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Your opinion or experience please

Please bear with me whilst I rave a little.....

Since Dec 2009, I've had 6 x spinal surgeries. I'm nearly totally fused and I'm looking at having another operation where steel bolts are inserted into my hips and other attachments to support my spine. The life I had went out the window and I'm doing my best to "move forward."

I was taking (according to doctors) dangerously high levels of morphine based pain meds (Oxynorm, MS-Contin, Fentanyl patch etc etc). I was re admitted for a medication detox and now I'm on other meds which does bugger all for my pain, which leads me to my questions, if you will please bear with me.

My surgeon sent me off to a pain management specialist who now regulates my pain meds (the ones that don't work well). He has suggested that when I have a serious pain episode (like when I try and walk around my local shopping centre - the pain increases when I try and walk beyond 50m with my walking stick). The pain management person has suggested that (a) I smoke weed for pain (b) have pleasant thoughts when my pain increases - I'm not joking. (c) push through the pain - yeah, right (d) undertake some program where you are admitted into a rehab facility (for pain management, not drug or alcohol abuse) for 3 weeks of intensive physiotherapy, psychology treatment - some doctors seem to think that back pain is "in your head." The 3 week holiday includes some program where you re-boot your brain???? I've discovered that this person also has prescribed me Endep which is a psychotic drug - what, I'm crazy now too???

My surgeon has told me that I'm not a cure case, but, a maintenance case and pain meds are my friends until I kick the bucket. I'm finding that the pain management doctor to be not particularly helpful.

Has anyone experienced pain specialists? Has this helped you? Should I change doctors, who listen and don't have their own opinions.

My attitude now towards doctors is that unless they have experienced severe spinal issues or back pain, they have no idea as to what we go though. After 6 surgeries, constant pain and immobility issues, my faith in my current doctors is diminishing.

Apologies for the rave, but, when you feel as though you are talking to yourself, you wonder what on hills hat, am I supposed to do??
More titanium steel in me than a modern car.....


  • thoracic spine painthoracic spine pain Posts: 566
    edited 11/04/2013 - 8:32 PM
    I have given you a link to the Intractable Pain Survival manual from this site. I wish I had read it when this journey first began.


    I have spent around $30,000 of my own money and nearly 8 years to get to the stage where my pain is manageable. I had to do most of the research myself in the end, you are not crazy. Intractable pain is intractable pain.

    These are a few things I found out on my journey. I have not had any operations, the operation is too risky for me, so other people who have had operations, may be able to advise you in another way. Pain clinics made my pain worse. I also had a Dr who suggested I drink more to kill the pain - yeah right!

    Endep is Amitriptyline which I use for sleep, it is not always used for psychotic disorders, it is an older medication and not an SSRI,( I will not take SSRI's for many reasons but also have a very bad reaction to them). Amitriptyline (Endep) works well for me for sleep. I believe if you have intractable pain depression is a normal feeling, - although Endep is supposed to help but I don't take it for that.

    They have found out the part of your brain which receives the pain signals - watch 'The Secret Life of Pain' I think it may be on You Tube. It is really interesting. If you live in the UK they are currently trailing a way to stop your brain from feeling pain. I have just started using hypnosis for pain again and am finding it great. I use the ones on You Tube with the spiral to go under - all hypnosis is self hypnosis and these have been helping. I have been doing a 20 minute session every morning. You just need to be careful to get a highly trained hypnotherapist but they are free.

    If you go to a pain management doctor try to go to one that has trained in Anesthesia as they are the ones who understand pain management and they are highly trained in this field. My friend who is a medical specialist advised me to go to someone else when she saw how much pain I was in.

    I also use a muscle relaxant Rivotril - clonazepam (non addictive) with my pain meds, the pain meds alone hardly touched my pain before I combined them, and this has really helped. I honestly can't believe they didn't realise this until recently, but at least they finally realised.

    I have also found a great physio who has found the vertebrae which generates most of my pain - she thought outside the box and she has been taping me into place so my muscles won't spasm the work she has done, back out again. Tens machines make my pain worse. I use a sports physio as they deal with professional athletes who have to get better.

    Some people also swear by acupuncture - I found it great for other things but as my pain has a mechanical cause it didn't work for me this time.

    Welcome to the world of intractable pain where you look the same as most other people and have to put on a brave face to the outside world, they cannot see your pain so unless people have had pain themselves - they normally don't understand. I have broken my back - my spinal cord is my central nervous system and that's why for me the pain and isolation caused by not being able to do normal stuff, can be excruciating. I used to say if you broke your arm and kept twisting it it wouldn't get better. That's what we do every day to try and have some normalcy. Also have a look at the dermatone chart on this site or on Sandi's avatar and you can tell which level is causing the most pain. Another thing I learnt is to always take someone with me to verify my pain. My sister always comes now as when you are in pain it is hard to communicate properly. I would lend you her but I live in Australia. Hope you have a less pain day.
  • Wow your new pain management doctor...................... (#*@*@(#*@(!))!)!(@(@)#(@(#*(@ !!!!!!!! Sorry it wasn't appropriate for spine health. Seriously I hate when they say that "think positive thoughts" bs. Obviously they have not experienced what you experience. I do believe meditation and positive thinking helps but not in the middle of a pain flair! Pain pain go away don't come back another day.... hahahahahahahahaaaaa.

    I think you should talk to your surgeon about this pain doctor and see what he/she has to say and if he/she can send you to someone else. I do know a few people that marijuana drasticly helps their pain. One person had 5 back/neck surgeries, no longer takes any pills and grows his own marijuana. We also live in a state where this is legal, as long as you have your "card". Personally, it just makes me sick and gives me panic attacks. I do recommend you give it a try (or a few as it usually doesn't have an effect the first few times for many people). Funny that your doctor "recommends" it because most pain doctors have strict policies against illegal substances. If it's illegal in your state they mine as well just say go get some heroin its a strong opiate. ha. The BS about the pain flair "retreat" is rediclous. I don't know about you but when my pain is bad I want to be HOME. Also traveling is really not an option. Not to mention that who has time for that and I assume insurance only pays part so who has the money for that!?

    I am currently seeing a psychologist who says she specializes in pain management. In reality she has no idea. She is pretty fresh out of school first of all. Second of all she really does not get it. I feel like this.... I could study say lung cancer. I could read every possible text book and medical journal available. I could work in a hospital with lung cancer patients. I would know a lot about it....... but I have never experienced it (and pray I never will), so even though I know a lot about the subject, I am missing a key part.

    I hope to go back to school and become a counselor or psychologist and help people in chronic pain. I have a long way to go understanding and managing my own pain, but I do feel like it is my calling in life. If it is meant to be I'll do it. Good luck to you. Message me if you would like so we can keep in touch. I'd like to know what your surgeon says.

    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • BadbackrobBBadbackrob Posts: 42
    edited 11/05/2013 - 7:02 PM
    Firstly, many thanks for taking the time and effort to reply. I greatly appreciate it. I've downloaded the PDF link and shall read through the material and have a look at Youtube.

    I think if you grow your own weed and spend 95% of your awake time, stoned, it will greatly help, but at $300-400 per ounce and having it growing or having possession of "a commercial quantity" grants you an appearance in court and a criminal conviction. Australia is still stuck in a "reefer madness" conspiracy, however, drinking booze until it comes out your ears, assault your wife/girlfriend/children etc and its frowned upon, but, anyway.......

    I had a huge argument with my MD today about the effectiveness of "pain management" and eventually convinced him, despite repeated attempts over the last 3 months, as desperate as I tried, I just could not evolve into an aspiring Dalai Lama who is able to "shoo pain away." So, I am on higher amounts of pills, except the Endep. I am not happy about my change in life, but, I don't need anti-depressant drugs or "mood Modifiers." Hypnotherapy doesn't work for me and smoking weed in Australia is illegal.

    I was going to have someone accompany me today, but, I explained that I my next visit, I shall have family & friends occupy his rooms to attest to what I (and they) have to tolerate. He happily increased my pain meds. Hopefully, this will work and reading the referred PDF will be interesting reading, plus I have further research based on your advice. Again, I greatly appreciate the effort to reply with such detail. Many thanks!!!

    Wish my doctors had this much detail and advice instead of saying "when your back spasms and you get shooting pain in your bum cheek and then when your lumber feels like a 450lb gorilla is standing on it and you are nearly crying, think of puppies."
    More titanium steel in me than a modern car.....
  • Rob - u pressed the send button a few times - you can go in and edit the repeats out. It has taken me 8 years to find a good spine specialist. I live in Qld so if you are in Sydney or Melbourne it seems to be easier. I was going to suggest Kratom but that is illegal here too. I also take what I have written on SH to them, saves me explaining a million times, and they are much better if they can be bothered reading it. My old pain specialist just threw it away in front of me.At $10 bucks a minute I found that rude and insulting. If u r in Qld I can give u the name of a great spine specialist on the Gold Coast who gets spine pain. I can also give you a great physio who looks outside the box and has been a life saver for me. Just PM me if u r in Brisbane or the Gold Coast. If u are in Qld I have attended a pain clinic which made my pain worse every day I ended up in tears cause they were doing more harm than good. It was an expensive joke - but my insurance paid for it, so now know the ones that are the best in Brisbane. Please use a PM who is specialises in anaesthesia.

    Hope you find something that helps, smoking MJ in Canberra of course, makes my pain amplify. You could always move to Canberra but the crappy climate effects my pain so Qld is the best place for me.
  • Have you tried a TENS Unit? I get the most relief fro it.
  • BadbackrobBBadbackrob Posts: 42
    edited 11/07/2013 - 7:57 PM
    Thanks again for the replies. I can't delete the extra posts - sorry! I'm getting a page message saying that I can't delete the posts. Could a moderator sort this please?

    I live in NSW, Central Coast. My specialists are all located in Sydney. 2 hour drive there and 2 hours home again, 1 hour waiting (why do spinal surgeons have the worst seats to wait on?), so visiting specialists is akin to stabbing myself with a spoon.

    Since Jan 2010, I've spent thousands chasing a miraculous cure or just something to take the edge off. I'm told by my neurosurgeon that a Tens machine won't help me. According to my neurosurgeon, I have the spine of an 80 year old man, who played professional rugby. I'm 46 next month.

    The PDF article mentioned above is incredibly informative. I wish had known about this PRIOR to my 1st operation, which then led to 5 more.

    Thanks again for the replies and comments. I greatly appreciate your efforts.

    your extra posts have been deleted...Liz
    More titanium steel in me than a modern car.....
  • Hi Rob Look in your PM box. Sent you a PM.
  • Have you considered a SCS(spinal cord stimulator) or a Pain Pump implant for your pain? My Pain Pump has saved my life!!
    I do hope you get relief soon.

    Patsy W
  • Dear Patsy

    Thank you for your message.

    According to my neurosurgeon, there's nothing more that can be done. He's advised me that I have to learn to live with pain and that I may need further surgery. Not real keen on anymore - I've had 5!
    More titanium steel in me than a modern car.....
  • asignor908aasignor908 Posts: 339
    edited 11/13/2013 - 7:54 PM
    Pain pain and more pain! I had two surgeries in 2010 ACDF and Laminectomy. I have been on pain meds and still am. I have done radio wave injections that made pain worse. The other injections/ block that sometimes offer some relief for just a few days but pain doc pushes them hard. Here in Ohio lately the doctors put you through the ringer to get your meds. Expensive urine drug tests that insurance pays around $700 for every other month, contracts, a phone call makes you come in to count your pills. I am 57 totally disabled ex cop and I feel like a criminal. I am also a disabled vet but the VA is useless and not thinks pain management should be handled with relaxation classes, group meetings etc.
    They have also just told all their doctors nationwide to not prescribe pain meds if at all possible. Luckily my pain doc us not connected to VA but sadly I get everything free there. I choose to pay so I can get reasonable treatment but I have to go through hell to get it. In my last MRI a year ago it showed my lower spine has worsened since last surgery in 2010. I am getting another MRI tomorrow because I am begging them to try another surgery which I never thought I'd do but that's where I am. Lastly my pain meds help a great deal but they make you feel afraid to say we need to adjust dosage but I am at the point I am going to push for that at my next appointment Friday. I am literally fearful about the trend that's going on in the US that will and has punish chronic sufferers like us because if drug addicts who just wanted to get high. Medical Mayrijauna is not yet legal in Ohio because I want to see if it will help me. Can't try it because of random and often drug testing. I don't know how pain management is across the US and across the world but I can tell you I am concerned. I hope you find the help you need. Sorry for being so long winded I haven't been on in a long time so like you I am looking for advice too.
    AL S
  • moved to a small town 200 miles from the gurus in LA. My first try was to find a new rheumy, unsuccessful, so I thought PM was going to be impossible. My rheumy always said you will need pain relief forever. My PM said that "they" are cracking down on PMs who are loosing their licenses for treating people like me on high doses of opiates. I found a young, double boarded - anesthesia- who said the problem with your pain meds is that they are not adequate to relieve my pain. He increased the morphine and oxy, added neuron, been there before, but the point is find a new PM. I was afraid that if I complained, I would be left with no pain coverage. This is the third PM I have tried and it proves that big time big name docs are not always the best.
    Puppy mom
  • You are so lucky! God Bless
    AL S
  • dilaurodilauro ConnecticutPosts: 9,832
    This is relatively new field in the medical practices. Not that many years ago, the 'managing' of a patients pain levels was done by the Surgeon or the PCP. When the topic about substance abuse with controlled medications, DEA crackdowns and Pain contracts, so much of that changed.

    The Pain Specialist professionals came into play. They may have had different titles before, but Pain Doctor became vogue.

    In my opinion so much of this got out of hand because of the media, the hype association with it and DEA major involvement. Some doctors began to run scared and their mindset on narcotic pain prescriptions changed. Almost to the point, where they were not writing prescriptions for patients who really needed the narcotics. Most of you who know me, know that I have excellent rapport with the medical field. Part of that is through my wife, who has been a medical professional for over 38 years now. Doctors today CAN and SHOULD write narcotic prescriptions for those patients that need it. All they need to do , is to know they are doing it for the right reasons. Any DEA or other investigations would discover that they did things correctly and to help the patient. My physiatrist has always told me, she is not concerned regarding the narcotic pain medication she prescribes for me. She keeps close control over this and together we monitor it, to the point that I have spreadsheets that identify the number of pills I need per day, when it was last filled, when it should expire, etc. I hope that all of you will find a 'pain' doctor that will work with you like this.

    Meanwhile, you all know that I have stated that medications alone is never the answer for pain control. Pain is too complex to allow pills to take care of it. Sure, you could max out all the narcotic pain medications so that you would not feel pain, but then you would also be a zombie with not much of a brain.

    I have talked about The Blend which identifies the multidimensional approach to total pain management.
    badbackrob said:

    (b) have pleasant thoughts when my pain increases - I'm not joking. (c) push through the pain - yeah, right
    Thats not all that far fetched. Our minds can control so much of what is happening to us physically. Just look at Eastern medicine. Folks there have been dealing with pain for centuries without chemicals - and they survive it. Relaxation techniques such as Aroma and Music therapy can help control those pain levels. That can lead to effective meditation, where you can almost eliminate your pain. I've tried this, many times, but it is not easy to achieve. I still would love to get there someday.

    Take a look at the Blend just to see what things you could incorporate into your life. Life as a chronic pain patient is not easy. Its hard on us, probably harder on the ones we love. I know that I will have pain the rest of my life, pain scales for chronic pain patients need to be adjusted. Our pain level 0 is what most people would consider pain level 4.
    I also know that I will have to be on some form of narcotic pain medication for the rest of my life. Not a high dosage, but something to make me comfortable every day. That along with the items from the "Blend" make a big difference.

    The use of portable Tens unit is very effective. I've had one for almost 6 years now. And as Patsy (Pat White) mentioned, Spinal cord stimulator (SCS) have proven to be very effective for patients.

    Netting this all out, its you, us, the pain patient that needs to take the lead and control of our pain. Its not going to be one pain doctor or another one or another one. Its a team approach. You are the manager, you bring in the normal team on a regular basis, but also know when to call in those specialists to handle various aspects of your pain.

    Good luck.

    A positive mind can take you so very far into pain control.
    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
  • I know this is going to sound crazy but I go back to my childhood with my grandson to help with my pain. We bought some playdoh and 100 cookie cutters and every evening when my pain levels go up we pull out the playdoh and rolling pin and go to town making cookies. He gets up in mornings asking if we can " make cookies" when he gets home from preschool. It totally makes me forget my pain for a good hour or more and I bond with the love of my life :) Then I bought a big box of crayons and my daughter found some Precious Moments coloring books and I will pull them out before bed when my pain is flairing and by the time I color a few pages I am totally relaxed and not dwellng on pain..

    I know sounds crazy but dont knock it til you try it. This is what works for me and keeps me young and to hear my grandbaby telling everyone at preschool how his "grammy" loves him is priceless. Hopefully this wont cause a shortage on playdoh and crayons....lol

  • Having my 14 grandkids around always make me feel better as well. They range in age from two to 22, although we raised the 22 year old since he was 5 due to the fact we lost our daughter in an auto accident in 1999. Hardest thing I ever had to do or live with. He helped with my grief having her son who is a piece of her and how much she loved him made me want to do the best parenting always thinking of what she would have wanted. I think she is happy with the life we gave him and the love we have for him. So I agree with your premise whole heartedly.
    AL S
  • is notoriously hard to treat .I was diagnosed with it only 2 years ago but I believe that I have been suffering with it for a lot longer .I too am on a very high amount of oxycontin and its sister oxynorm .they are the only thing that take the pain from a9.9 to an 8 I know its not much ..but its just enough to keep my from being totally in agony ..the kind of pain that wakes you up and your first stop is the pain killer box not the toilet !.I often think that my pain killers arnt working then when I wake up with THAT pain I know that the pain killers are doing just a little to help me .I would have no life without them .I don't like taking them and I never though that I would have to be on long term medication as I was so fit and well up to being 30 that's when I had my car crash and all hell was let loose .ever operation had brought its own problems and pain .I am now 47 and its been a hard 17 years .just to be out of pain would be fantastic .{and still alive !}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • I can totally relate to everything you said. My pain started on a much lower level 14 years before my two surgeries which were both in 2010 within 6 months of each other. I had never been a big fan of pain pills because of all the abuse I have seen and somehow I thought I could do without them especially since i had this belief that the surgery would fix most of my issues. I was so wrong and I guess so naive but I desperately wanted to believe.

    I was literally home from the hospital less than two day after my lower spine surgery when the pain became totally unbearable due to a nerve which was aggravated during the surgery. I had to be taken by ambulance back to the hospital where I was put on high doses of IV steroids and pain meds I stayed there for eight days and I was so grateful for the relief those meds afforded me. After that and for a good year I was on 150 Mgs a day of opioids fast acting type . After that year my long awaited recovery finally started to improve . Since I still wanted to take the least amount possible I started to wean myself off and I got all the way down to 30 mgs a day and suffering more then I should have allowed. I stayed at that dose for six months and then the pain in the lower back and legs started climbing again pretty fast. In just a few short months I was back up to 50 mgs a day and I could tolerate it but not much else. All this time I was taking injections of steroids and radio frequency which was horrible. The steroid injections would sometimes improve things bit for only 3 to 5 days so to me it wasn't worth the aggravation. So that brings me to now and at 80 mgs a day where it is manageable some of the time. The new MRI seems to plainly show why, my DDD has worsened faster then I ever thought possible. I spend much of my day in bed simply because it offers some relief and I have been battling depression too. Finally they found one that has made me feel a utile better mentally regaining some interest in life again. So I can only hope and pray they will have something surgically to offer some relief. If not it will be a rough road not only for me but my wife as well .
    So that's where i am for now.
    Thanks for your thoughts.
    AL S
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