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been lurking - now want advice!

nelnnel Posts: 402
I have been lurking for a couple of months and now feel that I need to ask a question.
I first had sciatica 3 years ago and it was (mis)diagnosed as piriformis syndrome. It was really bad for a couple of weeks, better for the next two or so then pretty much ok since. Except for continuing leg cramps in my right leg that the Dr and physio both said weren't connected to the sciatica. I never believed that as I had never had the cramps before and that was the bad side if you see what I mean. My back has been a little stiff since (particularly in the mornings)and on occasions I suffered with leg pain if I sat for a while.
I have kept active since swimming at least a mile each week day (except for when the cramps get me) and walking about an hour each day with the dogs.
Then in March this year I started getting pain when turning in he pool but I kept ignoring it and hoped it would go away. By April 3rd I was back to having full on sciatica - pain, tingling, burning etc you all know what it's like so I won't go on. I am in England so had to wait for NHS scan which I got in May and it shows an L5 S1 herniation - more on that in a bit.
Anyway I had really bad pain for about a month, then it eased a little so that I didn't need the meds all the time and, perhaps I did a bit much but the full on pain came back in the last week of May. It seemed even worse then but I think that I just couldn't cope mentally with it if that makes sense.
I suffered bad pain for another couple weeks and then it eased a bit again. I then saw the orthopaedic consultant privately (I have insurance but I have had an issue with my GP refusing to let me go private grr). He did not have the scan at this time but his examination led him to think that probably I needed surgery but he couldn't say without the scan. It took another 4 weeks for him to get it.
In the mean time I suffered another recurrence of pain but this time it was different - sort or sharper and it made me groan out loud. This pain definitely come from my back - I feel it sort of jag out of my spine and all the way down my leg. The other pain was all in my leg. To add insult to injury I then developed all the horrid med side effects and so couldn't take the tramadol or codeine because they made me sick.
When the surgeon saw the MRI he showed it to me. My L5 S1 disc is totally black and there is a large right sided prolapse. He talked about the options. He said that an epidural would only provide temporary relief from the leg pain and would not sort out the back pain. I asked if he thought the disc would go again and he said most likely given that it's gone twice in 3 years. He explained that the best option is probably the discectomy, decompression and fusion. I agreed and I am due to go ahead on august 4th.
The thing is that since then the pain has gone again. Not totally but I do feel better. I know that the surgery will make me feel worse than I do now.
My questions are:
1) As the pain has come back twice so far in this episode is it going to come back again?
2) If it doesn't will it come back say in a year? Or less?
3) As this time is worse than 3 years ago will next time be even worse?
I think I am more scared of the pain of the sciatica than the operation.
Also I have been off work because of this since April 3rd. I really cannot keep taking time off because of the pain because I am a teacher and it is difficult to not be there. As it is now the summer holiday I cannot even try going back to see if I could cope. I don't think I could do a full day of work as my back gets very stiff and sore after even the moderate activities I do at home.
Also I have pretty much stopped doing anything that seems to make it worse.
What should I do? Should I have the op now? It seems to me that it is likely that the disc will go again and I guess it could be even worse next time.
I was thinking of doing things that might make it worse just to see. At least if I was in pain again then I would feel better about having the op!
It's just so difficult. I don't want to have the surgery if I can live without but I also don't want this coming back the day after I decide not to!
Sorry to be so long winded.
I like this forum because everyone on here Knows how I feel. I also appreciate that there are lots of you much worse off than me and I can't imagine how you cope. My mind just wants to snap when the pain is bad.


  • hi...i'm pete. you have a tough decision. i've been trying to think what would be best and i must say i really cant decide either.
    my gut feeling is to wait for the pain to come back full force then have the surgery.
    i dont think i could go into surgery with my condition of less pain. wouldnt you feel better to wait until the next flare up. And what about natural fusion? i've heard that if you wait long enough and the disc continues to dry out eventually it fuses on its own. i have a friend who by the way is also a swimmer who after years of disk trouble finally found out it had fused on its own. i guess i have to throw this question back to you because its really a personal decision...oh...how about getting second opinion from spinal surgeon?

  • Hi Nel,

    Welcome to our spiney world. Tough stuff you are dealing with. I was there two years ago and took the surgery route.

    This is a decision only you can make but what helped me decide was that I was not living life to the fullest. Sure you can go through life and avoid back pain by being very cautious; but for me it was a matter of getting through to the next phase. Are you still on pain meds? They are sometimes very good at masking symptoms. But they don't take the actual problem away.

    I suffered with back and sciatic pain for over five years. I must say that I regret waiting so long to get it seen to. Many spineys on this site will agree that the longer you suffer with nerve issues, the longer it will take to settle once something is done. Am I now pain free? No! But at least I no longer worry about every little bend or twist.

    I agree with Pete - if you are worried, ask for a second opinion. Do you know anyone with back problems who might recommend someone? The problem we have with the NHS is once you say no you go to the back of the que. If you think you will have another flareup can you stand waiting again? All things you must ask yourself.

    This site is a great resource and has been a real help for me in deciding about my op, preparing for it and then in the recovery stage. Stick with it and ask all the questions you need to. There is always someone here to help.

    Take care and good luck with your decision!
  • dilaurodilauro ConnecticutPosts: 9,832
    That is a decision only you and your doctor can make. You have the final say. You need to find out all the Pros and Cons of having or not having surgery.
    Then I would seek a second opinion.
    When it comes to surgery you want to have doctors that agree with the action plan. If the second opinion is different from the first, then seek a third opinion.

    I would also make sure that you attempt every conservative treatment available. Things like ESI,
    Acupuncture, Physical and Aqua Therapy, Heat/Ice Therapy, Passive traction, Ultrasound/Tens, Massage Therapy have proven to help many people avoid surgery.

    Those members who have had multiple surgeries (ie Pete I believe 6, I have had 7) will almost always say, do what you can to avoid surgery. There may be times when surgery is the only option, but give other actions a thorough try.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Is the L5-S1 herniation the only problem that showed up on the MRI? It seems like immediately going for the fusion is a big step. Did you ask about having a discectomy or might you be a candidate for another procedure such as ADR or something like the X-stop??

    I don't know of any studies that say each episode or flare-up of sciatica becomes worse, but I also have never heard anyone say that with subsequent flare-ups, they increasingly got better. It seems that usually once a weakness develops, it becomes a permanent part of your life!

    Fusion just seems like a very drastic treatment to do first, as there is no "undoing" it once it is done.
  • Thanks for all the replies.
    The ortho surgeon said that the discectomy alone would not solve the back pain that I have been having and also he suspects that I would re-present with back pain later and need further surgery to fix that.
    The problem is that, although I now get to use the private medical insurance, everything seems to take ages.
    If the delay caused by him not getting the scan hadn't happened I would definitely have had the surgery as I was in so much pain.
    I guess I will see what happens over the next two weeks. If I continue to improve I might delay surgery. If the pain comes back I think I will do it.
    I have stopped swimming mainly because I haven't been able to drive far enough to get to the pool.
    I think I need to try being "normal" for a bit and see how it goes. The surgeon said that a lot of people improve quite a bit because they stop doing stuff that hurts but if they went back to normal living then the pain comes back. I think I might just push it a bit and see what happens.
    Two weeks ago I was certain I would go for surgery if offered it because the pain was so bad. In May it hurt so much I think I would have volunteered to be concious for the surgery if it would make it better!
    Getting a second opinion is hard because I need to get the GP to refer me again and that was hard enough the first time!
  • yes it's a tough health system there in the UK but if you have the private health insurance cant you get the insurance to pay. do you still have to get the GP APPROVAL JUST TO GET 2ND OPINION?
  • As you know, there are things that are agrivating the back and leg. One of the hardest things is to start to modify what we do, in order to minimize the problems. I don't swim, cause the movement of all of the spine creates increased problems. So I walk, a lot! and stretch and heat and cool and all kinds of things to relieve the sysmptoms. Sometimes, nothing works and meds are relied on to give me a break from the pain. It is an individual remedy for each of us!

    I told myself that I would not have surgery until I was in a wheel-chair. At least then the view is the same, LOL. However - events of the last 2 weeks have allowed me to realize that I will be on my way to at least have a consult with a Surgeon. Because we will or should get better info from a surgeon looking at the problem and trying to sort out a solution for you too!

    Keep an open mind and grab a second opinion as you move through this process.
  • Yep - gp has to refer for private cover to pay out. The reason I has to wait 6 weeks for MRI was because original GP wouldn't refer to private system.
    If I had not had that wait I would have had surgery by now. For better or worse who knows!
    I am going to push myself this week - I want to know if I can live like this properly or not and there is only one way to find out....
    My husband has said that having lived with me for the last 3 and a half months the surgery seems like the best thing even knowing all the negatives! I suppose he sees the worst of it while I am out of it!!
  • Welcome to the club!
    Unfortunately,nobody could give you answers on these questions.In my case,it got progressively worse.The funny thing is that "pushing" it is not a good indicator.I've had my disk go out from a simple shake of my toothbrush.Then,I've passed strenuous tests and it held up.
    Anyway,fusion sounds a little extreme if it's only a herniation without DDD.If your spine is not degenerating,MicroD could be the better option.
    Why don't you try some Physical Therapy during the holiday.Might be surprised how effective it can be.
    Epidural injections,oral steroids,massage...You have options to try before surgery.
    Whatever you decide,we'll be here for you!

  • Hi again,
    I have tried physio right at the start- had about 20 sessions with no improvement.
    Today I tried walking faster and up hills. I found the first hill ok but then I could not do the second one. Since then I have been a lot stiffer around my back and have had some hip pain.
    I don't know whether it's relevant, but for the last week or so I have noticed some mild sciatic type pain in the "good leg". I wondered whether the disc might have burst a bit that side taking the pressure off the other?
    Hmmmm. It's so difficult. Anyway I am going to continue with trying to live normally for the coming week then I'll speak to the surgeon again.
    I am an active person and my holidays are nearly always centered on hillwalking etc. These are things I don't want to give up. If I can continue to do them without surgery then that's great! If not then I will risk the op. I also can't envisage giving up swimming as it's just about all the exercise I enjoy except for the walking.
    The surgeon did say my disc had "had it" but does that mean it will go for a third time or not?
  • The decision to have my fusion was simple because 1)the pain severely impacted my quality of life and 2) the pain was severe and constant- it never let up.

    I did have a microdiscectomy prior to the fusion but it resulted in a reherniation 1 month later. My lower back pain and sciatica never let up. The nerve pain was atrocious and I had nasty muscle spasms too.

    My life was reduced to being in bed a lot because I couldn't sit. Going out was problematic and car rides were difficult. I only drove when necessary and for short distances only.

    Now it's been a year since my 2 level TLIF of L4-S1 and unfortunately I turned out feeling worse. I have sciatica in both legs, and in one leg there is permanent nerve damage. This time my body formed scar tissue at both disc level around the S1 nerve, causing additional back and leg pain. I am waiting to have a pain pump put in so I can function better soon.

    Well, I did opt for surgery because of my circumstance and I do believe it was the right thing to do. The surgeon did fix what he could and he did his very best with all the problems I have. He was honest and upfront with me about possible outcomes and said I may feel better, stay the same, or get worse. Spinal surgeries just don't come with guarantees to completely take the pain away. I acknowledged this when I decided to go ahead to have it done.

    In my opinion, I would think about having surgery some more and see a couple more surgeons for advice based on your posts. You are still moderately active and can do some hill walking. Thankfully you aren't homebound or in constant pain. My concern would be the risk of permanent nerve damage by waiting too long. I would ask the doctor about this. Only you and your doctor can reach this important decision to have this major surgery. Take care
  • Thanks for the advice. I have been walking up some little hills and have been swimming twice now. I have also been driving further.
    I have made an appointment to see my consultant next week on thursday (he is on holiday at the moment) so I am going to keep trying to be normal until then.
    I have found that with the extra activity I have been suffering with a lot of low back pain and have had more twinges in both legs.
    I am going to see what the consultant says. By then I think I should have a better idea of my limitations.
  • i have just sent you a private message as you are in the uk {like me } i can advise you about where to go and other things .so contact me via PM as we are not allowed to discus names and hospitals due to possible litigation.. hope the pain is under control mean while get yourself an acticare on 30 day approval See www.acticare.com for more info
  • Well today I had a significant spell of leg pain and I think it's like a "hello if you don't have the op I'll be back!". Hmm. I'll see how it goes until I see the surgeon on thurs.
    I can't be the only person to experience an improvement during the wait for surgery. Especially in the uk with the notoriuous (sp) uk. any one else like me?????
  • Meydey, sorry to read that you are having more problems after surgery than before. Have you gotten the pain pump?
  • I didn't get to see the doc until last night and surgery was scheduled for today. Thankfully he says to leave it alone while it's not causing the constant pain so that is what i am going to do.
    I don't feel 100% but I doubt the surgery would fix that!
    Lets hope I don't get another flare up next week now.

    Just for those suffering at the moment I spent 15 weeks or so in constant pain and then it did get better by itself no epi or anything. So perhaps the 6-8 weeks they use as a guide for surgery could be a little short in some cases?? I am just so pleased to be feeling better without the surgery - going swimming now gotta shift the 10 pounds put back on when incapacitated!!
  • Thanks for "emotionally putting it out there" like you did. Yes, being mentally/emotionally drained makes coping with pain (more) DIFFICULT. I hate seeing someone in such angst over their lives - because of my own angst.

    Although the decision to have or not have surgery is painfully difficult - at least it's an OPTION ! Ya?! That's a wonderful thing to HAVE!

    I appreciated reading the perspectives that others gave you, as well.

  • I teach also, it is never easy knowing when the best time for any operation and your condition itself could give you some indication, you time scale seem ambitious for the UK and everything takes time and is frustrating. You may well be one of the small percentage who had an operation and are fine after and the recovery time is some 18 months so you list of apprehensions will get longer I feel. As has been said by another poster if any of your questions were answerable I would be very dubious of this a a know result, we all want thing to be back to normal as quickly as possible and time is never on our side.

    It is the surgeon responsibility to be confident about the outcome and only time will tell if this has been successful, I understand that pressure of needing to be at work, but that should not be the overriding reason for invasive surgery, having had back pain it is likely that it will not just go away and if you are as active at the moment I would delay any intervention and the recovery time itself in long protracted and eventful.

    Many here have been in your shoes and had to make the same decision as you with a deep breath and leap of faith, we have no guarantees and expectation is a biggest word than we surmise.

    We are trying to be honest and tell you what we know from our experience, nobody here wants another day of protracted pain and this life changing episode, I saw a professor in Manchester and have been on a four week PM residential, we have all lurked in our time.

    Good luck to you.

    John re Lancs
  • Hi Nel,

    I am new to the forum, but I too had an improvement. I saw the Neurosurg in March and he said I was a candidate for surgery, but to try the second cycle of PT and add in the epidural injection. It worked I was absolutely pain free for three months.
    A week ago I flared up- much worse than before. Now I have numbness instead of tingling. Oh how I miss the tingling.

    Anyway I've put myself on bedrest with two walks a day with the dog. I am taking Ibuprofen and doing my exercising. I am getting a bit better. I had a new MRI that showed a worse herniation and a new bulge. L4-S1. I am scheduled to see the Neurosurg on Wednesday.

    I can walk 4 blocks without pain. I can stand for about 10 minutes. I feel like I should have the surgery even if I start to feel better. My Epidural Doctor feels that I should go ahead considering my age and good health.

    My fear for waiting is that I will cause more damage to my nerves. Since each flare up has been worse than the previous one.

    My fear for having surg is that I will end up having more surg.

    Not sure what to do. I understand how you feel. No one wants to have surg when they feel good.

  • Well it is two weeks since we decided not to have the surgery.
    I am not 100% and have been having mild (compared to the full on mind numbing pain of full sciatica) pain in my hip and feet mostly but also in my back and legs. The pain is in both sides now and I have some pain most of the time. My guess is that I am building up to another flare up as I felt a bit like this for a couple of weeks before the onset in April, but I suppose I could just be coming down from the previous 16 weeks of pain. I think that going back to work (term starts again in two weeks) may well be the straw that breaks my back! I have decided that if it goes again I will have the surgery as soon as I can get it.

    Does anyone know if I am likely to just remain in this state of mild pain for the rest of my life now? I suppose that, as it stands at the moment, I may not be much better than this even with the surgery.

    I have been swimming a few times a week, walking every day and have cycled twice. At least I can get out and about and I am not in the awful agony any more.
  • My Neurosurgeon used a great analogy when I saw him today.

    He said a disk problem is like a pebble in your shoe. In certain position you feel agony. When it moves and you step a certain way you feel a little pain. In others you feel nothing. Surgery is not a guarantee to remove the pebble permanently, but in some cases it works. My doc gave me a good percentage for success and I am healthy so I am doing it, no matter how I feel on surgery day. I want to do whatever I can to prevent a flare up in the future.

    Maybe you could wait until you next major flare up, if you never have one great, if you do chances are you will have one again.

    Follow your instincts: Which it sounds like you have done.

    Good Luck to you.

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