The procedure for stopping pain is to follow a diet free of sugars, flour, and hydrogenated oils, and to focus on herbs and nutrition that contain antioxidants, anti-inflammatory, and anti-depressant... such as ginger, turmeric, and lemon... Stay away from everything that contains sugar, flour, and fried foods.
@@xkader5891 those things can make a huge difference for a lot of people. Some people however, do all of those things and still have pain. The underlying pain generators vary greatly.
For Tarlov cyst pain, steroid injections. Too many; they caused no sleep for 3 days, and my heart felt like it was going to explode. Acupuncture felt good, but didn't last. I went into shock from anesthesia. DAVF and Intracranial Hypertension, perhaps, are contributing to adverse drug reactions?
@@bendybodiespodcastThe shock from anesthesia was in 1993. A doctor told me many years later that they probably put lidocaine in the anesthesia. My BP bottoms out with lidocaine. I have a lot of adverse drug reactions. DAVF: brain dural arteriovenous fistula.
I am super thankful for the timing of this episode! I wish that the connection between Tarlov cysts and tethered cord syndrome would have come up, but this is still extremely useful. I've been dealing with lumbar back pain for many years but about 4 years ago it went from annoying to life altering. It is this pain, coupled with several other complications, that finally took me over the edge where I could no longer just avoid doctors and "push through" anymore and set off my serious health diagnostic journey. Now with hEDS, POTS, MCAS, and many more diagnoses confirmed, I still haven't nailed down the diagnostic cause for the lumbar pain, sciatica, pelvic dysfunction, and leg numbness and burning (also intercranial pressure headaches, occipital skull/upper cervical stretching pain). I have already seen 1 spinal surgeon that told me that nothing looked "too problematic" but that I definitely have spinal arthritis with calcification, minor spinal stenosis, degenerative disc disease with narrowed and slightly bulged discs. I asked about possible tethered cord or complications of stenosis being more severe due to the hypermobility and was told that they didn't have the expertise to address these issues. I'm seeing another spinal neurosurgeon later this week for a 2nd opinion. While going over the paperwork I received from the first doctor, I see a note on my MRIs that states there were several Tarlov or meningeal cysts observed, despite no mention of these during my visits with the first doctor. This will definitely be something I can now follow up on and ask about. Thank you Dr. Bluestein and Dr. Feigenbaum!
Great video. Shared. Thank you! I have a 1.5 to 2cm Tarlov cyst at S2 that traverses S3, Intracranial Hypertension, tentorial dAVF w/cortical venous drainage, herniated cervical, thoracic, & lumbar discs, 3 TIA's, and a stroke at age 37. I have advocated for Tarlov cyst patients for almost 2 decades. Radiologists need to stop trivializing and dismissing Tarlov cysts! Thankfully, a radiologist in Ohio mentioned it in an MRI. I began researching my symptoms, and spoke to Reta Honey Heirs, a nurse, advocate, and Godsend for Tarlov cyst patients.
I am so sorry you have gone through all that. I spoke with Reta before my own Tarlov cyst surgery and agree - she was tremendously helpful. If you are still in touch with her, please tell her how grateful I am for her incredible work in this space. I greatly appreciate your comment. Please share with anyone you think might find this helpful. So many people suffer needlessly from Tarlov cysts. It is awful!!!🤯😱🤬
I had pain in my back/hip/leg for two yrs. Had multiple mris and multiple drs and not one of them mentioned tarlov cysts. One of them pulled up my mri and I saw something that looked like a big peanut in m sacral area. He said it’s a tarlov cyst but they’re asymptomatic. Also had another dr tell me that there are no nervous down there. I started my own research and came upon Dr Feigenbaum. After watching some patient testimonials that sounded like my story, I told my whole I knew what was wrong and we’re going to Dallas! I had the surgery in 2015 and I’m feeling great!!
Wow! Thank you so much for sharing your story as that will certainly resonate with others! 🤗 It is so frustrating that the "Tarlov cysts are asymptomatic" narrative persists🤯👀😱🤬🤬🤬🤬
THANK YOU THANK YOU THANK YOU. This podcast has answered so many of my questions and validated my physical symptoms. My recent MRI shows an expansive TC that has grown since the first MRI, 5 years ago. However, as noted by Dr. Feignbaum and you, it was noticed but not included in the report,
Wow I had no idea you had a tarlov cyst! I rarely see kt discussed in the EDS community online so im really glad you decided to talk about it, especially with one of the top surgeons. It turned out I had tethered cord as well and Dr. Schrot was able to treat both which was fantastic. I only found out about the tarlov cyst after I finally convinced my neurologist to at least refer me to get a lower lumbar/sacral MRI to check for tethered cord which is wild because he had already written me off before then and even after seeing the imaging, dismissed the results but also had no other ideas for what my urinary, neurological, and other symptoms could be despite it being fairly textbook for tethered cord and/or a sacral tarlov cyst. 🤦🏻
Thank you so much for your comment. It is so appreciated. Did you need to have a prone MRI to show that your filum did not move or was your supine MRI definitive enough? Diagnosing tethered cord can be so difficult and I plan to do an entire episode on that.
@@bendybodiespodcast I actually had a prone and supine MRI done to compare and movement was noted as 29%, and anything over 25% they consider negative for tethered cord so they basically said it didn't indicate tethered cord. Luckily the tarlov cyst showed up and they decided to note it (although they did say "likely incidental" despite the radiologist knowing my symptoms before review). In the end my (likely) tethering was tethering of the extradural filum terminale. Because of the several instant improvements I had after surgery like being able to straighten my back finally and my toes not being stuck curled in under themselves anymore, that seems to indicate that the release Dr. Schrot said had a clear impact and he suspected it was effectively tethered cord as well based on what he saw and my changes after surgery.
This is the first time that my MRI of lumbar spine reported the presence of a " mild perineural cyst.". Aka a tarlov cyst...sigh. I guess it has been present.but not mentioned. I have been experiencing CSF leak s/SX for the past over three years and have felt like I've been relegated to hell. I have been told I do not have a leak.even though the only imaging that showed a leak was a cisternogram that showed contrast fluid outside the thecal sac.. all other CT scans, MRI's did not show a leak. Brain scans did not show leak sequelae. I had given up as the neurosurgeon I saw, insisted the cisternogram imaging was an anomaly... However just continuing to live with the s/sx of a CSF leak as I mentioned is hell.so....I asked my PCP to reach out to Dr. Andrew Callen and I will see him at the beginning of December. Thank God
When I was in my early 20's I had a cyst on my lower left side of my spine. It was big enough to see and it was causing me sciatica pain. This was 30 years ago. My family doctor wanted to drain it in his office. I was too afraid to let him do it because it was on my spine. So I left and just dealt with the pain. Eventually it went down on its own. Now 30 years later I'm finally diagnosed with Ehlers Danlos. This is just one of the many weird things that I have gone through that I can point to eds.
Hi! I would just like to know how much would it cost to undergo surgery for 2 tarlov cysts? Please reply so I can prepare myself financially. Thank you so much. Be blessed. 🙏🏻
@ There are patients in countries around the world who cannot afford treatment, and their countries have a flagrant shortage of medicines and health care... Humanitarian work is a feature of honorable doctors.
Now my oelvic pain started hellish at 17 severe anal pain then cfs diagnosed at 43 heds diagnosed fybromyalgia autism adhd list my mum to severe ms heds obvously autism to realy is poor quality health care for us gives us PTSD
Have you had a pain block procedure in the past?
The procedure for stopping pain is to follow a diet free of sugars, flour, and hydrogenated oils, and to focus on herbs and nutrition that contain antioxidants, anti-inflammatory, and anti-depressant... such as ginger, turmeric, and lemon... Stay away from everything that contains sugar, flour, and fried foods.
@@xkader5891 those things can make a huge difference for a lot of people. Some people however, do all of those things and still have pain. The underlying pain generators vary greatly.
For Tarlov cyst pain, steroid injections. Too many; they caused no sleep for 3 days, and my heart felt like it was going to explode.
Acupuncture felt good, but didn't last.
I went into shock from anesthesia.
DAVF and Intracranial Hypertension, perhaps, are contributing to adverse drug reactions?
Shock from what kind of anesthesia? DAVF?
@@bendybodiespodcastThe shock from anesthesia was in 1993.
A doctor told me many years later that they probably put lidocaine in the anesthesia. My BP bottoms out with lidocaine. I have a lot of adverse drug reactions.
DAVF: brain dural arteriovenous fistula.
I am super thankful for the timing of this episode! I wish that the connection between Tarlov cysts and tethered cord syndrome would have come up, but this is still extremely useful. I've been dealing with lumbar back pain for many years but about 4 years ago it went from annoying to life altering. It is this pain, coupled with several other complications, that finally took me over the edge where I could no longer just avoid doctors and "push through" anymore and set off my serious health diagnostic journey. Now with hEDS, POTS, MCAS, and many more diagnoses confirmed, I still haven't nailed down the diagnostic cause for the lumbar pain, sciatica, pelvic dysfunction, and leg numbness and burning (also intercranial pressure headaches, occipital skull/upper cervical stretching pain). I have already seen 1 spinal surgeon that told me that nothing looked "too problematic" but that I definitely have spinal arthritis with calcification, minor spinal stenosis, degenerative disc disease with narrowed and slightly bulged discs. I asked about possible tethered cord or complications of stenosis being more severe due to the hypermobility and was told that they didn't have the expertise to address these issues. I'm seeing another spinal neurosurgeon later this week for a 2nd opinion. While going over the paperwork I received from the first doctor, I see a note on my MRIs that states there were several Tarlov or meningeal cysts observed, despite no mention of these during my visits with the first doctor. This will definitely be something I can now follow up on and ask about. Thank you Dr. Bluestein and Dr. Feigenbaum!
You are most welcome. It is beyond frustrating that radiologists do not comment on Tarlov cysts!!!! 😱🤯👀🦓
Great video. Shared. Thank you!
I have a 1.5 to 2cm Tarlov cyst at S2 that traverses S3, Intracranial Hypertension, tentorial dAVF w/cortical venous drainage, herniated cervical, thoracic, & lumbar discs, 3 TIA's, and a stroke at age 37.
I have advocated for Tarlov cyst patients for almost 2 decades.
Radiologists need to stop trivializing and dismissing Tarlov cysts!
Thankfully, a radiologist in Ohio mentioned it in an MRI. I began researching my symptoms, and spoke to Reta Honey Heirs, a nurse, advocate, and Godsend for Tarlov cyst patients.
I am so sorry you have gone through all that. I spoke with Reta before my own Tarlov cyst surgery and agree - she was tremendously helpful. If you are still in touch with her, please tell her how grateful I am for her incredible work in this space. I greatly appreciate your comment. Please share with anyone you think might find this helpful. So many people suffer needlessly from Tarlov cysts. It is awful!!!🤯😱🤬
I had pain in my back/hip/leg for two yrs. Had multiple mris and multiple drs and not one of them mentioned tarlov cysts. One of them pulled up my mri and I saw something that looked like a big peanut in m sacral area. He said it’s a tarlov cyst but they’re asymptomatic. Also had another dr tell me that there are no nervous down there. I started my own research and came upon Dr Feigenbaum. After watching some patient testimonials that sounded like my story, I told my whole I knew what was wrong and we’re going to Dallas! I had the surgery in 2015 and I’m feeling great!!
Wow! Thank you so much for sharing your story as that will certainly resonate with others! 🤗 It is so frustrating that the "Tarlov cysts are asymptomatic" narrative persists🤯👀😱🤬🤬🤬🤬
What were your symptoms
THANK YOU THANK YOU THANK YOU. This podcast has answered so many of my questions and validated my physical symptoms. My recent MRI shows an expansive TC that has grown since the first MRI, 5 years ago. However, as noted by Dr. Feignbaum and you, it was noticed but not included in the report,
UGH!!!! That makes my blood boil!! Why the h..l would they NOT include it???? Radiologists should not be excluding things from their reports!😱🤯👀
Wow I had no idea you had a tarlov cyst! I rarely see kt discussed in the EDS community online so im really glad you decided to talk about it, especially with one of the top surgeons.
It turned out I had tethered cord as well and Dr. Schrot was able to treat both which was fantastic. I only found out about the tarlov cyst after I finally convinced my neurologist to at least refer me to get a lower lumbar/sacral MRI to check for tethered cord which is wild because he had already written me off before then and even after seeing the imaging, dismissed the results but also had no other ideas for what my urinary, neurological, and other symptoms could be despite it being fairly textbook for tethered cord and/or a sacral tarlov cyst. 🤦🏻
Thank you so much for your comment. It is so appreciated. Did you need to have a prone MRI to show that your filum did not move or was your supine MRI definitive enough? Diagnosing tethered cord can be so difficult and I plan to do an entire episode on that.
@@bendybodiespodcast I actually had a prone and supine MRI done to compare and movement was noted as 29%, and anything over 25% they consider negative for tethered cord so they basically said it didn't indicate tethered cord.
Luckily the tarlov cyst showed up and they decided to note it (although they did say "likely incidental" despite the radiologist knowing my symptoms before review).
In the end my (likely) tethering was tethering of the extradural filum terminale. Because of the several instant improvements I had after surgery like being able to straighten my back finally and my toes not being stuck curled in under themselves anymore, that seems to indicate that the release Dr. Schrot said had a clear impact and he suspected it was effectively tethered cord as well based on what he saw and my changes after surgery.
Wow! Thank you so much for sharing all of that! Your prone / supine MRI findings are super interesting!!
Can you recommend any neurosurgeons that are as brilliant as Dr Feigenbaum in Missouri?
Unfortunately, I do not know of anyone to recommend. Sorry I can't be more helpful. I hope you found the episode helpful!
This is the first time that my MRI of lumbar spine reported the presence of a " mild perineural cyst.". Aka a tarlov cyst...sigh. I guess it has been present.but not mentioned. I have been experiencing CSF leak s/SX for the past over three years and have felt like I've been relegated to hell. I have been told I do not have a leak.even though the only imaging that showed a leak was a cisternogram that showed contrast fluid outside the thecal sac.. all other CT scans, MRI's did not show a leak. Brain scans did not show leak sequelae. I had given up as the neurosurgeon I saw, insisted the cisternogram imaging was an anomaly... However just continuing to live with the s/sx of a CSF leak as I mentioned is hell.so....I asked my PCP to reach out to Dr. Andrew Callen and I will see him at the beginning of December. Thank God
I hope you found the episode helpful!
I have hEDS and have a tarlov in my cervical spine but have not had my S MRI now I am wondering if I should get my Pelvis or S MRI
I order imaging for my patients when it will change management.
When I was in my early 20's I had a cyst on my lower left side of my spine. It was big enough to see and it was causing me sciatica pain. This was 30 years ago. My family doctor wanted to drain it in his office. I was too afraid to let him do it because it was on my spine. So I left and just dealt with the pain. Eventually it went down on its own. Now 30 years later I'm finally diagnosed with Ehlers Danlos. This is just one of the many weird things that I have gone through that I can point to eds.
Drain it is his office??? Yikes! Who diagnosed your Ehlers-Danlos Syndrome?
Hi! I would just like to know how much would it cost to undergo surgery for 2 tarlov cysts? Please reply so I can prepare myself financially. Thank you so much. Be blessed. 🙏🏻
That is a question that only the surgical team can answer. Sorry I cannot be more helpful.
Can a doctor perform surgery to remove Tarlov cysts within the framework of MSF?
MSF?
@ Doctors Without Borders
@ There are patients in countries around the world who cannot afford treatment, and their countries have a flagrant shortage of medicines and health care... Humanitarian work is a feature of honorable doctors.
@@xkader5891 agree. I don't know if there are any options under programs like these.
Are foraminal perineral cysts the same as Tarlov cysts?
Tarlov cysts and perineural cysts are the same and some of them are foraminal. I hope that helps. Have you listened to any other episodes?
@ not yet but I will.
@@takeya2224 awesome and I hope you find them helpful!
I got arachnoiditis years after my meningeal cyst. Surgery. The cyst has to be inside and outside the spinal canal to get arachnoiditis.
Have you found any treatments that help the arachnoiditis?
@@bendybodiespodcast no . Can’t fine a dr
@@joellabrie-ki9bk I am so sorry and you are not alone. There are some helpful non profit groups online.
Now my oelvic pain started hellish at 17 severe anal pain then cfs diagnosed at 43 heds diagnosed fybromyalgia autism adhd list my mum to severe ms heds obvously autism to realy is poor quality health care for us gives us PTSD