🥺😢 THANK YOU for sharing!!!! I’m in SOOOOO MUCH PAIN. No one listened to me until TODAY. All I kept getting was “everyone has back pain.” Finally, someone FOUND IT. 😭😭😭

Thank you so much for sharing your story! I am a military vet and had a hard time finding doctors who would listen to me. I finally took it upon myself to get imaging done and there they were! It has been a struggle to get the surgery. They only prescribe muscle relaxers and PT... i am 33 and feel like im 66. I dont know how i will manage to live like this without the surgery. the pain...my goodness. 24 hrs a day. Hopefully i can get the VA to approve this much needed surgery!

Really good perspective about the distinction of chronic illnesses within the medical system. It completely changes your interaction with it. All of a sudden you need to become your expert.

You 100% have the right perspective on this

I have a Tarlov cyst. Unbearable pain along with the other symptoms. I see the neurosurgeon in ten days. Pray he can help me. Not sure how much more I can take. Trying to hold on. Just want this pain to lessen.

According to my MRI report I have multiple cysts in my thoracic spine. The pain is becoming unbearable and nothing else is showing on my MRI. I do have some herniated discs in my lumbar but my pain is mid back radiating around my rib cage and up my sternum. I go to my follow up with the neurosurgeon in a couple of weeks and I'm so scared he's not going to believe that its caused my the cysts and say theirs nothing wrong. This pain is so real and can't even get pain meds.

Hi Anne, do you still have the information for the specialist in California? When will you have a new video with and update of how you’re doing now in 2023. I hope that you and your family are thriving. I know this affects the whole family! Sending love your way!!

I'm from Poland and here nobody believes us 🤦I was told it could not cause pain.

Hi! I have Ehlers, MCAS, Chiari and Tarlov Cysts as well. I’m struggling so much with bladder related issues connected to my cysts (strong urinary urgency and frequency). Did you have similar issues and have they resolved over time since the surgery? Thanks so much in advance. Would love to talk privately given our similar diagnoses and journeys. Not many people out there, especially moms, really understand how hard this can be.

Thank you for your video. Last week my pain management Dr. told me that my outlook is not that good. And then suggested that I get another steroid injection that I had just told her is not helping. I left the office feeling deflated. I'm looking into finding a Dr that can help me

Can I please ask, how did it progress like that in one year? I thought cysts wouldn't grow that fast. I have 2 tarvol cysts near S2 and theyre big 2X5 cm and I am so so scared. I have pudendal neuralgia symptoms but I am so so scared that if I don't get rid of them it'll get worse. How fast did the symptoms progress for you and why?

I have a Tarlov cyst at S1. Most of the time this thing is annoying but sometimes it flares really bad and I have all sorts of symptoms. Pain management wants to try an epidural steroid injection to see if it helps. Kenalog being his steroid of choice. Scared it could make it worse but what I’m doing isn’t taking it away. I just want to be able to sit without being in pain.

Hi, I have a10cm Tarlov cyst and about to have surgery next month, any advice would be much appreciated.

Thank you very helpful

Hi I was just wondering what they did with the surgery as I have heard there is a few different ways they go about it, thanks 🙏🏻

I have a cyst and its 3cm, I cant sleep during the night and have sharp pain when i just sit. I been seeing a pain management for some time and they try to drain it twice and put steroids to help with the pain... do you think draining it helps? I am day 4 from having it down and I am in horrible pain. I feel the same no body believes about the pain I have.

Are you any better now 2 years after surgery?

Thanks for the great video. I have 2 in my cervical spine on the left at C6 / C7. No idea about the rest of my spine. I have issues on the left side of my neck but I also had whip lash on that side and can feel muscle is involved. So no idea if those cysts are doing anything or not? I have read medical journals where reports have said they are more common than people think and that they are usually benign. I am freaked out because now I am afraid of working out and making them worse or 'waking them up'? How do you know if they are the cause of your issues or not? Is it a good idea to still work out, lift weights or do calisthenics if you have these in you neck but are unsure if they are symptomatic or asymptomatic? Like I said, I had whip lash and a concussion on that side of my head and neck but no idea if the tarlov cysts are to blame? Like I also said, I know a lot is muscle induced because I can feel that muscle on that left side of my neck is completely knotted up and stiff. Sometimes it shoots down my shoulder and arm but very rarely. I also tend to carry my stress in my neck, ie. If I am stressed out, my neck gets very tense and stiffens. After I had the whiplash, they did an MRI to check for any herniated discs in my cervical spine and it was clear and on the report it said there were 2 or 3 (can't remember the number) perineural cysts at levels C6 / C7 on the left side. 🤷‍♂ I don't have any symptoms anywhere else on my spine like in the sacral region etc, knock on wood and thankfully.

My question is: Should I avoid Spine Anesthesia whenever I have surgery? Does Spine Anesthesia cause Tarlov Cyst to appear / grow or worsen?

Hi, would you happen to know the surgery costs out of pocket?

Hi Anne, i been 7 years suffering from tarlov cyst i had consultation with dr Feigenbaum and he said that i need the surgery but my insurance doesn't want to pay for it so if you can tell me what type of insurance you have .

Can simple MRI detect tarlov cyst or need to contrast MRI

Hi Anne .what you said if I understand. Only laying down relieves the pain ? If that's correct? It's considered positional. I have fibromyalgia Tarlov right side s1. Oh this is Jordan we've spoken. In your description of disorders you didn't mention you have cerebral spinal fluid leaks. It's my understanding they are part and parcel with the cyst . The biggest sign of a leak is positional relief . Usually this refers to headaches. Not in my case though. Recombinant position helped mostly with arm cervical thoracic pain . Your doing the right thing with recombinantcy. Wouldn't blame you if you are burnt on modern medicine about now. Only two cerebral spinal fluid leaks experts on earth doing targeted epidural blood patches Duke University Cedar Sinai hospital LA. . Caffeine helps black tea too. Also music is good for pain. "Tell me why" Nora Jones. Your going to get better still.

Is it possible to get rid of this disease without surgery?

you had TC surgery with dr F?

Hi Anne....im living in Houston,TX and in this Video u mentioned Few name of Dr who can help read Our MRI. Im so tired and stress to go to one dr to another dr and none of them can find out whats wrong with me. Can u tell me the nNe of that Dr u mentioned, maybe they can help me to find out my problem. Thankyou (Linda)

This is helpful. Tarlov in Bryan tx. now. Check out" a little about alot" I'm s1. Also the young nih specialist. The third surgeon will I feel rewrite the book. Dr. Del Castillo Cancaneo. He's the one.

Hi there had tarlov cyst desease for 3 years and had surgery about 3 weeks ago the only thing is sciatic pain I'm getting mainly on my left side did you get this if so how long does it last

Anne , do you have IG?