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Trying to stay positive

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:27 AM in Depression and Coping
I'm sure my story is no worse than anyone else's and I know it's important to stay positive and hopeful, but sometimes that is really difficult.

I won't bore you with the details, but my lower back pain started suddenly and severely five years ago. Since then I have undergone a series of conservative treatments - drugs, hydrotherapy, physiotherapy, injections, epidurals etc. Then a microdiscectomy which failed. Then years of pain management which failed. Just as I'd given up hope (I was deteriorating throughout the five years) I was finally offered a three level disc replacement. This is pioneering and rare in Britain. I had to fund it myself as it is considered too risky. I re-mortgaged my house (I'm a single parent) and paid for the surgery (£40,000). This seemed to be the only hope I had.

The surgery took place on 1st December, nearly 8 weeks ago. 3 days after surgery I was in incredible pain (spinal pain -the stomach wound never gave me any pain at all), able to do nothing other than lie flat, or walk a few yards, slowly and painfully. I could manage a few stairs very slowly and painfully. I couldn't sit for longer than 30 seconds. I was unable to dress, undress, wash, or dry myself. I was unable to eat anything other than finger food (sandwiches and the like) as using a knife and fork is impossible lying flat.

Nearly 8 weeks on I'm still in exactly the same position. I have paid carers who help me with personal care. I can still not sit for longer than 30 seconds, or walk more than a few yards. The pain is unbelievable and of course sleeping is impossible.

I used to run a small business which is struggling without my presence. If the bsuiness fails I will have no income, and therefore no way to pay my mortgage (which is huge since I extended it to pay for the surgery).

The surgeon had expected me to be showing improvement before now, and has experimented with a variety of medication, none of which help. My rehab bloke tells me I need to get to a swimming pool to re commence the daily hydrotherapy I was doing before the surgery, but as I couldn't even get into the passenger seat of a car, let alone sit in it if I could, not dress/undress myself etc. I can't get to a pool.

I keep telling myself it's still early days and maybe I'll start to improve soon, but it's really hard to keep believing that when you're lying in pain 24 hours a day for weeks on end with no sign of progress whatsoever.

Lots of people (including medical people) warned me not to have this surgery. It's too late now. I made my decision and I have to live with it, but I can't help feeling I made the worst (and most expensive) mistake of my life.

I'm not sure why I'm posting this really, other than to see if anyone has any tips on remaining positive under circumstances such as these.


  • JANEY, you keep that chin up! you have every right to seek to feel better, ime sorry your in pain, is there a way to go see a doc to see if there isnt something amiss? not to be alarmist, but with that level of pain, there could be issues. dont give up or in to despair, the games afoot and in the first stages. be strong when you can, and stronger when you cant.
    there is always resolution, nothing bad lasts forever so dont fear for tommorow, it has its own measure of sorrow, and will be here soon enough. hang in there and keep in touch with us K?
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Hi Janey
    Just read you story, and I am feeling rather pathetic. I've no where near enough pain and strife as you have, but I'm getting low from time to time, and it's hard......very hard,SO. you have been doing bloody brilliantly ! and there will be some light for you, there has to be.
    I'm also Uk based so if you need a friendly 'ear' then PM me

  • The surgeon is in London, and I'm over 100 miles away in the Midlands. I can barely get downstairs, let alone to London, or even to a local hospital to have Xrays.

    Unfortunately, you say nothing lasts forever, but pain does last forever for far too many people (many on these forums, for example). I never expected this surgery would make me pain free, I just hoped it would make the pain more bearable than it was prior to surgery so that I could at least get a few bits of my life back.

    Lying here I have no life at all.
  • It's not a competition! Pain is depressing when it doesn't get better for everyone. Would be great to get in touch. My email is janehatton@blueyonder.co.uk
  • Ime right there with you hand in hand in knowing pain is eternal to some, how you cope and put up with it with grace and courage is the hard part. I say you have the courage down pat, deciding to go ahead informed and positive in your attitude to try and get better, not many people would or could do what you did. Grace coz your there seems to still be a spark of hope there. keep it lit, harbour it and protect it, it will be some thing that can carry you through. I hope you find a measure of peace to ease the way.
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • Hi Janey
    Oh Hon, I SO understand....I can not sit or stand for more than a couple min and I can't sleep. Always hurt. and then they send me to a Dr 100 miles away, like it's no problem for me to ride in car that long! It is so frustrating. Sometimes I don't see how I can make it another day, but I get through it only one hour at a time. Makes for a very long day doesn't it?
    Keep doing the best you can, and know you are not alone, we are all here for you, ok?
    I live up north too,in WI, it's 10 below right now!up

    :H Blessed
  • I think I've used up all my resources now. I've tried so many things over the last 5 years, and tried to be patient and positive about every single one of them. Every time I've been let down. Not one of them helped.

    This operation was a huge gamble, both financially and in terms of my life, and I banked everything I had on it paying off. I never expected to be pain free, just for the pain to be reduced to a manageable level so I could at least work and support my family. Instead of which I'm lying helpless in bed, dependent on paid carers, rapidly running out of money, in horrific pain 24 hours a day (I don't sleep - it's 4.00am here) week after week, with no sign of any progress at all, however small.

    How do I stay positive under those circumstances? Nobody should be expected to live like this.
  • I really feel for you. I don't have your strength. I've tried getting through this an hour at a time, but then the hours stretch into days, and weeks, and months, and I can see nothing ahead but more of this.

    The nights are the worst. Lying alone in the dark with no way of relieving the pain, trying to tell myself that it's early days and I might get better, but not really believing it any more.
  • You need to get to the hospital and get some pain meds and see a Specialist and another MRI. There should also be access to rehab somewhere if you have insurance. Please look for another Surgeon to help. You may have an infection that can only be seen in xrays or MRI and bloodwork. Have you had a temperature? And apply for disability and even get a lawyer or call the Ombudsman or patient relations person to see about a settlement outside of court. You can't stay living like that. Good luck. 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 think my surgeon is the only one in Britain to do three level disc replacements (I may be wrong). I don't have insurance, hence having to pay for it myself, and I can't get back to hospital because I have no mobility (and no more money).

    I don't think it's an infection - I don't feel ill other than the pain and the depression - and I don't think the discs have moved, because I feel the same as I did 3 days after surgery when I was Xrayed, and they were in the right place then. No better at all, but no change.

    I couldn't sue the surgeon because of all the disclaimers I had to sign. I always knew this surgery is still in its infancy and that it was a risk.

    A risk I now bitterly regret taking.
  • dilaurodilauro ConnecticutPosts: 9,842
    Janey, many times the emotional aspect of pre and post surgery can be harder to deal with than actual physical pain.
    Once you start living in chronic pain, so many things look bleek and seeing daylight gets tough.

    Patience some times is the thing that will help you.
    8 weeks post surgery is really not a long time. Sure by now, you should be seeing some positive improvements. For some people a lot depends on how long were they dealing with disc pain, how much was pressing on the spinal cord and how long the actual surgery took. Those items can play a huge role in determining how long the recovery will take and when you will really start to feel better.

    I do know that the more you keep inactive, no matter the pain, the longer your total recovery will take. Many times during my previous surgeries, I didnt want to do a thing and that made things worse.

    Besides saying he was surprised, did your doctor provide you with any rationale as to why? Since he is experimenting with you in terms of medication, he must have some reason as to why. Would you consider you biggest problem to be nerve pain or basic back pain?

    Just try to think ahead and believe that in a short time you will see improvements. Dealing with your problem for 5 years I am sure was tough, now being 8 weeks post op, it is still fresh.

    Never give up, never feel defeated. There is always a bright light ahead.

    I am curious as to why you were basically told not to have the surgery?

    Take care, think only of better times
    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
  • You are right, I should be more patient. I knew that recovery would be a long haul. Just not that I would still be this bad this long after surgery. Other patients who've had this particular surgery (3 level disc replacement - there aren't many of us around!) seem to show signs of improvement long before this.

    At 6 weeks post op the surgeon thought it might be inflammation from the surgery and put me on a very heavy dose of steroids. When they made no difference he concluded that it wasn't inflammation. I think he's at a bit of a loss, and being so far away doesn't really know what to do.

    The reasons I was so strongly advised not to have this surgery were that it is still very much in its infancy and there is no conclusive evidence that it works. It is major surgery and therefore carries high degrees of risk. As it is new, there are no studies on the long term effects of these discs. One surgeon said that doing disc replacement on a disc which has already been operated on (as one of mine was) was "madness" as the risk of nerve damage was very high.

    I am trying to be patient. It's just that with a track record of being patient with every new treatment, none of which worked, everything is resting on this last chance to work. As it is showing no signs of that, and I'm in horrendous pain, pretty well bed-bound, it's really hard to keep on being patient. Maybe if I could see some - any - kind of indication of progress, however small, it would be easier. But there isn't any at all. The pain remains and the weeks roll on (and the money for carers etc, as well as all the usual bills, continues to flow out).
  • First I just want to say I'm so sorry for what you're going through. I remember after my fusion how unbelievably difficult it was, in fact I'd rather have a baby...lol, I had 2 of them naturally(not bragging-fact is I had them very fast so I didn't have any other options)My point is though that I think we can all understand some part of what it's like after any back surgery....

    I agree w/Charry about getting rechecked and rehab but if you don't have insurance then I know you'll make due so when you're able the surgeon who did the surgery can give you some baseline exercises when the time comes. I'm not talking about major stuff just stretching/strenghening stuff. Also most of all you absolutely need to get some control over the pain via meds...the rationale obviously is the meds won't take all the pain away but should be enough where you're able to get to the bathroom etc. If you don't mind my asking what are you taking? Is it the same as what you took pre-op? Do they give you a muscle relaxer?(helps big time) Is the surgeon still helping you with pain meds? There are ALOT of cheap options. I don't know how it works there but if you have to pay you can ask for your meds to be changed for $$$ reasons.

    I also agree w/Ron as far as patience however you can only be patient to a point after surgery if there hasn't been any progress. It is early and it is major surgery hopefully they can add,increase,change your meds & it will get you kickstarted. Frankly, I would call the surgeon and ask to speak to him/her. It is your right and you can express your concerns and add that not only for the post-op concerns but all of the possible concerns that immobility may cause.

    Is it normal there to be sent home being unable to get to the bathroom? Like did they give you a kind of in between hospital-home type option to go to?
    If you go backwards in any which way can you call an ambulance to get you to the hospital? If you don't have insurance isn't there a hospital you can go to where they cannot refuse treatment? There is here so again I don't know how it works and even though you would be concerned about the bill maybe you can pay on it and get some help...we have to be our own advocates in the long run.

    If you're feeling concerned listen to your gut even if it's just calling & speaking to the doc. When is your first post-op follow-up? Insurances here cover follow-up post surgery for a certain amount of time, so for as much as you paid it sounds like you should be entitled to the same. Is there someone who can drive you and you can lay in the back seat of the car?

    Well good luck and keep the faith it will get better :)

  • I may have misled - I can get to the bathroom which is fortunately just next door to my bedroom. I can't wash myself or dress or undress myself so I have carers who come in and shower me every day (when they bother to turn up).

    I also gave birth twice - the difference is, you know that labour will only last a few hours. This goes on forever!

    I'm in occasional telephone contact with my surgeon who has changed medication a few times - at least I don't have to pay for that. I was on (I think they call them different things here) voltarol, amitriptyline, oramorph and paracetamol. Now I'm on steroids (prednisolone) and MST (slow release morphine). Oh, and Tramadol at one point.

    As the steroids have not made any difference, the surgeon doesn't think the pain is caused by inflammation. The initial disc that was operated on resulted in the nerve being crushed by scar tissue. It's the same severe nerve pain I'm having now, so I just hope they haven't damaged it further this time.

    I should have gone for a post op follow up appointment and Xray 6 weeks after surgery, but I can barely get downstairs let alone to London. I couldn't get in a car never mind curl up on the back seat for 3 hours. So I've had to miss that appointment. Next one is at 3 months, but unless I rapidly improve I can't see me making that either. I hired a private ambulance to get me home at a cost of a few hundred pounds and a lot of pain. If I had to get an Xray I could hire a private ambulance to take me to a local private hospital and get them to send the Xrays to the surgeon, but it would be very expensive. He says there's no urgency yet.

    In the meantime, I lie here wondering if this op was the most stupid expensive mistake I ever made. I'd have ended up like this eventually anyway, but it might have taken months or years and I'd have saved myself all that money and all this horror.

    I know. Yes. I have to be patient. Lol.
  • My heart goes out to you and I feel so bad when I read an experience like yours. Did you ever get a second opinion about this type of surgery, and were you advised on the success rates and recovery time? This type of surgery is not done too often here in the US, and they would opt for fusion with instrumentation for multiple levels. I don't think they should have let you leave the hospital in your condition. I didn't walk or go to the bathroom at all when I had a 2 level fusion, but my surgery wasn't extensive as yours. I don't know all that they do in disc replacement surgery and it surely must be an enormous undertaking.

    I hope that the surgeon gives you adequate pain medicines to help you get over this painful ordeal. Again, I'm so sorry you are in so much pain and can only offer you moral support. Please let us know how you are doing, and we look forward to hear that you improve. Take care
  • I had been advised by all the surgeons I'd seen previously not to have a fusion, and for years they just said there was nothing I could do and I'd have to live with it. Pain management failed to find a solution, and I was deteriorating. Then I met this surgeon who performed a discogram which demonstrated that all three discs were pain generators.

    He told me he thought a 3 level disc replaement might help, but it would cost over £40,000. This was the only hope I had, the only offer other than to continue to deteriorate until I ended up in a wheelchair unable to work or pay my bills.

    So it seemed worth the risk. I aproached the Primary Care Trust who sometimes fund treatments that our NHS won't fund. They sent me for a second opinion. He said I'd be mad to have this surgery. The PCT strongly advised me to cancel the surgery because of the risks involved and because there is no evidence to suggest it works. And, of course, refused to pay anything towards it.

    So I should have cancelled. but this surgery represented the only hope I had. I was suicidal with constant pain, knowing that the only future I had was for it to get worse. I had to take this chance.

    I raised the £40,000 plus another £25,000 to cover extra expenses and a period of lower salary, prepared the business for my absence, sorted out a care package for my mother (who is severely disabled and I was her primary carer), packed my bag and went to London to have the surgery.

    Brave, or stupid?

    At the moment it's looking like it was the latter.

    And I know I can't live like this for much longer.
  • Hello.
    I'm sorry to hear that you are in so much pain which is something I'm not immune to. I am 39 yrs old and my low back problems started 21 yrs ago. I've just recently made the decision to have surgery. It was finally performed on July 2nd, 2008. It's been over six months since the surgery and I still need considerable pain management thru medication and I've had to stop the agressive stretching and exercise due to retrogression in my recovery. I'm havind swelling and pain and there may be the posibility of a low grade infection developing. Tests are being done to find out what is going on. In Canada, all of our medical procedures are paid for thru by our public health care system, so I can't imagine having that burden weighing on me as well. I had a decompression and fusion with Titanium instrumentation at L5, S1. Two months post op I was still in considerable pain, but was taking alot of pain medicine which helped mask it, but I could still only bare short walks, sitting for short periods but mostly lying down at that stage. My surgery was done more conventionally from the back, but in your case thru the stomach, I've heard from Doctor's that the recovery time is greatly increased. So I wouldn't be too concerned at this stage. Like I said, it's been six months for me and I'm being told by my Physio, Surgeon and family Doctor that it could be up to one year post op before we should get too concerned that there will be continued problems. So try to stay upbeat. I know it's hard. I'm used to 16 hour days of hectic activity and now have to resort to staying home at a very slow pace. You get used to it and the hope that it will get better keeps you going. My wife has been the most important person to me thru all of it. Without her, I don't know what I would have done. She helps me stay positive so I can push through this each day until the day I will be able to get to normal activity. So try to surround yourself with people that can give you a positive attitude. I hope that hearing my story helps you see that at two months it is still really early in your recovery. So don't get discouraged. Keep your head up and I hope that your recovery turns around for you soon. Frank
  • Unfortunately I don't have the luxury of time. If I don't get back to my business soon it will fail, leaving me with no income and no way of paying my bills. Then I lose my home, and my daughters and I have to find somewhere to live.

    Also, I don't have a loving and supportive partner. I do have some good friends, but they are all busy with their own lives. My kids are great but they are having to care for me, which I hate.

    I've been in considerable, and worsening, pain for 5 years now. Without exception, every treatment I've tried in that time has failed to help me. Every time I've told myself to be patient and stay positive, and every single time it's failed.

    This was always a gamble - I staked everything I own on this surgery helping me. And once again there is no sign of improvement and once again I am having to tell myself to be patient and stay positive. But this time I am in more pain than ever before, less mobile than ever before, more dependent and helpless than ever before, and I've risked more money than I have on this. And 8 weeks on from surgery I have yet to see any sign of progress whatsoever.

    Please tell me how I remain positive and hopeful under those circumstances?
  • I am so sorry you are going through all of this. Still, 8 weeks is so very early in the recovery process. I know from what you post that you are not very mobile, however, the more walking you can do, the better. Just try 15 min. at a time, just around in your bedroom if you can't make it down the steps. You will be surprised at how much better you will feel in a couple of days and how your mental attitude will be helped.

    Unfortunately, we can't turn the clock back or unring the bell. What's done is done and cannot be changed. We have to look forward now and not backwards.

    I am 7 months post-op from a one level fusion, and still have pain every day. Nothing like I had before surgery, but still hard to deal with sometimes.

    As many have said on this site, don't look for daily improvements, but measure your progress by weeks, or sometimes, months.

    If you do make an appointment with the doc, I'd suggest that you NOT lay down curled up in the backseat. A better option would be to get in the frontseat and recline the seat back as far as it will go. If you put a trashbag on the seat, it will help with the turning and getting comfortable. Do the drive in 20 min. intervals if you need to...get out and stretch your legs a bit.

    Sweetie, the longer you lay in that bed, the worse off you will be. I know it's hard, and it hurts so bad, but you have to make yourself get up and walk a bit. The longer you stay in that bed, the longer your recovery will be.

    Take care and try to stay positive, no matter how hard!!!
  • Believe me, keeping a positive attitude is much easier said than done. My wife believes that I myself am fighting depression. It just gets to you. Like I said earlier, I have been active my whole life. I've been in construction for 25 years and now find it difficult to swing a hammer.

    My nurse for my first day post-op was a woman who had been a nurse in the spinal department for over 20 years. She told me that 50% of my recovery was going to be in my attitude. From what I've read, depression goes hand in hand with this incredibly invasive surgery. Joy is 1000% right, you need to get out of that bed and walk. I completely understand the pain you are in Jane. Coming out of surgery and for many many days afterwards, I have been in more pain that I ever would have thought possible. My wife told me later that seeing me in that kind of pain while in the recovery room literally made her nautious. But the fact remains that you must get out of bed and walk. It's the best thing you could do for yourself. You will feel better Jane. Maybe not tomorrow, but soon.

    In the meantime, try to find joy in the simple things in life. I don't know if you are a God-loving woman, but I would ask Him to help me stay positive.

    Hope this helps Jane.

  • around my bedroom, although it's excruciatingly painful and I'm in danger of fainting after a few minutes and so have to go through the agonising process of lying down again.

    If I measure my progress in weeks, it's non-existant since the operation, 8 weeks ago today.

    I wouldn't be able to bend enough to get into a car, whether back seat or front seat. If I end up having to have an Xray I will need a private ambulance to take me to a local private hospital and back. It will cost a fortune, but if my surgeon says he needs to see Xrays, that's what I'll have to do.

    I lost my faith a long time ago, and unfortunately there are no simple pleasures that the pain doesn't ruin. I am usually an avid reader, and bought lots of books knowing I would be lying down a lot (had no idea) but I haven't opened any of them.

    Even eating a meal is a nightmare. Lying flat I can't use a knife and fork, and so I live on sandwiches. I haven't eaten a proper meal for over 2 months. I haven't enjoyed a meal for 5 years, because the pain of sitting to eat was so great even before the operation. Now I can't sit for longer than 30 seconds.

    No-one should have to live like this.
  • Janey, I had to tell my Dr. I wasn't getting enough pain meds and I went from MS Contin from 30mg once a day to 30mg every 6 hours. I too am housebound but I have a recumbent stationary bike and a slim glider where it is something like cross country skiing so you don't move your back. I think if you're on the right pain meds you'll start walking like Joy says time yourself walk 5 minutes and increase slowly each day. Thinking healing thoughts. 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
  • Its 07:46 here in South Texas. Ime here gwtting ready for class, I prayed for relief for you over the weekend, There may be relief in another medicine change, I was on an anti-seizure med for a long while for the continous muscle spasms,and i finally settled the pain to a 7 or 8 most of the time. is there a way to get something like that> its distressing that there is that much pain at those levels fo so long!
    dont regret seeking relief,ever, its your right to find what you can when you can.
    Sometimes through the darkest days, there was only sorrow,and pain, totally entwined and feeding each other, I had to partition the emotional part of myself from the physical. everyone does it, Over time though, I had become so involved in the pain/emotion cycle it became one in the same.
    Ime not deriding you or critisizing you or your brave efforts to have a go everyday, I admire your guts and determination at still willing to fight the depression, dont let it get to you, there is always change!
    fear, anger, depression, hopelessness, weakness, fighting a losing battle... sound familiar?
    You have it in you to fight. every day, when it all comes down to a fine point, its all you have sometimes, you learn to harness the negative emotion of anger at the situation, i dont recommend doing this, yet it has gotten me through the initial phases, trouble is that being so strong an emotion, it can take control over your entire life,
    anger gives you the energy to get up and fight, but it burns hot and deep,if you have the inner structure it will help, if not it will consume you to the last glimmer.
    sometimes all there is is the fight, the grinding tooth shattering grimness, but is fighting for your very wonderful and perfectly good person.
    thats the sad part, all our drives and passions dont diminish with our injurys, they are still there, frustrated and denied outlet, so they end up some of our greatest enemys,
    what youve done before, will pale before what you have yet to accomplish, there will be a time when upon looking back youll see the torn battlefield of the soul, and see your new self, harder, stronger and more complete.
    you have all the tools you need to fight this bone wearying battle inside, your fighter, a winner, dont ever forget that.
    every person has a worth, a dignity and value, you did nothing wrong, your only trying to make a right, dont deride your self at making an informed and hopefull decision!
    practice at finding the center again, you have strength beyond your ken yet to use1
    dont let fear take over you, harness it to shatter the depressing circumstances!
    We'll be here for ya during the ups and downs K?
    Lets share some of the burden together.
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • In a new development, my physio thinks that my pain is caused by a problem at L1/2. His theory is that this was the problem all along. In which case we've spent the last 5 years treating the wrong discs.

    If he's right, it explains why every surgeon and specialist I've seen has described my symptoms as "atypical" - of course they are, for that disc! And it explains why none of the injections (nerve root blocks, steroid injections, epidurals, facet joint injections etc etc etc) worked - they were injecting the wrong disc. And why the first operation five years ago didn't work. And why the latest massive surgery didn't work. And in fact why the latest massive surgery not only didn't work, but excaserbated the original problem.

    No idea what to do now. If he's right, I will never walk/stand/sit etc properly again until that disc is dealt with. Previous medics will immediately go into defence mode.

    I keep re-playing the sheer Hell that the last five years, and particularly the last few months, has been - not only for me, but for all around me - and how different it could have been.
  • that if maybe he/she is right gives more hope! Although did he say how the theory came about? Did he see anything for this conclusion? Other than based on what's going on now? just wondering. Plus your discogram was consistent with the pain you were having in those 3 disc levels. I say this because this doctor needs to help you it is his responsibility & it sounds like your a strong woman so maybe just be asking alot of questions and don't let him give you alot of excuses...again though that disc maybe another problem.

    So it sounds like they are helping you with meds. The nerve pain med is a great idea! Amitriptyline is used for nerve pain(and many other uses) for some folks are you still taking that?...I couldn't stand myself without mine, I take Lyrica! The Morphine & maybe an increase, a nerve med and throw in a muscle relaxer it may be some more optimism! All he can do is say no so it never hurts to ask.

    Everyone is right pls don't beat yourself up, you'll get through this. I saw you mentioned scar tissue which is what I'm dealing with and which is why I mentioned the back seat of a car not necessarily curled up but with a few pillows I can lay on my right side in the least amount of pain. I tried every which way in the front but it made it worse I cannot lay on my left, or on my back or sit longer than 15 minutes so that was what worked for me. How you get there is neither tit for tat but the x-rays will probably for sure need to be done at some point. May I ask another question? (I'm not trying to be nosey w/all the questions, just wondering) Can you inquire with the doc why the x-rays are not included post-op? How much is 65 lbs in US $$$$ ?

    Good for you walking around the room I did that 1st too then moved a little further around the upstairs each day. You might feel dizzy/nauseated when you get up from the pain, dehydration for one may cause your blood pressure to be low etc or needing more food for your blood sugar. You can do this!!! Try to scoot over to the bed and sit for a few minutes then stand it may help. When we lay down alot then suddenly stand just that alone can cause a little drop in blood pressure which may be why you are dizzy. There are alot of reasons and I'm not a doc just my experience but you might want to mention this to him as well.

    Remember this surgery hasn't been done so far on alot of people and everyone is different so try to keep your very pretty face up high and keep trucking!!!! We have all had to make alot of tough decisions in our quest to find relief and like I said before we follow our gut. I was wondering if I made the right decision and my pain mgmt doc told me I'd drive myself nuts thinking that way...He was right!!! So after that I was offered a Spinal Cord Stimulator which has been a miracle! Although as I've posted it isn't quite right & needs revised but for me it really has helped that insane nerve pain.

    Take care

  • This physio, like every other professional who's dealt with me, said that my symptoms (pain in buttock area) weren't consistent with L3/4 and lower. Those discs would have given me pain, or pins and needles, or numbness, in my leg. I've never had any problem with my leg. No other professional has questioned the diagnosis, even tho I have the "wrong" symptoms.

    This physio says that slthough my symptoms aren't consistent with L3/4 and below, they are consistent with L1/2. And when he looked at my MRI scan, lo and behold, L1/2 was damaged. Not surprising, as I fractured L1 in a riding accident when I was 23 - which they all knew about.

    As far as investigating this further is concerned, I can't get into a car to sit/lie in any position. I can't bend, sit or anything. My sitting tolerance is 30 seconds, and each one of those is agony.
  • you might want to google dermatomes it will give you a picture of ball park areas your "levels" affect. I don't know if you had other symptoms other than the bum but I can't imagine a doc working on the 3 discs you had done without other symptoms. The bum though is more than L1-2. See how your symptoms match up to the areas on the dermatomal chart. Is this the same guy who did the surgery? Surely he would have seen this damage before surgery??? When he says damage does it look old or new?
    have a great day
  • showed on an MRI scan taken in 2004. This surgeon never mentioned, let alone looked at L1/2. The discogram was only done on L2/3 and the three below that.

    Even 'tho the symptoms are typical L1/2, and I had no symptoms at all typical of L3/4, L4/5 or L4/S1, no-one has ever even mentioned L1/2 in all the five years since this pain started.

    Seems so obvious now, but what can I do?
  • My fusion was done at L4/L5. My main symptom was a horrible burning pain in my butt and it went down one leg. And I didn't have any tingling/numbness. Strange, huh? I hope you are getting some relief now? Take care.
  • That's what you would expect - the pain down the leg, and that's what I never had.

    No, no relief - still exactly the same as I was 3 days after surgery, 8 weeks ago. But until someone addresses the issue of L1/2, I will never improve.
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