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I'm scared, and need your help/advice please...

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:25 AM in Degenerative Disc Disease
I'm a 42 year old female with DDD at L5-S1 since 1995. Through the years, I've been in a back brace, done PT, ice/heat, E-Stim, exercises, whirlpool - you name it I've done it - cortizone shots, etc. Nothing really helped me and I "learned" to live with, and "deal" with the pain, and what I can and cannot do to avoid the pain in my lower back.

I've been to 5 different doctor's over the past 13 yrs.

1st: 1995 Ortho. Surgeon - edited - said I need fusion L5-S1 (my primary doc said I was too young and to try to hold off)

2nd: 2000 Neuro. Surgeon - edited - said I had MS - after all Evoked Potentials/MRI's - negative. (because of all my tingling and numbness in legs/feet).

3rd: 2005 Nero. Surgeon - edited- said I have severe DDD and need fusion but wouldn't touch my back b'cuz I smoke. (though I've since quit).

4th: 2006 GP - edited - had no direct answer on what was causing my numbness & tingling in both legs/feet, front and back on activity (even walking up 5-6 stairs). Also had electric shocks going into back of my heels when I bent my head down.

5th: 2008 Top edited. Said MRIs show total loss of disc at L5-S1 - too far gone for disc replacement. Suggested a 360 Anterior/Posterior fusion at L5-S1.

Back in June, I lifted a heavy box while twisting and thought I really did it this time - according to the pain I had. It spurned yet another MRI - which showed that L5-S1 disc is no longer - ortho. said it's "bone on bone" and wants to do surgery.

I'm SCARED TO DEATH of surgery b'cuz of all the horror stories I've read about - and not enough successes. Doc only gave me a 75% chance of success with 25% chance of having the same or worse pain/numbness/tingling. He's a top Orthopedic surgeon in a Boston hospital and comes highly recommended.

Here's the kicker and what is bothering me the most... although I have pain, I've learned to "live" with it and just believe that it's "normal". In the morning, I have to get out of bed inch by inch, when I'm finally standing, most times I need to hold onto the bed and window sill until I know my legs will hold me... I get to the bathroom, hobbling as best I can - and can't bend to remove my pj bottoms, so have to use my numb feet.

Once out of the shower, I seriously feel better and more able to "function". I have a lot of tingling in my lower, left back at this point, but ignore it. I go to work, sometimes having to sit b'cuz my back gets weak or painful depending on what I'm doing. Mostly I can bare the day and I'm "functioning"...

I don't really feel any pain again until I lay down to go to bed. I walk, I sit, I can bend over once I'm up and moving about throughout the day...

Do I really NEED surgery??? I'm so afraid of the recovery and being in worse shape than I am now. I'm able to function and work every day - what if I can't after surgery?

My surgery date is January 30, 2009 and my pre-op is the 15th, where I'm tempted to tell the surgeon to forget it..

From what I've said - do you guys think I should go through with this? I'm not in pain all the time - numbness and tingling is 24/7, but I'm used to that now...

Please help - and I'm so sorry for the "book"...


Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.


  • A 75% success sounds pretty good to me. Right now I'm doing the same as you. Inching around the house. Is that really living though? How many times have you wanted to get up and go for a walk through the mall. Or a family event? Maybe you need another opinion from a different Dr. or 2. Why jump into it before you're really sure and hope that another opinion or 2 will ease your mind about surgery. 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 feel your pain.... I am thinking that you are some where on the north Shore.... I just had a huge surgery done by the most wonderful Doc in the world, and he is right in your back yard,,, I suggest you look up this doctor
    edited.... he is at the spine center in peabody, there is one other member on this sight that loves this dr. also..... IF you want more info give me a shout... Cyndi

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
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  • I did not see that you already had a good one, silly me... sorry if I confused you....
  • that's my problem... I've already been to 5 different doctors - only one thinking I had MS, all the others diagnosing DDD at L5-S1, recommending surgery.

    i'm just so afraid of the recovery and not being able to get back to work and back to a normal way of life. the doctor told me that if i continue to wait, the nerve damage will become permenant.

    i wish i could have more hope of success from the doctor, then i would feel better about this.
  • thanks Cyndi - yes, he IS right in my back door, that's really funny - I live in Peabody! but... you're right, i do have a great doctor, one of the best in the country from EDITED, and the other doctor he will be performing the surgery on me with is the Chief Vascular surgeon at EDITED... so I believe they are close to the best I could get.

    and you had to have 2 back surgery's??? i'm petrified of that as well... maybe i'm worrying about this too much. i just can't afford to 'not' be able to go back to work - the doctor said I'd be out of work for at least 3 months and that's all my disability will allow me.

    so confused on what to do..

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
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  • I have had 2 different suregeries, both on my c-spine, 4 years ago I had the anterior approach and had 3 disc fused, I was out of work 3 months to the day, It was a walk in the park next to this one I had in August, The last one was a posterior approach laminectomy with screw fixation and fusion for 3 disc again, My neck is no longer flexable and pretty much fixed for life... I could not take the pain any longer and I was told I would just get worse if not lose the feeling in my arms and hands, I thought about it long and hard and decided to go ahead and trust the good Lord to get me through this and I think in the long run I will be better but I have been in a hard collar now going on 4 months and fusion is taking its sweet time, I am now doing some pt just massage and tens unit. My doctor had told me that I can no longer go back to my work as I know it....You have the right to be scared it is a scarey thing. You will know when its time to go with it.... There are a great bunch of people here that have pretty much gotten me through some hurdles and they will be here for you too.... I am right now fighting disability and I think by far this is the hardest hurdle to worry about is the money situation and healing in the right way.... I live in Gloucester, and we have another man that lives in Lynn pretty cool huh?
  • Wow - you've been through a lot. I feel for you and hope your recovery goes well and swift. I have thought long and hard about this myself over the years, knowing that eventually it will need to be done, but keep trying to come up with excuses to put it off again. This time though, because of the numbness of the legs and feet and the fact that it's interrupting my "hubby activities"... I'm thinking I really don't have a choice any longer.

    I guess I'll have to read more posts on this forum and take in all the positive feedback from everyone, it seems like a great place to be. I wish I could just release this fear.

    Thanks again for responding...
  • I've had 3 surgeries at L5-S1, all within 12 months of one another. I ended up with a 360 PLIF with rods, screws, cages and BMP and am a fusion success story. My back was over-rotating and shearing prior to the 3rd surgery and I was in a dangerous situation. Yet, my neurosurgeon still told me -come back when you are tired of living this way. He was not pushy at all. He was one of those doctors who is blunt and tells you what you need to know, not what you want to hear.

    Have they run specific nerve tests (EMG or nerve conduction studies)?

    If I were you, here is the thought process I would use on whether or not to have surgery:

    What has the doctor said will happen if you do not? Is your back in a dangerous place, are you risking more "new" damage?

    Do test results show your discs impinging your nerves? Although my back is fully fused and "looks great" on all tests, I finally convinced the doc to test my nerves specifically. The EMG showed I have permanent S1 nerve damage, and no surgery will fix or improve it. (I am moving forward with the spinal cord stimulator, which is pretty much my only option other than an implanted pain pump.)

    There is no guarantee about any surgery, let alone back surgery, and it is scary. Big big decision.

    But what are your options if you do nothing? Lay that on the table in front of you with the hope of 75% relief of pain. Is your gut leaning one way or another?

    Like I said, in my case I was one wrong move from a wheelchair with a terribly unstable spine. Are your other discs being unduly stressed because your L5-S1 is effectively gone? I would ask all those questions.

    Even though I have ongoing nerve damage, I still felt a big change after the surgery (the 3rd one). I gained 3/4 inch in height (lol), too!

    Today, since my S1 nerve is the "bad" nerve, I cannot sit more than 20-30 minutes, let alone anything else. I have learned to "live with the pain" with major medications, BUT I have no life. I live in my recliner, fully reclined to stay off the S1 nerve. I also have the numbness and tingling and electric shocks (I call them lightening strikes). The SCS (spinal cord stimulator) trial was a Godsend for me and for 5 days, I had most of my old life back. I will be getting the permanent placement hopefully this month yet and certainly in January at the latest. Waiting for the phone call as we speak.

    I really do know how you feel. I was so ambivalent for the 3rd surgery, after having had 2 that didn't help, and I had to be begged to move forward. When I met my 3rd doctor, though, and the first neurosurgeon I had used (other 2 were orthopedic), I KNEW. My intuition was at peace. I trusted him fully, and I had a great success, fusion-wise. We think my nerves were already permanently damaged, but no one knew that at the time.

    I will be thinking of you as you work through this decision.

    ( ( HUGS) )

  • Dear Scared2Death,

    I just had a 2 level TLIF surgery,(L4-L5-S1) performed on November 17th and incidently have my first follow-up appt. with the neurosurgeon today. I went through a very similar long term background as you describe ( back problems since high school and have had diagnosed DDD and spondylolythesis since 1998 )and went through the very same angst/uncertainty about whether to have the surgery as you describe also....you sound completely NORMAL to have such thoughts, as these are very big surgeries. Here are a few points to consider.

    1) The life as you describe it is no way to live. I too was bone on bone, and I believe the nerve damage potential of that cannot be predicted but why take the risk of it deteriorating to the potential point the surgeons can't fix it? Do you also have disc slippage Spondylolisthesis? You don't mention that, but the combe of DDD and bad slippage I think warrants the surgery...this was my situation.

    2) Technology has improved the success and recovery times of these procedures to a huge degree...just 5 yrs ago my situation would have required anterior and posterior incisions and a hip surgery to harvest bone. Now they did it all with one, albiet large, incision in the back but no hip surgery. Do you have to have a Ant/Post procedure? Multiple incisions does complicate things from a risk/recovery standpoint.

    3) The horror stories....I read them all too and I was totally scared to death but decided to proceed. I too felt much better in the time leading up to the surgery in November, and at the pre-op the surgeon teased me that "I bet you want to cancel??!!" I said no but really grappled with whether it was the right thing to do for weeks and was really worried about the recovery and ending up worse than I started. The surgeon told me maybe 50% of his patients are "acute" when they have the procedure and the balance are in an OK stage....at the time! I decided to do it on my timetable when I had things scheduled, rather than wait till I couldn't stabilize after a flare-up, like your box incident. Then who knows what kind of position you will be in to do surgery and how long you may have to wait to get in.

    Anyway, the horror stories...to some degree true but a necessary evil and I'm sure vary hugely by individual. Do not cancel because you are scared off by a post on how bad their situation was. I read one that said" when I woke up I knew I'd made the biggest mistake of my life" and "six months later still am in bad shape". Yuck, I had a hard time shaking that one from my mind.

    My recovery was hard, the 3-4 days in the hospital are no picnic but it does pass. The first few days home from hospital are hard too ( nice to be home, hugely, but that fades a bit with the pain ). But the recovery for me was progressive and within a few weeks I felt alot better. Managing the pain meds, trying to reduce that is, is hard but doable. My wife is also an RN so that was a huge help, but most things I had to do myself in terms of recovery. When you get home from the hospital, you will be more mobile than you think...I was able to do stairs as we live in a two story house...slowly, but I could do them. If you follow the doc's instructions, which are tested by numbers, you can greatly improve your chances of success. If you have stopped smoking, I'd say go for it. Also eat really well pre-op and of course post op. I mean seriously balanced nutrition, lots of veggies and drink tons of milk. Get lots of high quality protein and its no time to worry about calories. I gained some weight in recovery but I don't care for now.

    Sorry for such a long post here and I must run, but I hope these notes are helpful to you. Will let you know what doc says about my status. Good luck to you, hang in there.
  • Ask your self one question, can you see your self in the future in your present state, can u do your self more harm/damage by doing nothing, Most of the time these thing do not get better with time. In my situation it was a case of stabilizing rather then problem solving, Im in pain all the time but at least I’m still functioning to some degree, for this I am grateful. After all, the alternative sucks.
    A little back ground;
    I’m a 48yrs old male, I have: moderate to severe pain everyday of my life for the past 12 years,
    I was diagnosed with: cervical myelopothy, sever stinosis in the neck, and severe D.D.D ,
    At 37 I had to have a lamanectomy from C3 to C7 inclusive, do to herniated discs, affecting my spinal cord. The doctors have made it very clear that there is real nothing left to try, medically. Which means this is it…..
    Presently I can not feel with my hands, no sensation, I have pain from my head to my toes. I have been on every type of pain medication and all stopped working after a while
    Now I take Lyrica and and medical marijuana
    (My advice to the world ,” acceptance, never give up, keep your self occupied . get psychological help, just to put things into prospective. Try to smile)
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