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New diagnosis...confused...am I doomed?

nowwhat44nnowwhat44 Posts: 47
edited 06/11/2012 - 7:51 AM in Spinal Stenosis
Hey everyone. I am kind of a mess right now. Long story short, I had a l5-s1 fusion done abut 4 years ago for a major disc herniation. It was great for about 3 years, I had little to no pain. Then about a year ago I started getting pain in my right hip and I thought for sure I had a hip issue. After a couple different docs and a recent CT Myleogram my doc says that now at the l4 level I have stenosis caused by arthritis (overgrown bones and ligaments). For the most part my pain is manageable with over the counter drugs. But I have been reading all kinds of stuff on stenosis today online and I read nothing but horror stories. To the the point I broke down, and I am 36 year old man who does not get upset like that ever. It has all scared me to death to say the least! My doc didn't go into much detail and gave me a script for Nueronitn. I don't know what to think, if I am going to get worse? Does it always get worse or can I stay the same? It's only at the one level, is that better? Am I doomed to eventually get so bad I need surgery? I have had a back problem for 20 years now and I thought I was doing good for once, now this! Is there such a thing as a good story when it comes to this? Like I said I can manage my pain now, some days I feel none. I just don't know what to think. I see a future of misery and I am so young still. Anyone?
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Comments

  • Hello, I feel ur pain.. I am a 37yo male with severe stensosis in my cervical in moderate in my lumbar along with 2 herniated disc in my neck and 2 in my lumber.. I also have buldging disc too.. I dont know what to do either.. The neck appears to be more managable then the lumbar.. I feel for u because uhad the fusion and now this.. i have no had anything yet but my lumbar pain has been for 2 months and not getting better.. Wish i could help bro, but u not alone.. I dont know how i can keep working like this.. i see a nuero tomorrow..
  • i have had back issues since i was 29 {now 44} and in pain 24/7 and waiting for an ALIF on L4/L5 /S1 and maybe L3.i have been told that pain is going to be a major factor in my life and even with the surgery don't expect the pain to go away .and as i am still youngish i may require revision surgery in about 5/10 years ..so in answer to your question .yes .you are probably going to suffer with some sort of back pain for many years ..i know that's brutally honest but sugar coating it would be just like lying to you ..my consultant {who is one of the best in the UK } told me that once a spine becomes as bad as yours and mine and requires big surgeries pain and problems are inevitable .even if you get an initial good result .the pain and incapacity will eventually come back in some shape of form {that's why back pain is the number one problems in the western world .its a hard situation to be in and to deal with constant pain all the time is almost impossible .just try to take each day and nigh as it comes and not get too p1553d off when things dont go your way .just try and rest out the bad days and make the most of the good ones {even though they are few and far between}.i have found that a high end TENS helps {along with strong pain killers ..oxycontin ..also a good recliner and a good bed and probably one of the best items i have purchased is a tempur millenium pillow in large ..its a strange shape but fits in a normal pillow slip .also i sleep with a memory foam pillow in between my knees that also helps .everyone that i have recommended the millenium queen pillow to have been impressed ..if you decide to get one shop around on the internet as prices vary widely.tempur wanted 100 pounds bur i found another site called my temper and it was about 60 pounds .i hope that i have given you some good ideas /sorry i can't fix your pain ..if i could i would be a very rich man and a happy one at that as i would fix my self too !
    t
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • I appreciate the responses, thank you. I have had pain for the last 20 years so I am used to that already. I guess I was just mostly concerned with this particualr condition. IS there such a thing as being one of the "lucky" ones and it never really gets any worse? Some of the sites I go to say that it doesn't always get worse and is rarely debilitating. They also say that these forums are usually the worst cases and not always the norm. Makes sense that people who are doing ok would not post right? I don't know, I am just scared for my future. so much I have left to accomplish and don't want to imagine not doing so. Preaching to the choir I guess.
  • Hey nowwhat... My father had a diagnoise of SEVERE stenosis in his early 40's, then later it progressed to Spondulitic #2 or something like that.. Not sure if stenosis caused it, but I am walking in his shoes just earilier(lucky us!)

    It would be interesting to know how your parents are? Most of my friendss with DDD diease(stenosis etc) their parents are messed up tooo.

    I have also read it does not alway progress but hell only time will tell..

    MY FATHER HAS REFUSED surgery even though Docs say its a must.. his is a lucky one cause his pain is managable but he is living wiht a drop foot

    take care!
  • Hey guys. I agree about you will only read usualy the worst of the worst usualy. Most that have had good luck with surgery would not have much time to post. I am also more then 20 years in to this pain situation with back issues and more so the last 7 years after having the surgery.

    My in put on this would only be is that if you can manage right now as you said nowwhat without serious pain with over the counter meds. Why take the risk of making it worse as i did. Just as before your 1st surgery you knew you had to have the surgery i am sure when pain was so bad you had no choice i am sure.

    If the dr tells you the surgery can worsen the condition and you are doing not so bad right now. I personaly would not take the risk unless i was told without having the surgery you will surely get much worse. If it was a minimal invasive procedure i would maybe consider it.

    My point being is that you cant over worry about what could be if it might not ever get worse is my point. But then again thats only my opinion after surgery made me much worse. If i was able to manage my pain. I would have never agreed to have 2nd surgery or the 3rd. Good luck on whatever you decide. And hope you can avoid another surgery and pain stays far away from your life.

    That goes also for you dax0007. Alex"
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Thanks for the input guys. I am much more calm today than I was yesterday, that was the day I got the diagnosis after all. I keep telling myself that there are a lot of people living with this condition and not all are having horrible issues and like you guys said the others are too busy or not worried about posting online anymore. Maybe I will get lucky and will be able to manage like this for good. The hip pain started about a year and a half to two years ago and has only mildly gotten worse if at all. Seems like most pain these days comes from PT. I am always sore for a while after my PT and sometimes at night if I sleep wrong. I am dedicating myself to losing 20 lbs and getting maximum back strength back. Staying mobile and active is key from what I am told. I am not overweight but I could lose 15 lbs and we all know any less weight on the spine is good. The stenosis is only one level so I guess that is good. you guys are right, worrying will do nothing but make my pain worse and I have not real control over the future.

    Oh and to answer the question about my family, there is no history I am aware of. Mine is the result of a injury over 20 years ago. Had it fused in 2007 and this new pain began in 2009. Pain has not really gotten too much worse which I hope is a good sign. I mean does the bone and ligament just stop growing after a while or never stop? This is what I don't know.
  • dilaurodilauro ConnecticutPosts: 10,065
    read some of the articles that Spine-Health provides:

    All Conditions

    DDD
    Degenerative Disc Disease

    Stenosis
    Stenosis

    Chronic Pain
    Chronic Pain


    Fibromyalgia
    Fibromyalgia

    Sciatica
    Sciatica
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Have had it for 8 years. I don't have any technical mumbo jumbo to pass along, in fact the docs don't tell me squat about my condition without me prying. I can tell you is my pain is "for me" almost to severe level. My pain means no work that cannot allow breaks and random days off, with lay down time lol...yeah so. One thing I can say >>it has not gotten worse<<. Even if I did something crazy like lift a lot of weight, it gets worse for a couple days and returns to same state as before. I thought there was an operation to release pressure and frankly, that is what I came here to look for. Info on that operation.

    Good luck to you.
  • Hey Brad, there is certainly surgeries to help. What is causing your issue, discs, arthritis?
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