Who is an ABSOLUTE QUEEN, discovered my tarlov cysts and csf leak and is now coming through for me at every turn.
Not all doctors are equal sorry y’all. Some do not care about their job, and some are super smart and very interested in their patients and their cases. Whenever you’re getting gaslit ask for a second opinion and change doctor! This is your actual life, for them it’s another day at the office.
It’s hard to advocate for ourselves but we absolutely have to as we’re the only ones who will and can. You got this!!!!