Tarlov Cyst Diagnosis, any help/experience appreciated!

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This topic contains 4 replies, has 4 voices, and was last updated by  AnnieD 2 weeks, 6 days ago.

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  • #24060

    fionamwylie
    Participant

    Yesterday, my MRI revealed quite a large/medium size Tarlov cyst on my lower spine.

    I have been experiencing acute and chronic pain in my lower back, groin and urinary infrequency to terrible proportions for the last two years and three months. I also have been told my legs are weak by an Osteopath by trying to push up against his hand. The ONLY position I am comfortable in, is lying down. I can’t sit or bend forward without experiencing excruciating pain. Though my pain levels are now on an 8 from waking to a 9 in the evening. Just lying in bed. If I do anything more, they rocket.

    I was told that the cyst was too small to be the cause of my pain – (and was not given dimensions of the cyst, though have now asked for these). I have since read that Tarlov cysts are ‘symptomatic’ if they present symptoms – irrelevant of size. As I have SO many of the ‘symptoms’ and we have been told everything else is ‘normal’ – apart from an injured coccyx from when I was 16 – I have to be very suspicious that the cyst is the cause of my pain.

    If anyone has any experience of these cysts and treatment, I’d be VERY grateful to hear of anything! So far, the only efficient Dr who operates efficiently on these, lives in Dallas, Texas. I am very worried, depressed and sad. x

    #24061

    fionamwylie
    Participant

    These are also known as perineural / perineurial, or sacral nerve root cysts.

    If anyone knows of a UK doctor who can diagnosis, please help me.

    I really am terribly worried and by what I’ve read on the web, I should be, as delays can cause irreversible neurological damage….. and paralysis.

    My Consultant knew nothing of them as they are so rare and so un-talked about.

    Hoping everyone has as pain free a day as possible.

    #24062

    Jan Sadler
    Keymaster

    Hi Fiona

    I would think that one of the big teaching hospitals would have someone who knew more about Tarlov cysts.

    Hopefully to reassure you, I have one of these cysts and I have severe pain in my lower back and neck/head area. However, I had these pains for years before the cyst developed, so I am pretty sure they are not the cause of my problems. My doctor said Tarlov cysts are very common and they don’t usually even tell the patient about them as they normally don’t cause problems.

    Re the osteopath’s comment, if you’ve been lying down for a while now, I expect, like with many of us who need to rest now and then, your leg muscles aren’t as toned as they were, so that could be the reason for his comment.

    Try not to read too much into internet reports as they are rather like reading all the side effects of medication! If we took notice of all of those we’d never even take an aspirin! Having said that, we do need as much information as we can gather so we can get the best treatment and understanding of our pain.
    Jan at PainSupport

    #47090

    Caz
    Participant

    Hi I was diagnosed with a tarlov cyst at s3 level some years ago. I have had surgery in the past year for a separate back diagnosis of tethered cord. Since the surgery I have symptoms of low back pain and pain in my buttocks and anus.i also suffer Constipation and when I pass a motion I am in excruciating pain which makes me vomit and almost pass out with pain. It also sends shock pain and like yourself I only get slight relief lying on my side. The pain is now getting me down and I’m not sure what will happen next as all I read is mostly for the USA and seems not much is done or taken seriously in the uk. I feel your pain and worry

    #47117

    AnnieD
    Participant

    Hi Fiona

    Have a read of this – https://www.tarlovcyst.co.uk/ and this one -https://disqus.com/home/discussion/tarlovcystcouk/tarlov_cyst_uk_74/

    I saw the UK doctor privately as I thought this was the cause of my pain as everyone only ever looked at my lower back, and said a small disc protusion couldn’t cause such issues. So could it be that other areas have not been checked? He said no to tarlov cyst being the cause, and referred me to uro-gynaecology via my GP, whereby I was finally diagnosed 4 years later. I had 2 large cysts, had buttock agony, could hardly sit, could hardly walk, always limped about, and had bladder/bowel incontinence. It turned out not to be the case and I was diagnosed with pelvic nerve damage after going through bladder/bowel tests.

    So that’s my experience…. Hope this helps! Stay strong & take care AnnieD xx

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