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    Nerve root cysts..Can this be causing my pain??
    queenbts51 posted:
    Can anyone tell me more about Nerve root cysts( Tarlov cysts). I have constant pain in lower lumbar and sacral area and in my rt hip. My MRIs in the past 3 yrs have come back with findings of nerve root cysts. I have bulging discs in L3-4 and narrowing in L1-2. I have constant pain and numbness on rt leg but sometimes both legs. I have a spot on my lower back rt side that feels like if you touch that area it just makes the pain worse.
    I have been through the gamut of treatments. I have had epidurals, burning of the nerves( i dont remember the name of it- think its radio wave ablation ), tens unit, physical therapy, chiropractics, accupuncture.
    I have had MRIs, the test where they stuck needles into you to see what you can and cant feel, They have injected dye into my spine.
    For now the Dr has me on MS contin with a fast acting morphine for breakthrough. We have tried many things....Neurontin, muscle relaxers, Elavil, Cymbalta, Steroids both injected and oral, lidocane patches and I am probably forgetting a few.
    I try not to take too much of the pain meds so I supplement the meds with using the heat wraps or patches, sitting in the hot tub, mild yoga, swimming,and anything else I think will help.
    I have bought every stupid thing they sell on TV or in magazines to help with back pain, inversion boards, things that gently??? move your back for you etc.
    So I am asking what are nerve root cysts and can they be related to the pain I have. I brought this up to the Dr and he was not sure. I FINALLY have a referral to a neurosurgeon. Will he know what I am talking about??
    I would appreciate any feedback that anyone can give me. Thanks!!!
    bj1208 responded:
    hi and welcome to the support group -

    this is the first I've heard of this so I did google it - here's a website from Mayo clinic - hope this helps -

    what type of doctor are you seeing? Are they either an Orthopedic Spine Specialist or Neurosurgeon Spine Specialist? reason I am asking is they are the best at diagnosing and offering treatment options. Also, you should be seeing a PHYSIATRIST Pain Management Clinic - here's website describing what they do:

    they go deeper into pain management control and offer a wide variety of treatments.

    I am assuming from all the tests that you are seeing a spine specialist but just wanted to make sure.

    before purchasing the back pain treatment items from TV you should discuss these with either the spine specialist or pain management doctor as they can let you know if it would be ok to use them -

    I hope these sites help - when I googled TARLOV CYSTS there were several sites listed - you can research this and write down questions - your spine specialist or pain doctor can answer your questions and go over your diagnose and treatment options.

    ALso, if you feel that you are not getting the right kind of treatment you can always seek out another spine specialist and/or pain doctor for 2nd or even 3rd opinions. this way you will know exactly what you're diagnosis is (if other items are found on MRI's etc.,) and if there are other treatments

    Hope this helps - please let us know what you find out - take care - Joy
    pinkfloyd2388 replied to bj1208's response:
    I had a Tarlov cyst that caused Cauda Equina syndrome removed Jan 19th... worst thing ever. I had chronic low back pain that I thought was related to my connective tissue disorder. It's awful to deal with I know, but I wish I didn't have the surgery (had to or I could of continued to progressively get worst with incotience and lost of function below the Cauda Equina.) I had to on March 4th get a repeat surgery for Cauda Equina Syndrome AGAIN from fluid build up. Rarely does tarlov cyst grow that large though.
    littlerad responded:
    I too have had leg pain fro 6 yrs now. Have gone thru all the testing you have and actually went to Johns Hopkins to get a second opinion. They diagnosed the Tarlov Cysts, but told me most neurosurgeons dont treat because they return most of the time. At this point, 44 yrs old, i am not willing to accept that I have to take roxycodone, nycenta, soma, and restoril for the rest of my life just to continue to function. Sitting for any longer than 10 mins causes what feels like a knife in my periformis area down to below the knee.
    Yesterday I had my appointment with a neurosurgeon...he told me there was nothing they could do surgically. UNACEPTABLE! I am now doing more research and plan on trying to find one that will remove or inject them. I have three one on each of my S1,S2,and S3 nerves.
    Good luck as I am getting more and more depressed on this mess! Thanks
    bj1208 replied to littlerad's response:
    Hi Littlerad and welcome to the support group -

    In regards to this as being nonoperative I wonder if maybe the Spinal Cord Stimulator Implant or the Pain Pump Implant would benefit?! here are sites for them:

    Most times when we have issues with nerve roots there is an underlying cause and that is normally a disc(s) that are bulging and pressing on the nerve roots. so you may want to research that too -

    Hope this helps - Take care and thanks for posting~~
    ~~ Click on my name or picture and read my story ~~

    Take care ~~ God Bless ~~

    ~~ Joy ~~

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