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Tarlov Cyst

AnonymousUserAAnonymousUser Posts: 49,899
edited 06/11/2012 - 8:22 AM in New Member Introductions
Hi Butterbean here, ;)

I have had severe lower back pain for 2 yrs,11 months. Im only in my late 20's. Cannot socialize. Cannot do much. Cannot live life being in constant pain. Have to have assistance when shopping for groceries (cannot lift shopping bags or bend over to take items out of trolley & put on "conveyerbelt" to be scanned- too painful) Trammal pain meds help a bit but wishing, hoping & praying the pain will go away 1 day. :W
Only abnormality that shows up on MRI is a 5cm Tarlov cyst S2 or S3 region of lumbar spine. Nerosurgen tells me its just a coincidental finding. I have noticed other forum members have also been told the same thing about their Tarlov Cyst/Cysts.
A Mylogram was performed & showed CSF in cyst was in communication with rest of CSF in spinal chord. Back specialist/Othopedic Surgen told me to come back 12 months later for a 3rd MRI "to keep an eye on it".
I Try to put on a happy face because I dont want my family, friends & my partner to pity me, because I wish I was still a strong independant woman like I used to be (and hope to be again). I walk around slowly & haunched over like a much older person because of the pain (no offence to the elderly). I cannot sit up in most cars so I have to lie down on the back seat, this has been the case for 2 yrs 8 months. Difficulty standing, sitting, walking & even lying down (but to a lesser extent). :''(
I would love to hear from other people who understand what its like to be in constant pain,from others that also have a Tarlov Cyst, or from anyone else. I havent worked out how to reply to other tarlov cyst sufferers posts yet, but I will reply to them once I work out how. Thanks. >:D<
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Comments

  • The pain that you are describing is exactly what I go through with my facet joints. Has anyone mentioned possible arthritis in the facet joints to you? Of course, I have never had a cyst so maybe the pain is the same.
  • :) hi and welcome to the forum! we are here to offer you support and answer what questions we can. i am so sorry to read of your constant pain. it seems like you should be trying some stronger pain meds. do you have a pm? there may be other conservative treatments that could help you. what about pt? please keep us informed and know that you are among people suffering just as your are. ~X( you are not alone! Jenny :)
  • I too have a tarlov cyst. I think it is at L5/S1, but not positive. my doctor doesn't seem to think that any of my symptoms are related to the TC, but I DO think that the symptoms could be from it. It's like, when I first learned that I had the cyst and looked it up, many of the problems I was experiencing sounded like the symptoms associated with a TC. I asked many people on a different forum what kinds of symptoms they have experienced and mine were much the same. I haven't had a follow up MRI in over a year, but now I have a spinal cord stimulator ad will not be able to have any MRIs.
    PM me if you want to talk more in depth about symptoms that you might have and we can compare! Welcome to the forum! ">image
  • Hi Butterbean, welcome to SH. That is a huge cyst. Have you considered getting a second opinion, perhaps from A NS, especially since this type of cyst is very much a nervous system issue as compared to a bony issue? Good Luck and keep us posted. No one should have to suffer as you are. I hope at least you can get some better PM to get you through. God Bless, Sue
  • Hello trater, thanks for your reply.
    Yes, I too looked up symptoms of the TC when I was first told, I thought it sounded a lot like my symptoms. Especially the feeling of pressure in my pelvic area. I get a lot of headaches too. I have read this could be related to the spinal fluid changing. I will pm you later & we could compare symptoms, I cannot sit for very long before its just too sore to put up with.
    --------------------------------
    From Butterbean
  • Hi and thanks for your reply. Would this condition show up on an MRI? I will ask othopedic surgeon, I have appointment in about 2 weeks. Does cold weather seem to make your pain worse? It does for me. 8>
    Best wishes from Butterbean
  • Hi lulusheart,
    Thankyou for your reply.Yes I have been thinking of asking Dr. for stronger pain meds, however, MS Contin (morp sulph) seems to always give me a migraine. It was prescribed to me but all 3 times I took 1 I got a realy bad migraine, so bad I couldnt even talk properly. Sorry but I dont know what a pt is. Yes I take 200mg SR Trammal,takes the edge off the pain.
    I realy hope your pain improves :)
    From Butterbean
  • Hi Cali-Sue and thanks for replying to my post.
    In my Orthopedic surgen appointment coming up in a couple weeks I going to ask to be referred to a different Neurosurgeon than the 1 I saw all the other times, for a 2nd opinion. Did you mean another Neurosurgeon when you wrote "A NS"? The cyst is eroding away my last vertebrae but I was told by NS I would be "ok structurally"...
    Best Wishes from Butterbean. :)))
  • butterbean and trater- I found out that I had a Tarlov cyst that was noted as an incidental finding. It is in the sacral area and just described as small (or very small??) without any actual measurements. I do not think it is painless as I have lots of pain and the pelvic pain I believe may be due to this cyst. It is often nauseating, dull, sharp and feels like pressure. I have to hold my breath due to pain and it prevents me from having an active lifestyle. It really sucks... ~X(

    PM me if you would like to compare notes. I also have a lumbar lipoma and a tethered cord that was released during a surgery. So now the dr says I have TCS-tethered cord syndrome post surgery. I just found out the lipoma is 2 cm which is about the size it was when I 1st had surgery years ago. :S jade
  • Hi Jade,
    Thanks for reply
    I have sent you PM, so we can compare.
    From Butterbean.
  • I too have a Tarlov at the S1 level, and I still wouldn't know about it if I hadn't requested a copy of the last MRI. I really thought I was losing my mind over the last 18 months as my pain and mobility and other symptoms were getting worse. When I saw it on the MRI, I just assumed it was nothing to be concerned about since my ortho surgeon never even told me about it. But, when I looked it up, it was every symptom I have been going back to him with over and over again. That just pisses me off. The migraines, the numbness, the screaming pain in the back, hip and buttock area is enough to make me crazy. And, even when I try to do a few little things, I pay for it desperately. I spend most of my time laying down to keep the pressure off. It is maddening. Now I have to wait for a neurosurgeon appt before I can even look into treatment,and there is no treatment available in Canada for me.
    Anyone with one, I look forward to chatting more about it, because, it seems like they treat us all the same. I don't think it matters who small they are, once they are symptomatic, it is so much the same pain for all of us. I am angry and tired of fighting this fight alone.
  • you all are dealing with this. how horrible.

    it is so frustrating to *know* what your body is feeling, and be told by doctors that you are wrong.

    i pray that you all have the strength and will to keep fighting for the answers and treatment you deserve!
  • I was born with tethered cord syndrome, docs would never do a test growin up even tho I would wake up paraylzed some day just be walkin and fall because my legs would quit. Im tryin to make a long story short here. A chiro found it when I was 32 no doc would run a test the chiro was my last option and he did the test. So I had to go to another county because no doc around here knew anything about it and it was a birth defect. I had the surgey to untether the cord...Wow that was rough my back would lock up at random and I couldnt move last time was 8 weeks I never thought I would walk again..but it let go enough I can walk but the pain is so bad.I have a ruptured disc, a tear and a tumor at L4-5 but they say the cant fix it because of my spine. They tell me the pain comes from within my spine and it wont show on Mri. The pain in my back, legs, hips, knees, feet, it just keeps getting worse. The very first neruo I saw looked at my mri and said I cant believe you are walkin...so I am thinkin about maybe a 3rd opinion...they wont even do a lamaticomy on me they say it could paraylze me...some docs wont even untether a cord because they are afraid of paralysis. So my life now is alot of pain meds daily. The docs want me to do a pain pump but I am not ready for that yet. This is a rare condition, some docs even say its a form of spina bifida. Good luck to you all I sure hope you find some relief in the pain. But the aniexty of dealin with this pain daily and not bein able to go and do alot is whats gonna get the best of me..
    Brenda
  • KambyrKKambyr Posts: 1
    edited 04/04/2014 - 3:57 AM
    I realize this is a rather old post, but recently my doctor has told me he would no longer continue the pain management program that has been getting me through life and I cannot find any other doctor that even believes how much pain these two cysts between my S2 & S3 are causing me. Before they found these cysts I had tried everything under the sun. Lyrica, shots, physical therapy, arthritis creams and medicine, he even had me on anti-depressants for a stint thinking that it was all in my head. The two years leading up to the discovery of those cysts were the most awful two years of my life. I cried non stop, I had no energy to do anything and I could barely make it to work anymore. I was struggling with the idea that the pain was not worth the effort anymore. And then when all else had failed and my doctor had suggested I go see a therapist, as a last ditch effort he ordered an MRI and the tech discovered these cysts, which were hardly noted on my paperwork. I was told by the doctor interpreting my MRI scan that these cysts were not the cause of my agonizing pain, but then what else could it possibly be? How likely is it that after years of struggling to figure out what was causing me this chronic pain, two cysts found directly at my point of pain, are not the cause but just a coincident? I've read up a ton on these things since then and I was happy with my program, it was making it so that I could function again, but now hes referred me to a pain management clinic and even written me a letter explaining he would no longer be assisting me with my pain management. Just the idea of going back to how I was is turning me back into the emotional mess I was prior to the their discovery. I'm freaking out which is why I'm searching out some sane people again that might be able to offer help and support rather than what I am now getting from my doctors again which is pretty much telling me that the chronic pain I've been in for years and years and years ISN'T caused from the two huge cysts between my S2 & S3 that are connected to my spinal nerves.... ARE YOU KIDDING ME WITH THIS? Sigh... A co-worker was also recently diagnosed with a synovial cyst on her spin, and for some reason even those they two types of cysts seem to have an awful lot in common, the synovial cyst is viewed as something that can cause excruciating pain, while the Tarlov is not. I don't understand it.

    Thank you for taking the time to read my post. Please let me know if you've found relief Butter and if so how it was achieved .
    Kels
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