Diagnosing Tarlov Cyst Disease

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Diagnosing Tarlov Cyst Disease

Рет қаралды 41,161

Күн бұрын

Tarlov/perineural cysts are are cysts filled with cerebrospinal fluid that can develop around the spinal nerves, often in the sacral regions of the spine (95% of cases).
In this exclusive interview with Rare Disease Report. Reta Honey Hiers, executive director and president of the Tarlov Cyst Disease Foundation talks about the problems of getting a proper diagnosis.
Diagnosing Tarlov cysts is problematic for three reasons:
1) These cysts can create a plethora of symptoms that make it difficult to diagnose.
2) One of the main symptoms - back pain - usually lead clinicians to only take images above the sacral region. As a result, the sacral-located cysts are not imaged.
3) Even if the cysts are imaged, many doctors dismiss the cysts as not being symptomatic.
For more information, visit www.tarlovcystfoundation.org

Пікірлер: 67

@bettyspaghetty4703 2 жыл бұрын

I’m from Malaysia. I lived with sciatica pain for 12 years, I saw 11 specialist, orthopaedic surgeons and neurologist. One of the orthopaedic surgeon that I met did not believe I was in so much pain because of the multi symptom I mentioned to him, instead he suggested some physio to strengthen my core which I diligently followed and that resulted in really large hip joint tear on both my hip that needed to be screwed to fix.. I then went to see a different orthopaedic and did a discectomy in 2018 , multiple RF, still did not fix the pain. I was so demoralised, most days I hated living. Then the electric spasms along my spine happened.. each lasted 15minutes.. like I was being tased, it was intense. I was so sick of listening to myself, explaining the intensity of pain I’m in, to the same group of people, to a different group of people.. In 2019 met a neurologist, did a MRI, saw the cyst on my S2, the report mentioned nerve impingement.. still my neurologist insisted it wasn’t the cause of the pain.. she made me believe that it was my brain telling me I’m in pain when in actuality I wasn’t.. it made me sad when she said that.. deep down I know I wasn’t crazy and the pain was real.. she said it’s impossible that I have that many multiple symptom issues, i sounded crazy.. I saw her for three years for medication just so I could sleep at night, the pain won’t let me sleep otherwise.. by this time, I felt like life is playing a sick and cruel joke on me. My eyesight had become blurry, I felt woozy most days.. I became forgetful.. In recent years I started to get massive stabbing pain on my big toe and the arch of my foot.. the electric spasms attacked my foot arch this time.. it was the worse pain I’ve ever felt. 2 months ago, I finally decided to see another orthopaedic surgeon specialising in bunions. We got some X-ray and MRI done, he told me that I might want to see a neurosurgeon that he knew because of the tarlov cyst on my sacrum S2. He told me that my pain isn’t because of my foot and I did not need a surgery for my foot. I paused for a long time when he showed me the cyst on the screen.. I just looked him in the eye, not a word out of my mouth, speechless… Two weeks later i hesitantly saw the neurosurgeon suggested to me, I was convinced that he would tell me the same thing others did, but boy I was wrong. I’m glad I saw him coz a week later he did the sacral laminectomy on me.. and all those sciatica pain and electric spasms are gone.. I am now 3 weeks post surgery and still recovering.. to know that I am not crazy.. I am pain free finally able to sleep at night.. I thank God for not abandoning me .. I am 39yrs old, I gave up living, but now have found life again.

@josephnox1759 Жыл бұрын

Great story I'm happy you found a little more comfort. Yeah the medical field is trash. We definitely need improvement

@GurbaniHeals Жыл бұрын

I am from Malaysia too. Which doctor did you consult?

@soniabarhoumi Жыл бұрын

I have the same expérience .....à docteur said Thatcher il have psychologique problems untill i discover the kyst.

@jannetteperson8534 7 ай бұрын

Wow this is crazy because I'm looking back at my mris from 9 years ago indicating cyst at L1. And the years following it's still there and in other areas of my spine my pain is getting worse and not one of the drs. Have said anything about them. I'm seeing a neurosurgeon on the 16th I'm bring all my MRIs and I'm not taking nothing is wrong as an answer

@Dev-qz3zh 5 ай бұрын

Wow what an experience. Glad you finally found the right doctor and did not give up. I have tarlov cysts of size 2 cm and I have all the symptoms described. Today I met a spine surgeon who told me to do the excercises, which I have been doing without much relief. I'm so discouraged.

@NoName-mv1mw 2 жыл бұрын

Reta Honey Hiers is an amazing woman and a Godsend for the Tarlov cyst community. She has raised a great deal of awareness for this debilitating disease, and founded the Tarlov Cyst Disease Foundation. Thank you Reta.

@dave4433 9 жыл бұрын

Its time for the medical community to stop ignoring what they were taught 10-30+ years ago and focus on what patients tell them instead of dismissing it as incidental all the time. My MRIs have always shown perineural cysts in the sacrum and cervical back 6 years ago, yet it continues to be ignored, most prevalently by neurologists who should be taking the lead yet it continues to this day. The answer of sometimes there is no explanation for whats going on, maybe so at the time, but never ever give up. There is always a reason and always a source. Its a matter of finding it and fighting for it.

@SammyLevisosa 6 жыл бұрын

I had a massive tarlov cyst on my T-10. The surgeon that actually took it out said it was one of the biggest he had seen in that area. However, rewind TWO YEARS and every single pain specialist and neurologist I talked to it about said it was iMPOSSIBLE for the cyst to be causing the symptoms that I had, that reflected the symptoms of tarlov cysts to the letter. I had one doc tell me "That's just basically a big water blister in there. It cannot cause pain." I was treated like a fucking druggy. Everyone only believed I was trying to get pain meds. Fast forward nearly 3 years and one of the very very few neurologists in the COUNTRY that would even consider working on the cyst listened to my story and believed 100% that the cyst was the cause of my symptoms. It's been over a year since the surgery and I'm doing fantastic. I can actually get out of bed without wanting to kill myself. It infuriates me to no end that like 98% of doctors will NOT accept that tarlov cysts can be symptomatic. It fucking disgusts me. I was treated like a druggy and belittled by almost every doctor I spoke to.

@lindajohnson3855 5 жыл бұрын

Sammage DaSammich I have just been diagnosed and will be referred to an ortho spine surgeon. How did you find someone to help you? Mine are multiple in the thoracic spine but I suspect my cervical and sacral are involed. This is very painful and has affected my daily life. My email is mckibbenny@yahoo.com I,am a retired RN. I have had so many tests and many symptoms. Feel free to email me. Thank you in advance.

@wandacornellcornell1814 2 жыл бұрын

@@lindajohnson3855 I wish you luck, i was diagnosed in 2009, i have had two lumbar back surgeries ,but ignored my s 1 s2 sacral tarlov CYST, just as she said they kept telling they kept telli me tarlov cyst couldnt be cause of my pain. The main reason they deni us is because they dont know and are not qualified to operate on tarlov very few surgeons are and most insurance Co will NOT cover the surgery because the tarlov cyst are considered controversial as to do they really cause the pain and the cyst have been known to fill right back up with fluid soon after the surgery, what they do during sugery is drain the cyst then wrap the nerve tissue to try and keep the nerve tarlov CYST from refilling sometimes its SUCCESSFUL and people do get better. Im still suffering Im pretty much a prisoner in my home and am pretty much 24/7 in my recliner, there is no way can i lay in a bed it will hit me in most my pain pressure areas I just cant lay flat in the lumbar and sacrum cant take my own wieght and i only wiegh 112lbs. I gave up on doctors sticking me with steroid shots that only put more pressure on the cyst that caused such pain for about 3 wks that i became suicidal, which they didnt believe the steroid shots could cause me the degree of pain I was having . I live in in Illinois and last time i checked there in not a doctor in Illinois that operates on Tarvov Cyst,the closest surgeon to me that did was in Texas, but he does not except medicare or Medicaid Ins. TThe way I see It unless you have good ins or alot of money to put it bluntly your shit out of luck or at least that my situation. I WILL PRAY YOU WILL HAVE BETTER LUCK THAN I HAVE HAD I PRAY YOU HAVE GOOD INS AND CAN GET TREATED, I WOULDNT WISH THE PAIN I SUFFER ON ANYONE, THESE CYST HAVE TAKEN 99% OF MY LIFE AWAY, MY ADULT CHILDREN NOR DO THEY BRING MY GRAND CHILDREN AROUND BECAUSE THEY CANT STAND TO SEE ME IN PAIN, THEY EVEN TOLD ME MOM YOUR JUST NOT THE WOMAN AND MOM YOU USED TO BE , AS IF I CHOSE THIS FOR MYSELF !!! I LOST THE ABILITY TO CONTINUE TO WORK IN 2010. I LOVED MY JOB ITS NOT LIKE IM ONE WHO JUST DIDNT WANT TO WORK WHEN YOU CAN NO LONGER WORK YOU LOOSE EVERY THING YOU WORKED FOR YEARS TO HAVE, I FELT TOTALY DEVASTATED IN TIME IVE HSD TO LEARN TO ACCEPT IT .IM NOT ABLE TO MOVE TO ENJOY THE THINGS I ENJOYED SO THERE OF NO USE TO ME ANYWAY. I DONT MEAN A RELATIONSHIP WITH MY CHILDREN I WOULD GIVE ANYTHING TO BE APART OF THIER LIVES. I FEEL LIKE TO THEM THE MOM I WAS DIED SEVERAL YEARS AGO BECAUSE OF THESE CYST. I DONT MEAN TO SCARE YOU AND I HOPE YOU HAVE A BETTER AND STRONGER FAMILY EMOTIONAL SUPPORT SYSTEM THAN I HAVE . DONT THINK I GAVE UP EASY I FOUGHT TO GET BETTER I LET THEM CUT ME FOUR TIMES ON MY SPINE IVE HAD TWO NECK SURGERIES ALONG WITH TWO FAILED BACK SURGERIES I LET THEM STICK ME WITH NEEDLES MORE TIMES THAN I COULD COUNT I TRIED PHYSICAL THERAPY TILL IT HURT SO BAD I COULDNT STAND IT ANY MORE THE PHYSICAL THERAPIST HAD NEVER EVEN HEARD OF TARLOV CYST BUT I KEPT GOING I DIDNT WANT TO BE LABLED AS PATIENT NOT FOLLOWING DR.ORDERS. WITH ALL DRUG RESTRICTIONS ON PAIN MEDICATIONS GOOD LUCK ON GETTING A DOCTOR TO TRY TO TREAT YOUR PAIN THEY JUST WANT TO SEND YOU TO PAIN MANAGEMENT CLINICS WHERE THEY JUST WANT TO SHOOT YOU IN THE BACK WITH MORE STEROIDS THEY NO LONGER BELIEVE IN PERSCRIBING PAIN MEDICATION THEY LABEL PAIN PATIENTS A BUNCH OF DRUG SEEKERS. AS I SAID BEFORE I REFUSED TO BE STUCK WITH ANY MORE NEEDLES AND I QUICKLY LEFT THERE SO CALLED PAIN MANAGEMENT CLINICS, THERE IS ALOT I COULD TELL YOU ABOUT THE MONEY RACKET THE DR.S GOT GOING ON IN THOSE CLINICS THIER MAKING A FORTUNE WITH THOSE STEROID SHOTS. THEY MAY HELP SOME PEOPLE I ONLY KNOW WHAT THEY DID FOR ME, IM GONNA SHUT UP NOW AND GET OFF MY SOAP BOX BEFORE I VENT OUT MY WHOLE LIFE HISTORY

@cheypam 2 жыл бұрын

They ignore it because they don't want to do surgery on those delicate nerves. They really don't know how to fix them either. They don't want to risk a malpractice lawsuit, by operating on spinal nerves that low and crippling the patient for life.

@carolcook2825 4 жыл бұрын

Thank goodness I have found this, hallelujah

@kinghados Жыл бұрын

This video applys to me all too well. The amount of doctors that go it does nothing but dont give me a reason to my symptoms is driving me crazy

@soniachambers6460 5 жыл бұрын

What an intelligent, thoughtful woman. I wish my gp was like her...sigh

@jlm3124 11 ай бұрын

Thankyou, thankyou, thankyou, for saying this.

@elissetteg58 9 жыл бұрын

I've felt all alone for the last 5 years! When she mentioned the ear issues/feeling of changing elevation or the pressure after being on a plane! I was like:"yes!!! That's me!"!thank you for uploading! Taking this to my next doc visit..enough with the BS!

@cindysaurman334 8 жыл бұрын

Got a call from this wonderful woman today... Thank you SO much.. Hopefully gonna get some help and some answers !!!! Thank you Miss Rita.............

@tygers5967 7 жыл бұрын

Wondering if you have been to see Dr. F yet. I got a call from Reta as well but now I can't seem to get in touch with her again. She was going to e-mail me information so that I could deal with my doctors this week but I have not heard back from her.

@cindysaurman334 7 жыл бұрын

I talked with her and never heard back from her again... :( :( Still dealing with the pain from these dam things.... I hope you get some relief.. :)

@stunt509 5 жыл бұрын

@@cindysaurman334 have you got any help yet?

@cindysaurman334 5 жыл бұрын

@@stunt509 no..i have not...

@stunt509 5 жыл бұрын

@@cindysaurman334 what do you use to help with the pain?

@bonniemoerdyk9809 4 жыл бұрын

Thank you dear lady! Although I have not been diagnosed with Tarlov Cyst...I have been having lots of problems with my very low back. I also have fairly severe weakness and walking is extremely difficult. My problems started in 2008, and I was (supposedly) given a full spinal MRI. I also had 4 Nerve Studies/ EMG's done between 2009-2012. The first 3 showed problems, but the 4th one was not bad (my doctor had given me a round of steroids just prior) so they always go by that last one...even tho my symptoms returned a few weeks after steroid use. I remember asking why they didn't go all the way down the spine on the MRI ....and they said it wasn't necessary. Mind you, I had told them most of my issues were in the sacrum/coccyx area! It makes complete sense to have the MRI done all the way to the very end of the spine . I have some of the symptoms you describe...but not all.

@Crowcifixx 3 жыл бұрын

Thankyou. I have all these symptoms had no idea it could cause the ear and visual changes i am also experiencing!!!

@lclaymore6587 3 жыл бұрын

Thank you so much. I have L4 and L5 collapsed on my right side, but they can't operate due to the Tarlov's cyst occupying the sacral canal as well as the thecal sac. Due to the policy of Narcofascism which is being enforced on the entire nation, so many people, including seniors live with a compromised quality of life. There are specific areas where the problems are far worse than most places. Just one last thing, and let me thank you for having this site. The effects of pain relieving meds are different when you are in actual pain.

@nofunybiz 8 жыл бұрын

I have a root nerve cyst at L1, Syringomyelia between T9-10. I have been having back pain and nerve related issues ongoing constantly now for 4 years. I did see Neorosurgeon for syrinx, however he said it is not large enough to operate. Not one doctor though has taken the time to address the cyst at L1...very frustrating to me. I also have multi level DDD in neck, thorasic, lumbar and sacral with 4 bulging disc.Now I have been diagnost with Fibromyalgia. I question all this pain and if it all is just related to all the spine issues.

@honerdcouster8723 4 жыл бұрын

Yes sacral tarlov cyst disease causes FM May I suggest that you have a s1 dorsal root ganglion nerve block..also do that where you have pain at all levels. Repeat ever quarter. I have a feeling that you can stop when you feel safe. Your going to get much better but the stakes are higher. See for now your the expert.

@swalexander6218 3 жыл бұрын

Maybe this could be a chance: Syringomyelia (Chiari malformation) between T9-10 www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771

@andreasmith313 4 жыл бұрын

As someone diagnosed back in 2004 and who battles many system issues up to and including papilledema now I thank you for this info. Now if only I could get someone to finally remove the two cysts encased in my lumbar vertebrae before I lose full lower body function.

@DeviantMotives 2 жыл бұрын

Happened to me. Docs blew it off. Now the cysts have eroded my sacrum Awesome video

@georgewibawawan1818 2 жыл бұрын

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

@ShellHodg 3 жыл бұрын

Thank you for this. I have pain in my pelvis, back and a constant burning sensation in my sciatic nerve. I have had an MRI and it was confirmed that I do have two Tarlov cysts in my sacral area. I used to live in South Africa where they do not recognise this as an actual disease. I have seen a surgeon who basically told me to live on painkillers. This is not ideal as I have had a Nissen procedure for GERD - I do not like taking heavy pain medication and when I told him that the painkillers wreak havoc on my stomach he casually suggested that I go onto Nexium (having had issues with GERD since being a baby) I do not like the side effects of Nexium. I just don't know what to do anymore. I have since immigrated to Ireland - maybe I can find some help here - I'm not hopeful though. I am experiencing a flare-up right now and the pain is excruciating!! Hopefully one day this will be recognised as an actual, debilitating disease.

@wandacornellcornell1814 2 жыл бұрын

I felt your comment and can understand what your going through i too have been suffering with these Taevov cyst since 2009. I was wondering if you had any help in getting any treatment in Ireland, please tell us how you. Are doing now.

@ChronicPainInTheAss 5 жыл бұрын

Thank you SO much for this information!

@heathisul Жыл бұрын

I have pain in this area, got an mri, have multiple tarlov cysts and then was told “they wouldn’t be causing your pain”….that makes zero sense. I’m in pain there, you found something there, Occam’s razor.

@LS030 8 ай бұрын

Thank you so much. 😊👏

@lethalwoman 3 жыл бұрын

I have them both in sacral and cervical images

@PRNOBTCH Жыл бұрын

So I'm really confused I just had to have a bunch of MRIS I did figure out that I have a torn gluteus minimus tendon but in my spine the MRI report basically said this. SOFT TISSUES: Incidentally noted perineural cysts at several levels, findings of no clinical significance. What does that mean and there's other things too. Something to do with spacing between the vertebrae there's so much but I'm confused if this is what's happening why are they discrediting it I'm in pain every day

@dawnbaldini4464 2 жыл бұрын

I would like to know where I can go to get help cause this is happening to me I am being bounced around here in Indiana left in pain ....

@kapkapetrov2078 7 жыл бұрын

Madam, thank you for the sense making thorough explanation. Please advise how you can be contacted I am on a wheelchair with three well visualized Tarlov cysts affecting so many organs in my body and causing so much damage and mediocre functioning. Not that late stages Lyme I am fighting, has not left its trace of damages but the coccyx and sacrum pain caused by the tarlov cysts is unbearable, daily, with every breath I take. Please advise

@sumofme1 6 жыл бұрын

kapka petrov you can find her on the Tarlov cysts disease foundation

@honerdcouster8723 5 жыл бұрын

You'll find some information here but I dought a patient works there. So howbout finding a trigger- point bilateralist geta sacral dorsal root ganglion nerve block quarterly for a start. Luck is turning Your way.

@wandacornellcornell1814 2 жыл бұрын

I was reading tarlov cyst comments and read yours i did see it is y rs since you laft comment, i was wondering if you found anyone to treat your tarlov cyst?

@cindysanderson887 11 ай бұрын

I was diagnosed on an mri that I had a 3.7cm tarlov cyst pain unbelievable. Still after 5 months waiting for help 😢

@triciahughes4331 6 жыл бұрын

I have six possibly seven Tarlov cyst within my lumbar (bilateral lateral) and L5 S1 along with herniation at L5 S1. Three cysts are 1cm according to the radiologist and the rest aren’t far behind in size. Over the last couple of years I’ve been getting spinal injections at the L5 S1 every 12 weeks throughout those 2 yrs. The cyst were not present on previous MRI prior to receiving the spinal injections. What prompted another MRI was the fact that the spinal injection that always worked before didn’t work at all after I receive it and I could barely walk given the pain. I also have issues within the thoracic and cervical MRIs for these two areas of the spine was two years ago. I’m thinking I need updated MRIs of the cervical and thoracic given how many I have in the lumbar and S1. 😔

@dupuiedeanna 2 жыл бұрын

Did you get more imaging done? I have 6 in my cervical spine, so I’m sure I have them down my back but never had imaging.

@trythinadavison604 2 жыл бұрын

Thank you for making this

@susanstepaniak9750 3 жыл бұрын

Thank you.

@bon47ful 3 жыл бұрын

Thank you. 💙

@orira7390 4 жыл бұрын

I live in Illinois, I have Tarlov Cyst in S1 and S2..low back .I discovered by Mri...I have severe pain in my butt around my rectum....and pain in Vagina..I went to Orthopedic surgery to help me to do Surgery or drainage...He said to me that it's risky for me to do drainage or surgery...and the pain is not came from the Cysts , may be somewhere else and suggest for me to go to Medical physical rehabilitation for SI JOINTS may be he will do for me injection and some therapy!!! My symptoms: I can not sit comfortably, my urine changed the color. to yellow..not normal urine...pain like pressure and sharp...I'm 46 full time mom.....Help me with any advice please or where to go ??😭🙏🙏😰

@jenniealaska Жыл бұрын

I had a Tarlov Cyst, drained in 2015 now it’s back as a TUMOR!! Please, please, please help!!!!

@awesomeamanda5267 5 жыл бұрын

Can you have these type of cyst in your neck..was told I have a lesion/cyst in my C6 ..was curious if its the same type of cyst

@MizRuthie 4 жыл бұрын

I have them, too.

@rinapal3076 Жыл бұрын

How l am rellief to this dissis

@sherriebachell 5 жыл бұрын

I have cysts on the tendons, abductor muscle tears...chronic tendonopoparhy I have all the symptoms blurred vision Omg everything your addressing all the symptoms Please someone contact me

@honerdcouster8723 3 жыл бұрын

Be nice if doctors knew the proper MRI technique to detect entrapped cerebral spinal fluid . Some experts do but this knowledge is suppressed. So take an average fibromyalgia patient, the MRI is never actually turned on. Not for them. Might be true on countless neurological issues too. This is something to be a little upset about. Clarity begins thus. Gotta be this way. Find a way to not take it. Surgery is not the only way. Lateral, bilateral trigger point injections, interventional radiology. All are actually in the cyst and leak business. If the practitioners are aware of it. Who knows. Probably prefer to be mysterious. Hell with that. This is a wakeup call.

@mehsap 2 жыл бұрын

Bu hastalığa sahip ama iyiye giden birinin yatak odası nasıl olur sizce?