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desperately seeking fellow sufferers :(

staceyboosstaceyboo Posts: 9
edited 06/11/2012 - 8:54 AM in New Member Introductions
I am from the UK and was diagnosed at the age of 13 with spondylolithesis L5. I was offered fusion surgery way back then, but I refused it. On the basis that I was a frightened child. 20 years later and now that L5 bone is now fractured into god knows how many pieces. I am still undergoing scans and specialists appointments to find out. The NHS is not at its best at the moment, and I have been told that there is no type of surgery available for me. Only pain management for the rest of my days, which just depresses me. I have a 1 year old and an 11 year old son. I did have a baby boy back in 2009, but he died shortly after being born.

I have just had a course of pain relief with a tens machine, which didn't do anything, I have an appointment with an acupuncturist in a week or 2, and if that dosnt work I will be offered the injections. I know I have lots of other problems around my L5, but no one is making it clear what's going on. I have nerve compression as I suffer pain in my right leg,my mobility is terrible and if I drop anything then it stays there until someone else can pick it up. I feel useless around the house and hate having other people do the jobs I should be doing.

I am on Gabepantin, Ibuprofen and Amytriptolene (sorry if spelt wrong. Its stopped a great deal of the pain, but not helping me improve my life. I need help with excersizing and mobility, but the support just isnt there.

I just want to make contact with others who suffer with the same amount of daily,24 hour pain that I do, as no one really understands me.

Thank you for taking the time to read this.


  • I wanted to welcome you here to SH. You have been dealing with this for such a long time.

    You have come to the right place for support and answers to questions,as well as being able to chat with people who "get it." I too suffer with pain 24/7.

    Have you had more than one opinion? If not please try to get a second,third, from a fellowship trained ortho or neurosurgeon.

    Wishing you all the best!

    >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i have several spiney friends from your area, northern ireland and wales!! it is so nice you dropped in!! i have been a pain patient since i was 15 myself.. i can hear how much you are suffering and waiting is really difficult!! i am sorry the tens unit did not work.. the injections do hold out some hope for your pain... they work for many people.. i have tried acupucture and it worked for sleep for me but not for pain.. i do hope you get the desired results! if not then you have the injections to fall back on and you should count that as a real positive!! please be patient and let the doctors work with you and see what they can do to help.. you are not out of options yet!! good luck to you! stop by anytime.. pm me anytime you feel like a chat! Jenny :)
  • hi stacey my story is just like yours i had a c3 c4 c5 c6 fushion and spinal cord damage and 4yrs later i have scoliosis in my lower back and now thay think i could have a disc compersion waiting 4 a scan AGAIN but i am on the same medication as u witch u did spell right but i drop things all the time i have a 12yrs old son who dose help i am always in pain and thats the way it is alway gona be and mobilty problems too so i understand wht u r goin through
  • Hi Stacey,

    I am new to this. I am 53 and from the uk. I had a discectomey 5 years ago and have had pain in my leg ever since. My calf never stops twitching and i have alot of pain. For some reason the sciatic pain has become far worse over the last couple of weeks. I think maybe my disc has herniated again. I feel very isolated and in dispair. I understand completely your comments about not been able to do jobs around the house, it makes me feel so useless. I can't imagine what it must be like coping with the pain when you have small children. When i get to bad i just want to curl up in bed. Not the right thing to do i am told, but sometimes it is impossible to stand or sit,

    I am on Gabapentin which seems to be helping with the pain and some other pain killers which don't seem to help.

    I also feel that no body understands and i wonder how i will be able to continue like this. I use to be so active. My doctor says i must not look at the past or the future, just the present. Which i think is good advice. I am learning to take each day as it comes.

    I hope when you have the results of your scans and see the specialists that they will be able to give you some answers. I have always found the specialists to be very good even though i agree the NHS is in a bad way.

    I am at the present having heat treatment and manipulation on my back and find this helps But also find it to be expensive.

    It is nice to be able to talk to someone who understands how i feel. To most people i just put on a brave face and do let's pretend. I think you must be a very brave person to have put up with this since you were 13. It sounds like you have had a rough time of it.

    Would like to hear from you.
  • Hi Stacey,

    I am not suffering from a spondylolisthesis, yet I have cared for many people that suffer from the condition including my sister, Ashleigh. Stacey, I would like to recommend that you seek out the opinion of an upper-cervical chiropractor. These kinds of chiropractors very gently treat the entire spine without any popping or twisting to realign it and therefore remove certain stress patterns that may be part of the cause of your pain. They do not treat the spondylo specifically but rather remove any stress from the spine as to create an environment that stops your condition from getting any worse and can possibly make you far more comfortable in the process. I do know that there are studies that show how women who are on a daily regimen of ibuprofen are at a higher risk of death from cardiovascular disease. The study was released at an American Association for Cancer Research conference in
    Anaheim. "Risk was highest among ibuprofen users who were nearly three times more likely to die of cardiovascular disease than non NSAID users."
    If you would like to try something new that is very gentle and scientific-they take pre and post xrays to verify changes-I know that there are upper cervical doctors in the UK.
    I wish you all the best and quick healing!
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