Dr. Frank Feigenbaum discusses Tarlov Cysts

[@frenchietribe3456]

CANADA!!! get on BOARD!!! Dr. F..please come here to educate the doctors. we are suffering!!! We need a Doctor (or twelve :)) as tenacious as you Dr. F..Bless.

[@foxfur8327]

Why are Canadian doctors so many decades behind in medicine? Their pstients are being tortured and radiated to death but nothing is ever done. Yes, please teach at Canadian universities. This is an excruciatingly painful disease and very crippling and the only thing hospitals can ever do is put them on opoids until they are incontinent for life, have developed Altzheimers, or are dead!

[@jewelzsun15]

woohooo. Great to see Dr Feigenbaum with this video. I have shared it already. I am a sufferer and had surgery February 11, 2013. I am pain free for the first time in 8 months.

[@oussamaboumhaout3619]

still pain free ?

[@oussamaboumhaout3619]

Did it ever reoccur ?

[@donpitts2388]

It was the end of March of 2019 I had tarlov surgery done in Dallas. I couldn't be more pleased with the results given. Still have a little bowel and bladder issues but they've gotton better..I'll take that over the pain I was in. Dr. Feigenbaum did a wonderful job.. I know.. I know... I need to send my f/u yearly paper work in.. I'll get it to ya. Lol I can sit and stand again for longer periods of time..Thank your team and hope I wasn't to much of a pain during my stay at pine creek. Moving afterwards hurt a bit but felt better feeling stronger back there..I'm so glad I don't have that throbbing pain back there anymore. Hard to describe but you won't be sorry you had this done. I'm not. No sir.. 😀👍👍's for you Dr. Feigenbaum

[@tarlovcyster7150]

Thank you for giving me this life back! Without your bravery and surgical excellence I would not be able to be doing all I am to help to educate and support other people impacted by this disease!

[@lindabrincken1677]

What is the good machine to see tarlov cyst. MRI with/without contrast or CT Scan ?

[@FunnyLaughsss]

I had this surgery in May 2012. Dr F saved my life!! God bless you Dr F. Betsy from Kentucky!!

[@lindabrincken1677]

What is the best to see the Tarlov cyst (MRI with or without Contrast or CT SCAN ?

[@leslieshirkey8376]

They are both good.. ct may be better for the full look

[@juliefield8646]

Just an update that I am 100% now after receiving surgery for 5 Tarlov Cysts at S1,S2 and S3 with Dr Feigenbaum at AIMIS. I turned the corner 18 months post op where any activity I did, there were no after effects. It feels like I never suffered or had surgery. Surgery is just one step to recovery.

[@janinegroman4639]

Hi Julie, I have an appointment with Dr. Feigenbaum in 2 weeks for TC cysts at s2 and s3. So relieved to here you are feeling 100%. Were you prepared the recovery would take so long? If you don't mind me asking?

[@ealingerieusa123]

Hi Julie. I had surgery 5 weeks ago and the pain increase with most activities. It's very frustrating but expected. When did you started to feel better?

[@yuseyusie]

Liliana Gomez I would like to know if you are fully recovered? Feel no pain at all?

[@ealingerieusa123]

I have a back pain on the sacrum area going down my right leg, I was initially diagnosed with a bulge disk between L4-L5, I went to physical therapy for almost a year with no improvement, I also did cortisone and epidurial injection with very little improvement. I went to visit a neurologist in Miami who told me I have a 2.5cm tarlov cyst on the right side of the sacrum, since then i started doing a lot of research online since most doctors don't have a lot of knowledge on how to treat this condition. I have an appointment with Dr Feigenbaum next month, hoping he can take this pain away so I can resume to my normal life. I used to have a very active lifestyle at the gym and due to the pain i had to stop everything. I am happy to see that Dr Feigenbaum has a lot of great reviews and that there's hope to get better. I am looking forward to meet him and I will keep you posted with the outcome.

[@mary3553]

Dr. Feigenbaum, bless you for going down this path for your patients. I suffer terribly from two communicating Tarlov cysts that Doctors have refused to touch claiming that it is too risky. I will be checking my insurance and other options to find out how quickly I can have a consultation. Today I feel hope again... if not for me... for all those that are able to receive your help. Thank you

[@marye1596]

Dr. Feigenbaum you did my second surgery in 2007... at the time I only had 4 TC's bilaterally. I this month had another MRI of my thoracic spine because of relentless pain.. I now have 20 TC's in my spine, I am at the end of my rope, so fed up with uneducated Dr's telling me these things don't cause pain.... that I want to scream. 😥😢😢

[@TheCarmenrae]

I was just diagnosed and all they want to do is pain meds. They don't help! The headaches are terrible, the dizziness, back and hip pain, not to mention always running to the bathroom for fear I won't make it. Trying to find a doc in Maryland that will fix this!! Thank you for this video...it has made me feel less crazy! :)

[@gfacademico]

I have Tarlov Cyst (34 mm). In Brazil it's very difficult to get medical treatment (Fernando, 29 years)

[@awesomeamanda5267]

Have a cyst in my c6.. Causing a lot of problems.. Dizziness/vertigo pain, congnative problems.. Where are you located?

[@dianamccabe5871]

I have had terrible pelvic area pain on and off for 20 years .I kept going to the gyn and even had a hysterectomy which did not help. The pain would come and go but now it is all the time. Recently an MRI showed I have Tarlov Cysts .Dr, sent me to a spinal neurosurgeon who tells me it is impossible that tarlov cysts can be the cause of my pain as they are asymptomatic. What do I do now ? Its ruining my life .

[@MiC-T]

4 1/2 years of misdiagnosises, epidurals, pain meds, and most of all pain and they finally discover a Tarlov cyst. I will be contacting you! Mine is only 8mm but it seems like it's in the perfect location to cause maximum pain. Finally I have hope.

[@gorditaangel]

I have been in horrific pain since I was 11 years old! Iam now 51 and the pain is too unbearable

[@trishag8281]

Oh wow I’ll be calling you ASAP! My doctor didn’t find mine I found it because I’ve been asking for all these tests to be done and I found it not my neurosurgeon!

[@juliabensonreazin7672]

I have a large tarlov cyst seen in an MRI and my doctor blew it off and tells me that they are all non-symptomatic. My doc says I have back and leg issues are because my L4 and L5 are bugled and I just need physical therapy. So, I can't even get a referral to a neurologist to have the damn thing removed.

[@gwennordstrom5404]

Julia, Did you get the surgery??

[@aysebetulhoward9179]

I m in US, i will probably call the hospital soon too.. So painful.

[@carolcasser4746]

I have just been diagnosed with multiple tarlov cysts, 1 being 1.8cm in diameter. I have called and left 2 messages with Dr. Feigenbaum's office. How long does it usually take to get a response???

[@howardcohen6817]

Greetings Dr. Feigenbaum and team, My friend, living in West Virginia, has been diagnosed through MRI imaging with having many Tarlov Cysts. The largest ones are bilateral and located by T10 and T11. He's had a history of Hyperventilation and Panic and I was just wondering if these cysts might have been the culprit in this. Now they are just extremely painful, as you can imagine. This Tarlov Cyst sufferer is a maker of fine flutes and is 65 years old. He's had to vacate his position at the Symphony in which he's played for many years. He had been the piccolo-player with the Metropolitan Orchestra of New York in the late 70s and early 80s. We'd be interested in learning how long-lasting the sealing process of your preferred surgery has been. Have there been reports of recurrence? Thank you for your time and interest. Musically yours, Howard A. Cohen.

[@Stacey505]

He is a miracle Dr I'm still waiting to get ssdi so I can have my surgery this is a painful disease the Dr. Found my cysts in 07' they told me not to worry about them slowly this disease snuck upon me took my social life away the cysts have started to erode my sacrum bone & nerves in my spine away & my pelvis is full of them I'll need 2 surgeries.

[@wendywall6752]

I have just been diagnosed with perineural cysts on my left C7 foramen and two cysts on my left and right C8 nerve root foramen. I suffer from left radiculopathy, paraesthesia left 4th and 5th fingers and now left palm and down the up my left arm. I have been told that nothing will be done about this and that I need to learn to manage any pain. Happy new year.....

[@leslieshirkey8376]

Really? They are never heard outside the spine

[@irish7656]

Awesome video ! Looking forward to seeing you

[@misskurmis]

I'm located in Canada. How do I even find out if I have a cyst or cysts. I definitely think I do. What's the first step before I'd need your help?

[@photostockcanada]

Where do you live I got diagnosed in Whistler BC.

[@junlu5758]

Hello doctor, is there a new way to seal the leak of cyst now?

[@FatehParminder]

Hi doctor what is the cost of the surgery? my younger brother, he is just 20 years old. He has 10mm tarlov cyst.

[@saved43074]

I was diagnosed with having a sacral cyst three years ago... have lost reflex in my left leg. my problem is I am low income no insurance and have been dealing with the discomfort for years. I thank God daily that he keeps me strong "enough"... emotionally and physically drained.. I am currently going to a charity medical treatment center here in Louisiana but treatment is very slow progress. if you can point me in a clearer direction it would be greatly appreciated. thanks

[@deviananta7055]

Dr. Feigenbaum I have bilateral diverticulum from T7 to T11 or T12 with a recurring leak at T9. Of all the tests and mri's and CT myelogram, my sacral area was missed and I have been having ongoing pain in this area that is now almost constant at times with brief periods of relief. I will ask for an MRI of my sacrum as soon as I have insurance. Are diverticulum the same as Tarlov cysts?

[@soul76can]

I have had 2 Tarlov cysts in my cervical spine since I had imaging done in 2020. I do not have any symptoms. Is it safe to work out at the gym?

[@jacquihodson9536]

Dr Faigenbaum am sure you would love a trip to New Zealand. Please come and educate our Doctors. I have two Tarlov cysts which I have been told my pain is in my head. They are getting worse and my pain is increasing.

[@jodakito30]

i also am in New Zealand Jacqui and ive recently had spinal fusion 4months ago with no relief from this extreme pain ive endured for 15 months as they left the Tarlov Cyst and are now just brushing me off , im desperate ! How do you cope ?

[@foxfur8327]

@@jodakito30 Most will develop cauda equina syndrome because most neurosurgeons won't do spinal surgery. They will simply put patients on opoids or pain killers for the rest of their lives.

[@buffyvampire7814]

i have tarlov cyst disease and pain is real bad. I've missed out on so much with my kids and always having to stay home. i had surgery on one cyst but now i have nerve damage on that side. i have one on left and inside my spinal cord. I've had 3 mylograms already and they r very painful. but the way u explain how u do it isn't how my surgeon did mine witch i think caused more damage. i wish i could come see u as ur offices r too far. id like my life back to. i use to be athletic. but now I'm stuck in bed most days.

[@buffyvampire7814]

i also have bowel and bladder issues

[@georgewibawawan1818]

Hi does spine anesthesia could cause Tarlov Cyst to grow or worsen? Should I avoid Spine Anesthesia?

[@Omni-Blast]

I was in a car accident, a teenager ran a red light and t-boned my car. Since that occurrence, the pain I'm in daily is a living hell and it’s only got progressively worse as time has gone on. I had an MRI done and it was found I have numerous Tarlov cysts (too many to even count) at multiple levels up and down my spine. Is that normal? From other stories I've read, people may have 1 cyst or 2 to 3 max that they get surgery for, but I have some many going from my lumbar section, all around my hip bone, up through my spine at so many levels, where would a doctor even start with that? Plus, over the last couple of years, my pain and symptoms have got progressively worse and I can't find a doctor that understands anything about Tarlov Cysts. Through my research I’ve found most people don’t even know they have them until a traumatic injury occurs, queue the car accident I was in because it all started after that moment in time. It's getting to the point of affecting my walking, not only do I have back pain that just won’t quit, I can lose my footing (left foot only) because of nerve pain shooting through my left leg and losing control of it, so I'm prone to fall because of it. Then, I''ll get pins and needles feeling in my left foot only. I feel an almost constant pressure in certain areas of my back as if someone is pressing on my back. There will also be a painful ache and almost a dull sensation at the same time if that makes sense. I’ll have sharp nerve pain, very brief, that can shoot down my back and into my left leg, and sometimes it shoots up into my left shoulder. Almost like I just got a real quick electrical shock to a particular area. Then I'll have the peristent, just won't quit pain that hangs around all the time. So, if I'm sitting I'll need to stand, if I'm standing too long, I'll need so sit.The cycle just repeats. The simplest things like cooking dinner are hard and they never used to be. This is my life now and I’ve been dealing with chronic pain for about 2 years and just grinning and bearing it as each day goes on. It’s hard to go from a very active person that exercise 2-3 times a week, to nothing because it hurts too much. If I try to explain to a doctor, they just don’t know what to say and tell me to find another doctor because they have no idea how to approach the cysts. It’s so frustrating because I just want some semblance of normalcy back in my life. I also have a herniated disc encroaching on a nerve root, so that just adds to everything. My last MRI was 2 years ago and I’m trying to get a new MRI to see how much the cysts have changed. I fear the worst because of how progressively worse everything has got in the last couple of years, so I feel like they’ve just gotten bigger. There are areas of my back and pelvic area that didn’t bother as much 2 years ago that are really bad now, so I know in my heart there have been changes. I’ve already been told I have multiple large ones, so I can’t even imagine what they look like 2 years later. I haven’t been treated for any of this at all, again, I just grin and bare it. You can be holding a conversation with me and never suspect I’m in pain because I’ve become so used to hiding it, I'm screaming on the inside. When I fall, I try not to even tell anyone. This can’t be it, there has to be something that can be done to improve my quality of life. The one thing I do know is the symptoms I experienced two years ago are not the same symptoms I'm experiencing today. While my lower back and hip bone area both hurt me like no other, there are parts of my back that didn't bother me at all 2 years ago and do today. I just want to enjoy life and not constantly be thinking about the pain I'm in. Anyone with similar experiences of having numerous Tarlov Cysts at multiple levels?

[@katja1268]

Hi! I had 6 Tarlov Cysts which were treated by Dr. Feigenbaum March 2018. If you have any questions you can email me at [e-mail] :)

[@foxfur8327]

I have about 50 cysts, starting at tailbone, going into intestines, groin, all the way from tailbone to thoracic, and more, some up to one inch and excruciating but doctors tell everyone they don't hurt because they haven't had them themselves. They don't know a thing so patients won't get any treatment but opoids. I take Alleve instead which lessens pain a tiny bit only. It is very severe and I now have permanent urinary and bowel incontinance. Often feel head pressure too, and as if a very severe infection is in spinal fluid. Have neck cysts as well. Feels like when you fall and badly skin your knees, (raw inside) and never goes away. Was extremely upset when told I had no pinched nerves when every nerve feels it is on fire, so like the rest if these patients am bed ridden most of the day. Can't even sit up for long. This happened a few months after a sebaceous spinal cyst near bottom of spine exploded because I couldn't get surgery in time. It is now growing huge again and I fear the second explosion will kill me right off.

[@SharonGillece]

Hi ya Dr F, I have shared your video in the support groups and blogs, Sharon Gillece

[@JaniceWithTheTarlovCysts]

I was misdiagnosed for years. I was sent for physio which made it worse, was told I needed to lose weight, had a microdiscectomy done on L4/L5 & was told that was all that could be done for me. 3 Neurosurgeons told me my pain is not related to TCD. I am so frustrated and at the end of my rope. The pain meds (175 mcg fentanyl patches & oxycocet for breakthrough pain) no longer help my suffering. They said TCD does not cause symptoms and the finding of my Cyst was just an accident.

[@photostockcanada]

I kept saying I couldn't sit, and just got a strange look in return from my doctors. Couldn't bend couldn't walk, bad pain in the hip all the time. Nothing showed up until I got a CT scan which showed bilateral convergent tarlov cysts.

[@edilmajimenez2936]

I have Tarlov’s cysts at the different levels of the cervical and thoracic regions, some are 25mm of diameter causing all symptoms outlined below. My neurologist D , has assured that the symptoms below are not caused by the Tarlov cysts: Pain in the chest, upper back, neck, left arm and hand. Pain in the heart, and difficulty to breath. Tinnitus/Ear noises (ringing, buzzing, snapping, popping, cricket sounds, etc.) Dizziness and feeling of loss of balance or equilibrium, especially with change of position Left part of the face and head numb Soreness, a feeling of pressure and tenderness over left side of my back. Pulling and burning sensation in the left side of my back. ◾Loss of sensation on the skin left side Dr. Jimenez Hakim punctured the largest cyst (25mm) behind the heart, and it filled up immediately again with spinal fluid. His conclusion, as I understood, is that because it filled up immediately, the symptoms I have, as his opinion, pains are not caused by the Tarlov cysts. Do you know if there is a Tarlov clinic here in Atlanta where I live?

[@emilyertz9205]

It sounds to me like you do have systematic Tarlov Cysts and need to send your MRI to neurosurgeon that understands Tarlov Cysts and how debilitating and painful they can be, I have a large Tarlov Cyst at T1 & T2 that has made me at the age of 26 disabled. This is dismissed by many Dr.'s because the lack of knowledge and because it is such a rare disease. I would suggest Dr.Fiegenbaum, Frank he us one of the leading neurosurgeons in this field. He is located in Dallas TX and you can just send him your MRI he will look at it and your symptoms and call you to determine if you are having systematic Tarlov Cysts and if he can help by surgery if that is something you are willing to do. I did have surgery with Dr.Fiegenbaum because this disease can be life altering and make you become bed ridden and in excruciating pain everyday. Just Google his name and it will give you his info, also I would suggest visiting Tarlovcystfoundation.org .

[@bluelopez7295]

Esta enfermedad me está destrullendo mi vida. y es difícil encontrar que ese Doctor lo atienda a uno por no tener la aseguranza adecuada..Ni en Market place se encuentra.😢

[@horseingaroundcook]

I have tarlov cyst S2,3 blurred vision , sounds in ears, pain in butt goes down my leg and around to front of my groin , some bowel disjunction. I’m also Canadian from Ontario not receiving any help waiting 1 year so far for a referral to a neurologist? I’m not sure who I should be seeing for this ,help

[@katja1268]

Hey there, I would recommend contacting the Tarlov Cyst Foundation: www.tarlovcystfoundation.org. They were extremely helpful, and I had surgery on my 6 Tarlov Cysts March 2018 with Dr. Feigenbaum. I'd be happy to give my email if you have any questions:)

[@lindsayprice8411]

Omg... your the 1st I read that has my exact symptoms and it’s awful. I believe it’s a neurosurgeon that we need . Pls read my comment above and email me at [e-mail]. I hope today is one of those rare “good days”!

[@suelymartinelli4736]

tadrus no português p favor

[@juneruiz684]

cindy c how much does this surgery cost

[@fierceone7808]

I will soon reach out to you...just diagnosed with TC in sacrum ( MRI scan). I have been dealing with this pain for 3 years and now know the cause. Hope you can help me.

[@lauriecain9613]

Dr Frank, what are the most common complications from this surgery. I have TC S1-S2 level one symp., one asymp. Compressed nerve rt to rt. I have also had a lumbar fusion L5-S1 in 1990= no hardware. Thanks!

[@JaniceWithTheTarlovCysts]

I am so happy for you! Perhaps that will be me some day!

[@ChloeCalorie]

Thanks for the education much needed

[@timsilver100]

whats the approximate cost of this surgery?

[@horseingaroundcook]

tim silver did you receive info on cost I’m from Canada ontario and we have a few doctors studying tarlov cysts but no treatment yet need info

[@lalithasrivalli1730]

Sir,how long does a patient be able to survive tarlov cyst? I mean lifespan.

[@marye1596]

I have had this disease for 19 years, it's not terminal but it is painful to live with. 😢

[@JaniceWithTheTarlovCysts]

Dr. Feigenbaum, you are my last hope. I am getting my passport soon and will be printing off all the paperwork and sending them in, along with all the MRI's that have been done over the past 3 years. I just need to find out how to get Ontario Health Insurance Plan to pay for this surgery!

[@ysabetcarranzagonzales3171]

Por mas de 5 años tenia dolor en los pies y cintura muchas noches sin poder dormir... recién 2018 un neurólogo me pidió una resonancia magnética y salio que tengo un quiste de tarlov. Pero en Lima ningún neurocirujano me da una solución. TT

[@lindsayprice8411]

I have several disc problems, tears, but I’m 110% sure the Tarlov cyst is what’s got me losing my mind with zero quality of life!! It’s 1.7Cm by 1.5Cm, causes extreme pain in groin, pelvis, lowest lumbar/sacrum, hips, and legs. (I even had a hysterectomy thinking that might be the problem). But finally MRI revealed it all... I just don’t know what to do now. Dr referred my to a neurosurgeon here in FW Tx. But this seams like a complicated surgery, not just anyone can do! I really want this Dr! I’m 36, a single mom, & scared to death. Any help &/or guidance is greatly appreciated! Thanks in advance.

[@lindsayprice8411]

Update... latest MRI shows it’s now 2 TC’s, instead of 1. And grew, now measuring 2cm by 1.9cm!! Zero quality of life... & I’m scared! 😭 local neurosurgeon was nice enough, but doesn’t want the liability of TC’s...and in my opinion not educated enough on them either. All I want is to meet with this amazing DR. F.. he’s what gives my an ounce of hope❣️ Good luck & take care, to all!!

[@paola6812]

@@lindsayprice8411 update? how are you feeling now

[@JaniceWithTheTarlovCysts]

Can't find my MRI, my new physician will not send me for another. I have to find a way to get this done so I can some day have Dr. Feigenbaum perform my surgery. Each day is a struggle, and now that I live alone I am finding it hard to do the stairs, so I basically live in my bedroom. I am on a waiting list for a "special needs" unit, which really is just a 1 bedroom apartment with an elevator and it has been 4 years now and nothing has come up.

[@hesnacetin4219]

Merhaba bendede en büyüğü 2 cm olan 6 tane tarlov kisti var.Gereksiz birçok ameliyat gecirdim ağrılar sebebiyle ama Türkiye'deki doktorlar ameliyat olursam felç kalabileceğimi söylüyor.Ama benim ağrılarım dayanilmaz ve 15 yıldır var olan ağrılarım . Çözüm bulmak istiyorum artık.

[@particiajuliao6636]

Hello Dr can you help me out ..I have multiple tarlov cysts and my surgeon wants to do a sacroiliac joint fusion because I fell ..I'm worried because I want to make sure I am not going to have problems with my tarlov cysts and the fusion..should I worry ..please I'm scheduled to have the sacroiliac fusion jan 23 2020. I need a 2nd opinion

[@ashhhrajgor9908]

Im face problem of perineural cyst last 10 year but this time my left hand very weak and vibrating. Please help me what i do ??

[@veronikag968]

What about the people who cannot afford to fly over to America or pay for the surgery? Is there someone in Australia who can help?? My mum has just discovered these cysts all along her spine, but cannot find anyone is Australia who can perform the surgery, which itself is very expensive. Is there any solution? Please help

[@katja1268]

Hi! I really recommend Dr. Feigenbaum; I know he flies to Cyprus to do surgeries outside of the U.S., but I suggest contacting the Tarlov Cyst Foundation for more information. www.tarlovcystfoundation.org

[@roksanaszczesny9777]

This gave me hope. I'm in Ireland but I'll contact doctor F asap

[@SpinodoDragon]

Any luck? I'm in Ireland too and have been dealing with this for 7 years.

[@maganbhai8643]

When will the proper technique for the m.r.i. become common knowledge? Is it the insurance company's suppressing this vital information?

[@kathleenlivingston6795]

I do have a Tarlov Cyst and am very concerned. Been having pain along time. But it was just found on my latest MRI. Is this something to worry about

[@hablemosdequistesdetaylor6125]

Yo me pere con el.2019.me fue bien pensaron q no Era operable fue possible. Fuero Bueno q nos ayudata sus foundation pata seguir y encomtrsr uns vida mejo

[@TruthinQuest890]

Today i went for MRI test and the report says i have tarlov cysts. Can you help me

[@spyrogirlkim]

I NEED help These cysts and pain are going make me crazy.I can not handle this pain much longer.

[@rubycorey981]

I started having back pain after an injury. They did an MRI and found mild DDD, however, also there were 3 Tarlov Cysts, The radiologist said they may be encroaching on the nerve roots. I went to the neurologist and he basically told me that there were no symptoms of this and that it was probably from DDD. Well I have had several steroid injections, pain medications, muscle relaxants,etc., however, now the injections do nothing for me and maybe even make it worse now. The pain is in my leg going down into the toes, pressure in the female parts and rectum, and sometimes it hurts terribly to sit down at all as it feels like a bruise. However, no one says anything about the Tarlov's and say I am just stressed and therefore the muscle spasms and pain are caused from depression or stress. I am getting muscle spasms terribly and have to take Valium when this occurs. I am just very frustrated because I am 51, before the injury was very active doing vigorous exercise and now if I even walk for a distance I get these severe leg pains and the cycle starts over. So, now I am afraid to exercise, dread getting up and down because it hurts so and now the injections do not help at all and maybe make it worse. I am very frustrated because the pressure is so significant. I cannot take NSAIDs as I break out in welts and cannot breath, so my options are not great. Taking hydrocodone/APAP does little if anything and now the symptoms have been progressing and interfering with my walking. I do not understand why doctors do not "believe" in symptoms from these. It is just very frustrating. Any suggestions?

[@cristinamaia7332]

Sinto o mesmo, mas...

[@cristinamaia7332]

Tenho cisto com 1, 5 zona lombar l5 s1e bastante queimacao na zona intimas com uma forte pressão sobre o anus. Terrivel

[@clarewilson5291]

Dr. Feigenbaum My mum has a 5 centimeter tarlov cyst in her sacral spine. Apparently the cyst has pushed through into the pelvic cavity. The specialist she is seeing say that she is only the third person in the world (and the first in Australia) where this has occurred. Is this the case, and what do you see as being her best treatment options. She is in great pain and can no longer continue on like this. Please help. Thank you

[@cindyvanhulle7388]

I have several Tarlov cyst in my neck C6-7. I just got the results from my MRI. I have decreased grip in both hands along with numbness and burning pain in both hands at the same time. I just recently started having burning pain goin down my right arm. I have had blurry vision and a few episodes of losing my balance and falling over. I don't know if this is related but I have seen many drs. does anyone else have this in there neck?thanks

[@donpitts2388]

Hi Cindy, I have them in my neck as well. I just returned from Dallas from surgery with DR. F. having 3 in s2 s3 s4 that was March 27th. I choose to have the ones in my sacrum addressed because of the bowl and bladder issues i was having. I have migraines that i get once a month shot and and I still have them usually hits early am 2:30 or 3:00. I have optic vision problems and loosing my balance at times. I've been told ones in your neck are rare. I haven't been back to my nuro Dr. The problem I find is that no one has heard of these cysts except the Dr. that treats them and is basically the only one who understands the pain they cause its hard to find information on them about them. Dr. Feighbaum and his team at Pine Creek are helpful if your nuro leads you in that direction for treatment. I was over a year getting mine treated. Good luck in your Tarlov Journey . Hope your issues can be resolved soon. Take care. Thanks for your post.

[@foxfur8327]

Yes, numb left arm, left face and lip, difficulty focussing and rip roaring pain in every single cyst goung all the way from bottom to upper middle part of spine. But if you think that's bad, wait until you become incontinent with urine and bowel movements as well! This is happeneng with thousands of people who are being pushed away by neurosurgeons who tell them the removal of any spinal cyst is deadly so they are dying from the pain and permanent disability of the cysts instead.

[@JaniceWithTheTarlovCysts]

I also have numbness in my right leg and foot and have lost feeling in 3 toes. I can't sit for long, stand for long, walk very far...this is not a life I am living. I go every 3 months for an epidural nerve block which does not really help with the pain or the "charlie horses" I get from my buttocks down to my toes, but I am afraid if I don't go, it will get worse! The health systems in the Niagara area has a bad rap for a reason. Even a trip to the ER when I am in severe pain gets me nowhere.

[@photostockcanada]

Gabapentin helps me a lot, along with T3's

[@LurlenePayne]

Discuss thoracic tarlov cysts

[@twistedsunflower8969]

I was just diagnosed today with perineural cysts in the left c6-c7. I am symptomatic now due to a motor vehicle accident. What do I do?

[@leslieshirkey8376]

Not usually in the cervical area.. I’d get 2nd opinion

[@gorditaangel]

I have just finally been diagnosed, after my MRI

[@channelles7128]

I was diagnosed with one back in 2016 on my s2 left nerve but my doctor didn't tell me I had one. I happened to be going through old paper work and found my MRI. I've been having the symptoms but didn't know why. My doctor isn't the most supportive unfortunately, can anyone recommend an alternative route? I'm from Canada.

[@foxfur8327]

From Canada? Good luck! You won't find treatment here!

[@stunt509]

I have a cyst on my t11. Would that cause upper and lower back pain? I just had my 31st b-day and I'm falling apart😢😢😭

[@niknazimahanum5682]

Hi Dr.. i am from malaysia...I have tarlov cyst(recurrent) @ level S2 S3... it's painful

[@lisacordero8222]

Hi Dr. Feibenbaum. Have you ever heard if a Tarlovs Cyst being treated with a shunt?

[@leslieshirkey8376]

They just fill back up

[@christibush7154]

I have a Tarlov Cyst in my Lower back. Since 2006 no one can help I hope you can.

[@gorditaangel]

Do you know if there is a Tarlov clinic here in Canada where I live?

[@samirnasri1456]

Hey I believe the only doctor who treats tarlov cysts in canada is Dr. Kieran Murphy (he's in Toronto), here's a link to his contact info: medical-imaging.utoronto.ca/node/271

[@christinakirwin3895]

Dr Frank, I have seen my local GP for several years for pain meds etc, however today he told me that he did not believe in them and I felt devastated, how he can be so ignorant when there are so many doctors here that feel the same, he refuses to look inro it any further and thinks it is just in my mind, I have several tarlov cysts, like bunches of grapes and since a car accident in 2008, have not found a doctor here in Australia who actually believes in them......any advice ? I am desperate

[@christinakirwin3895]

Also to top this off my back has also been going out when I bend over, or try to stand from a sitting position........Tarlovs have interrupted my sleep for so many years and its common for me to only get 3 hours sleep at night, because I cannot get comfortable and the pain just gets worse.............I need some good advice please, can you suggest anything ? my doctor has made me feel like a fool, saying they cause no pain and they are all incidental.

[@christinakirwin3895]

christina kirwin To add to this, the burning cramps I get from across my abdomen to down each leg ands then feels like I have a tight burning band around my ankle is consistent, the pain is mainly on the left side of my lower back, but when it gets worse, it is both sides and both legs, I am so depressed and need someone to believe me, I have had cortisone injections however it makes my abdomen and legs cramp up in a horrible burning spasm that last for a while, I was told that it crystalised as soon as it hit my system and does happen to one in a thousand, what can I do please ? hydrotherapy made me worse spending weeks on my side on the lounge with heavy pain meds.......my bladder is also mucking up and the loss of sleep seems to highlight the pain more, I cannot sit on my bum, I have to sit offside and cannot stand or walk for long either..........sometimes I don't know what sets it off worse.

[@ODSTAINA]

Im not sure that what I have are actually TCs. An MRI performed to see why my hip keeps snapping out of place revealed perineural cysts. I have constant pain in my tailbone area combine with dizziness, blurred vision, a sensation of cold water running down my head, ringing in the ears and pressure in the base of my skull that get so much worst after prolonged sitting. Has anyone else had any of this other symptoms? I don't know if they are related to TCs, specially since i have not been diagnosed. Any info will be greatly appreciated. Thnx everyone!!

[@foxfur8327]

Yes, I have cysts running all the way up the left side of the spine and habe the same as you. They range up to one inch in size and feel like skin issue on fire. No relief ever and have now lost control of bowel and bladder too.

[@hope_amelle1748]

The UK have no idea how to help us and the level of gaslighting that’s being done is just heartbreaking. I want to not live with this

[@gorditaangel]

I have still 4 girls here at home, one in University, one is 17, 14, and my 12 year old (who has Down syndrome), need my help and support still! Can you help me even though I live here in Canada?

[@gwenfox1034]

I first had woke from a surgery 15 years ago with severe back pain in my lower lumbar, the Dr because stomach pain etc removed my gallbladder however symptoms now indicate t cyst my first MRI and not goldfish and my neurologist said it was my cm I research found Dr Feganbaum 2009 my surgery was done but since I have developed 11 in my thoracic a car crash and since this in 2012 my conditions have gotten worse and have had to ignore my health due to family issues I am in bed a lot as relief comes a bit more and I find with my stress and emotional actions I get worse I have really given up on the healthcare system but Dr geranium never I have made my appt Sept to move forward as at 55 I want to do so much in the time I have so in meantime I need a little help for those times pain has me so distraught if having relief thru medication for short time till I can get the care I will. I've alwAys been strict when it comes to pain meds so many I have trouble taking. I feel for those with this and sorry there is such ignorant healthcare providers in the U.S. wanting to inject epidermal where it's not about patient but the pocketbook I highly recommend Dr. FEGANBAUM Debbie and Laura they are so great

[@debdro66]

i have 2 Tarlov cysts and all the surgeons i have gone to here in Ontario,Canada tell me there is nothing wrong with me,yet I am in constant pain. They are 1.8x 1.2 and 0.8x1.1 in size. Can you help me in any way,please. I am at my wits end. Thanks,Debbie Dronfield.

[@samirnasri1456]

Hey I believe the only doctor who treats tarlov cysts in canada is Dr. Kieran Murphy (he's in Toronto), here's a link to his contact info: medical-imaging.utoronto.ca/node/271

[@kimberlywebber880]

Father, cousin and his sister and myself suffer from Tarlov Cyst, Fibromyalgia and RSD-complex regional pain syndrome. Is this soft tissue disease effecting us all but expressed in different symptoms resulting in these diagnosis. Image studies don't note Tarlov in Canada. I was bucked of a white arabian sulky race horse at 12, formed a large bump on my sacrum that enlarges and diminishes. Now 38 and all I get is FM/CFS autoimmune markers for smooth muscle. Irish decent maybe a genetic connection? Hope to find out more about this soon, loss of bladder control etc. Nice, apparently that is normal for FM according to my Rheumatologist at lease they cleared me for MS with all the numbness and tingling in my arms and legs but did not do MRI down to my tailbone which is where I fell. Lol

[@WANNABEMOMMIE2013]

Kimberly Webber Could you have a connective tissue disorder, such as Ehlers-Danlos Syndrome?

[@SteveBurman]

Thank you, through mri has been told of this

[@janinegroman3889]

Thank you Liliana! I am in a lot of Radiculopathy pain(sacrum-exactly where cysts are). I currently don't take pain meds but because I am stubborn and angry at the responses of MD's and the solution being taking them. Were you taking pain meds prior to surgery? Can you tell a differnce now that you had surgery, despite the ups and downs?

[@lisawatts7694]

Janine, I saw where you said you joined a FB support group for tc's and it was scary. Unfortunately some of the groups on FB do allow their members to tell their "stories" about their horrors of surgery. However, a lot of those "stories" are not true. Yes, every surgery has risks and complications and tc surgery is not exempt from those problems. There are more success stories out there than are told on the groups though because people get better and are living their lives again and don't go to the groups anymore. I promise the good does far outweigh the bad. I'm one of Dr. Feigenbaum's success stories. I also run a tc support group on FB called "Tarlov Cyst Disease Support for Cysters and Mysters". I don't allow any of that nonsense talk or Dr bashing in my group. I have a group of very loving, caring, encouraging, and supportive people in it. We're there to help one another through this journey in whatever way that we can. I don't allow other members to scare one another in my group either. So please join us if you would like, and I would be more than happy to speak with you either over the phone or through private messaging and help you whatever way that I can. I've had this disease for seven years and I had a successful surgery 3.5 years ago with Dr. F and I'' doing well. My Mom also had a successful surgery with Dr. F. 2.5 years ago. We are both 85-90% better. Please feel free to pm me on FB. My name is, Lisa L. Watts. I hope to hear from you soon.

[@lejo8153]

TC in S1 and S2... im in Germany :(

[@joycemumo2403]

HI, I am a 21yr old girl, I live in Africa,Kenya. I have been suffering for 3years with really bad back pain. recently I had an MRI done and they found two tarlov cysts in my S2, I really need help, please

[@drajoycevargas]

please recommend a doctor at massasshuset

[@drajoycevargas]

the tarlov measure 4 cm diameter at the sacrum

[@leslieshirkey8376]

Mine is 3.8x 2.4cm

[@sarahpenn33]

I need you Dr. F help me!

[@vesnasavic3324]

help me DR .Frank Vesna SWIZZERA. TARLOV Cysts S1 S2 .

[@tiaj6520]

WOW!💞

[@charlesgriffith3616]

jewelzsun15, my mom is 74 years old and she has a tarlov cyst, and has been in pain whenever she sits or stands for long periods. She has been to several neurosurgeons who said that would not touch it, and is considering going to see dr feigenbaum. Can you please tell me your situation or more about it please. I am trying to reach out for my mother. She would like to know more about your experience. Her email is eileenedgatearthlinkdotnet or reply here and mine is systechatmindspringdotcom