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Neck problems above fusion

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  • #16
    I too was sorry to hear about your Mom. I lost my mother when I was 42 and my dad when I was 37. My mother also was an artist and as a child I went to sleep every night listening to her play classical music on our piano. I still miss them but it does get a lot easier with time. They both died of primary brain tumors.

    I had pain in the cervical part of my spine in the early 90's and found out that 3 of my vertebra were fusing on their own. When they completed fusing the pain went away but I do not have good movement of my neck. I have severe degeneration in the rest of my cervical spine and was fused from T4-sacrum 8 months ago. Dr Lenke told me that my fusion might indeed aggravate my neck issues but I had to have the fusion as my curve was progressing significantly. Eight months before my fusion I started having problems with my right arm which were said to be coming from problems at the C5/C6 level by a local surgeon. I waited a month without treatment and it went away on it's own. I know I will probably have more problems because of my neck again at some point. My son bought a used inversion table but it did not help me and I felt it probably had the potential to cause harm. Sleeping on a cervical neck pillow years ago did help with the pain in the upper part of my cervical spine until the vertebra fused and then I no longer needed it. Hope you get some relief soon!
    Jane

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    • #17
      adding my sincere sympathy, for the loss of your mother and now for this new "pain in the neck/ arm/ numb fingers". especially that you cannot look up ugh!

      Ed, you know the answer- get the imaging first, then find a neurosurgeon or an ortho who specializes in necks, and get first class advice. I had pretty bad neck pain/ upper back pain radiating down my arm- prior to my C spine surgery. I tried to get a second opinion from a neurosurgeon but he wouldn't see me - for whatever reason. But I decided if I trust my surgeon with my spine then he might as well do my neck too. turned out very well. and surprisingly- I did not lose too much mobility in my neck either.

      Conservative treatment? My friend bought a reverse incline chair: you are seated, it is less stress on the spine, and yet it allows you to control the angle of inversion and it did help with her back pain. I'd imagine it might relieve the neck pain- try craigslist.

      Injections? steroids may offer temporary relief- they usually do the injection with imaging to be sure they are safe. some people do get significant relief -- but the first step is imaging. make the call- call your Primary care doctor and get the referral for an MRI. then a new referral to the ortho. ( dont'cha love playing the insurance game??)

      ALS- now, i will pray that your fears are unfounded. I often have fasiculations too, they get worse, some days ; other days- don't remember I had fasiculations. if you just went through the stress of losing a parent, and no doubt= helping settle the financial burdens -- you have had some amount of stress, that may contribute to the fasiculations. please keep us posted. I am so sad to hear of your new pain, and I will pray for a quick answer and treatment. God bless + Jamie in TX
      57 years old.
      thoracic curve 68 degrees
      lumbar-sacral curve +/- 41 degrees
      Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
      Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
      THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

      Comment


      • #18
        Ed--
        You have received lots of good advice here--usually you are the provider of that! I sincerely hope there is a relatively easy fix for you. So sorry this is continuing to be such a problem for you. Thinking of you & hoping for the best. Janet
        Janet

        61 years old--57 for surgery

        Diagnosed in 1965 at age of 13--no brace
        Thoracic Curve: 96 degrees to 35 degrees
        Lumbar Curve: 63 degrees to 5 degrees
        Surgery with Dr. Lenke in St. Louis--March 30, 2009
        T-2 to Pelvis, and hopefully all posterior procedure.

        All was posterior along with 2 cages and 6 osteotomies.

        Comment


        • #19
          Ed, there are tons of reasons for twitching and funny movements. Don't panic and think ALS automatically.

          My experience with chiropractors is that they just move things around and in my experience, there was temporary relief, then my back just went back to the painful position.

          Let your fan club know how you are doing! I wish you the best.

          Hugs, Susan
          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
          2018: Removal L4,5 screw
          2021: Removal T1 screw & rod

          Comment


          • #20
            Funny how I struggled all those years with sciatica pain from my herniated discs......my right leg pain was so much fun. Now it’s the reverse, I now have the left arm pain.....I had a few pain free years after my scoli surgeries, that was nice, and now the pain returns. I thought I was home scot free.....

            Chiro has pretty much taken care of the neck pain, but my arm is not resolving itself at the speed that I would like and it is now looking like I’m going to have to make that appointment with my surgeon. Traction helps, but doesn’t last.

            Shots anyone?

            Jane, after reading your post, I spent the evening listening to Chopin.

            One of the pianists that my mom hung with was Grace Castagnetta. She was an incredible pianist and played worldwide. Once at Christmas, I begged her to play “flight of the bumblebee” for me and she stated that it wasn’t written for the piano, but I have an idea of what you would like to hear. She then proceeded to slam the keyboard from 20 inches and into a quick stacatto run. I was 10 yrs old and was sitting next to her on the stool (with jaw agape) I never recovered. She had “hand” braces made for her in Russia so she could stretch her hands to help in reaching the octave.

            Just some memories.....

            I’m going to Panama and Colombia this summer......I will be diving Coiba, which is choice advanced diving. I owe this to myself. Scuba Steve will know what I’m talking about. There will be a vast assortment of large apex predators there....(smiley face)
            http://en.wikipedia.org/wiki/Coiba

            Thanks for everyone’s concern....and I hope everything is ok with you Susan and Irina!

            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


            • #21
              Scuba diving? Wow, Ed, you are truly amazing. I've been praying for you since first reading this thread. I know having a high fusion (up to T1) means I have to be careful with my neck the rest of my life. Your correction was up to T2, right? Did you do a lot of skiing this winter? Do you wear any kind of brace on your neck while skiing, just in case? Sorry about all the questions; I just want you to stay safe and careful. I wouldn't want you to get hurt. You're too valuable.

              It must have been so wonderful to have a mom who played the piano. I used to enjoy playing the piano but quit over six years ago when my back hurt more and more. It never occurred to me that perhaps my children liked to hear the music. You have inspired me to play the piano again.

              I'm glad the chiropractor worked well for you. I hope you get continued relief.
              1973 Age 15 diagnosed with scoliosis but told too old for surgery.
              2001 age 43 told too old for surgery, did physical therapy & traction.
              2001 to 2008 Intermittent use of home traction machine and TENS unit.
              2009 traction no longer effective - physical therapy.
              2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
              At age 53, surgery on October 2nd, 2012 with Dr Hey
              Fusion with titanium rods and bolts from T1 to pelvis.
              Post op x-ray

              Comment


              • #22
                "I had a few pain free years after my scoli surgeries, that was nice, and now the pain returns. I thought I was home scot free....."

                This is my greatest concern - that while things are going very well, it may not last. I don't know how I'd cope if I had to live with pain again.

                But the good news is, it's likely that this can be resolved, Ed. And on you will go with your life, your skiing and your diving. Keep hold of that and you will get through this. Keep us up to date. Good luck!
                Surgery March 3, 2009 at almost 58, now 63.
                Dr. Askin, Brisbane, Australia
                T4-Pelvis, Posterior only
                Osteotomies and Laminectomies
                Was 68 degrees, now 22 and pain free

                Comment


                • #23
                  Julia

                  No, I didn’t ski much this winter due to lack of snow. Last winter was bad but this one was worse....I don’t wear a brace while skiing, just a helmet.

                  I don’t know what to say about DDD. It seems as if I have bad discs.....or do we scolis have higher disc problems? Maybe there is a study on this question.

                  Jen

                  As far as pain is concerned, we are seasoned pros at the pain game.....its like riding a bike. I can handle pain, it’s the interrupted sleep that really wears on me.

                  I made an appointment with my surgeon today because Chiropractic really cant do much if there is disc damage. It can help with some of the pain, and discs can retract,(I have seen this happen with myself a few times) but it seems that after trying for years with my 4 lumbar herniation’s, my cutoff point is now set at 2 weeks instead of 6 years. I need a shot to put the fire out. Besides, severe DDD does lead to vertebral end plate damage.

                  If it ever came down to fusing more levels in my neck, I would be interested in an artificial disc......I wonder if any posters here or on SOS have had this done?

                  I cant wait to go diving at Coiba.....it’s the next best thing to Coco’s Island or the Galapagos. I don’t want to do a live aboard because its hard on our muscles. All that rocking 7-24 is really tough to deal with after a few days. Coiba will be land based diving.

                  I will be sipping champagne and attending Aguardiente parties in Medellin soon...... It’s the local “rocket fuel”. I hope I survive this trip. LOL
                  http://en.wikipedia.org/wiki/Aguardiente

                  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


                  • #24
                    Hope you get some relief soon Ed.
                    Melissa

                    Fused from C2 - sacrum 7/2011

                    April 21, 2020- another broken rod surgery

                    Comment


                    • #25
                      Guys, I’m reading a little but not posting because I’m in pain.....

                      I have an appt with my surgeon on the 23rd...

                      I stopped all Chiro and traction....my neck feels ok, just a little sore when looking up, but my arm hurts like the dickens.

                      4 yr old Celebrex works about 1/2 strength. Do meds lose potency or effectiveness with age?

                      Hanging in there

                      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


                      • #26
                        Glad you are hanging in there, Ed. You'll find the answer.
                        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


                        • #27
                          Ed,
                          I'm glad you are going to see your surgeon. To answer your question, yes, meds lose there potency with age. That's why they have expiration dates. Most meds, aside from some antibiotics as far as I know, do not become "poison" after they expire. They just lose their original strength.

                          I got chastised by my doctor because I threw out about a four year old bottle of oxycontin because I thought it smelled funny. The chemically smell had just accumulated in the bottle. The doc told me that they would have still worked for me as I needed them badly. At that time I hurt too bad to even get to the doctor and was too embarrassed to call an ambulance. I couldn't move...at all. Needless to say, I felt REALLY STUPID for throwing out that medication.
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • #28
                            Glad you don't have long to wait. You'll get to the bottom of this Ed, and get it fixed. Take care.
                            Surgery March 3, 2009 at almost 58, now 63.
                            Dr. Askin, Brisbane, Australia
                            T4-Pelvis, Posterior only
                            Osteotomies and Laminectomies
                            Was 68 degrees, now 22 and pain free

                            Comment


                            • #29
                              so sorry you're hurting, Ed
                              it is my experience that meds lose potency over time...
                              a doctor once told me meds lose effectiveness...he was telling me
                              not to keep antibiotics much beyond expiration date...

                              as for the alcohol...you may still be hurting, but with that level of alcohol
                              content, you definitely won't care!!!

                              hope you feel better...
                              jess...and Sparky
                              Last edited by jrnyc; 04-16-2013, 11:42 PM.

                              Comment


                              • #30
                                I'm not fused at all, but I have very similar neck and arm symptoms along with severely degenerated C5-6and C6-7. I can't look up without bending my knees and have limited range in looking left and right. My forearm aches and my hand will just let go of things from time to time. I've tried a lot of treatments but the most helpful has been physical therapy that strengthened and stretched neck muscles, pectorals, arm and hand. The stabbing burning pain in my arm seems improved at the least by increased blood flow. For a period of time I wouldn't trust my hand with holding anything breakable, now at least I get a warning to loss of function with preliminary increase in achiness. I also regularly use Voltaren gel (nsaid) on my neck and that can help quite a bit. I can apply that up to 4x a day. Surgery isn't an option for me right now so these things help at least a bit.

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