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anyone in the same boat?????

strakerstraker Posts: 1,851
edited 06/11/2012 - 8:43 AM in Chronic Pain
hi folks
as you know i am a long term pain suffer and i am at the point where nothing really works.yes i have state of the art beds/recliner and i am very grateful for that i also have the luxury of not having to work .but this is a double edge sward i would love to work but due to pain and tiredness i am no good to any one .so that's out of the question .is there anyone out there that this rings a bell with ..here goes .i go to bed at 11pm with pain killers and sleeping tablets on board i fall asleep within 15 minutes ..everything going well so far.then 3am max i am up in agony ..WHY ?? what have i done to make this happen ?? i feel like i have done a hard days work and all i have done is sleep .so down i go to my recliner and take more pain killers and strap on the TENS ans maybe fall asleep for another 2 hours the i eat.then shower then i am fit for nothing i need my recliner and that's my day in pain and on my recliner every day .if i do try to do anything it hurts so much i think is it worth it ?sometimes i wash the car ..this is like running a marathon ! or sometimes i swim again i feel like i have climbed mount Everest.you get the picture .so folks are you anything like me ,dose your life revolve round pain killers and resting ??or am i on my own ?? i am still undecided about this multi level fusion .many have told me not to do it and i think that's the way i will go if i am honest with myself ..but i am only 43 {44 may 14 } and that's still young what the hell am i going to do with the rest of my life ?? i was such an active person but now just showering is a major effort ..i am so fed up i can enjoy anything and i feel like life is just running by and i am stood watching it unable to join in ..its so unfair trust me folks i have tried everything to change my life but the pain is too much and it always wins i don't know how much more can take ..its like tocher ......ring any bells folks??


  • Straker, you need to do something, obviously. If not the fusion, then what? How many opinions have you had? Have you sought opinions on any of the experimental treatments?

    I mean, this is clearly not something you can continue with. But the fusion isn't something I personally would do without multiple opinions.

    What about a fentanyl patch?
  • Sorry to hear it's been going on for so long for you Tony. It's only been 2 years and 3 months for me disabled. I wonder how I would be if I had been offered surgery.

    I just got more injections. Would that help you? I just started pool therapy and feel like no change yet.
    I don't think you've done anything to make this happen you don't deserve this. I'm still hoping for medical advancements to somehow relieve this. What about Physiotherapy can they somehow help again? You know I have to go through the cycle every year PT, injections, now aqua therapy. I loved the hot tub after but some of those jets on my back felt like they would snap my back in half.

    I used to be so strong. You're a fellow Taurus tough. I just had my birthday April 29th and just turned 50. I pray for you every time I see you here Tony. One day at a time. Take care. Gentle hug. 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
  • all the pain clinic things numerus injections and tried {when i was a bit move able|} back clubs that's light exercise at the hospital ..in fact that made me take a gym membership up and for a while i went to the gym and did well i went on all the machinery and enjoyed myself but after a while i found it very hard work and had to stop the gym bit and just swim but now even the swimming kills me ,i have been to see chiropractors /physiotherapists and i have had all the things that you can have done to you back done .its got to the stage now where three surgeons and my pain consultant wont touch my spine the pain consultant tried to give me and epidural but nearly broke the needle because of all the scar tissue so she wont do nay more on me {and nothing she did worked any way} the surgeons wont operate as they recon that it will only make things worse they say i must learn to live with it .my doctor says to me that my prognosis is very bleak and apart from giving me my pain killers there is nothing he can do .there is this one surgeon that want to do this massive operation and like i have said i don't think its for me .trust me i have though about everything and i can't come up with any quality answers .its just seems so unfair that i will have to suffer for the rest of my life .you can see what operations i have has from my signature at the bottom of the post .the problems started when i has my last operation the surgeon {a very nice man} bit off more that he could chew he said that when he opened me up my spine was ten times worse that what the MRI suggested so he did the best he could and got the hell out of there ! when i went to see him 6 weeks post op and told him i was in pain he said he was not surprised and was surprised that i could walk and i should be happy about that and there was no way he was going back in there on the report to my doctor it said we remover the damaged S1 disc in a piecemeal fashion ..in other words he chopped out as much as he could then closed me up ..when i went to see the surgeon that want to do the fusion he said why did he {the last surgeon} leave so much S1 in you that needs to be removed .then he shook his head and said no wonder you are in pain your spine is in a terrible state and then suggested this multi level fusion ADR is out of the equation due to the about to arthritis ..i have been left i am right state
  • I understand you've done a lot already, but we have to say now- what do we do now? This isn't a livable state. Painkillers, or at least the ones the doctors you're seeing are giving you, aren't cutting it. So what's next?

    You know, sometimes there is a doctor out there that has a solution that a different doctor didn't think of. What about traveling (ugh, the thought of 5 hours in an airplane, but...) to a research hospital? I don't know, how about brainstorming possible solutions, things that might, possibly hold something that nobody has thought of yet?
  • I feel the same way. Very new to this website, I've been getting more depressed.... DAILY!... Little to no sleep, I hate doing anything active, I dread going to work (although my jobs requires me to do nothing) It's still the fact of it making things worse for me. I Have a L4/5 herniation and I am scared to death of surgery and I have some serious problems with my S.I joint, on the left had side The pain in both of my legs are enough to make you go crazy. I'm snapping at my kids and wife for no reason. I feel like a terrible father and husband.
    My meds don't do much for me. I take more then I should at times. To no Perivale, Injections did help, 4 years ago when I started doing them. Not so much anymore. My Dr and I started doing nerve blockers. And they only do so mush for so long. And I have tried anything they suggest other then cutting me open.... thus far. I've had injections in other places of my back to see if it helps. I was doing really good about 6 months ago I asked my PA to lower me meds from Perc to Tylo 4. And now the treatment is no longer affective as much as I hoped it would. I tell him the meds are no longer helping the treatments aren't helping. He then says to me. Hey all of this is to just pro-long the surgery right. Then that's when it hit me. Well.... If I do that I'm sure to loss my job I can't be out of work that long. The depression is getting worse and I AM at a dead end... Yet again…. So ….ya... I can't have a normal or even close to normal life anymore.

  • Sounds like you pain meds wear off in about four hours Tony. Have you tried the fentanyl patch? Gives continuous pain relief for about three days. It was a real blessing to me when I first got it. No more meds wearing off in four hours. I'm so sorry you're in such a state. I don't know if you've totally ruled out the fusion. I had L3-S1 done and yes, it has taken 18 months of recovery, but now I'm virtually pain free. I don't remember the last time I took a pain pill, and when I did, I think it was actually because my shoulder hurt, not my back! It was a long and grueling road, but I'm so much better.

    Hope things work out for you.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • If your life is nothing but eat, sleep, medicate and hurt now, then is it a life? If there's a surgery that can possibly help is it not worth the risk? At 43 what are you able to do with yourself now? Sure it's a big risky surgery, but if it allows even one smidgen of improvement on your daily state of affairs ... would it not be worth the risk?

  • thinking about the surgery .i said to kath tonight just before we went to bed how fed up i am about getting only 2 maybe 3 hours sleep a night and then being useless during the day she said that she would support me in what ever decision i take but its a massive decision ..as time goes on one day i think YES have the surgery then all the emails and negative post that i have read AND the other surgeons that have said DONT do it come flooding back to me ..its a horrible decision to make .even if it goes well the surgeon has told me it will take 3 years to recover from ..thats a hell of a long time and i am going to be any better or even worse ..and that's the thing being made even worse if i got to that stage i would not want to live ..but i dont wanna die i have a young daughter and i am married and i have a lovely home i dont want to go just yet! but i cant carry on as i am its so hard to commit to the operation i have already pout it off once but i see the surgeon next month to take again if i get worse over then next month i think that i will go for it but i will make have no problems telling you all that i am extremely terrified about the operation
  • There is nothing wrong with being terrified. You'd have to be nuts if you weren't. I'm going to give you one small piece of advice, stop reading the negative posts. There are so many positive outcomes from fusion surgery that you never here anything about. Keep an open mind.

  • Tony,

    I've been watching this thread as well as others concerning you and what you are and have been going through. Dave's post reminds me of something else. I am on this site as well as others concerning my health issues, and the ONE big thing that you especially should know (and you hinted on the negative side here) that the GOOD results, a LOT of them aren't going to post, as they are off and running with their lives once again! They move to the "out of sight, out of mind" side of the house! They don't need support, so off they go. So of course the majority of what you read on here for posts are the NEGATIVE ONES!!!

    As you yourself know, none of us have a crystal ball. I soooo wish a surgeon, or heck, any doctor for that matter could tell me this is going to be what the result of this medical intervention/surgery is......xxxxx. We know that is not, and can not be the case, right? I am very glad to see that you are looking at all the possible angles, but you it seems of late are glued on the negative ones. Try this: Write on paper all the negatives, and all the positives - NO "what ifs." See what it shows? You have stated that of late your pain has increased, and your mood decreased. Our mood or being depressed does what to our pain levels? Just food for thought. Take care. Support *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Yeah, I've been there and it's no fun at all. Besides the Oxycontin, do you take sleep meds like Ambien or Lunesta? I rely on my muscle relaxer (Zanaflex), 2 at bedtime to help me sleep. Recently I also take 2 75mg Lyrica capsules at night for the fibro and all of these meds are what help me fall asleep. They have also help cut down the amount of times I wake up during the night.

    I totally understand what it's like to be in pain all the time and feel trapped by the cycle you've described. There has to be something for you so that you have a better quality of life. I wish you could try an SCS or pain pump to see if it'd make a difference. I also understand why you would consider the multi level ADR..you're sick and tired of this damned pain and who wouldn't want to do something about it? If you get even one ounce of relief from anything, then it's worth it. Take care buddy
  • Tony,

    I only had single level fusion, but I would do it again. I'm not gonna say I'm great and painfree. I'm not. I'm better than I was. I can put both feet firmly on the floor without the screaming pain down my leg. I can go to work and the grocery. I occasionally still take painkillers. On my really bad days my back swells and pushes the nerves causing the pain in my leg again, not as bad as before but it is there. I may need to remove my hardware in about 5 months because of muscle irritation. In the end my surgery was beyond worth it. I know from some of the things I write it doesn't seem like it but my day to day life is better. I hope you get help soon. As others have said maybe try the patches for longer term pain relief, life without sleep doesn't help.
  • thanks for all the advice .some answers to your questions .yes i have sleeping pills {temazepam} they work the best on me i have tried others .SCS no good for me medical reasons .ADR also no good for me due to my spine being riddles with arthritis the only option is this terrifying operation .my last two operations i was not too frightened but his one fills me with an amazing amount of fear .i think its because i have noticed my health do so far down hill after the last operation and we ..my wife and i put so much trust in the surgeon and when it failed we were and still are so disappointed .my main fear is because this is such a big complex operation i feel that there are so many chances for things to go wrong and my fear of being made even worse brings me out in a cold sweat .but then there are the fusions that have turned out ok maybe this time lucky?? but after so many years of pain and disappointment i am :glass half empty man: the last thing i would want is for me to go through with it and either me coming back on here saying how bad i am now and i thought i was bad before but .blar blar blar.or my wife coming on and saying sorry folks but he did not make it !!!!!!!!!!!!!!!!!!!
    and i am telling you i really think that either one of those could happen ..yes i am ship scared as anyone would be .and i cant make a decision at the moment but i can go on like this its killing me .i do have the best surgeon for the job i have no worries on that score people come from all over the place to have him but am i strong enough to have so much surgery and what if ??? that's the main thing what if ?? at the end of the day its my decision and i just wish that it was taken out of my hands like i have said somewhere if i had to go and have it done like the last two operations but this time its my choice and it playing on my mind .and the surgeon can't give me any guarantees ..its a hard thing for someone to do ...make that decision ..the bit that is doing my head in is the no sleeping thing i can cope with it i go to bed full of pain killers and sleeping pills and fall asleep in no time and i am comfy in my luxury bed so why after 3 hours do i fell like i have been beaten up?? bloody car crash and i want not even my fault i was rear ended in the days before seat belt pretensioners .i am safety mad and always have been but the van i was in had standard seat belts and a hard head rest it was a ford escort van so when i was hit by something 5 times its size i stood no chance i got flung into the windscreen and the seat belt dragged me back like a ragdoll into the hard head rest i never stood a chance the impact from being dragged back by the old style seat belt cause the damage .now i drive around in a 4x4 with 8 air bags and various safety bits of kit on board too late me thinks !!
    tony x
  • I will tell you that I know someone who just did a multi-level surgery and it was a huge success.

    But second, you never mention why you haven't tired the fentanyl patch? How about the newer sleep meds with sustained release? You can't cope without sleep.
  • Have you tried sitting down with your wife and making a list of pros and cons, one list for surgery and one list for no surgery.

    I have found that when I cannot separate my head from my heart (or emotions and fears) that making a list helps me to take a good honest look at the situation. Even bringing in a third party to moderate so to speak, while asking you and your wife to list the pros and cons of each.

    I'm very sorry that this has you so emotionally torn. I hope you are able to get things worked out soon.

  • Have you also told your doctors what bad shape you're in now? I wonder if putting you in the hospital to let you get some rest would be an option? I don't know if they ever do that, it would seem that when someone has been going on so long and is this close to the edge, that they might start looking at other options. In the hospital, there are meds like morphine and dilaudid.
  • its an emergency and you are brought in via an ambulance .the UK medical system want people out of there wards asap if i went in my own car to the E@A department with pain they would send me to my doctor i have tried to do it before they just can be bothered .once we phone for an ambulance and they would not come out as they dreamed chronic pain ans non emergency! you have to be having a heart attack or be involved in a motor vehicle accident to be taken seriously .the only way i would find myself in hospital is through a medical referral from my doctor .i am seeing the surgeon in a few weeks and he want to operate on me and its looking ,more and more like i will be going through with it even tho i don't want to .,.i know that i cart go on like this is a living hell.with regards to trans dermal pain relief i don't think i would be suitable as i have very sensitive skin my TENS electrode are the sensitive type .and nicotine patches make my skin burn .i will ask the surgeon about pain relief when i see him in the meantime i will carry on with the oxycontin unfortunately my doctor is away in Italy for his daughter wedding for a month although he has authorized my pain killers whilst he is away they are other doctor in the practice but i don't get on with them so i will wait for my doctor to return before i discus alternative pain relief .i know that he is reluctant to change me from oxycontin as i can tolerate it well with hardly any side effects and he said if he had to give me morphine he would have to give me massive doses as oxycontin is a lot stronger but dose not last as long and oxycontin is far less constipating .all in all as much as i don't want the operation its looking like i have no option i just hope when it happens the gods are in my favour
    tony x
  • You know what, I hope you get the operation and it's a HUGE success and you end up running around like a madman and jumping up and down yelling "YIPPPEEEEE!"

    In the meantime, I hope your doctor gets back from italy soon. I wish he could just give you SOMETHING for at least a few day's relief.
  • jlrfryejjlrfrye ohioPosts: 1,110
    Straker what ever the decision it is that you make, it will be the right one for you. I really hope you can
    find some relief in your pain regardless if it is different meds or the surgery . I have watched your post since I became a member a year ago and damn it, you deserve a break. I wish you the best of luck in whatever you decide.
  • but when your spine is crumbling and needs shoring up you don't end up with much of a choice. I chose not to degenerate into a painful pile of mush. I also have arthritis, spondy, and I had scoliosis too. I had gone from 5'8.5" tall to 5'6.5" short. My surgery was hell. I actually had two of them. The recovery was pretty miserable and it has taken a year and a half for me to feel better. I had three doctors tell me that no one would do a three-level fusion and I'd just be a lot worse off afterwards. I'm really glad I did not listen to those people. I have my life back and I'm a lot happier than I've been in a long time. Yes, I have limitations, but I'm not screaming in pain with every move. It's true that most of us who do well after surgery don't come back here to report in. I just know that there were so many here who helped me, so I've made a point of checking in every now and then to see how folks are doing and lending some support when I can. You know when you've had enough. You know when you just don't have the quality of life you want.

    All the best Tony.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • i was asked about this surgeon how can fix my back ,his history is .a top biomechanical engineer he is the top in his field and he has a private practice in a prestigious part of the north but he also works for the NHS and he is in demand BIG time he gives lecture on this kind of thing all over the world he will operate where other fear to go i am lucky that i dont have to travel too far and that my PCT will pay the 30k that it will cost for the operation to be done in one of our best teaching hospitals .he is my best option when he saw the MRI scan he was disgusted with the level of surgery that the last lot had done and was not surprised that i was in pain .he want to do a discography first to establish the origin of my pain and to test the viability of the next disc before he will commit himself to any surgery and i will have to have a medical to make sure i am fit enough to undergo such an invasive operation
  • First off let me say...you have an awesome wife! Most spouses would of hit the road by now so it seems that you two have a special bond which will be a major resource during your recovery. One thing I have learned on these boards is that everyone has an opinion...and they are all valid for them....yet, they can't determine your decision for you! If all you can do is live a life from the bed to the recliner back to the bed with doses of pain meds in between what type of a life is that? How could you possibly be in worse shape after the surgery?? Now, I am NOT trying to talk you into having it but from reading your posts it seems you haven't got much to lose! You have literally tried everything...are blessed to have a surgeon that is successful and that you have a great deal of trust in. It's true that it would be a long road to recovery but what's so good about what is going on now? You are truly blessed to have a loving wife and child that understand...most would of hit the door a long time ago! I know this is a terrible decision to make...and as someone who is facing their 4th surgery I realize the seriousness of "trying yet again" yet...hope springs eternal doesn't it?! I mean, without hope for pain relief what have we got? I want you to know that I will be keeping up with you and your family and the decisions you make and praying for all of you! God bless you!
    Dusty :)
  • my first wife DID hit the door !! as soon as i got ill {and we had been together for 12 years} my new wife {and we have been together for 13 years }met me in hospital as she was a nurse then she is now a manager in the NHS don't get me wrong i know its hard work for her too but we all have our faults healthy or not ..my personal feeling about health and marriage are you stick with your partner no mater what .my brother in law a fit 50 year old went to work one morning and after a horrific car smash now need 24 hours live in care but his wife has stayed with him ..i think that its sad when your partner get ill and the healthy one p15535 off!! dont forget that anyone of us could kiss our other half before we get in our cars to go to work and never come home because we have had a stroke /heart attack/or car smash ..the point is you never know what is around the next corner .marriage is about the bad as well as the good i hope that you never find yourself in the position where you have to make that decision
  • I just want to say that I hear you and I'm feeling or have felt everything that you've said so well at times. I get so scared that my life is just over and I'm on the down escalator to nowhere sometimes. I started with a pain management doctor after my last surgeon said there was nothing more he could do for me. The PM upped my Cymbalta to 60mg once a day saying that I was depressed. It's helped some and I don't find myself dwelling on the "realness" of my situation as much and have been able to concentrate on my children and my husband. He's been laid off work since this July and has sold his inherited land to start his own business. So I've been trying to help him with the loan paperwork, business plan, and all of that. Sometimes I admit, I still can't shake, you know, the fact that my spine still hurts, I still have major problems and facing more surgery soon. My shoulders catch and ache just like my knees. My elbows and wrists, sometimes fingers are sore. I hate arthritis, but it is my battle to fight. I try to walk a little each day and keep moving. Seems I am 200% worse if I stay in bed or in the recliner, but it is where I'm not in pain, until I go to get up. I guess the inflammation and swelling sits there more and it's harder to move?

    My surgeries have all been needed and I don't regret anything. They've improved my pain level in those areas although I still seem to be physically in the same shape and have chronic pain all over now. I know my cartilage and discs are being eaten away and there's not a whole lot I can do about it. I've taken Celebrex for seven years for osteo-arthritis and it's not helping like it used to. I'm 45 myself and should still be able to go and do whatever I want.

    Enough about me though, I just want to give you big hugs and let you know that I'm with you on the "realness" of your situation. It stinks. But what else can we do, but find the positives and grab hold of them somehow for some quality of life. You know?
  • It's a bad deal. Pretty much my life, with the exception that I have no choice but to work. Then I'm trashed the whole night afterwards.
    I don't know Tony, I had 3 fused and this is what I ended up with. I personally wouldn't recommend anyone doing it - the nerve pain from arthritis and stenosis is horrible.
    I would definately be sure you explore every other available option, but then again it sounds like you have.
    Uhm, have you tried Advil Liqui-gels??? That is what some moron at work asked me. These people have no clue how we live. Take care buddy, best of luck to you - Marion
  • Hello, I am new to this site and FINALLY a group that is so concentrated on the spine! I have had 3 spinal surgery's and even though I am in your situation now I think each were nessesary and effective for that time. I too have a zero gravity recliner and I would be sunk without it. I also have MS & RLS so they Medicate me pretty hard to make sure I sleep without moving, and when I wake up I feel the same way like I have been working all night. I am currently contemplating a morphene pump as they want to wait on the last fusion, which would be a wing fusion to the hips until I am 45.. I am 35 now so I do understand the fear of living like this everyday and if there is a procedure that can possibly help you that is great! It sounds like you have a special surgon, but like others have said go with your insticts and write that pro/con list.. ask for the answer and it will come. Your not the only one and I hope you find relief soon :)
  • thanks for your support i hope that you are out of pain ..well as much as you can be !
  • I am 44 large tear in l5 s1 disc. surgeon say fusion or see if it will heal on its own (2 to 5 years)
    I don't like the sounds of fusion but i don,t think i can go on like this much longer .
    ya the recliner is my best friend and 2 pillows one for leg one for back. sleep 4 hr maybe.
    activity= some makes back pain some makes leg an foot pain go up. if i over do it the pain does not all ways go back down to wear it was before over doing it some times it starts a new pain . ya i have gone all most completely nuts.
    washing the car maybe i will try that tomorrow i no i cant drive it. my wife (wood not be hear without her 24 years)
    fusion= sounds like a dirty word but it may take us back to some what normal life(at least for a spinney)
  • Back for a bit, actually I stopped in to see how some were doing. Sorry to see that your not making out well, or better than when we last chatted.

    I will not say that I am pain free, I am much better. Through a number of differing therapies - I have a level of comfort that was not achievalbe years ago. Like you - my limits were getting hit each month and I was just pushing thru the pain and "living with it".

    I will not tell you that I enjoy all of the effects that it has on me, but I certainly do not demand that it leave me right now. I hurt - but I have been able to enjoy "pain free" moments. There are times that these will stretch into minutes and hours.

    In almost every instance - I find that in some way -my mind has disconnected from the pain - when I accept it - without judgement, inside. I have found that fighting it -only makes it harder. Its like Shinzen Young's comment - pain X resistance= 0 when I can reduce resistance to zero. It is not easy - but it does produce a calming effect, it just takes awhile to induce.

    I was on the patch - Duragesic - I never found it to work for the advertised time, and found that the triangular blood dosing pattern of it was difficult to take - as it felt like a fast climb to a mountain peak - with a crash of equal proportion. When I looked over the clincal trial stuff -it looked like most of the particapnats were para or quad - so thier mobility and felt pain when moving - wwas not even considered. I had to quit the stuff after 5 weeks or so and while I had 1 good day in 3, the 2 were not worth the third. Besides - when I checked and found the dose equiv for a 75 patch, it kind of made sense as to why I was feeling sick and pained at the same time. It was just a bad combo for myself.

    Take care - C45 -EDIT for spelling
  • Advil Liquid-gels? You're right, 'normal' people haven't a clue as to what we are dealing with. If only the world could walk in our shoes for just one day, our lives would be so much easier.
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