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Need help weighing my options- DDD L4-L5 and L5-S1

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:22 AM in Back Surgery and Neck Surgery
Hi all, I am relatively new to the site- as the subject says I have degenerative disc disease L4-L5 and L5-S1. The discs are also herniated but the pain does not go down my legs and the pain is all coming from the degeneraton. I am 25 years old and have had symptoms in my low back since I was 13, tried about every treatment there is with no success. I have back pain every day but also have occasional flare-ups that are unbearable. Have had many tests, recently had another XRay and MRI, and scheduled for a discogram (would also appreciate feedback on this, have you had one? is it extremely painful?)

Anyhow, my doctor said the provided the discogram says what he expects it to, surgery will be my best option. Leaning towards disc replacement and the fact that is still seems experimental and is relatively new scares me. Any input? Any good/bad experiences? Any comparisons to success with fusion?

Or, has anyone tried Intradiscal Electrothermic Therapy (IDET)? A while back he mentioned this and it seems much less invasive...

Any input on the discogram, surgeries or IDET would be much appreciated.
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Comments

  • Hi Lindsayb,

    I'm hoping that when I see the consultant next week, he will offer surgery. The family want me to continue with pain management but the flare ups recently have been awful. I have been in level 7-9 pain constantly for a year

    I would like to have the option rather than feeling like a failure being unable to 'live with it'. Everyone is different, and I guess the choice will be yours to make.

    I had a discogram 12 months ago. There were issues but the test is really good for the drs to give a proper diagnosis. Good luck and keep in touch
    x
  • Hello there. I am also pretty young, 28. I have had ddd and back pain since I was 15. I ended up having l5-s1 fused 2 weekds ago. The discogram, it was farilt painful, but they will keep you as comftorable as they can. They are trying to determine if the disc is the siource of the pain, and they try to duplicate that pain with this procedure. I wont go into details as they are not really necessary. You will be okay, a little sore but its managable and they will give you some good drugs afterwords. Good luck
  • Lindsay,

    Welcome aboard the message board:)

    I had a discogram. I was terrified. I'd heard horror stories.

    But when I thought about it, I rationalized it saying: They are just going to re-create the pain I deal with already on a daily basis. How bad can it be? I feel that pain every day already. I was also worried that the bladder issues would also be re-created, talk about sweating it out and I was too embarrassed to ask about it.

    I went in, told them how nervous I was, so they gave me a full dose of Valium. Very helpful.

    Once I got in the room and they started the procedure, the nurses were kind and genuinely helpful. Like they really knew how aweful I would feel. It made me feel comforted.

    In the procedure they insert a needle and numb the area as they go. I was on my side and the needles went from my side all the way to my spine. It's best (according to my NS) to enter the spine from the side.

    I felt pressure. It was not terrible. Then he injected the dye and something else too. The first disc is a control. I felt pressure and pain in my right rear. The second disc L4/L5(one I ended up having fused) also radiated only into my right rear, but more intensely. The last disc, S1/L5, also one that got fused, started radiating down my left leg and exactly recreated my normal pain. NO bladder issues -whew! They stopped the injection as soon as the pain started down my leg.

    At this time the pain was fairly intense, I was okay, I was proud of myself. But my entire body was shaking uncontrollably. When the nurses needed me to move onto the moveable gurney and also onto the CT table I was unable to. I could not move a single muscle, to move was to have excruciating pain. They had to gently roll me each time.

    I did have tears running all over my face, but I was not sobbing, I was really trying to be strong.

    Now that I have scared you to pieces - I would go through it again to be sure that the surgery was what I needed and to be CERTAIN which levels needed the work.

    My NS was only going to fuse L4/L5 based on my MRI's. The discogram proved that S1/L5 was the one that was giving me the worst pain. To think that I would have had the surgery and come out of it with a one-level L4/L5 fusion and still be in pain - that makes the discogram worth every single moment of pain.

    Oh, within an hour I was tender but doing MUCH better. The next day I only had minor stiffness. I had taken the day off work as the imagining center had advised, but I was able to go shopping and drive and had a very pleasant day.

    One last thing - the reason my NS told me I needed a fusion was because I am still young. I'm not 25 by any means, but at 42 he still felt I was too young to have an Artificial disc. I'm not up on ADR's and all, but I do remember reading that there is controversy about how long they will last, while a fusion doesn't wear out and have to be replaced every 7 to 10 years.
  • Lindsay,

    I am also new to the site, and trying to sift through all the options, while realizing there aren't many! My complaints are very similiar to yours and I have had the discogram already. I was also scared to death, but you really need to have it done. It does re-enact the pain, but it can't be helped. You have to take a step back to move forward. It really wasn't that bad, the staff was wonderful and I was fine afterward. I think I was more afraid of the pain than anything else. We have been waiting for several years for the replacement surgery to become FDA approved, but my Dr. doesn't think that is going to happen anytime soon. I had another MRI last week and will be discussing other options. I have been taking Tramadol for the last seven years, which thankfully still gets me through the day. I hope my next surgery isn't liver replacement.

    What does anyone know about fusion without the bone graft? I think it's like the stabilimax that is out now. I don't know what to expect for recovery and limitations afterward.

    I also have begun to have L4,L5,S1 siactia issues. Any tips on relief?
  • isnt that bad actually. They insert needles into your disks and inject a fluid into the disks to see ifthey can recreate your highest pain level you get when your at home. They usually do two disks just for a reference reason. They wont tell you which disk theyre doing as they want a true test result. When they hit the disk in your back that is the pain and problem maker, you;ll know it, you might scream and burst out into tears but dont worry they pump some painkilers directly into you to ease the pain off slowly again. This procedure is just done to make sure which disk is causing the pain.
    My next test ws suppose to be the IDET but the surgeon thatpreformed my dicogram told my surgeon and us that there was no point, He didnt think the IDET would help me leaving my only option....SURGERY.


    Christina :)
  • I have heard nothing but bad things about IDET.
    Makes no sense at all to "cook" a disc.

    re: discograms
    there are some done with sedation and some without.
    It is possible to be overly sedated and give a "false negative" response. This is when you are too sedated to feel pain, but still awake to talk.

    I've had 2 discograms, under light I.V. sedation. To be 100% honest with you, I have very little memory of them.
    I do recall feeling pressure each time they tested each disc, but vaguely.
    -----------------------------
    On the sunny and mild Central Coast of California

    L4-L5 endoscopic transforaminal microdiscectomy June, 2007
    L5-S1 endoscopic transforaminal microdiscectomy May, 2008
  • Thank you all so much for your responses. My discogram is scheduled (still almost another month away- the first time they could fit me in!) but I am not nearly as scared after reading the responses. I am sure if the results point to surgery I will be asking more questions. Also appreciate the input on the IDET. I've also heard not great things from asking around and think I would opt not to do that. Thanks again, this is all so appreciated.
  • Hey Lindsay,

    I've never had a discogram myself but good luck with that. I know that the sound of surgery is quite scary, but surgeons will only recommend it as a last resort. While it's not something to be taken lightly, and there are risks involved, a successful surgery can give you your life back. Before you make a final decision, find out exactly what surgery they recommend, get at least one other opinion from different surgeon, and then do lots of research about the procedure just to prepare yourself. We are all here to help you through all that bit so don't worry!

    Let us know how the disco goes :) Take care, Spicey
  • I feel your pain! I too tried everything before having the same surgery that you need. My insurance denied ADR so I went ahead with the fusion route which I wish I had done years earlier. I'm 6 months post op and still feeling 100% better. No pain pills in over 3 months. If your in good physical shape and you find a well known Dr that you've heard about from family and friends you will be glad that you did it. I suffered with constant pain for years with those flare ups as well. Follow Dr's instuctions to the T so you too can be pain free.

    Keith
  • Let us know how everything turns out after your discogram.

    Good Luck,
    Christina :)
  • i had done my TDR L5S1 although i had DDD @ L5S1 n L4L5. discogram i will nv 4get in my mind =x i can see n feel those needles going thru my meat to reach my disc. i can see the needle slowly moving in thru the floroscopy which the doc 4get to move away from my sight =.=!!!

    those r painful memories =x sure u gonna scream n tremble cos the pain is reali too instense. it's even worse then my usual worst pain =x i teared inside. doc sedated my outer skin lower back b4 letting needles slipped into my meat.

    after my disco n i being left wif surgery

    anyway all the best for ur decision
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