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PAINFUL DDD, 35 years old, Dr. says no to fusion.

AnonymousUserAAnonymousUser Posts: 49,623
edited 06/11/2012 - 7:31 AM in Degenerative Disc Disease
I am 35 years old and have had lower back pain for about 10 years now...diagnosed with DDD 8 years ago. My pain has gotten to where it's constant...can't bend over, stand...walking is a chore! I had my first lumbar epidural, it lasted for 3 days now the pain is back. My Dr. said there is "no way in hell" he'd do a spinal fusion on someone my age. Anyone else been told that? Spinal fusion that bad?
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Comments

  • Welcome to the board. I am sorry for the reason that brings you to us. You are very young to have had back problems for such a long time already.

    There have been others your age and younger who have been told similar things. Also, comments about how the doctors do not believe that they are in pain because they are so young....

    Just like hip replacement a number of years ago, the patient had to be over a certain age before she/he was considered a "candidate" for surgery, because at that time, the lifespan of the artificial hip was only about ten years. If they implanted it too early, it would not last for the life of the patient.

    I think there is a similar attitude about fusion in people your age and younger. Not only do you have a lot of life left, but it is assumed that this age group would be more active than older patients. With fusion there is a worry about the "domino effect." This is where the vertebral levels next to the areas that are fused eventually go bad too, as they take the brunt of the stress from the fusion. (The hardware may screw into them, they pick up the brunt of any torque or movement in that segment of the spine, etc.) This is a valid issue for any of us that have fusion, but your chances increase the younger you are, just due to how much longer you might have the hardware, etc.

    The most valid reason I can think of for waiting is the hope that technology will improve. For example, they are hardly doing fusions in Germany any more. They are becoming obsolete because they now use the artificial disk so much instead of removing the disk and adding hardware or a spacer as they still do in the U.S. I know there are ongoing trials here for ADR and also for some newer things that are in the process of being tested.

    Hope you hear from some of your peers on the board who can share their experiences.

    Please post with your questions and comments...and, again, welcome.

    xx Gwennie
  • Good luck and get other Drs opinion like NeuroSurgeon also. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I was told no to any type of surgery at 22 (23 now) for DDD as well. Now a year later it's much worse, and I need something, anything done.
  • I am working on core strenghting and stretching but the pain really sucks. I was told the same exact thing and I find it good that surgeons arent quick to act just to make a buck, but depending on the level of pain we are all in, something needs to be done.

    For me, I would need a three level fusion because in between two bad discs with DDD I have a disc that only has a bulge and slight DDD and it would only be a matter of time before that went too. I dont know what information this post give you, but I just wanted to let you know you are not alone.

    Hang in there.....Mitch
  • I guess if you're on the young side, you're expected to handle the pain better?? :S

    I don't really understand because I know several people that had a multi-level fusion when they were in their early twenties. The surgeries lasted until well into their forties...so I guess you're looking at getting 20+ years out of a surgery, IF YOU ARE LUCKY.

    Have the doctors told you how old you have to be to be a candidate for fusion?? Have you asked what you are supposed to do in the meantime?

    I would think you run the risk of causing further damage by doing nothing....
  • ADR Is really just getting started in America.....give it time...
  • I'm really sorry about the pain you are in, have you gotten the other two Epidurals for your lower lumbar I know that sometimes it takes all three to make a difference. I'm 33 and I have been told that it would be the worst mistake if I got surgery also. I have DDD in 4 discs in my lumbar. I'm hoping that I can hold out for the ADR. I just got done with my second Epdurial and it has taken some of the pain away. I still have numbness in my right leg every once in awhile, but the doctor said that it wasn't doing any damage. I hope that you can find some relief, I pray that there will be a new surgery that can help people with multi levels that won't put them in more pain after the surgery. My prayers will be with you!!!
  • I have had DDD pain for the last 12 years or so and went through all of the conservative treatments and was told that although I needed surgery I was too young. I am now 42 yrs old and just had an ADR this past Thursday. It is too soon to tell whether this surgery was successful or not, my doc says 2 to 3 months before we know for sure. If it isn't successful, he will go back in and fuse. Although on the MRI it shows that I have compressed discs at 3 levels, there was only one disc that was causing me pain. A discogram was done to determine which disc was causing this pain. Please don't give up hope, and don't take the word of only one Dr. as others have said, get a second and third opinion if necessary.
  • One of the reasons why I had a 2 level fusion was because of severe DDD in L4-5 and L5-S1; I was 34. The decision to do one varies from doctor to doctor since they all have their own opinions on the matter. I also recommend to try all conservative measures before having a fusion done because it's major surgery and nobody can give you 100% guarantee that it will take the pain away. I was told artificial disc replacement wasn't for me due to multilevel degeneration all over my spine. The worst of my problems is in the lumbar and that's why it hurts to sit, stand, walk, drive, etc. No matter what I do it always hurts and I also have nerve pain and muscle spasms to deal with.
  • i just had spinal fusion & lunbar transitional surgery done on March 25th. i too had 2 discs fused and was installed with a new lunbar system called dynamic stabilization.
    so far so good. i only wish i had it done yrs ago. i no longer have any pain in my thigh. i can once again ride in a car. i am back to work full-time and lovin it.
    i missed so much work over the last 2 yrs i almost lost my job. finally, my doctor sent me to a big hospital where i met w/a surgeon. he talked to me about dynamic stabilization, as it had just been approved for use in the US by the FDA. i said why not. so far - i feel great.
    my only advice to you - is get a 2nd, 3rd, 4th opinion.
    good luck
  • I never thought it wouldn't go away. You a flare up here and there and then it worsened and worsened.

    I had the epidural inj, PT(excruciating),discogram all of it. I had a MRI of course too.

    well I was told by my 1st doc I needed a fusion, he was an ortho w/a fellow in spine, the 2nd doc said no way because of the worst that can happen,I was too young, he was a neurosurgeon and the 3rd said yes, he was a spine specialist.

    my disc blew and disappeared in short order(not normal) and just about couldn't hardly walk at which point it was time to do something. as my signature says it was bone on bone by then. I wasn't a candidate for anything else like a laminectomy/discectomy as it was too degenerated.

    I don't know if fusing sooner would have made a difference as I continue to deal with worse leg pain and no more mechanical back pain but a different kind that's hard to explain. but I can walk much better with the disc collapse fixed.

    my point & I say it alot is to be vigilant and advocate for yourself as you're the only 1 who knows how you feel

    take care

    ps Mitch that 3rd level "that will eventually need fusing anyway" may also stay as is for yrs even if you get a few yrs out of it it'll be worth it a 3 level has to be really bad as it's major major surgery. you have a good doc but also might try another opinion
  • Thank you for the input, I seem to be stabilizing a bit with the back. I am still in plenty of pain, but able to work part time and as long as I rest for a few hours I'm good to hang out taking it easy with my family for a few hours in the evening. This is a life I wouldnt wish on anyone, but it is much improved from even a few months ago.

    I am self employed and I am convinced that if I were to go down the major surgery route my company would go bankrupt. I have been religious about lightly stretching (I have to be super careful not to do more harm than good with this) and doing very minor core strengthening exercises. I am convinced that with doing this every day and losing a few pounds I still have a long way to go in improving my quality of life.

    The more input the better on this matter. Surgery is such a big step, and its nothing to be casual about. I do feel surgery can be beneficial once all the factors have been considered and a considerable amount of time has been put into conservative measures. Oh, and need I also say....make sure you have a good surgeon that is looking out for your best interest in the matter. I wish everyone well who may be dealing with similar matters, this has been the most trying issue in my life to date...................Mitch
  • I'M 36 and after 4 cortisone shots in less then 2 months....my doctor sent me to an neurosurgeon after an MRI it took him 5 Mins to say Your a Fusion candidate. Please get a second option.
  • i am 35 i have multilevel DDD all the disk are bad in my back but 1 or 2 and there slowey going i have bulging at every level and heneated diskpicnhing off my nerve canael and spurs ect they say i will have to have pins and rods put in at some point i cant even get them to remove the herneated on closing off my canal.they say im to young for that and fushion dont give up i been to 4 doc if this next one dont help im going to ask to be referd to duke cause they say i cant work no more i cant sit stand or walk bend lift push or pull anything tey say i will speed it up and it will get worse fatser.i wear a tins unit to block the pain it helps a little but i still feel it .i did therepy they laughed and said it would not help.they say cause my age i cant hurt that bad mt thing is how the heck do they know my pain there not me dont give up keep diging you will find a doc at some time
  • get a 2nd opinion!!

    I had an ACDF done at 28 due to a herniated disc!

    Be your own advocate and fine another doctor!!
  • Hello,

    I would definitely suggest that you get a second or third opinion.

    I am 20 years old and had spinal fusion surgery 2 weeks ago. I was diagnosed with a herniated disk and degenerate disk disease. If you have exhausted all non-surgical opinions and are still in severe pain, you should be a candidate for surgery, regardless of your age. Age discrimination is serious and you deserve to get the treatment to help you live your life.

    Let me know if you have any questions about the surgery and good luck.

    -Stephanie
  • I am only 41 and just had my fusion 1 week ago. You should research the artificial disc too. I couldn't do it because I have facet disease as well and my pain comes from my facets moving, so they needed to fuse everything to stop the movement and hopefully stop the pain. Sometimes you need many opinions. I got the same advice from both a orthopedic surgeon and neurosurgeon but they wanted to do 2 different surgical approaches, I chose Minimally Invasive. You can see my posts about surgery on the surgery board.
  • I was 34 when I had fusion on l4/5 it was something I knew was coming for 3 plus years. Originally my Dr. said we will do everything possible to see if there is releif. In reality he was just delaying it, and I knew. It may have been a bad thing though because in the time I probably allowed for L3 and L5/S1 to get worse by not initially having the fusion. It has been a year, but things are creeping back up again and fast, I just had Epidural, but I think once again it is just procedure and surgery is coming. Defintly see another Dr. Age wise yea me you others should not be in this situation. For whatever reason it did, and now like my Dr. says I have the Back of a 80 year old. Fantastic, good to know for years to come. Good Luck and I hope it works out
  • Have DDD and a pars defect.
    I am 27 and am going to the neuro surgen on monday and am afraid that I am going to hear that i need surgery also. I know that most people that have had surgery have to have more then one, and usually are never "right" again. Most people on the board that have had surgery, i noticed are still in pain or are in more pain. I would try to put it off for as long as possible thats what I am going to do if I can.
  • I am 36 with ddd and 2 herniated disc- 3 doctors have told me that I need a level 2 fusion. Get another opinion for sure- - Good luck

    SB
  • Hi

    I read your comment and it seems you are doing very well after your fusion. I am 33 and just had my fusion. I am having alot of trouble using my left leg as far as pushing off to walk up steps etc. I have been walking alot so I notice a very small difference. I had a CT scan the other day and met with my dr. He prescribed a nerve medication as the CT scan showed a screw slightly touching my nerve which could be the cause of my leg problems. He may have to go back in if the nerve doesn't calm down.

    I really like your attitude. Please continue to share good news.

    Take Care
  • Just curious does this mean your fusion was a failure?

    Thanks
  • Just curious does this mean your fusion was a failure?

    Thanks
  • I have facet ddd mild but 3 years later. Much pain. try spinal decompression. It is working!!!
  • I'm 49 and have DDD also and had 3 opinions and no surgery was their answer. I'm starting with physiotherapy to do aqua therapy in a heated pool probably on Thursday. I'm going to learn core strengthening exercises in the water as I'm unable to walk or do any form of exercise except some peddling on the recumbent exercise bicycle. The Drs think surgery wouldn't help me so I'm hoping the pool therapy will help. Keep looking for a Dr that will help you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I just turned 39 and I had a two tier spinal fusion..I was fused from l3,4,5 and S1 in february of this year. They diagnosed me with DDD , spinal stenois. I also had a laminectomy . It is extremly painful. I thought I would recover and bounce back after 3 months but its been 9 months and I still have incredible pain. i go to therapy 3 times a week i have tried acupuncture and every medication under the sun to feel better . I went from a healthy woman who kept up with my 9 yr old to now someone who can even wash the floor. This is not an easy surgery to recover from...I would suggest you try everything else before thinking about doing this. Exercise, chiropractor, injections.
  • spinal decompression is great...it's the only thing that gives me some relief since my surgery.
  • I'm a newbie to the forum but I was wondering something: I've read in various articles that DDD is common, starts in the 20's or 30's, and that the pain can actually improve over time. Also, DDD isn't always associated with pain, so the pain response might be related to something else.

    Could that be why docs are reluctant to do surgery and try to focus more on pain management?

    Anyway, wondering what people thoughts are about that.
  • I am 32 years old (female) and I had PLIF at L5-S1. it is a major decision, but a one level fusion came with a 75%-80% chance of significanlty reduced pain, or resolution of the pain. My dr. was sure to do another (more recent) discogram to be sure the levels above were not damaged (in my case it was just the mentioned level that was horrible - severe DDD, annular tear and herniation) My pain was constant and severe. destroyed my quality of life.

    But here is the good news! My surgery was a terrific success. I even investiagted ALIF, and disc replacement, but decided to go with PLIF, and the surgeon that I felt was the most qualified. (by the way, any dr. that spends less than 30-45 mins. examining you, talking with you and answering all of your questions, is not qualified (in my personal opinion and expereince) to give you an accurate diagnosis. PERIOD. And you should see the Dr. several times prior to your surgery. My dr. was also the only one I saw (and I saw many) that wanted to re-do and old disco for more up to date info. To me, the choice was clear. My advice is not to stop looking until you find the right doctor.

    Just a word of warning too...some insurance companies are starting to say that fusion is not indicated for the treatment of severe DDD, which is so NOT true, they just know it is an expensive surgery and week long hospital stay. I fought them tooth and nail...my denials were done by a nurse and family practice physician...seriously? As if they could know more about my conditon than my nuerosurgeon? Fight them...you can win! (I have several times)

    In the end, I wish I had done this surgery sooner, as I suffered for 12+ years (my whole young adult life) I am so thankful I didn't wait another day! You can recover from this!
  • I would avoid surgery for degenerative disc changes at your age.

    I am a physician and I see lots of people that go in for fusion surgery and then end up having to have revision surgeries and extension of the fusions. So, in a young person I would be concerned that you would have a long future of surgeries ahead of you.

    There are a few things worth keeping in mind. First, discs are not the only thing in the back that can cause pain. It is worth considering the possibility of having your pain be related to lumbar facet joints at least in part. Have you tried facet injections or medial branch blocks?

    Second, it is likely worth revisiting the exercise interventions that you have done. We can make most back pain better with exercise if it is tailored to what is your specific pain generator and 'taking the pressure' off joints or discs with exercise.

    Think hard before getting an extensive fusion.

    I have some exercises posted on my blog EDITED Let me know what you think.



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