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Diamond14
Diamond14

Hi any help would be great. I had an accident 3years ago which resulted in 2 slipped buldging discs compressing bilaterally on my nerves. He pain is so intense & continuous all the time, I am on a high cocktail of drugs. I have had many different procedures such as nerve blocks, epidurals facet joint blocks, neucleoplasty & regular nerve root blocks. These help me move a little better for a few weeks then that's it back to square one but the pain never goes. My disc is no longer compressing the nerves apparently but the pain is getting worse, I have been incontinent at times & unaware of this as I have no control or feeling, I get pins & needles & numbness all the time radiating down both legs. I also get really bad muscle spasms where I cannot release my hands or feet until they ware off. My pain consultant says it is always going to be like this & nothing more can do other than continue with the blocks every 6months. Is anybody else in this situation? I've asked if they could remove the discs fully but said no & I don't seem to be listen to when I go to appointments.

Thanks

0 likes, 27 replies

27 Replies

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  • aur448
    aur448 Diamond14

    Posted

    Hi Hun

    I feel your pain I'm in a similar scenario.the pain get worse.lastyr I was told I need fusion on spine and nw I get told the disc seems OK and not pressing nerves which was the case last Sept.

    I'm not sure myself anymore.i also had nerve bloke done and facet joint injections 3wks ago it didn't help coz the pain is forever there and when I tell the doc he looks at me baffled so I feel like I'm crazy.

    I'm trying to get another opinion perhaps u should as well. I'm running out of options but I do know that the spine is something not to be taken lightly I mean Doctors are only human and also Base diagnosis based on your side effects and pain radiation.

    Incontinence is not something you want to take lightly I did read up on another post someone mentioned Cauda Equina may be check it out dol.

    Hope you find some resolution I'm also still searching.

    Much love xxx

  • Laura3333
    Laura3333 Diamond14

    Posted

    Hi I'm in an identical position to you. Had a fusion 30 years ago, and since then it's been continuous pain, various spinal injections, all of the same as you.

    Horrendous pain in both legs, plus burning and pins and needles, I decided a while ago I was not going to put myself through the injection thing again, and have been coping with tablets, Gabapentin, naproxen, plus diazepam and an assortment of others. got as far as morphine, but it was no life.

    I have other medical problems, arthritis in spine also, and both knees replaced.

    I just try to atay as active as I can, it helps once I get into a routine, if you can cope with the initial pain it causes.

    Not much of a life, living with spinal problems, but it's the only one I have.

  • linda1718
    linda1718 Diamond14

    Posted

    Hi there, I don't have a name and I'm not going to call you Ice Queen!

    I know exactly how you feel, been there done that got the Tshirt! 

    Do any of your doctors know about your incontinence? That's a red flag normally and they would operate. If I was you I would be looking for my nearest surgeon! I am on a real cocktail of drugs including Morphine and I rue the day I started on Morphine but that's my problem not yours. You don't mention surgery, have you had any surgery? I had a disc fusion quite a few years ago and I'm actually going for another one on 6th October which I'm hoping will be my saviour and I can get off this cocktail of drugs. If you haven't had surgery I would seriously consider it if I was you. Please keep in touch and up to date.

    linda x

  • albero
    albero Diamond14

    Posted

    Hi Icequeen,

    I'm so sorry to hear about yiur pain and conditionand ggenuinely feel for you.

    I'm surprised that your pain consultant is not worried about your incontinence, the first thing I was told by the spinal consultant at the Trauma & Orthopaedic dept was that shouldiI lose control of my bladder and/or bowel control, I should rush to the E.D.

    infact

  • Diamond14
    Diamond14

    Posted

    Thanks everybody.

    I am also on morphine 120mg sr twice a day & sevredol 40mg upto 4 times a day, amyitriptaline, depression tablets. I have had over ten plus of the epidural nerve root blocks. In March last year I had part of the disc removed via my pain specialist. I mentioned the fact I have times when have no feeling & I continent & he as no concerns as my nerves are not being compressed as this was ruled out, I've been ref to gynea for this. I keep asking if they is surgical option as I can't continue like this I am only young this started in my late 20's. The blocks help me move a little better & not as stiff but other than that don't give much release. I'm due to see him today & want to ask him if I can have anything else other than just the blocks but last time he said no & that this is how I'm going to be. Thanks

  • cynthia70714
    cynthia70714 Diamond14

    Posted

    Icyqueen14,

    Wow! That's crazy something has to be going on with the disc, I had a discetomy because I was in pt in the pool the girl threw on the jets and it blew out the disc onto my nerves after a year in pain my attorney got another appointment for a better surgeon for a ganglionectomy and fusion the pain is still there because they waited to long so I'm a failed back fusion( it felt like my leg and foot was on fire for a year) the doc tried to put the nerves back together it was to late but I did lose function too. Pls keep on them before you are ruined for life.

    Good luck

    Cynthia

    • Diamond14
      Diamond14 cynthia70714

      Posted

      It's rubbish because it as affected all aspects of my life I'm depressed badly which I've never been, it's affected my relationship we have no physical side at all, the doctors just fob you off & say continue with these blocks that's all that can be done & I will have pain for life & get on with it basically but it's no quality of life at my age, he asked what I want him to do I said give me a new back & I got not possible there's nothing that il help other than blocks for some relief. I know I will always have issue with this but some relief would be nice & better quality of life. I'm due an pip review assessment on Monday at home & worried about that because they see you are you & can't see anything so assume that nothing is wrong when in fact it is. My idea of having more children is scrapped as I could not physically manage it

    • linda1718
      linda1718 Diamond14

      Posted

      Ice Queen you have got to ask for a second opinion! Are you in UK or USA? I have never heard anything so ridiculous and he shouldn't be allowed to get away with this! Please do yourself, and your wee family, a favour and try to get a second opinion or can your GP not do anything re surgeon? I could go on and on as I'm so appalled at this, no person should have to go through this. Good luck 😱

    • Diamond14
      Diamond14 linda1718

      Posted

      Thanks people, the consultant says that I am always going to have long standing pain & will never go away but to treat is just regular blocks. I'm sure they must be some type of surgery they could try do to help manage symptoms a bit better. I am uk based. I'm seeing gynea in Nov for the incontinence, this is not all the time but when it happens I'm not always aware & it's embarrassing. I told him that my legs are giving way more frequently & the cramps are all more frequent & taking longer to release back to normal & regain feeling when this happens, also mentioned the pins & needles that radiate down my legs & in my hands, my soles of my feet feel like they are been set on fire but he doesn't seem bothered about this other than stating he will do blocks again. Thanks

    • cynthia70714
      cynthia70714 Diamond14

      Posted

      Icequeen14,

      I inboxes you a message. Cynthia ( Cindy)

      Hang in there

      We are here for you to vent scream yell whatever works, we try and do our best this is one great site to help people with pain connect and help one another out. 😉👍💞

    • cynthia70714
      cynthia70714 Diamond14

      Posted

      I just read that you have burning sensation, that is caused by a piece of disc on your nerves sweetie you need a good cat scan MRI and have them look real good, I told what happened to me, and after surgery the disc cut my nerves in half, they might not see anything but you have to push them to look at the nerves in that area were it would effect your bladder, omg, I feel so bad for you cause I know that feeling of hopelessness.

      Pls pls keep on them before something worse happens sweetie

      Cynthia (Cindy)

    • Diamond14
      Diamond14 cynthia70714

      Posted

      Ive had regular scans & they say it's ok & no cauda equine which is the main  concern, I keep saying my legs are giving way all the e time & the increase of pins & needles & my feet & hands turn into like claws that won't realise for a while then go numb, I also get the burning under my feet like I'm stood on fire. It all seems to go in one ear & out the other. I had more blocks done yesterday & will see how I get on but I know from past they don't do much. I know I cannot go on like this & they must be some surgical operation out there they can do but will not inform me thanks 

    • TreasureNurse
      TreasureNurse Diamond14

      Posted

      Seriously find a new doctor who understands the importance of releasing pressure off the nerves. Sometimes things don't show in MRI's because of the low resoultion of the machine. But that does not mean you don't have the problem of nerve compression. The MRI did not show mine either but it showed in the CT SCAN. They did one with a medication injected that would show any nerve compression as they tilted me on the table. Immediately it showed. I had surgery shortly after and it alleviated the problem. You don't want to allow them to convince you there is nothing that can be done. If you have to come to the U.S. to be seen. This is your life and not theirs. Don't allow them to corner you into believing there is nothing that can be done. If you wait too long there will be permanent damage.

  • TreasureNurse
    TreasureNurse Diamond14

    Posted

    You may want to check around with other spine care facilities. It sounds like you may need a specific surgery to alleviate your situation. Ask for copies of your MRI's and CT Scans. Read them yourself. It sounds like you have nerve root impingement. See an Ortho Surgeon for another opinion. When I asked for copies of my MRI and CT Scan suddenly I saw for myself that there was nerves compressed that the doctor did not tell me about.  I had ongoing severe pain. So I found a new doctor who saw in 5 minutes what the problem was and did the necessary surgery. If I were in your place I would read about Cauda Equina Syndrome and Nerve Root Compression and go into your doctor armed with wisdom so they have to address the issue. If they dont address it, find a new doctor.

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