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Help on how to cope

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:33 AM in Depression and Coping

I am hoping someone out there may have some pearls of wisdom for me and in the hope to meet other people who are going through similar problems

Back in February I feel down ONE step at the bottom of my stairs and the bottom of my back got jarred on the corner of the step. I immediately was in extreme amounts of pain and found it very hard to walk. I spent 4 weeks going back and too to my (now previous) doctor who kept telling me that i had pulled a muscle, I had suffered with back pain in the past and this was nothing near it. He kept giving me stronger doses Diazepam until it got to the point I didnt know where i was. Then, one day I stood up and lost the feeling in my right leg completely and was screaming with pain. My husband took me to the out of hours doctor who thankfully took it seriously and admitted me to hospital. After an MRI all i was told was that there was damage to a disc in my back, was given a physio appointment and sent out on crutches dragging my right leg behind me.

The feeling in my leg eventually came back until a month later when it went again and also the feeling around my buttocks and genitals. I was immediately put back in hospital and given an epidural, which did nothing. I kept getting told that the doctors were not fully equipt to deal with my problem as I would need to see a spinal expert in Walton. After much complaining, a doctor referred me to both Walton and Gobowen Spinal hospitals. To cut a long story short, I have DDD effecting L3/L4, L4/L5, L5/S1, which also have large central prolapses in, the L4/L5 disc is actually pressing on the spinal cord and narrowing the area behind the disc. I also have DDD in C7/C8 and T2/T3 which isnt causing any symptons at the moment. The symptoms from the Lumbar discs are: Perminant loss of feeling in my toes on the right foot, imtermittant loss of feeling to the right foot, calf, knee, buttocks and genitals, radiating pain across the hips, back of legs and feet, stiffness and cronic pain in lower back.

I have had 3 MRIs, a CT, a CT Mylograph, Nerve conduction studies, EMC, Lumbar Puncture.

Now, i am able to walk better, but still need to use walking sticks and a wheel chair for longer journeys. I am 24 and my whole life is consumed with pain and mobility problems. An active life style and a career as an IT engineer has been ruined. I am told that I will not be able to have surgery until my symptoms get worse!!! As if not having cronic pain and loss of feeling to large parts of my body is not bad enough!

I really need some help and advice of people as to how they have coped with similar problems. No one is able to tell me if i will ever get my old life back and it is starting to really get at me now, i have been on nearly every drug imaginable to cope with the pain, i dont want to be taking medication for ever. I am told I may not be able to have childen because of the stress it would cause to the "fragile" situation in my back but they are not willing to fix it. I am really at the end of my teather and dont know how much more i can take of this

Please, if anyone can help, i would be very grateful

Thank you


  • its so difficult when youre young and starting out to be disabled by pain and poor muscle control. i feel your sadness and remember when i was young and had the difficulty that you have now.
    its also more difficult when it happens suddenly and you go from being just fine to that terrible situation now.
    for me it gradually improved. i did physical therapy, started doing a lot of bikeriding and eventually got back on my skis. i was able to manage a business and carry on a fairly productive life.
    because of glandular problems and more back problems my working days ended about 30 years after my first injury. it was a struggle but i did have a life. it didnt end in my twenties. you sound like the kind of person that will fight to the end. no give up in you. your attitude will improve and either on its own or with help of surgery you will move on to fullfill some of your dreams. think about how you do battle. and be proud of it. and know that there are others, like me!, who are chearing you on
    >:D< pete
  • Hi Beccy,

    I just joined this site. Like you I have 3 discs in my lower back - same ones actually! And one in my thorasic spine. I am 25 and found out about this all a year and a half ago. I have gone from being very active - dancing, rock climbing and I should not run or jump every again - yet still need to loose weight (which has crept up on me due to chronic pain and being inactive).

    Like you I have tried lots of drugs and haven't found any relief from them. They just don't seem to work effectivley.

    I have had surgery recently, and am not awaiting the results of another MRI, as the surgery hasn't seemed to have an affect. But I am still trying!

    It gets harder with chronic pain to manage catching up with friends and going out. Spending a whole night out at dinner (stressing about what type of chair you have to sit in) and then if friends want to go out dancing - where you then stress about finding a chair to sit down on in a club - and then have them ask all the time - are you having fun? It is sometimes easier to avoid it!

    Anyway - I think we could share some good tips to being young and moving forward with this!

  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. first let me tell you that we have had "spineys" with successful pregnancies!! <:P don't think so far down the road yet. you are not ready to have children anyway, are you? it does seem as if all our lives are comsumed with this "chronic pain." ~X( alot of us use pain medications effectively and have pain control as well as a much better lifestyle without so much pain. =D> a good pm might really help you with this.. :-C please hang around the forum a bit. you will make new friends and get good ideas on how to make your life better.. :D i hope to see you around! =)) Jenny :)
  • Pete is thinking right along the same line as I do. That is, that we really do have a lot of say as to whether or not we "get our life back". If I had listened to the docs and well intentioned people around me, I would have been afraid to do anything and would have wound up miserable and never accomplishing another thing. Instead I got angry about the entire situation and decided to take matters into my own hands. I refused to give up on myself. Yes there are a few things today that I can't do anymore, but there are far more things that I can do and plan to do. I plan to live life as much as I can for as long as I can. Does it hurt? Sure it does, but I push through it knowing that I can suffer the pain a lot easier if I have a good attitude from living my life, then if I gave up and just let the pain run the show.

    The issue with the loss of feeling should trump the age issue. At least that's the way I see it. I'm not a doc though so it's just a personal opinion.

    What country are you in? Can you get a second opinion?

    Whatever you do, don't give up on yourself! I found that by not giving up on myself, the doctors I've dealt with are far more motivated to go that extra mile for me.

    Welcome to Spine Health

  • RangerRRanger on da rangePosts: 805
    Hey Beccy,
    I don't think anyone could have said it better than "C" did here. Must be why she has earned so much respect from me and others here at Spine-Health.
    Never give up and never look back!
    Take care,
  • Hi
    I am glad I am not alone, it makes it all so much harder with the pain and feeling like a recluse when you see and hear about all your friends going out and about! I am trying my best to go to work as much as possible, i am on the IT helpdesk at the moment so at least I am sitting, but after a day of work, pain and pain killers, im so tired I just crash. I have been put on some new drugs recently that work on nerve pain but they make you sleep so much :s
    The question I hate is "Are you feeling ok?" sometimes the pain gets to me so much I just want to shout no! :) but fortunately I have some good friends but no one can understand how much this can strangle your life until they have experienced it and the thought of this going on for the rest of my life makes me angry with myself - if that makes sense? :)

  • Thank you all for your advice
    I have had 3 different hospitals look at me now and they are saying i need the operation as the L4/L5 is pressing into the spinal cord and that the operation needs to be done pretty soon encase the disc was to crush any more of the spinal cord, but no one is willing to do it because of my age :s I live in the UK
    I have times when I feel, "I can do this, I'm not going to let this beat me" but when the pain is bad and all my pain killers make me so tired and very sick at times, I just cant see any future and wonder how I will get through this. The option I can see is the operation but then I am being told that so many things can happen from it, ie the op makes no difference; the op could paralze me, that makes me even more scared. They have said that they would have to fuse/replace the discs from L3 down to S1, I would lose a lot of movement in my back. Its like fighting fire with fire
    I am so grateful for your responses, it helps to feel like I am not alone with this
    Thank you
  • i was just reading about your situation again and feel you should keep looking for a surgeon who has a solution to your problems. if the two surgeons youve seen were orthopedic then search for neurosurgeon who specializes on the spine. just because 2 surgeons dont want to operate doesnt mean you should stop looking for one who will operate.
  • "If this was me I would be getting more opinions, NOW" Like Pete sez, just because two say NO, does not mean they all think that way.

    My next thought is, Why do they think it is "ok" to let the cord be under pressure just because you are still young?! I'm not saying surgery. I simply don't have the expertise to recommend that to anyone. But, I think there is very likely something that can be done to help you if there is evidence of compression.

    I don't know enough to have an answer, I sure am not a doctor. Though I have said I would like to play one on TV..... :O

    I sure hope you can get an answer and advice from a doctor you feel comfortable with and soon.

  • dilaurodilauro ConnecticutPosts: 9,842
    there are various views on what it is like to have spinal problems at a young age and what will be the long term impacts.
    First, there are many others who started with spinal problems at your age or younger. I started having spinal problems in my early 20's and had my first spinal surgery at 28.
    I am now 59 and have had a very good career in the IT business. I just retired after 34.5 years with IBM. The number of spinal surgeries I did have to go along with the number of flareups did create some ripples along the way, but I had to do everything I knew on how NOT to let my spinal problems impact my technical career.
    Did I get my life back? No, I inherited a brand new life. Sure there were changes, there were challenges, there were restrictions, but my best advice to you is to keep a positive attitude do all the things you are suppose to do to maintain a healthy spine.
    So many times, I read that patients talk about being too young for surgery or having to wait to their condition worsens. To me that is the furthest from the truth. Spinal problems have never discriminated in regards to age. You can never be too young or too old to have spinal problems. And depending on the severity of the spinal problem, surgery should always be available.
    Some doctors dont like performing surgery on younger people because they feel that perhaps conservative treatments may work and they just might. When it comes down to a situation as to if surgery is in store, you need to do yourself a favor and get second opinions.
    How do we all cope?
    Take one day at a time and look forward to the next day with excitement and enthusiasm

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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