Tarlov Cyst ? Nerve root block

Hello All,

I first posted on here a few months back as i injured my lower back october 9th, always been active, busy, work full time, a little overweight. Now having to rely on everyone else, can't drive, very very limited duties at work and short hours, feel like giving up some days. Can only walk for 5 mins then in complete agony, deep sitting, staying in same position, bending.Causes a lot of pain. In pain all day, starting to give me restless nights.

Specialist has referred me to pain clinic, on apr 6th-they cant give me any time period for waiting time which is so depressing nearly ready to give up work!  Although specialist never told me i have a Tarlov cyst which is next to prolapsed disc at S1. He thinks its the disc pushing on the nerve rather than the cyst although not sure how he knows which is causing pain.I looked up the symptoms and i have most of it. Im very annoyed he never told me i had this.

So if anyone has experienced having a tarlov cyst please let me know mine is small atm 14 mm.

Also what the nerve root block entails as that is what i will be having.Im going to call specialist to see if he can help speed up pain clinic app and keep nagging the pain clinic to see if that helps? I live in Hampshire so if anyone lives in same area and attends a pain clinic let me know what your initial waiting time was ?

Thanks

Diane

30 Replies

oldestnewest
  • Two weeks ago, together with Facet Joint injections, I was given a nerve root block injection. Since then the former almost intolerable pain has gone. I certainly felt that injection but although sharp and intense it faded immediately. My Consultant said  'Well  that hit the spot' .

    I live in Wales and my Trust had to 'buy in' the treatment, so my waiting time would be no indicator for you. The Pain Clinic staff were helpful but I refused opiates and although prescribed patches etc. Nothing really worked.

    We clearly have different 'root' problems (lol) but I can say it worked for me.  I changed my car to an automatic because of my hand problems but ironically I was most comfortable driving. My pain killer intake has dropped dramatically.

    Good luck.

    Carole

  • well at least your intolerable pain has gone-I hope they work for me too just another 16 weeks to wait lol.Did they try and fob you off then as they had to 'buy it in'?

  • It's been such a long road - 5 years in total. Physio, physio and more physio. Finally paid for an MRI to avoid waiting 9 months. Referral to the Pain Clinic etc. Rheumatology and more blood tests etc . It actually stirs me up thinking through it all. My life has changed so much that if I look back I get distressed about the delays. I actually believe that sometimes physio is not being offered as a positive treatment but as a delaying tactic.  I wasn't expecting a nerve block but facet joint injections, in the end had both sorts - backlike a pincushion.  I am happy to be where I am today but delay has cost me dearly in terms of independence and my former interests.  A good surgeon now and follow up is efficient but it seems to have been a fight all along the way. My Extended Scope physio was brilliant but limited in what she could achieve. That 5 years I won't get back!

  • Hi Dianne,have you had an MRI scan yet ? I have had nerve blocks done on 4 different occasions, it's a quick procedure and you are awake and tell them whenever they have hit the sorest point then they burn the nerve end's with lazer,it didn't cure me but then everyone is different. I ended up going private as the waiting list was too long and it cost £1500,I ended up having lumber fusion on my lower back but again no success I'm in pain 24/7 and on a mixture of pain killer's. If you're lucky enough to get the nerve block's it take's about 3/4 -1 hour and you get out a couple of hour's after that. I hope this gives you the answer you were looking,if not just ask again.Take care and good luck.Derek

  • Hello Derek,

    Yes I've had an MRI which showed the prolapsed disc and Tarlov cyst. I found out the wait time is up to 16 weeks! i cant believe it =its shocking. I rang around several private hospitals who quoted me in the region of £2500-I could probably afford about £500- so nowhere near that figure.So your 4 different nerve root blocks what was the time period in between, did you already have the second app booked do they assess you first then give another root block, just curious how it works once you get in the pain clinic. So they decided you neede surgery after the nerve root blocks didnt work as my specialist says 'its not something they would do surgery on'. I also wonder do they give you another MRI later on down the road as possibly the problem gets worse. Did you pay privately for the surgery then or waited on the NHS list?

    Sorry for all the questions

    Diane

  • Hello again Diane,I am 56 and my 1st block was 10 yrs ago so the price has almost doubled,if I was you I'd try a wee push even see your local mp.After I eventually went and paid I had to attend the pain clinic about a month or so after the block then it was about 6 month's later I got my 2nd but this time it was NHS,I didn't really get much success so was sent for another MRI and the surgeon decided to do the fusion but did warn me it was 50-50 and couldn't guarantee a 100% cure,but unfortunately I had problem's during surgery,I didn't know anything about that and had a 12 day stay in hospital with some very light physio,my OP was in September 2010 and I'm no further on than I was in 2006 whenever I lost a really good job due to the fact I wasn't able to do the work.If I was you I'd keep pushing and keep your money,I'm loaded with pain killer's and antidepressants,it certainly has ruined my life,I have been on BuTran patches 20mmg/1 weekly,you put these on and they release morphine slowly into your system every hour,they seem to take the edge off the pain but they don't take it away,ask your pain clinic about them,I have to take 1 meloxicam at night with 2 lyrica,1 sertraline and cocodamol 50/500 mg I have diazipam to settle the back spasms it's quite a cocktail but needed,I think I've missed a couple of item's but that's the most of them,I'd have to go and have a look.Try keep your will and push like mad or you'll get stuck on the waiting list,sometimes stretching the truth work's like going to a&e and try to get admitted, hope this help's you in some way,keep in touch,good luck and take care.Derek.x

  • Hi Derek,

    Thanks I think I will keep pushing didn't think of your suggestion of going A&E-not sure maybe. I think after reading RAYJAYC's advice i will speak to my GP and try and start trying out more stronger medication. 

    Thanks

    Diane x

  • Hi Derk, don't want to be a party pooper but butrans contains buprenorphine, not morphine. I know they're all basically the same form of drug, but butrans is slightly different. Sorry 🙏 xx

  • lol Sarah and there you go me thinking I was on morphine,just show's how well I read about what I'm taking,thx for keeping me right haha.x

  • Hi Diane

    I've got a 31 year back problem of the L5/SI joint.  I've had nerve blocks. Make sure they sedate you as they are very painful and scary.  They releave you for 1 month to a year, depending whether they actually got the right part treated.  I don't live near you so can't say as to waiting times. I feel your pain. Can't you ask for morphine?  Or atleast tramadol while you're waiting? 

    Sarah x  

  • Hi Sarah,

    31 years OMG how can i moan when you have suffered for so long, how do you cope? Are you able to work/continue with normal day to day stuff? I cant even do my groceries the walk around puts me in agony, household chores everything is affected because i cant cope /gets too painful. Im on naproxen, co-codamol(Which has given me chronic constipation which u dont believe so take a sachet to soothe this), then take 75mg of amtriptyline at 6pm-this makes me falls asleep withing 1-2 hrs. When i ring my GP next week i might ask if theres a different medication i can try-I had a course of oromorph at beginning of year as i got a trapped nerve in right leg and could hardly walk on crutches for few weeks-oromorph knocked me out.As Im still working yes on short hrs-4 a day i wouldnt be able to take medication that makes me drowsy throughout the day.

    A bit nervous of the nerve root block it must be agony when it 'hits the right spot' i will just look on bright side hopefully it will relieve my pain. Although im not getting my hopes up. I wonder what they will recommend if they dont work-my specialist said they wont consider surgery on it so i give up

    Diane x

  • Hi Diane 

    I cope, because I have to. 200ml morphine helps plus all my other drugs. Over the years you learn how to bend and stretch to release some pain. I go through he'll every day.  I'm I'm the middle of a cluster headache at the moment.  The other name for them is suicide headache.... For obvious reasons. The pain is so bad you think what if??? Maybe jump off a cliff? Get hit by a bus? Then I remember my kids need me so I carry on suffering. It's a difficult life but atleast it's me and not my kids that have to deal with the pain xx

  • Diane I see Sarah has said make sure and get sedated but you can't be as you have to be awake to tell the surgeon exactly where the spot is and trust me you'll tell them,I yelped like a dog and I think said the f word lol,ask for the detail's from the pain clinic don't just sit and say nowt,ask ask ask.Byee

  • Hi Derk

    I was fully sedated on my last procedure. The surgeon knows which nerve needs ablasion through xray and you're bodily movements when he hits the right nerve. You can definitely have it done under full sedation. I promise 😀

    Sarah x

  • I wasn't fully sedated during mine? 😕

  • Hi Esined

    It depends how much sedation they give you and even if you're not fully sedated, as long as you're of the mind set that you know what's happening but sedated enough not to care what they are doing to you, then I'd say you're sedated enough. I had a huge cyst removed from my lower jaw. They were talking to me all the way through, I knew everything they were doing but didn't care. I actually thought the whole thing was quite funny. I'd say I was sedated enough 😀

    Sarah x

  • Hi Diane

    From reading your medication list, I'd say you need to make an appointment with your GP to get some stronger meds in the interim period before you get to your pain clinic appointment.

     You're on Naproxen, Co-codamol and Amitriptyline, correct? Maybe ask for one of the nerve pain drugs like Pregabalin or Gabapentin. The side effects can be tough at the beginning but once you find your therapeutic dose, you should get some relief.

     Also worth asking for Tramadol for when the pain really kicks in and then, as you've had before, Oramorph.

     I understand the need to 'be alert' but you have to now make the decision; do I take less medication to enable me to work (although, I'm sure the pain interferes with your concentration) but be in pain OR do I accept this is happening and start some stronger drugs to help relieve my symptoms???

    Only you can make that decision but once you've started and worked through side effects and then seen how the drugs affect you, you may find there's a balance that fits nicely into your lifestyle.

     If you're needing to use the Tramadol & Oramorph, then unfortunately, the decision may have been made for you?

    Have you tried Diazepam or a 'sleeper' like Zopiclone for a good night's rest/sleep?

    There are then the 'patches' that people have suggested but you need to have taken opioid medication quite a bit before you'll get given these as you'll be classed as 'opioid naive' and they'd be way to strong for you!!

    It's a game of try it, like it, use it I'm afraid. Lots of combinations to try but you do have to weigh up your life/work balance & quality of life.

    Duloxetine is an antidepressant but has nerve pain properties too so that's another option but your GP would have to consider which medications to start you on toavoid mixing the wrong one with another.

    I know the waiting lists are really long but there's not a lot you/we/I can do about it so in the meantime, go see your GP for some more help!

    RAYJAYC

  • Hello RAYJAYC,

    Thanks for you very long and helpful message, the physio first advised amtriptyline as a nerve pain drug. As far as i know the amtriptyline puts me to sleep i take 75mg at 6pm usually by 8-9 im zonked out.I must admit up until a month ago i could sleep well just changing positions . Im now starting to have restless nights. I think i will definitely ask GP for stronger painkillers and just trial and error them like you said.

    The questions that you said are so true and makes me think realistically I want to carry on working but it causes me to be in more pain. I had a long chat with my boss who is very understanding and says if i need a day off here and there or i need to go and have a rest during shift thats fine. Honestly i dont think it will make it better. I work at a childrens nursery.Im on short hours, cant lift,change nappies, move stuff, cant sit on floor, bending down is a chore, move slowly. etc I feel useless at work which my boss knows but she thinks Im doing ok and at least Im a pair of eyes still supervising the kids.

    I then feel so bad a crap mother as I can't do and take my daughter anywhere-she is 11 so understands why but i just cant plan for the future like summer holidays, clothes shopping which she wants to do.Its just crap.Also Im fully aware that a lot of people probably all has had to go through same situation waiting months for appointments.

    I will continue to wait and keep fingers crossed and hope the nerve root block works.

    Thanks again Diane

  • You have one of the most difficult jobs to have to deal with pain as well! As you'll see from my profile I used to be a registered paediatric nurse so I know how busy looking after children can be; plus in a nursery it's lots of babies/toddlers all together so quite 'manic' at times.

    Although your boss is supportive, you're not able to fulfil your own needs of wanting to be the 'proper' nursery assistant that you want to be. Like you say, it's probably time to be be realistic and decide which route to take now. Your boss may be happy to have you working there whilst on stronger medication if it improves your work!! There has to be consideration of your ability to safely carry out your role however should you start them; it's by no means a reason to stop you working but in the initial stages you may need time off while you get toknow & used to the stronger drugs. The only way to know is to try it I always say!!

    Good luck with your GP appointment; like you've said, you now really to let him/her know how bad it's gotten and you need help! 

    RAYJAYC

  • Hi Diane

    Just re read your post to me sometime ago. For your nerve root block, you can ask for a sedation. Don't have it done awake. It's really not pleasant. It's a hell of a lot worse than having an epidural and you can hear and feel them tapping /banging the needle in. My surgeon was an absolute twat, didn't sedate me enough the first time, I begged him to stop and top up my sedation. He told his staff that I was just talking in my sleep. Oh no I wasn't! I was wide awake and he had me lying on the table wrong, making my back bend the opposite position to what my back can withstand.

    Sarah x

  • Thanks for all your help and guidance regarding the nerve root blocks.I got a definite answer well sort of-I have to wait up to 16 weeks!!! :( Not happy Im so angry If i have to wait all that time it will take me up to nearly a year to when i first injured myself. I rang me specialist and GP today both said we dont have any power/authority over pain clinic-Private would cost in the region of £2500 i dont have that kind of money, cant get a loan. I am thoroughly upset/pissed off/ feeling very low.

    Diane

  • I would save the money.  I did the nerve block 3 times with a couple weeks relief the first time and then down to a couple of days for the next two.  It's important they have the correct nerve, so won't sedate you.  Mine lasted around 20 minutes for treatment,  then free to go afterwards (you won't be allowed to drive). 

    Suffered from the 2 prolapsed discs for 15 years and counting.  On a large mix of meds but it is difficult for them to hit the right mix to help.  Remember you need to be taking these consistently for 3-4 weeks before they work their way properly into your system. Chronic pain teaches you patience,  I'll certainly say that 

    Sarah 

  • So so true Saz,been there done that.

  • Oh dear thats not good it didn't work.That's why Im not going to get my hopes up it will work and i will be back to normal lol. Mt boss sometimes asks me after we've had an extended break like our easter hols or this bank holiday wkend and thinks the extra rest will work wonders a miracle will occur and im back to normal.

    Thanks

  • Yes, the boys of constant hope sounds familiar.  My own boss has been getting intermittent back pain for the last few months and had discovered a while new level of sympathy. 

    Good news is you don't need time off after the injections.  A few hours rest and you're good to go.  You may have a bit extra pain for the first two days,  this is normal and so don't panic.  

    Really good they work for you 

    Xx

  • Sarahk1000 ..... i agree ...! Also for some reason I have a reaction to sedation, which is swearing non stop which I get told is non stop horrendous words I cannot control! So embarressing! I can hear myself saying them, but cannot stop .....words I never knew existed to be honest!

  • Unfortunately people that don't have your/our pain can't understand the connotations of it; a two week break won't 'mend' you!! Wouldn't that be nice!! 😤

    Their genuine misunderstanding of your condition means that they think there's a treatment that can cure it. It doesn't register with them that any drugs, therapies or treatment may still not make you better. You can only explain that you're having a treatment that may solve it but may not!!

    RAYJAYC

  • Hi tarlov, the hospital should have told you about the cyst in the first place. What are they going to do about the cyst? Is the cyst in the way of injection site and if so can the pain injection be done? The only way to get seen a little quicker is by constantly telling your docter to tell your consultant how much pain your in and you really can't cope. Unfortunately they are not bothered weather you lose your job or not so you need to make it clear to them how much pain your in. I don't know about waiting lists in other areas but I do know that in oxfordshire it's longer than anywhere else. Pain injections did work for me but not for long but you may be one of the lucky one's. If you can afford to go private for  the first pain injection hopefully that should see you through until you see your consultant then your next one will be on the nhs. Thats what I did. X 

  • Hello,

    The cyst is a Tarlov cyst not my screen name lol, Yes i do need to find out more about the cyst. Im going to speak to my actual gp on monday and really lay it on thick. Unfortunately i am in no position to afford £2500 which i have been quoted. Although im hoping my gp might try and do something

    Today is a good day i have bad and good days like everyone im sure thanks for advice I never thought if the cyst would be in way of injection site will definately call specialist to find out.

    x

  • Hi

    I totally agree with Derek's post, in fact it could have been written by me, have and gone through exactly the same. ....spent £1000 on a private chiropractor, which was a total waste of money and I'm convinced it's made matters worse pain wise! Con artists in my opinion!

    Also agree with Cmc43. ....not enough done by docs when first started ......just gets worse and worse. .....and I swear the docs think you are telling porkies for years about the chronic pain! !

    But, having moaned at all that, everyone is different, and when in pain you're willing to try anything to ease it!

    Good luck, whichever way you choose to go! x 🙋

You may also like...