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young scared and confused about ddd

jennamariejjennamarie Posts: 1
edited 06/11/2012 - 8:56 AM in Degenerative Disc Disease
I'm 23 years old and 6 months ago after silently suffering for 8 months learned I had ddd along with spinal stenosis. I ended up in the er from passing out from the pain. I had issues with pinched nerves in my past that I kind of self diagnosed myself. The first I remember feeling the unexplained pain was when I was 16. At first I believed it to just be a pulled muscle or something. Lasted a few months then when I was about 19 the pain came back more severe. I ended up seeing a doctor who prescribed me lyrica after only 2 days of taking it I felt no pain. After that I didn't think much of it. With a little research I came to the conclusion I must have ruptured a disc at my old job. I delivered semi truck parts which required a lot of heavy lifting. Last year in may/June I started feeling the familiar nerve pain in my butt when I would stand but would go away after a few steps. I tried my hardest to watch my movements and try to fix it on my own. At first I hadn't noticed anymore nerve damage as I already had some numbness from before. Around Christmas time I however started feeling more area of my leg numb as well as the pain increased and became constant. I never had much back pain except for when ide "air hump" as my friend would call it. I would literally have to keep my back on the right side to walk but left to sit. Which when I adjusted looked like I was humping the air from my sudden jerk when it would "pop" to the other side. The pain in be back got so intense from doing that I stayed on the left side and walked hunched over to keep it from slipping. The way I describe it sounds funny but I'm sure at least someone will understand. The nerve pain and back pain steadily increased until one day I threw up. I remember feeling like the pain was going to kill me and passing out. After coming to I had to give in and see a doctor. Since I had no insurance the er doc gave me fentanyl and sent me home with delaudid. Neither really eased my pain. I was scheduled for an MRI the next morning thanks to the er doc whom I feel I owe my life to. I saw the neurosurgeon only hours later. He informed me I had a severe case of ddd and spinal stenosis. He also scared me by telling me he hadn't saw anyone under 60 with a back as messed up as mine is. Every disc between my l2 and s1 were degenerating. Three were ruptured and pressing on nerves. Three days later I went into surgery where I had a microdiscectomy on those three discs. I have no insurance so he gave me a discount and told me to get insurance and was pretty confident I won't make it to 25 before having to get pins and rods put in. I have no clue if that's the fusion surgery I've heard people talk about. I'm not sure how to feel about all this. I'm so scared to live my life in fear of the pain. At the same time though I'm in denial and act as if nothings ever wrong. Since my surgery 6 months ago I've only had the occasion nerve pain. My back usually only hurts in the morning unless I've been on my feet a few hours but its nothing I can't handle now. I'm not sure to think. I don't know if I'm overly scared or not scared enough. I'm so lost when it comes to my back and not sure what to think. I'm very secretive about it and refuse to talk about it. I think that's why I decided to join the forum so I could actually say what's on my mind. So thanks for reading and I'm sorry about any errors in this post I'm typing this on my phone and its quite difficult to proof read it.


  • DonnabeDDonnabe Posts: 597
    edited 04/11/2013 - 6:47 AM
    Hi Jenna,

    Sorry to hear about your back issues. My surgeon told me I was the youngest person he has ever seen with a cervical issue like mine. I told him, I would have rather used those odds to win the lottery!

    If you want to chat or have any questions please feel free to PM me.
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • a lot of us have been told that we are/were too young to have such bad backs. this kinda sucks as far as i'm concerned because it seems to negate or discount younger people who might have some significant things going on in their backs.

    anyway, i'm glad you are doing better. that is always good to hear. when i had my first surgery at which time i was informed by the surgeon about having the worst back blah-blah-blah, it was 12.5 years until i had my next surgery. basically, you can lose a lot of time living if you spend a lot of time and energy worrying about "what ifs" about your back.

    sometimes we worry about what may never happen. we worry, we fear. but what is fear?
    F alse
    E vidence
    A ppearing
    R eal

    basically it amounts to expending time and energy worrying about the worst possible outcome when in fact it may never come.

    i was going to delete this post here because upon rereading it, it sounds ridiculous, but i'll leave it here in the event someone might rezinate with something i said
  • Hi Jenna;

    I'm glad that the surgery has helped you, that's really great! The good thing is that you have youth on your side, and even at 23, you haven't stopped developing yet.

    Yes, I think we've all been told that by our surgeons, your back is more messed up than any 60 year old; in my case it was I've worked on 80 year olds who had backs in better shape than yours - that was when I was 35, 38 now. Because I've heard so many others say that their docs have told them the same sort of thing, I always wonder if maybe that's their way of validating our pain for us? I don't know.

    As for DDD, well, everyone has it, most aren't symptomatic, and for sure, people aren't generally as bad as us until they are older. It's just the aging process, but is accelerated if there's been trauma and injury. Have you looked through the information side of the site, like on the Conditions or Treatment tabs? There is a ton of info about DDD and stenosis and how to deal with it there.

    If you are doing so well this far out of surgery, I personally (and this is just my opinion only, certainly not professional) that you should be fine. You're young, go out, live your life, have fun, and don't be scared. Of course, don't overdo anything and be careful, (I wouldn't suggest going out and playing tackle football or anything, lol) but don't let this stop you. There are many people who have surgery and are able to get back to their old lives and activities, we just don't see that many of them here as they tend to leave because they are out living and enjoying life.

    The thing to remember is that once we stop "living", it's harder to bounce back. Depression sets in, fatigue, lack of energy, loss of strength, all which can do a number on our muscles making it that much harder to get out and do things and enjoy life. Keeping a strong body and mind is so vital in recovery and getting back to a "normal" life. If our muscles are weak, they are unable to support our spines. Exercise like yoga, tai chi, aqua-fit or other low-impact activities like that are great for both the body and mind.

    Anyways, that's about as good of a pep talk that I can give at 4:30 am, so there it is, lol. I wish you all the best, and hope that you can get out and start enjoying life as any other 23 year old should be! Take care;
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Hi Jenna,

    I am new here-but needing support like you. I have to say that you're a very brave person. I have DDD & Stenosis and felt confused too as to why the docs cant do something other than give pain pills and injections...I'm on a fentanyl patch but it isn't enough so I have to take norco on top of it. I recently have been having another issue with what I have researched must be from the piriformis muscle inflaming the sciatic along with it already being inflamed from other issues in the disks.
    But I wanted to tell you that you aren't alone. People like us are always wanting to be strong and that's why we can't show our weak side to others. But here...we can all support each other because we know that others understand what it feels like.

    I hope you will not think too much about tomorrow but just enjoy as much of the day you have today with as little pain as possible until the next flare. I'm also learning to picture myself doing something I love in full physical form with no pain.This isn't easy but when it is practiced, makes a difference.
    Hang in there and feel free to write to me if you want a pal.
  • Hey, I'm not sure what there is to be gained from posting this, but i'm going to do so anyways. I thought reading jennamarie's post was valuable, so maybe somebody can take something from mine or offer me some tips on how they've been coping. probably i am just here because i don't want to feel like the only person going through this. I understand that degenerative disc disease is fairly common, and many people consider it to be a natural part of aging, but I think what is uncommon is having it at my age. I was diagnosed with degenerative disc disease at 26 (although I was hospitalized at 25 with 2 herniated discs) and am really struggling to figure out how to leave with my condition. I have always been very athletically inclined, with a preference for basketball and beach volleyball. After about a year of rehab and physio I am able to compensate for some of the pain, but I can no longer play sports at a high level, which has been really hard for me. I take anti-inflammatories on an as-needed basis (usually 2 or 3 times per week) but am happy to have gotten off of morphine and muscle relaxants for the most part. (I still have muscle spasms that prevent me from sleeping from time to time, so in rare instances I will take the muscle relaxant but I hate doing this because it makes me feel groggy the next day). I have lost feeling in about 1/3rd of my left foot from permanent nerve damage, although I still have normal motor function. On my right side, the pain has been increasing steadily, so I think it's just a matter of time until that side goes too. I have a desk job, but fortunately I was able to negotiate working from home with my employer, so often I can rest my back by working on my bed when the pain is particularly intense. My last employer knew about my back problems but I have managed to keep this from my current employer's attention (as an aside, I was denied long term insurance coverage on account of my degenerative disc disease). I think all of this is generally shitty, but I think the thing that has been affecting me most is in my personal life. I feel like having sex has become challenging for me (not impossible but really not the stress-free kind of pleasure it once was). Standing up puts pressure on my back which can cause really distracting pain and discomfort, or it causes my muscles to tense up. Anyways, it's stressing me out and I feel like I am battling depression and insomnia to boot (I am not clinically depressed however, and generally consider myself to be an optimistic happy person; I just feel way older than I should feel for my age I suppose). I feel like it's hard for other people my age to really understand the day-to-day struggles of dealing with the disease, and it can be tempting to tell people when I am in pain, but that would be literally every single day and I don't want to be THAT guy who is always talking about X, Y, Z. I think it turns people off of you if you're always complaining, so I try my best to just suck it up and carry on. I guess everyone has their own problems to deal with I'm no different in that sense. So yeah, here is my plan for the new year: try to start playing water polo and drop about 10 pounds to reduce the strain on my back (I'm 6'3 and my weight typically fluctuates between 195 and 200 pounds) . I've never played water polo but I think this might be a solution for me, at least in the short term, to maintain exercise without taxing my back too much and still being able to play at a competitive level. I've done my fair share of swimming lengths in the pool for rehab, and frankly it's boring as hell; hopefully a bit of competition will motivate me. Anyway that's my story, hopefully I can hear some good news/advice to inspire me. To anyone else who might be struggling with this or who took the time to read my post I feel for you and I guess we're in this together. Best of luck to you.
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