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  • #16
    Pain: the science of suffering Patrick Wall

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    • #17
      Originally posted by burdle View Post
      of course it eventually will be difficult for me to stand upright due to lack of lordosis. My surgeon told me that we would like to see me crawl in on my hands and knees before he attempted surgery , because He says surgery is not for pain. And I believe him because I think that my pathways are pretty well established and I understand that the nociceptors are still likely to be firing even if they have straightened me up. Also I am likely to have more pain from the surgery that might become chronic as well.
      But Ed suffered for years and years and surgery helped his pain and he was balanced also (2 70* curves). So surgery can help some long standing pain in balanced people. Maybe it can help yours if there is no other option.

      The other thing is it seems you are saying there is a window for surgical relief from pain. I think if this is true surgeons should be telling patients that. And they shouldn't be viewed as just wanting revenue for doing so if that is a scientific fact.
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #18
        Originally posted by Pooka1 View Post
        But Ed suffered for years and years and surgery helped his pain and he was balanced also (2 70* curves). So surgery can help some long standing pain in balanced people. Maybe it can help yours if there is no other option.

        The other thing is it seems you are saying there is a window for surgical relief from pain. I think if this is true surgeons should be telling patients that. And they shouldn't be viewed as just wanting revenue for doing so if that is a scientific fact.
        I think he is using the crawl analogy to say only if you have got to the point where you have nothing less to lose- I guess pain so bad that no alternative and thus a risk worth taking? He is viewing it that I have an option- deal with the pain. And there are days when I manage- just that there are more when I don't!

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        • #19
          Well on the one hand you are being told to wait until the last minute and on the other hand that waiting establishes pain responses that prevent surgery from relieving your pain. That is an illogical position.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #20
            Originally posted by Pooka1 View Post
            Well on the one hand you are being told to wait until the last minute and on the other hand that waiting establishes pain responses that prevent surgery from relieving your pain. That is an illogical position.


            he needs a mechanical reason hence instability before he deems surgery necessary. my response to.any further pain it may causes wll not be a concern of his. But you are correct that by then my pain responses will be even more established ?

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            • #21
              Originally posted by Pooka1 View Post
              Are there indications of likely success and likely failure for surgery
              The one thing that has a decent amount of science behind it is depression.

              Also, if one's pain is neurogenic, it's possible that the involved nerves are permanently damaged.
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

              Comment


              • #22
                Originally posted by LindaRacine View Post
                The one thing that has a decent amount of science behind it is depression.

                .
                yes this is true as expectations may be too high - I'd be alright though!

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                • #23
                  Originally posted by burdle View Post
                  yes this is true as expectations may be too high - I'd be alright though!
                  Burdle is your pain neurogenic?
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #24
                    "It turned out that patients who saw a physical therapist before trying other treatments had an 89 percent lower probability of eventually needing an opioid prescription, a 28 percent lower probability of having any advanced imaging services, and a 15 percent lower probability of making one or more ER visits."

                    https://www.npr.org/sections/health-...ntent=20180523
                    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                    ---------------------------------------------------------------------------------------------------------------------------------------------------
                    Surgery 2/10/93 A/P fusion T4-L3
                    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                    Comment


                    • #25
                      Originally posted by burdle View Post
                      I think he is using the crawl analogy to say only if you have got to the point where you have nothing less to lose- I guess pain so bad that no alternative and thus a risk worth taking?
                      Yes, Burdle, That's it.

                      I had no choice at the end, the pain was that bad. I couldn't sit down, when I did, it was excruciating!(Like flames) Imagine driving a car like this. I couldn't go to work most days. I would have a hot soak and a massage, get out of pain, only to sit back down in the car and be in tears 5 seconds later. This is how I started RV'ing.....(Recreational Vehicle) I could have one of my employees drive me down the San Francisco bay area for business meetings. If you take a lighter and light your finger, it burns. Now, do NOT remove the flame. I stood up on all my airplane flights.

                      Quite a lot of adult scolis with big curves end up with lumbar stenosis (spinal cord narrowing) and some of us end up with herniated discs. Have this happen through multiple lumbar levels and the pain goes through the roof. You push on the spinal cord just a little bit and the world stops. NSAID's help but they can take time....Alternatives help just a little bit, hot water and massages were the most beneficial, slow walking and NO manipulation. I was just too RAW and had the classic sciatica to the nth degree. My ankle almost caught on fire.(Top only) Hip pain like a horse kicked me in the greater trochanter. (1" circle) Discograms? Nope. Shots? Where? Everywhere? No. Complete lumbar disaster.

                      My 2 neck herniation's 5 years ago felt like Mike Tyson punched me in the shoulder. Only don't remove this pain. And my thumb, index and middle finger went 95% numb. I could have had a finger surgery without a local. (C5-6, C6-7) These neck herniation's were exasperated by grief, the loss of my mother. Emotions play a STRONG part in scoliosis, this will deserve a new thread. Emotional well being and anxiety need to be under control and this is not an easy thing sometimes. It's something that takes practice and understanding. Getting excited over the trivial BS isn't worth it. Sometimes, I cant care or get involved and I will not pay the price anymore."The dog ate the homework?", that's hilarious! I use a reversal and laugh now when things get too thick. Comedy helps a lot, that's why I posted all the Benny Hill videos years ago. Switch to laughter and its the best pain reliever EVER.

                      The leg and arm pain outweighed the back pain by a mile and the back pain didn't matter anymore. I took, Celebrex, Bextra, Naproxen, and Diclofenac during those periods. These are good to have on standby. I also wont travel without them. I skied in pain, and broke my shoulder and arm in a bad crash, and didn't bother going to the hospital. This was around 2 weeks before my scoliosis surgeries. When you break limbs and do nothing, you know your there. It really didn't matter too much other than the fact that my right arm didn't work. I would lift it up on the desk with my left hand to reach the mouse. I became really good at ignoring pain. The NSAID's were the only meds I took prior to my surgeries.

                      When your this beat, you crawl in and do your surgeries. I was truly ready.

                      At the hospital at the OR stage area, my vascular surgeon asked me if I was nervous. My reply was "I think I am supposed to be nervous". This was an example of 100% complete trust on my part. There was an army in the operating room. I had my classical pianists, and they performed an outstanding show! Classical pianists are technicians.

                      Both my parents were keyboard players. My mom was a classical pianist. Structured and focused perfection. My dad played everything but mostly a Hammond Organ with a Leslie, and was a versatile jazzy type....People can vary and fit many molds, but my surgeon's were classical technician's.

                      Tori Amos 1992 Piano shopping in London. A prodigy, eccentric genius. I think you will find this interesting. She plays Oklahoma and it reminds me of my dad who would also have a conversation while playing.
                      https://www.youtube.com/watch?reload=9&v=BTvyXMhoDuw

                      Ed
                      Last edited by titaniumed; 05-24-2018, 12:18 AM.
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                      Dr Brett Menmuir St Marys Hospital Reno,Nevada

                      Bending and twisting pics after full fusion
                      http://www.scoliosis.org/forum/showt...on.&highlight=

                      My x-rays
                      http://www.scoliosis.org/forum/attac...2&d=1228779214

                      http://www.scoliosis.org/forum/attac...3&d=1228779258

                      Comment


                      • #26
                        Originally posted by Pooka1 View Post
                        Burdle is your pain neurogenic?
                        Hi,

                        I see a private physio once a week. he is a musculoskeletal guy with an interest in pain science. Not many physios in UK have this interest and still treat without reference or knowledge. My guy says that I have alloydynia and hypersensitivity which means that all the nociceptors are firing all the time as a result of ordinary stimuli when they should not which I think means some of the pain the pain is neurogenic. However my take on it that as it is possible to have this without anything obviously visible in the skeletal structure to cause this and I do have something obvious( 3 bloody great curves) then there is a possibility that my scoliosis compounds things. However it is possible that surgical intervention may not help or even reduce the pain. This I think is the dilemma. My surgeon who I think is also a bit interested in pain but is obviously expert in surgery always says he doesn't do it for pain relief alone , hence looking for an instability and pain. ( or me begging him because I have nothing to lose). He would do a fusion on someone who had little pain if the degree of instability was very great.

                        problem in UK and possibly elsewhere is that the pain science thing is quite new. My pain management guy just offers me injections- my physio 'calls' him out over this ( not to his face but in conversation with me) . as he says this is unlikely to help and pain science contradicts injections as where they put them is not where the pain is coming from?

                        I am in the middle- pain science is great for understanding pain but not much help when actually dealing with it. If I were younger maybe I would be better at the breathing and the mindfulness but it is as though pain has worn my poor old brain out. True understanding though should be the technique for not letting your brain acknowledge the pain but I am far from that... my bad?

                        That is what I meant by more support from the pain science guys- we need more help with actually dealing with living with pain if living with it is the only deal on the table.
                        Last edited by burdle; 05-24-2018, 05:16 AM.

                        Comment


                        • #27
                          Originally posted by burdle View Post
                          Hi,

                          I see a private physio once a week. he is a musculoskeletal guy with an interest in pain science. Not many physios in UK have this interest and still treat without reference or knowledge. My guy says that I have alloydynia and hypersensitivity which means that all the nociceptors are firing all the time as a result of ordinary stimuli when they should not which I think means some of the pain the pain is neurogenic. However my take on it that as it is possible to have this without anything obviously visible in the skeletal structure to cause this and I do have something obvious( 3 bloody great curves) then there is a possibility that my scoliosis compounds things. However it is possible that surgical intervention may not help or even reduce the pain. This I think is the dilemma. My surgeon who I think is also a bit interested in pain but is obviously expert in surgery always says he doesn't do it for pain relief alone , hence looking for an instability and pain. ( or me begging him because I have nothing to lose). He would do a fusion on someone who had little pain if the degree of instability was very great.
                          Are you saying your surgeon has definitively ruled out stenosis, herniations, etc. as the cause of your pain and that there is absolutely nothing on imaging that shows why you have pain?

                          problem in UK and possibly elsewhere is that the pain science thing is quite new.
                          What do you mean new? I seriously doubt the UK is behind the US at all in pain science!

                          My pain management guy just offers me injections- my physio 'calls' him out over this ( not to his face but in conversation with me) . as he says this is unlikely to help and pain science contradicts injections as where they put them is not where the pain is coming from?
                          I have seen criticism of injections about how most of the effect is the lidocaine and not the steroid. Who knows.

                          I am in the middle- pain science is great for understanding pain but not much help when actually dealing with it. If I were younger maybe I would be better at the breathing and the mindfulness but it is as though pain has worn my poor old brain out. True understanding though should be the technique for not letting your brain acknowledge the pain but I am far from that... my bad?

                          That is what I meant by more support from the pain science guys- we need more help with actually dealing with living with pain if living with it is the only deal on the table.
                          If I understand Linda, if you can establish your pain might not be longstanding neurogenic then you may be helped by surgery. You should get that ruled in or out. I do't know if those two diagnoses you have equate with neurogenic or not. Maybe they don't.
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #28
                            Originally posted by Pooka1 View Post
                            Are you saying your surgeon has definitively ruled out stenosis, herniations, etc. as the cause of your pain and that there is absolutely nothing on imaging that shows why you have pain?.

                            I have stenosis, canal narrowing and bulging disks. However physio says that these can be present and be asymptomatic

                            Originally posted by Pooka1 View Post

                            What do you mean new? I seriously doubt the UK is behind the US at all in pain science! .

                            new in the sense that not all medics are up to speed- certainly my pain management doctor isn't



                            Originally posted by Pooka1 View Post
                            If I understand Linda, if you can establish your pain might not be longstanding neurogenic then you may be helped by surgery. You should get that ruled in or out. I do't know if those two diagnoses you have equate with neurogenic or not. Maybe they don't.
                            Surgeon won't do it for pain alone

                            Comment


                            • #29
                              Originally posted by burdle View Post
                              I have stenosis, canal narrowing and bulging disks. However physio says that these can be present and be asymptomatic
                              But just because it can be asymptomatic doesn't mean it is asymptomatic in your case!!!! It only matters in your case.

                              new in the sense that not all medics are up to speed- certainly my pain management doctor isn't
                              I don't understand how a board certified pain doctor can not be up on their own field. What are you saying?

                              Surgeon won't do it for pain alone
                              You have several structural problems that are the likely cause of your pain. So you don't only have pain.
                              Sharon, mother of identical twin girls with scoliosis

                              No island of sanity.

                              Question: What do you call alternative medicine that works?
                              Answer: Medicine


                              "We are all African."

                              Comment


                              • #30
                                Originally posted by Pooka1 View Post
                                But just because it can be asymptomatic doesn't mean it is asymptomatic in your case!!!! It only matters in your case.



                                I don't understand how a board certified pain doctor can not be up on their own field. What are you saying?



                                You have several structural problems that are the likely cause of your pain. So you don't only have pain.
                                You are saying what I am saying- is it likely that my structural issues are the cause of my pain? the answer realistically is yes as far as I am concerned but from the medical perspective is EVEN if they are and they don't have to be there is no guarantee that surgery will solve the pain- so a risk not work taking from their perspecvtive!


                                By the pain management doctor- I mean that the guy I see basically does injections- first an and foremost and for diagnosis as much as for pain relief. But pain management theory now centres on the notion that once these pathways are set up the pain becomes more centralised and injecting locally could have little effect etc. I really am not an expert ... just what I am reading. There is no such thing as a pain message- just a message that is interpreted by the brain as pain- hence phantom limb pain etc.

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