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  • #31
    Originally posted by Tina_R View Post
    Can it be something as simple as a screw in the wrong place sticking out or even a tumor somewhere that could be causing back pain and/or nerve issues?

    Would the MRIs that I have had all over my spine and neck show a tumor elsewhere in the body that could be pressuring a nerve outside my spine, or wouldn't they necessarily?
    To show nerve impingement, you'd need a CT myelogram.
    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


    • #32
      Originally posted by LindaRacine View Post
      To show nerve impingement, you'd need a CT myelogram.
      I had a myelogram, it showed nothing wrong, but I was wondering if nerves can be impinged upon elsewhere in the body, away from the spine, that could cause my leg problems. And if so, how would you search for something like that.

      Comment


      • #33
        Originally posted by jackieg412 View Post
        Tina, I think tumors will show. I've had scans that show growths(benign) in my thyroid. So I would think a good quality of scan would show a growth in the spine. I don't think a nerve impact is harder to diagnose.
        An EMG could show that but not all of the time. My arachnoiditis was diagnosed by a myelogram and the non union in my thoracic was also diagnosed with a myelogram. It showed one level but the neurosurgeon decided to explore the full thoracic and it had never healed.
        I still have to try to post the new xrays. It is going to be a long cold winter in Chicago so I should be able to figure it out.
        Tumors will show in an MRI or CT scan if they are on or adjacent to the areas you are checking out, but what if they are elsewhere in the body? Will they accidentally show in a scan of the spine?

        Comment


        • #34
          Originally posted by Tina_R View Post
          Can it be something as simple as a screw in the wrong place sticking out or even a tumor somewhere that could be causing back pain and/or nerve issues?

          Would the MRIs that I have had all over my spine and neck show a tumor elsewhere in the body that could be pressuring a nerve outside my spine, or wouldn't they necessarily?
          A pedicle screw breach would have been discovered by now, they look at hardware and implant position closely.

          You now have at least 3 doctors looking, Your Orthopedic, Neurologist and the Radiologist. There are probably more.

          When you do CT scans or MRI, a Radiologist reviews the scans or films. They are trained to look and report EVERYTHING THEY SEE. Doctors are also trained, but the radiologist is not allowed to miss anything. But these are only 2 tests and they don't cover everything.

          Some sites for review....

          About gait and balance problems...
          https://www.healthline.com/symptom/gait-abnormality

          Neurological Diagnostic Tests and Procedures Fact Sheet
          https://www.ninds.nih.gov/Disorders/...rocedures-Fact

          Peripheral Neuropathy Fact Sheet
          https://www.ninds.nih.gov/Disorders/...thy-Fact-Sheet

          Ruling things out can take some time....

          I would ask your neurologist if there are any more tests that you should do.

          It's hard to maintain when in pain, but you have to keep cool and try not to get agitated or place blame on doctors. Place blame on disease is ok. For example, my dad's ALS diagnosis took about 18 months and many tests. They will not jump the guns on diagnosis in the neuro arena since there are so many similar problems.

          Keep daily notes. The description of your symptoms is super important right now. Use 1-10 scale for pain and exact locations. Get a notebook and have a daily dated page of symptoms and meds. Take this notebook with you when you see the neurologist so he sees you documenting.

          Ed
          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


          • #35
            Originally posted by Tina_R View Post
            I had a myelogram, it showed nothing wrong, but I was wondering if nerves can be impinged upon elsewhere in the body, away from the spine, that could cause my leg problems. And if so, how would you search for something like that.
            I've always been able to figure out what level is causing pain for me, by looking at a dermatome chart:

            https://sites.google.com/site/portfo...ent/dermatomes
            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


            • #36
              different things can show on a scan but the scan has to cover that area.
              T10-pelvis fusion 12/08
              C5,6,7 fusion 9/10
              T2--T10 fusion 2/11
              C 4-5 fusion 11/14
              Right scapulectomy 6/15
              Right pectoralis major muscle transfer to scapula
              To replace the action of Serratus Anterior muscle 3/16
              Broken neck 9/28/2018
              Emergency surgery posterior fusion C4- T3
              Repeated 11/2018 because rods pulled apart added T2 fusion
              Removal of partial right thoracic hardware 1/2020
              Removal and replacement of C4-T10 hardware with C7 and T 1
              Osteotomy

              Comment


              • #37
                So could it be that there could be a tumor or something similar rather far away from the spine that hasn't been seen by chance on a scan targeting my spine? And could something like this cause numbness, tingling, lack of feeling, weakness, eventual wasting in the legs?

                Because that's just as likely as a neurological disease as Ed is suggesting.

                But I think it's more likely my leg problems relate to my surgeries. For other reasons besides my not believing in coincidence.
                Last edited by Tina_R; 01-03-2021, 06:11 PM.

                Comment


                • #38
                  Tina, chances are high that your problems are due to spine, but not guaranteed and its best to be prepared for anything.

                  They were suspicious of cancer with me and did exploratory on my ALIF but didn't find anything. Go figure....We also have a member here with a cord tumor and is ok....They will not take the chance of operating on her. It's also been a lot of years...Some cancers are super aggressive, and some you can live with for long long periods of time. I also know a lymphoma patient who was diagnosed over 50 years ago. He is 82 now, and told me this 10 years ago while smoking a cigar.... I forgot to ask him what his secret was. Cuban?

                  Internal organs can also cause a lot of spine pain....the data is endless. Liver, kidneys, stones, constipation etc etc all trigger off nerve signals on multiple levels. The orthopedic complication list is a vast list, and that's just orthopedic. When you look at the whole body and its complex systems, it's impossible to cover everything even as a doctor. Thats why some of us have to visit multiple specialists when things get tough...It requires a lot of patience, time and testing. It's not easy.

                  People that have their health don't know how lucky they are....

                  We are lucky to have our doctors trying to help us out...and now with the increasing COVID rates it makes things that much harder. All the medical systems are stressed and St Louis Childrens hospital has been admitting adults. My goddaughter is a Ped doctor there and is now working on adults. The waves keep coming in and the COVID rates keep increasing....Hospitals in Los Angeles are on the brink of catastrophe.

                  Funny, this stuff was all in the news in the past....and now it's becoming a harsh reality. I sure hope we can get a grip on this thing through vaccinations because if we do not, things could get pretty ugly. In other words, all doctors in a MASH mode, no elective surgeries and emergency status only.

                  It's not a good time to be sick, and answers could come slowly.

                  Ed
                  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


                  • #39
                    Originally posted by titaniumed View Post
                    A pedicle screw breach would have been discovered by now, they look at hardware and implant position closely.

                    You now have at least 3 doctors looking, Your Orthopedic, Neurologist and the Radiologist. There are probably more.

                    When you do CT scans or MRI, a Radiologist reviews the scans or films. They are trained to look and report EVERYTHING THEY SEE. Doctors are also trained, but the radiologist is not allowed to miss anything. But these are only 2 tests and they don't cover everything.

                    I would ask your neurologist if there are any more tests that you should do.
                    I was thinking of asking the neurologists for more tests, there must be others. But he made it sound like he had done all he could. He did schedule another appointment with me, maybe to see if I got any worse, which might give him more clues. If I go to a new neurologist, I would have to ask him to pass the tests on that he did and that could get uncomfortable.

                    Originally posted by titaniumed View Post

                    It's hard to maintain when in pain, but you have to keep cool and try not to get agitated or place blame on doctors. Place blame on disease is ok. For example, my dad's ALS diagnosis took about 18 months and many tests. They will not jump the guns on diagnosis in the neuro arena since there are so many similar problems.
                    I'm sorry to hear your Dad had ALS and I can imagine the diagnosis, let alone the disease, must have been hard on him and his family. It sounds like there are no definitive tests for that and it's hard to diagnose. Sounds like it's what you are left with after ruling out most other things.

                    I'm fully aware that my problem could be ALS or another neurological disease. So far the neurologist says it doesn't resemble those. I'm prepared that that could change and I may have to accept a neurological diagnosis.

                    But there's so much back pain, and getting worse, and often the back pain accelerates just when the neurological symptoms act up the most. That's why I think my spine is the source. One time last week when the weakness, numbness, and tingling in the legs were so bad I could hardly stand, my spine at the same time felt white-hot with pain and numbness (yes, both together), top to bottom.

                    As for blaming doctors, I am very respectful of doctors, but I am justified in blaming some. I'm not going to go into more details about that.

                    This is not rare, a surgeon who abandons his patients when there are difficulties. I hear about it now and then on another scoliosis forum. I'm not saying all surgeons do this, but it's the dark side of scoliosis surgery. I don't know how they get away with it.

                    Originally posted by titaniumed View Post

                    Keep daily notes. The description of your symptoms is super important right now. Use 1-10 scale for pain and exact locations. Get a notebook and have a daily dated page of symptoms and meds. Take this notebook with you when you see the neurologist so he sees you documenting.

                    Ed
                    I wrote up a summary of my condition, kept it short and unemotional, mailed it to my second opinion scoliosis surgeon and he didn't even bring it to my appointment. I don't think his office ever gave it to him.
                    Last edited by Tina_R; 01-04-2021, 01:18 PM.

                    Comment


                    • #40
                      Originally posted by titaniumed View Post

                      The one thing we need is hope. The hope that at some point somebody is going to have an answer. Finding that somebody can be especially difficult being in pain, but it's worth it. Sometimes you have to switch doctors with new ideas. Sometimes this search can seem endless for some, but wouldn't it be a shame if it didn't happen if there was an answer? Some of us have incredible stories of our struggles with scoliosis and deformity, the changes and the sacrifices can be huge....It dictated my life for many years but I do consider myself lucky.
                      Hope and patience are great but it's not good if it takes so long to find a cause that the damage becomes permanent.

                      Originally posted by titaniumed View Post

                      And I do like a good story.....a good spine story. It's what gave me the bravery to proceed with my own surgeries. Dr Boachie, the Juma Genda story in 2006.

                      Here is another incredible story of hope, probably one of the worst deformity cases I have seen. 28 years of waiting on AS (Ankylosing Spondylitis) I can't imagine the pain....this guy is tough. They mention that he is also osteoporotic so recovery is a slow and delicate process....

                      Folded man
                      https://www.youtube.com/watch?v=1ycL...inaMorningPost

                      It's been a hard year.... 2021 will be much better.

                      Ed
                      I saw a folded woman three years ago. Her head was bent toward the ground like the man in your video and she walked in a crouch. She was led by the hand by a fashionably dressed wealthy-looking companion of the same age (the younger end of elderly) who had chronic worry on her face. They walked into a Panera at the end of lunchtime as we came out. I felt sorry for them and thought it was courageous of them to go out in public for lunch.

                      Comment


                      • #41
                        Originally posted by Tina_R View Post
                        But there's so much back pain, and getting worse, and often the back pain accelerates just when the neurological symptoms act up the most. That's why I think my spine is the source. One time last week when the weakness, numbness, and tingling in the legs were so bad I could hardly stand, my spine at the same time felt white-hot with pain and numbness (yes, both together), top to bottom.
                        I don't know....never heard symptoms like this around here... ??

                        Years ago there was this 45 yr old guy at work who would come and go, and I noticed him on a walker in an industrial plant. This really sticks out since industrial plants can be dangerous places. He could barely make it 30 feet. About a year went by and he showed up and I asked him what happened. He had Guillain Barre, and it kicked his butt. I asked him what they did, and he told me nothing, it resolved on its own. Weakness and tingling in extremities are usually first symptoms. You have to realize that some of these diseases are very rare. A doctor might be lucky to see only one case in his life.

                        Diagnosis is done with nerve conduction studies and a lumbar puncture.

                        https://en.wikipedia.org/wiki/Guilla...C3%A9_syndrome
                        Different subtypes or variants of neuropathy and polyneuropathy are mentioned lower in the article....

                        When I had my spinal tap iohexol injection for a CT in 2002, I asked if they took a sample of my spinal fluid since they were in there. I got the "Why would I do that?" answer which brought that conversation to a quick halt....That was my initial diagnosis of my 4 lumbar herniations. 4 or 5 months went by and I get a call from the nurse about a scheduled steroid injection this Thursday.
                        That of course wasn't happening since I was out in Hawaii scuba diving to try to de-weight my spine for my sciatica. This through a regular orthopedic before my scoliosis surgeon came to town. I did have my share of communication problems with various doctors over the years which was all part of the learning curve I guess....Been there, done that.

                        Ed
                        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


                        • #42
                          Originally posted by titaniumed View Post
                          I don't know....never heard symptoms like this around here... ??

                          Years ago there was this 45 yr old guy at work who would come and go, and I noticed him on a walker in an industrial plant. This really sticks out since industrial plants can be dangerous places. He could barely make it 30 feet. About a year went by and he showed up and I asked him what happened. He had Guillain Barre, and it kicked his butt. I asked him what they did, and he told me nothing, it resolved on its own. Weakness and tingling in extremities are usually first symptoms. You have to realize that some of these diseases are very rare. A doctor might be lucky to see only one case in his life.

                          Diagnosis is done with nerve conduction studies and a lumbar puncture.

                          https://en.wikipedia.org/wiki/Guilla...C3%A9_syndrome
                          Different subtypes or variants of neuropathy and polyneuropathy are mentioned lower in the article....
                          Was your co-worker still on a walker the second time you saw him, after he recovered from Guillain-Barre?

                          Is that a disease people often recover from spontaneously?

                          Originally posted by titaniumed View Post
                          When I had my spinal tap iohexol injection for a CT in 2002, I asked if they took a sample of my spinal fluid since they were in there. I got the "Why would I do that?" answer which brought that conversation to a quick halt....That was my initial diagnosis of my 4 lumbar herniations. 4 or 5 months went by and I get a call from the nurse about a scheduled steroid injection this Thursday.
                          That of course wasn't happening since I was out in Hawaii scuba diving to try to de-weight my spine for my sciatica. This through a regular orthopedic before my scoliosis surgeon came to town. I did have my share of communication problems with various doctors over the years which was all part of the learning curve I guess....Been there, done that.

                          Ed
                          Any particular reason you wanted a sample of your spinal fluid taken?

                          Comment


                          • #43
                            No, not on a walker, he was good. He did a complete recovery. You would never know.

                            For recovery rates on GB you would have to look at the stats. Experts in the last 20 years are saying FDR probably had a severe version of GB by his symptoms. When I look at a dime, I think GB, not Polio.

                            For the spinal fluid, since they are in there, why not extract the fluid and take a look? Seems logical, but it doesn't work that way....My dad had ALS and scoliosis. For ALS they do muscle biopsies. "If" I get it, it would be the familial version or FALS.
                            https://www.als.org/navigating-als/r...ls-and-genetic

                            ALS does not affect the mind, or the sex organs. You see, there is always good news.

                            Symptoms are key. It's the start of the investigative process. I guess my symptoms did not trigger looking at spinal fluid, but the herniations in a 70 curve were just screaming "Look at me" Sciatica, or true hip and leg pains.

                            Linda posted the dermatome map which is surprisingly accurate. Most of my neuropathic pain problems ended up involving the limbs mostly, not so much with the back. As a young scoli, soft tissues in the back were the problem then when things degenerated as I aged, that pain transferred to the legs and the arms and hands through disc herniations and related radiculopathy. Pinpoint pain.

                            https://en.wikipedia.org/wiki/Dermatome_(anatomy)

                            Looking at the figure on the right, my pains fell in the yellow L5 area. Not the whole band of yellow, pinpoint spots on that band. 1" circle at the greater trochanter, and burning on the top of my ankle exactly where the tongue of a sneaker would touch the ankle on the front only. No other leg pain.

                            For my neck it was the blue C6 and yellow C7 bands. 95% numbness on the thumb, index, and middle finger, (blue and yellow) and Mike Tyson punch right below the shoulder in the blue band. No other arm pain.

                            I never experienced white hot spine pain from top to bottom.

                            You might try Dr Jay Joshi....He is in Chicago. He is an anesthesiologist pain expert. I have a thread on him here with some videos.

                            Ed
                            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


                            • #44
                              I am not sure where you can travel to but the Dr. Ed recommended is a great recommendation. You can look up his videos. Also, my doctor is Adam Young. He is in Illinois also. He has multiple videos on the web. Since he is my physician, I can recommend that he will listen and try his best to help you.
                              T10-pelvis fusion 12/08
                              C5,6,7 fusion 9/10
                              T2--T10 fusion 2/11
                              C 4-5 fusion 11/14
                              Right scapulectomy 6/15
                              Right pectoralis major muscle transfer to scapula
                              To replace the action of Serratus Anterior muscle 3/16
                              Broken neck 9/28/2018
                              Emergency surgery posterior fusion C4- T3
                              Repeated 11/2018 because rods pulled apart added T2 fusion
                              Removal of partial right thoracic hardware 1/2020
                              Removal and replacement of C4-T10 hardware with C7 and T 1
                              Osteotomy

                              Comment


                              • #45
                                Jackie, You do realize that I would not have found Dr Joshi if it wasn't for you. I stumbled across it somehow through your surgeon Adam Young after you made the switch a few years back. It could have been through the RUSH site, but I don't remember. This from all the Ketamine related searches I did when you were diagnosed with arachnoditis looking for some answers. You were in so much pain, I could tell by your typing.....

                                You see how important your posts are. Everyone's posts are valuable here!

                                Here is the Jay Joshi You Tube page.
                                https://www.youtube.com/user/nationalpaincenters/videos

                                This was the video I posted on Ketamine and Central Sensitization.
                                https://www.youtube.com/watch?v=8Qcw...nalPainCenters
                                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

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