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Any other young people with DDD or Stenosis???

TiffanyTerrorTTiffanyTerror Posts: 44
edited 06/11/2012 - 7:25 AM in Degenerative Disc Disease
Hi everyone,

I was just wondering if there is anyone other young people around these boards with DDD or Stenosis?

Im 22 and have been living with the condition since I was about 13. This has been an uphill battle since day 1 for me. Doctors refused to believe my pain could be something serious as a child....so it went un-diagnosed until my teens. Unfortunatley I have not been able to find any literature, or any one else around my age with these problems. I know I can't be the only one. :<

I saw a spine surgeon several years ago who told me basically to live with it, or have surgery. My surgical options were fusion or disc replacement. I decided against surgery. I find it concerning that there are no studies or articles about these procedures for young people. I've read plenty for people in their 30's,40's 50's etc. My worry is that no one seems to have any idea how these procedures will affect me in 50 years. Granted no one has a crystal ball but still. :)

So is there anyone else out there that has had procedures young? Or been diagnosed young?

I would really appreciate any input, Im supposed to be seeing another surgeon soon and getting a new MRI.

We shall see.
:<

Thanks everyone.
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134

Comments

  • started having back pain when I was about 13 or 14. The xrays and mris looked fine but I was in considerable pain most of the time, especially at school having to sit in classes. They really couldn't figure out what was going on. I had some sciatic symptoms ... nerve pain in my left groin, hip and butt but it never went down below the knee.

    I couldn't stretch and still can't. Everyone would have some stretch theory involving stretching the hamstrings, but every time it made my sciatic pain worse. Another one that always got me was sitting in a chair and just bending forward to stretch the low back. The following day I was a mess.

    I had some nut job doc at stanford put me in a cast that went just above my genitals up my chest for 6 weeks. I can't believe I let him talk me into it. In fact I went off to college that way and was the talk of the freshman class. Needless to say it didn't help.

    Sometimes the pain is tolerable and other times it gets really bad. Some of my flare ups last months and I'm at least a month into one right now. I ended up getting a discogram (something they say you shouldn't do unless your considering surgery - the doctor didn't mention that part, and I didn't do enough research.) The result was a diagnosis of annular tears at L5/S1 and L4/L5 with ddd on those levels (super common - annular tears lead to rapid ddd) and the level above.

    When I think of all the $ and energy that went into getting me relief, with absolutely ZERO to show for it, I am amazed. I've tried accupuncture, yoga, mackenzie method, massage, rolfing, accupressure and PT. I've had numerous mri's, a milogram, facet injections and at best, I left the treatment in the same pain I went in.

    A medicine that has been helpful for me has been tramadol. Nsaids like Ibuprofin don't do a thing and I don't want to start getting into harder hitting opiates for fear I'll like them a little too much.

    I'm 38 now and amazed that I've been dealing with this for so long. It's hard for other people to really understand the challenge of sustained pain and how consuming back pain can be. I often feel really alone and misunderstood. It's hard to put on a smile or look attentive and interested when your back is throbbing away at a 7 or 8 on a 10 scale.

    I have the same concerns as you regarding the future and surgery. The conclusion I've come up with at this point is not to have surgery. Although the pain is brutal sometimes, surgery (and for ddd, it's often invasive surgery they offer) just seems like such a crap shoot and nobody seems to get just one.

    I get by on hope ... hope that in the not to distant future they'll discover ways of solving spinal problems better than they have. I have moments in my days where I'm not in pain and I try to take time to enjoy and appreciate them.

    Are you an athlete? Was there an activity you were doing when you were 13 that you feel may have contributed to your problem or was there an accident? I didn't have an accident, by the way. It just became sore and got worse. Do you have any nerve pain that radiates into your leg/s?

    I'm sorry to hear you're going on 10 years with this and aren't getting any resolution. Thanks for your story and please keep us advised with your decisions, their results and things that give you relief.
  • Thanks so much for your reply.

    It is just ridiculous to me how the medical profession is so SURE that young people can't have any legit problems. :W

    I landed on my tail bone incredibly hard when I was younger, as well as jarring my back once in gymnastics. I'm not sure if that is the cause or if its genetics. My mom has a terrible back too, as well as other family members. Ah the gene pool right? :))(

    I have horrid radiating pain. Down both legs, hips knees etc. Ive actually had 2 episodes of having to use my grandmothers walker to get around for a few days because I could only walk completely bent over. During thoes episodes I was taking Relafen and Flexerill which worked fairly well after taking them for a few days. Only trouble is that I am highly sensitive to medication. I lick a vicodin and Im out cold and in a haze for the next day as well. I hate it.

    Im waiting on a callback from the ortho to set up an appointment. I haven't had an MRI or seen anyone for it in about 3 years and I know things have gotten worse. I now have back spasms constantly..sitting, lying, standing..you know the drill.

    I agree with you on the toughing it out without surgery...my only worry there is that I hope I am not setting myself up to be worse by letting the problem worsen. Your damned if you do and damned if you don't you know? Which is why Im looking for someone who has dealt with these cases in young people...i need a sort of...what is best in the long run sort of opinion.

    Thanks again so much for your response...I hope you get some relief from somewhere soon. :)
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  • Hi, i am 31 years old and have had back problems for years but was diagnosed with DDD before my birthday this year. Mine is what my doctor called an exceptional case, I have bad discs in my lower back my middle back and I have four in my neck. The one in my lower back is pinching nerves to my legs and causing serious problems, that one next month they are going to go in and fix. My middle back is painful but the least severe of all of my degenerated discs. I have four in a row in my neck that are creating all kinds of heck too, this one is causing numbness in the back of my neck radiates pain down my arms an causes numbness in my hands. The plan for mine is after my lower back heals they are going to fix my neck. They are going to replace my bad discs with a synthetic disc replacement so I am hoping and praying that I will have some relief from this pain that is running my life.I am sorry you are troubled with your pain as well, but know that you are not alone being young.
  • I was 14 when it started and I'm 22 now. I have some pretty significant DDD at L5-S1, L4-L5, and L3-L4. Those three discs are bulging, with the disc at L4-L5 impinging a nerve root down my left leg.

    I'm going to suggest avoiding surgery. I'm not a doctor, so this isn't medical advice. But I would tell you to do some research on regenerative therapies for intervertebral disc degeneration. In particular, mesenchymal stem cell therapy looks interesting. I'm personally holding out for this technique, it looks more promising than anything else. I'm trying to get involved in the research, both to assuage my fears and help push it along faster.

    About the damned if you do, damned if you don't. There's a grain of truth there, but consider it a grain in a bushel. Neuropathy, as crummy as it feels, is indicative of the nerves being impinged but not cell death. If the tingling gradually goes away, that's more indicative of cell death. Being uncomfortable is not a sign of cell loss. And yes, with repeated abuse, your nerves will atrophy, or eventually die, but the timescale is pretty long, and we're both pretty young.

    MSCs look really good at regenerating the nucleus pulpous, possibly restoring disk height to 'normal'. Restoring the nucleus should be sufficient for normal disc function, but may not be sufficient. Discs bulge (for the most part) due to intra-annular tears. This implies a need to repair the annulus - sort of. The posterior portion of the annulus (the part that impinges upon nerve roots) can be excised without a loss of disc integrity (provided the nucleus is sufficiently strong).
    Anyways, I'm babbling. I think about this too much.

    Write me a message if you want to talk about regenerative therapies or just vent.
  • Hello I just got diagnosed with DDD today. I am 26 years old, I have never had any accidents or trauma to my back. The doctors are avoiding surgery for now because of my age. My worst disk is L5 S1 with it pushing on the nerves that affect my right leg. Also L4/5 and L3/4 are also not doing welll either. I have scoliosis but not severe and was diagnosed with that as a child so I thought my random bouts of pain were from that. Recently the pain has gotten worse and had not gone away so thats when my new orthopedic doctor sent me for an MRI. She was shocked. She said the conclusion that she can come up with right now is that it is genetic but no one in my family has had it this bad that we know of. So I am of to start PT for my back to see if that helps at all.
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  • dilaurodilauro ConnecticutPosts: 11,348
    Spinal problem. DDD= Degenerative Disc Disease. For starters it is not a disease. DDD is basically the aging of our spines. Almost every person by the time they reach 25 will show some sign of DDD. For some people it will happen sooner, for others later on in life, but its basically inevitable. Some articles written about DDD refer to it as 'The Graying of our Spine, just like our hair will turn gray'
    There are other situations in which people getting it sooner and more severe. There have been articles written about the genetic aspect of DDD, but to me, since we all will eventually get it to some degree, how much is genetic?
    The part of genetics may play a role for those people who get it at any early age (13-15). What also can bring it on more rapidly is trauma or spinal surgery.
    The good news about DDD, in most cases surgery is not required. Surgery is only used for the more server cases of DDD. With approved exercise and NSAIDS many people can manage and control DDD so that they can continue to go on with the need of pain medications.

    Spinal Stenosis is similar only in that depending on the severity of the case, surgery may be the only answer. From articles that I have read, its hard to really identify if the Stenosis came after a result of surgery, thus the narrowing of the spinal nerve canal or is it genetic.

    Bottom line, spinal problems do not discriminate with Age, You can never been too young or too old to have to deal with the chronic pain of one of many spinal problems.

    What does happen, is that in younger people some medical professionals shrug it off because "They are too young"
    That is unfair and unjust. If you are in a situation like that, my advice would be to find another medical professional who will look at your condition and not use your age as a stumbling block.

    I also believe the sooner spinal conditions are addressed, the better chances for more successful recovery.

    On the flip side, there is always things to worry about.
    "If I am 20 and have disc problems what will I be like when I am 50"

    Well, I can give you some insight.
    I started with back problems when I was 15. At 19 I had my first disc related incident that because of my age, it was overlooked. After years of dealing with various back problems, I finally had the first of four lumbar surgeries.
    As time went on, I had 3 cervical surgeries and now I am living with 4 herniated thoracic discs.
    Im 58 now.
    I am slower, its takes me a while to get going in the morning, and its not easy having to deal with chronic pain all your life. What is so very important is to have a solid support system as the years go on. This is something that you should never have to face alone.
    And I have found that one of the key's to dealing with all of this is to have a positive attitude and a never-give-in approach. Look at chronic pain as being the "Beast". It can be cruel, sometimes you never know when it will stike, but always feel that you will never let the Beast win.
    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
  • My 15 yo daughter was just diagnosed with DDD and a herniated disc at L5. The neurosurgeon said he could perform a fusion or complete disc replacement on her. I'm not very thrilled about that at such a young age. Besides, two months ago he said she's too young for surgery but now he's OK with it.

    I don't want her in pain but I don't want her to have surgery either.

    I've been checking out many different avenues that might help her. Inversion therapy and exercising are the main ones. I had also read an article about Gulcosume and chondritin (sorry about the spelling) for DDD. The study was done on an older person (50's I think) and they took the Gulcosume and Chondritin for two years and the before and after MRIs showed the previously degenerated disc had increased in size. I'm not saying this is a cure all or if it even will work but looking at the alternitive (surgery) I'm willing to have her try anything first.

    There was another procedure, an OP-1 injection by Stryker Biotech. It's supposed to help regenerate degenerated discs. I just found out about it from my dad but I haven't reasearch on it yet.

    I hope some of this might help. I gives me some hope for my daughter.

    Darren
  • Hi,

    I had problems as a teen that ended in a discectomy at the age of 19. Had some good and some bad years in between, and just had a two level fusion last week at the age of 27. Doc gives the disc above these 10-15 years. I will take that chance and hope for the best!

    One Love,

    Stephanie
  • wow... this is my first time on here (so thankful i found this place!), and i just wrote an entire blurb and it all disappeared when i tried to post it--- so here I go again.

    I had a spinal fusion at 14yrs. old for Spondylolithesis L5, i'm now 20. The surgery went great i was able to get back to playing sports-- no pain, problems... etc. I now have pain on the back of my skull and chronic migrains... my neurologist just took MRI of my lower back (b/c i insist the pain in my skull is related to the pain in my back) and just this last week (yes, right before Christmas) told me i have DDD and minor misalignment... so it's back to my spinal doctor for specifics. I don't know what my options are... i have done a TON of research... i mean disc replacement? another spinal fusion? I'm only 20!!

    sorry i got off on a tangent.

    i know what you are saying... it is so frustrating to be in this position. most of the research is directed towards older people---

    my spinal fusion was a good thing... i am starting to doubt if i should have been as hard core w/sports-- Varsity Basketball, Sports Condtioning Aerobics, kickboxing... etc. as i was... I just don't know anymore. I don't know if i regret it b/c i think that would be a waste of time. I loved those times and the things i did, i love being active... it's who i am. i feel trapped.

    I'm angry. But i have hope! I do have hope.


    I really hope that this new surgeon you are going to see gives you some hopeful-promising news and the MRI goes well! Keep your head up! : )

    do you have any advice about my newly discovered DDD? I have no clue have bad it is... until i talk w/my back surgeon.

    ~Suzanne
  • Hi, i am 29 and have a badly herniated disc at L5/S1. The Neuro said that disc and the disc at L4/L5 are pretty much shot, but didnt say if it was DDD or didnt give it a specific name. He said there are 2 options. Microdiscectomy or fusion. I am choosing the Micro just to get the sciatica pain out of my leg and the disc removed off the nerve. I dotn have much if any back pain right now, but have in the past and has come and gone for about the past 10 years. I am hoping the Micro works well enough to get me walking and moving around normally again. I then want to explore other passive options to "Save" whats left of the bad discs and control them from further deterioration. I havent had any accidents or major trauma to have caused this. I feel its somewhat hereditary as my dad has always had a bad back, but i dont ever remember him having the problems i have. Anyways, i go in next Wed. to have the Micro. done. I do get tired of everybody saying that I am too young to have back surgery. Why am i too young? What constitutes being too young. I mean, if theres a problem and its not going to go away without surgery, then that tells me that you cant be too young. Yeah, theres conservative options like therapy, but when i went, it only made things worse. Then they wanted to do an epidural. Well thats just a glorified expensive band-aid that overtime will cause scar tissue and create future problems.
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