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21 Year Old W/ Herniated L5S1

Hi Everyone,

I am a 21 year old girl who was diagnosed with a posterior-lateral herniated L5S1 disc in early 2013 by MRI, affecting my right side. It was not caused by trauma, and so far the doctor/surgeons that I have seen said it is just something that happened on its own over time. I was fairly active pre-injury, visiting the gym frequenty and at a healthy body weight.
To make a long story short, my symptoms went into remission through rest and then exercise over the summer, with pain at a 0-1/10 most days and a 3 at its worst. In late August, my right hamstring started to feel tight, but I figured it was just from not working out for a couple of weeks. Up until that point, my back pain had never traveled further than mid-gluteal muscle area. I kind of brushed it off and continued to work my desk job full time and was able to perform daily activities without limitations. Prolonged sitting was uncomfortable, but only mildly. In late September, the leg tightness got very bad (it felt as though my hamstring was going to snap) so in early October when things gotten terribly acute, I decided to revisit the doctor. I saw an Orthopedic DO, who recommended a Prednisone pack (which I did with nominal relief), and an epidural. At that time, I also sought out medical help from an Orthopedic spinal surgeon in my area in mid-October. He ordered a second MRI, which revealed that it had worsened slightly (he has been so vague about things). He recommended an epidural (which I did with a little bit of relief), and PT (I got stronger but my range of motion barely changed in 2 months).
Now, on week 10 of this experience, I am considering a microdiscectomy. I have numbness and tingling in down my right leg, into my foot. I cannot tolerate sitting for more than about fifteen-thirty minutes. I cannot perform a straight leg raise more than about six inches off the ground. While I am still able to function, I cannot perform most tasks without pain. I saw the surgeon for a follow-up on Monday and he said that if it weren't for my anxiety, he would move forward with surgery now. I am open to it but I am really trying to plan ahead for the remainder of my life and not just do a 'quick fix'. I am fearful of re-hernation, especially since I want to be a mom someday and I don't want to aggravate it with pregnancy, etc. I feel like I have to be my own advocate here because the surgeon is spoon-feeding me his diagnosis and 'care plan' without educating me at all. Fortunately, I have a few years of nursing school under my belt so I know the basic mechanics of it all and have been trying to research on my own. It's just getting exhausting, as I am now no longer working and I am trying to move on with my life. Any advice/tips/feedback would be greatly appreciated. Thank you!


  • I don't really have any answers for you, as I'm going through very similar experiences myself, and just made my first post.

    I do know that most people do have relief after getting a mircodiscectomy. Only about 10% re-herniate after the procedure. I was unfortunately one of those 10%.

    I've got all of the anxiety you are talking about as well. I just wanted to let you know you aren't alone. If you need someone to talk to, my ears are always open.
    I wish you the best of luck!
    L5-S1 Herniation. 1st MIrcrodiscectomy 11/9/13. 2nd Microdiscectomy 12/19/13
  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • SarahLindeauSarahLindeau Posts: 767
    edited 01/03/2014 - 2:39 AM
    Having severe back pain is not fun, at any age, but it's especially distressing when you are in such pain in your 20's because you feel like an elderly person whose spine is broken and fear it can only get worse with age. I've been down this same road, although I didn't have my initial disc herniation until I was 28.

    I definitely think, in my opinion, if you find a respected surgeon who is not known for being a "cutter" and who truly has your best interests in mind, a micro d might actually help you out. But I can't stress the importance of doing your homework on the surgeons enough. As with any profession, there are some who are better than others, and some who would offer surgery to anyone who came to him/her, as that is their profession and the trade they practice.

    I decided, a couple years after my pain had returned, to start seeing a PA at a neurosurgery office located near me. I wanted to try less invasive treatments as much as possible, but wanted to have access to a surgical consult, in-house, if needed. What I discovered after seeing her for 2 years was that my PA knew me thoroughly well as a person, a patient, and understood my role of being a mother of 2 small children. In addition, after being guided through all my non-invasive therapies under her guidance, she knew all of the surgeons in the practice and exactly which one she wanted to refer me to.

    I did my first surgical consult with my surgeon in January of 2013. He proposed a 360 fusion. I was 33.

    I went home after that consult, in pain, but more importantly, I knew what he wanted to do to make me better; now I simply had to decide if that was an option I agreed with. After a couple of days of thorough discussion with my family, I decided against surgery and wanted to spend my next 6 months ambitiously trying the last non-invasive options left open to me.

    I went back to my PA, and she agreed to refer me to a therapy pool (hydro physical therapy) and a few disc injections. I won't lie, having steroid injected directly into the disc (and not the epidural space) was horridly painful. I was at my fist session of hydrotherapy the very next day. It took a week, but pairing the disc injection with hydrotherapy gave me 6 months of near relief of my symptoms! My PA was with me the whole way, documenting my success on good days, and supporting me with kind words and the occasional rx when I needed medical support.

    After my third disc injection, the honeymoon was over, though, and in October, I saw my same surgeon for a new consult. My new MRI was terrible and showed my pain loud and clear. I had my 360 fusion almost 2 weeks ago. I'm on a new path, but am already feeling better.

    What I'm trying to convey to you is that, while all our pain is different, I want you to have hope that together with a good, respectable surgeon (who won't scare you into thinking that cutting is the only cure) or a caring Dr. or PA, you can get your life back and still have great days again.

    My PA and my surgeon are my heroes. My PA because she always had time for me, my tears and helping me put myself back together, supporting me day in and day out for the past 3 years; and my surgeon because he proposed this surgery a year ago, but let me walk out of his office to decide for myself if I truly wanted (not just needed) his proposed operation.

    I hope you can find the same trusted medical advisors I did and feel better soon.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • K2911 said:
    I am open to it but I am really trying to plan ahead for the remainder of my life and not just do a 'quick fix'. I am fearful of re-hernation, especially since I want to be a mom someday and I don't want to aggravate it with pregnancy, etc. I feel like I have to be my own advocate here because the surgeon is spoon-feeding me his diagnosis and 'care plan' without educating me at all. Fortunately, I have a few years of nursing school under my belt so I know the basic mechanics of it all and have been trying to research on my own.
    I'm sorry to tell ya, but a micro-d is a quick fix.... that works very well if you protect it. Once a disc is compromised, it never goes back to being 100%. It will be the weakest link. The disc will have a much lower limit for handling weight and stress. Go past its limit and it will reherniate again.

    Its so good that you are knowledgable and are aware enough to proactively adopt the "advocating for yourself" plan of attack. Still, I'm going to send you a pm with even more helpful info. Look in your mailbox here.
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • K2911 you have to confident in your surgeon and his entire team. Have you considered a second opinion? Not saying that you need a warm and fuzzy surgeon per say, but you do need someone you feel comfortable with.
    I had a micro d in June and did in fact reherniate. At first I couldn't understand why, but looking back to some of things that I did post op, I now know that I overdid it and could kick myself.

    I know it's difficult to make a decision like this when you are in pain so that's what makes spine-health a great resource. Read other people's stories and talk to your family and Dr about what you've learned.

    Best of luck with whatever decision you make.

    Herniation of l5 S1 l4 , DDD , microdisectomy in June 2013 and re herniation in September
    Cervical herniation at C5-7 Jan 2014 with impingement of spinal cord. 2 level cervical fusion Feb. 2014 and 2 level lumbar fusion in April 2014
  • I'm starting to get really anxious about all of this since I have been reading through this forum. I am SO thankful that this exists for us to share our problems and encourage each other, but I am feel like re-hernation is WAY more common than I thought. The surgeon said 15 percent re-herniate but now I am thinking I should just suffer and not risk compromising my 21 y/o spine, although the tingling/numbness is concerning. I'm so thankful to those of you who have taken the time to share your feedback with me. It is so greatly appreciated! :)
  • One thing to keep in mind is the potential for permanent nerve damage if the herniation is left untreated. I know back surgery is scary for younger people, I'm 24 and I had a 2 level fusion in October. In my case, I'm very happy I went through with the surgery and I'm close to being pain free for the first time in awhile. The key for me was finding a surgeon I trusted to perform the surgery - I saw 3 other spine surgeons before moving forward with the surgeon I used.
    10/28/13 - ALIF, PSF, decompression at L4/L5 and L5/S1
  • K2911K2911 Posts: 5
    edited 01/03/2014 - 7:44 AM
    SteveT said:
    One thing to keep in mind is the potential for permanent nerve damage if the herniation is left untreated.
    This is very true SteveT. I have definitely been considering that and wondering how to know when I'm at a point where nerve damage is an increasing concern. At my follow-up on Monday the surgeon didn't even examine me at all and when I told him I have new numbness and tingling he didn't perform any reflex or strength tests. It was very startling that he would let me walk out of his office and 'come back in a few months' when nerve damage is a reciprocal issue from a herniation.
  • If you haven't gone for a 2nd opinion, I would recommend that. The first spine surgeon I saw was great in helping me get a diagnosis, but wouldn't do a fusion for me because of my age. He told me to basically live with the pain. I went to 2 other spine surgeons after him and didn't care for either. The 4th spine surgeon I saw was fantastic and probably spent close to 45 minutes with me discussing my condition, surgery, and what to expect after. I'm now 2 months post-op and feel great. I'm sure I'll end up needing another fusion in the future, but all of my other levels are healthy, so my surgeon thinks it could be 15-20+ years before that time comes.
    10/28/13 - ALIF, PSF, decompression at L4/L5 and L5/S1
  • davrunnerddavrunner Posts: 478
    edited 01/03/2014 - 10:08 AM
    I agree with getting 2nd and 3rd and 4th opinions. When the conservative measures fail to provide relief you need to know what the likelyhood of having permanent damage is if you don't have surgery. There are test they can do to check nerve involvement, EMG, but they aren't 100% accurate. I have been dealing with neck pain for over 10 years, had one surgery 5 years ago, a laminectomy, and now having a 3 level fusion on the 20th. I have permanent nerve damage going to my left arm that won't be corrected with the surgery, but may have been prevented if I had the surgery 10 years ago. Surgery is now being done to stabilize my spine and if I get any pain relief it will just be a bonus.
    It is a tough decision but find a Dr who will go through your mri with you and show you what's going on, even if you don't have that one do the surgery it helps to understand what is happening and correlate it to your symptoms.
    Good luck.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • BardamuBBardamu Posts: 3
    edited 01/04/2014 - 1:41 AM
    Fear of permanent nerve damage is what led me to have microdiscectomy at L5-S1 level, 28 Feb last year. Based on the research I did (talking to neurosurgeons, reading spine surgery books), my understanding is that symptoms of increasing damage are leg pain, numbness & tingling, leg weakness - in that order. So an additional alarm bell for you would be if you develop muscular weakness - walking with a limp, difficulty standing on toes, loss of reflexes. That's the stage at which I opted for surgery. The outcome in my case was good - I had regained strength in my leg and was able to walk again normally at about 6-7 weeks post-op. I'm 33, male, rather thin, and l was not in great physical shape when my herniation occurred.

    I second the advice to get multiple opinions from spine surgeons. Try to gather as much knowledge as you can on your condition. Hope this helps. Good luck!
  • K2911K2911 Posts: 5
    edited 01/04/2014 - 9:40 AM
    Thank you for your feedback! I am definitely going to be getting a second opinion and just trying to find somebody who can step up and educate me and consider my entire life, not just short-term results. I am in NH, so if anyone knows of a great surgeon here please let me know :)
  • Everyone above has given you great advice. Just wanted to let you know that you are not alone and if you ever need to vent or have questions on anything there is a great bunch of people here to listen and help. My surgeon would not do surgery just to try to get pain relief. He only does surgery to help with nerve issues such as numbness and weakness. And with both of my spine surgeries I woke up immediately with the numbness and shooting pains gone. With my cervical fusion it took all my symptoms away including the pain so that was a bonus. And I just had a discectomy and laminectomy on L5-S1 again I woke with my leg pain gone and the numbness and weakness improved. I have started getting the numbness back in my foot but it may just be nerves inflamed from surgery.
    I wish you well and will pray for you.
    It is very important to find a surgeon who you trust and are comfortable with it makes a big difference.
    Acdf C5 C6 12/13/12
    Laminectomy and Discectomy L5 S1 12/12/13
  • I just wanted to say that, as I'm sure you know, back pain is insidious, and can really get you down. So do take care if yourself and try to be positive. It's good that you are so active already in seeking information and finding the right doc for your situation. Find a doc who will consider your entire situation for now, while you get consults from surgeons. That means a medical professional who will actively treat your current issues (refer for PT, hydrotherapy or prescriptions), but will also help you take care of yourself emotionally. For many of us with chronic back pain, that has meant antidepressants or anxiety medication. I am NOT saying you may need all this, but considering you may be postponing invasive surgery for now, I think that it's a good starting point. A good PT can get you in good core shape that can help you minimize your bad days - good luck
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
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