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24 and desperately wanting surgery

This doesn't really fit in one specific place, so I thought maybe it would be best here.

Please forgive me, much of this is ranting. I've kind of gotten to my breaking point. I just need someone to read and understand.

My name is Julie, and I'm a 24 year old, 310 lb, 5'8" female. 140 of those pounds were gained after my back problems began.

For the last 11 years, I've had problems on and off with my back. I wish I had documented all of them, but they started when I was in middle school. One day, in a class in the library where we would sit in beanbag chairs while doing our work, I realized that I couldn't get up because there was an intense pain in my lower back. After someone helped me up, I was "stuck" with the upper half of my body almost curved to the left, and I couldn't stand up all the way. That began years of 3x per week chiropractic appointments.

While the pain never completely went away, I had my good days more often than the bad. There were similar instances of me waking up to stiffness and an inability to move, and at one point I was told I had some degenerating disks that seemed to be doing so more quickly than usual by the chiropractor. I just kept on going. I played varsity tennis and basketball and enjoyed running, but I slowed down as the pain continued and I gained weight.

Then, about three years ago, I woke up one morning during winter break from college in bed with intense pain in my lower back and right upper leg, with my lower right leg and right foot completely numb. I could barely sleep or walk. After dealing with this for nearly a week, my mother took me to the emergency room where I was given a CT scan and told I had two herniated disks in my back. They gave me a toradol shot and some hydrocodone to take home with me (neither helped), and after another week or so of waiting, I was back to being able to walk, but still stiff and in lots of pain.

Back to the intermittent days full of pain mixed in with good days, and over the last year I've noticed things getting much worse. I still was regularly seeing a chiropractor (though more like once per week), until this May when I began a temporary full time job with a department at my college. I was feeling alright until one day when I woke up, again unable to walk without searing pain. The numbness was back, my hips hurt, and I could barely put weight on my right side at all. When it started to interfere with my ability to make the 5 minute walk at work and concentrate on what I was working on (and when I spent my 3rd or 4th night in a row in tear-filled agony, unable to sleep, I went to urgent care at my local hospital. They gave me hydrocdone and flexoril, neither of which helped, and told me to go home because there was nothing they could do for me. A week later, I went to a night-clinic and got a similar response, but was sent to an orthopedic surgeon with the warning that I'll probably just end up in physical therapy. This is exactly what happened. After 6 weeks of PT and very little improvement, I just tried to go on with my life. After about 2-3 months I had full feeling back in my foot. Back to intermittent pain. Was told it should get better.

Then, this past monday morning (after feeling generally stiff and unable to sleep well for about a week), I wake up with the same symptoms excluding the numbness. I try to push through the day but can yet again barely get out of bed without rolling out, shower, and dress myself. I make it through my night class and do my Resident Assistant rounds through the 10 floors of our building via elevator instead of down the stairs. Then, my friend drove me to the ER where they kept me overnight, did a CT scan, and put me on a morphine drip so I could sleep. When I woke up, I was informed that I have 4 herniated disks that the scan could detect (I was out of it, so all I remember is that three are right near each other in my lower back and one is in my middle-upper), but needed an MRI to confirm everything. I was also told that while I probably need surgery given my history, I am too young. Was given oxycodone (takes the edge off so I can get to class) and flexoril (nothing) and told to follow up with my primary within 3 days (but couldn't get an appointment earlier than this thursday).

At this point, I feel stuck. I keep being told I am too young for surgery, but am I not too young to have been at some level of constant pain for almost half my life? I want to go in to my doctor (she's new to me, so I have no idea what kind of person she is) and tell her I want an MRI and I want surgery to be considered, but I obviously only have so much say if she won't give me a referral. I can't live like this anymore. I eat well and exercise the few days a month where I'm feeling good enough to. I want to lose weight. I want to take a shower without screaming. I want to sit up in bed. And I want to be a normal college kid.

Anyone else out there that knows my pain?


  • DNiceDDNice Posts: 1,834
    edited 12/03/2012 - 4:24 PM
    Hi and sorry you are having such pain at a young age. But as I'm sure you figured out, back issues do not discriminate with age. I think many folks here know your pain...

    First, are you in the US or in another country? I ask b/c not sure how this referral thing is an issue if in the US. You were in the ER for a back issue and therefore need to go see a specialist. The ER should refer you to a specialist since they are not equipped to determine if you are young enough or 'given your situation'.

    I ended up in the ER and was sent to a Spine Pain Management doctor the next day so a specialist could look at my MR results. That specialist sent me to a neurosurgeon (but an orthopedic spine surgeon would have been ok too). That surgeon is the one that reviews your history, your records, and can offer suggestions. You are then entitled to a 2nd opinion.

    IF the ER will not refer you, you need to ask for the MRI/CAT scan records (you may have to pay but you need those for your records and you should probably get the ones from years ago) and find a good General practitioner. If it is the records show you have herniations, a GP will have to send you to at least PT. A good PT will try only a few things and if you show signs of declining they are obligated to stop treating you and send you back to the GP to go to a specialist.

    Bottom line...approach your new doctor politely and ask her what next. If she says PT, I would ask her if it would make sense for a specialist (neurosurgeon or orthopedic spine surgeon) to review your case first. By asking for this, it doesn't mean you are asking for surgery. It means you are asking for a specialist's opinion. Keep in mind the specialist might also tell you hold on surgery but they will offer alternate treatment to try to improve your situation - Physical Therapy or Physio (Physiatrist) who will work with you holistically to try to alleviate your issues.

    On a side note, they have done studies that show patients with what appears to be herniated discs bad enough on film to 'warrant' surgery. And others with smaller herniations that would indicate not much pain. When they brought those random patients review their results, they learned that many of the 'patients' with bad herniations had no pain. Moral? The medical test (CAT scan, MRI, etc.) is only part of the diagnosis. They really look at records, your history, your pain, and possible options to try to remediate the pain.

    Unfortunately, lower back surgery is a slippery slope and not by any means a cure-all (or cure anything as some folks here can attest to). It isn't saying that it isn't an option but often it is considered 'last option' because it is so risky and comes with no guarantees. It is not like getting a knee replacement or tonsils out. But it can help depending on your situation.

    if you struggle getting sent to a specialist, there are on line e-opinions that some of the back specialty hospitals may offer (I'm thinking cleveland clinic, hospital for special surgery, etc.) - but they require you to be under the care of a doctor since they are remote opinions.

    I hope some of this helps.
    For now, I'd say see the doctor as follow up.
    If they say no surgery, ask if it is worth establishing a medical relationship with a back doctor like the one I mentioned.
    If they say no. I'd say, "okay but based on my history, it would put my mind at ease to have a consult with a specialist".
    most of the time this will get you the referral.
    If they still say no, do you have a family member that can help be your advocate back home?

    Good luck. I should be a normal college kid and not have such pain issues.
  • Im really sorry about your pain. Yes, you are young and shouldnt be in this kind of pain and have surgery, but now you are in pain so that is what needs to be dealt with, regardless of age... Age in itself wont cure anything.

    When it comes to spine problems and surgery, there is often a ladder type approach to treatment that doctors will have their patients go through, and surgery being at the top of the ladder of treatments. Its invasive, non-reversible and carries risks. This approach is also what the insurance companies usually go by when approving treatment.

    I would suggest seeing if your GP can get you a referral to a pain clinic. Pain management clinics deal with a lot of spine patients and have many treatment options to offer. They will run all tests necessary to determine the root of your pain and numbness, and put together a treatment plan. They will try many things before suggesting surgery. Starting with conservative treatment (exercise, PT, rest, pain meds etc) moving onto more invasive treatment (injections, rizotomy etc), and after most everything is tried, surgery might be an option. Most surgeons do not like to perform surgery for pain reasons only since the results vary grately with pain being gone after surgery. More important is surgery as to prevent further tissue damage.

    I went through conservative and minimally invasive treatment for 5 years before surgery was considered. Until I had tried everything they had to offer and my neck still got progressivly worse with proof of nerve compression, did the surgeon say he was willing to operate, and the insurance company approving surgery. Several doctors were worried about my arm becoming permanently damaged. I opted for surgery since I had nothing left to loose, and knowing I had tried EVRYTHING.
    I am now 7 months out of my 2 level fusion and its far from perfect. But I am so much better! And I dont regret it. I've come to peace with my spine never being a 100% again, but at least I can work and dont have to suffer all day, every day. Im 39 and my spine has been bad since I was a teenager, after a car crash. In my twenties I was told the same things as you; "you're young, rest, stretch, massage and have some Tylenol, maybe your muscles are tight from stress, we all have back pain" etc.

    I guess what Im trying to say is make sure you try all treatment that is being offered and to get properly diagnosed by a spine specialist. You should not be suffering as much as you are! Surgery might be a solution, find a specialist to discuss all your options with.
    Last thing: before I seeked out my pain/spine clinic, all I got was meds and more meds, PT and trigger point injections. Once in the hands of spine specialists, so many more treatment options was offered, especially epidurals and facet joint injections helped really well for a while, in combination with proper pain medication.

    Here on Spine Health you will find a ton of info about your condition and types of treatment.
    Best of luck with everything and dont give up on finding someone who can help you!
    Let us know how it goes.

    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
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  • i have disc bulge and bone spurs and minor narrowing and DDD and leg pain and have seen Orthosurgeons and Neurosurgeon and none will give me surgery so I'm 5 years out of my job but try to do arthritis aquafit and aquatherapy with a PT as well to keep my weight down and have cut portion size also.

    Maybe you need to go to a Specialty Spine Hospital and get opinions from a Board Certified Ortho or Neurosurgeon. I'm sorry you're so young with these issues and hope you find a Dr. to help you with a treatment plan. I'm going for Radio frequency ablation of my facet joints hoping that will stop my back pain but will try anything really. Take care and keep us posted and never give up looking for a Dr. to help. 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
  • ben_indianabben_indiana Posts: 287
    edited 12/06/2012 - 6:20 AM
    The posts above are pretty much right on. I only have a couple comments to add.

    One of the hardest things for some people is to find the right doctors who are willing to help & understand. Its a way harder process than it should be.

    I relate to the shower pain all too well. And I am a guy with a shaved head so it does not take me long. Pre-surgery it was one of the worst parts of my day.

    Good luck!
    L5S1 REMOVED herniation. Years of pain & compression. Microdiscectomy complete!! Trying to be super smart & safe with recovery!
  • really great info and help above.

    weight: must lose it. 140 lbs is a bit more than what i've lost (only 60lb), but you can do it.
    this link is to info that generally works (but we are all different), and it may help you on your path to becoming pain free. for me, the incentive now is to prevent the next disc going on me like the one i had to have fused. you have to have clearly in mind what your incentive is. this helps even when the dark feelings come (well some of the time, but one dusts oneself off and tries again).

    combining this with specific neve pain medication and slowly doing walking exercise, you will see good results. these are things you can do and you need to take accountability for what happens.

    keep posting here and we will help you through this health issue. but only you can do what's been recommended.

    wish you all the best.
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  • Results and risk factors for recurrence following single-level tubular lumbar microdiscectomy.
    Moliterno JA, Knopman J, Parikh K, Cohan JN, Huang QD, Aaker GD, Grivoyannis AD, Patel AR, Härtl R, Boockvar JA.

    Department of Neurosurgery, Yale University School of Medicine, Yale-New Haven Hospital, New Haven, Connecticut, USA.

    The use of minimally invasive surgical techniques, including microscope-assisted tubular lumbar microdiscectomy (tLMD), has gained increasing popularity in treating lumbar disc herniations (LDHs). This particular procedure has been shown to be both cost-efficient and effective, resulting in outcomes comparable to those of open surgical procedures. Lumbar disc herniation recurrence necessitating reoperation, however, remains an issue following spinal surgery, with an overall reported incidence of approximately 3-13%. The authors' aim in the present study was to report their experience using tLMD for single-level LDH, hoping to provide further insight into the rate of surgical recurrence and to identify potential risk factors leading to this complication.

    The authors retrospectively reviewed the cases of 217 patients who underwent tLMD for single-level LDH performed identically by 2 surgeons (J.B., R.H.) between 2004 and 2008. Evaluation for LDH recurrence included detailed medical chart review and telephone interview. Recurrent LDH was defined as the return of preoperative signs and symptoms after an interval of postoperative resolution, in conjunction with radiographic demonstration of ipsilateral disc herniation at the same level and pathological confirmation of disc material. A cohort of patients without recurrence was used for comparison to identify possible risk factors for recurrent LDH.

    Of the 147 patients for whom the authors were able to definitively assess symptomatic recurrence status, 14 patients (9.5%) experienced LDH recurrence following single-level tLMD. The most common level involved was L5-S1 (42.9%) and the mean length of time to recurrence was 12 weeks (range 1.5-52 weeks). Sixty-four percent of the patients were male. In a comparison with patients without recurrence, the authors found that relatively lower body mass index was significantly associated with recurrence (p = 0.005), such that LDH in nonobese patients was more likely to recur.

    Recurrence rates following tLMD for LDH compare favorably with those in patients who have undergone open discectomy, lending further support for its effectiveness in treating single-level LDH. Nonobese patients with a relatively lower body mass index, in particular, appear to be at greater risk for recurrence.

    [PubMed - indexed for MEDLINE]
  • DaveFusionDDaveFusion Posts: 476
    edited 12/07/2012 - 3:05 PM
    Very interesting article. Thank you.

    So for microscope-assisted tubular lumbar microdiscectomy (tLMD), the LDH recurrence following a single-level microdiscectomy was 9.5% and occurred, on average, around 12 weeks. And non-obese patients had higher risk.

    Let's pig out!

    Seriously, I will still aim to reduce another 25 lbs. I am sure my back will thank me.
  • Julie: how are you going? I hope I haven't scared you away!

    There was a really nice post recently (since yours), that offered advice on the language to use to the doctor that would probably enlist a positive outcome for a MRI and referral to a spinal surgeon.

    All the best.
  • CoralCCoral Posts: 4
    edited 12/07/2013 - 5:24 PM

    You wrote 972 words of meticulous, grammatically-correct detail to document 11 years of back pain. I can tell that you're conscientious and a perfectionist.

    So I'll buy you lunch if I don't know the answer to your mystery.

    Want to know what cured my back pain? Post edited, solicitation is not permitted at Spine-Health, URL removed. Poster , please read forum rules before making additional posts

    Contact me if the video doesn't get you on the right track or if you're curious for more info.
  • edited 12/10/2013 - 11:58 AM
    I have been scheduled for February 2014 for unilateral decompression surgery. I have been dealing with the bulging discs l4 and l5 since 2011. After pt for one year it felt better until after gardening and running I got the pain back . I have spinal stenosis with degenerating arthritis ,narrow canal. Having nerve pain for now 7 month straight I started to get pain in my right thigh different from my usual nerve pain. Is it possible that I got neurogenic atrophy in my leg? Can I do something about or is that pain go away after surgery or is the atrophy irreversible ? Please advice. Bob
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