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  • #16
    Not yet. The pet scan was reviewed with me and the good thing is no abnormal results. With the usual reason for doing this scan is cancer I passed that test,
    The down side is it did not show the reason for the nerve problem
    The lower leg and foot are numb and weak. The spine surgeon has recommended that I see a neurosurgeon to look at decompression for the sciatic nerve in the soft tissue. He feels I hurt the nerve in the squatting movement but has not seen this and doesn't know what to do.
    I do not show signs of periformis syndrome and that did not show on the MRI
    The EMG is "grossly abnormal" for L5 nerve problem.
    Any ideas?This developed after the end of January since I was checked at that time for ALS.
    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


    • #17
      Jackie, good news on the cancer. I also had that crappy card dealt to me right before my ALIF, and they didn’t find anything. I couldn’t let this bother me since I had the scoliosis card to deal with. I also wouldn’t be thinking about ALS. Since you were operated on and your lumbar is fused, that would seem to be a strong indicator.

      Have you tried an extreme rest period? I mean don’t do anything at all, no walking, an 100% shutdown of all activity. Complete rest.

      When do you think you will see the neurosurgeon? It will be interesting to see what he thinks...

      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


      • #18
        I did try the extreme shutdown when I had the shoulder surgery and I thought it was a muscle and would heal. Since I went back to more activity I did so by monitoring my movement like no squatting no stairs no fast walking and it didn't seem to matter. Even no sitting upright. I just did one flight of stairs and my lower leg and foot are numb. Stairs do aggregate for sure,
        I will try to s the neurosurgeon as quick as I can get an appointment but I understand it can take awhile. This doctor is in the neighboring town. I also emailed my shoulder doctor from the big university and asked for a referral.
        It will be interesting to see another opinion on this. Very frustrating to say the least.
        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


        • #19
          Was BMP used in your surgery?

          Tamena
          Diagnosed at age 12 with a double major curve

          Braced till age 15

          SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

          Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

          Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

          Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

          Comment


          • #20
            Yes it was but my lumbar surgery was 7 years ago, Tam I think your problem was found by a different test. What was the one that showed it? The surgeon just keeps saying he doesn't know because he hasn't seen this before.And says it can't be my spine because it is fused.But the EMG shows ----severe left sided L5 radiculopathy with ongoing and chronic denervation. So it doesn't matter that I am complaining about numbness and weaknesses I think this test proves it.
            I am being asked to see a neurosurgeon and I am trying to arrange that.
            It is frustrating to hear my surgeon say I have no idea what is causing this.
            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


            • #21
              I know when I had the one growing on the nerve it did not show up on the mylogram. It showed slight shadowing, but it was not until the surgeon was inside did he see the large bo e growing on top of the nerve. My surgeon said he had never seen anyone one year post-op with a bone like that. It was usually someone that had been fused for many years that showed up with that issue. My EMG also had shown neve issues. Between that and the shadow he thought it was going to be an egg shell sliver and found it medically necessary to do the surgery to decompress the nerve.

              I have found we are all unique and not one of our cases is 100% the same. So there is no manual for our docs and it everything they know is through trial and error and experience.

              Praying you find answers.

              Tamena
              Diagnosed at age 12 with a double major curve

              Braced till age 15

              SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

              Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

              Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

              Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

              Comment


              • #22
                Jackie

                Some reading material...See note 2. Possible explanations of return of nerve irritation

                Problems after herniated disc removal Dr Frank Schwab
                http://www.orthospine.com/index.php/...d=69&Itemid=27

                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


                • #23
                  The problem I am having isn't that painful except sitting.
                  How important is the numbness and weaknesses. It is there but is it a big enough reason to keep looking for the answer. It doesn't seem to be easy to find.
                  The most significant information came from the EMG and that reads severe radiculopathy at the left L5 level with on going muscle denervation.
                  Can this get worse ?
                  My SPINE doctor wants me to see neurosurgeon.
                  I am reluctant to allow a new doctor to work on my spine.
                  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


                  • #24
                    On Tuesday I had the appointment with the neurosurgeon. He was very thorough. He did say some highly unlikely things that I will post next. His take on the sciatic problem is it appears to be one specific nerve and not the total sciatic nerve group. The one is a big enough problem and I'm glad it isn't all of them. He ordered a mylogram and then a follow up with the results.
                    However I am very upset about what he did say .It went like this---at the end of the appointment he said" I am offended that your Dr sent you to me. And I believe your surgeon doesn't want to treat you any longer" I am ordering the mylogram and he should have been the one to do that. He hasn't addressed the issue of the torn hamstring and don't let him tell you that he can't read the hip MRI. After all he is an orthopaedic surgeon and would have had to do a residency in orthopedics. I just responded that I didn't get that opinion about not wanting to treat me. He also asked why I wasn't following up with the scoliosis specialist instead of the spine Dr. And that answer is because the specialist is no longer seeing adults. It was very upsetting !
                    Now I don't know weather to do the mylogram or not.
                    Last edited by jackieg412; 11-24-2016, 10:22 AM.
                    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


                    • #25
                      Jackie

                      I wouldn’t worry about why a particular surgeon wouldn’t want to continue....the reasons for this happening can be infinite, reasons that don’t have to be discussed. For example, perhaps a surgeons spouse was just diagnosed with cancer, and doesn’t feel right about things.....something like this happening would be a good reason.

                      Sciatica type pain is the worst pain, it drove me into very challenging A/P scoliosis surgeries....I hope you can get to the bottom of this soon...

                      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
                        Thanks for the reply Ed. I never had the opinion that my spine surgeon didn't want to treat me. I did get the message from him that he didn't feel it was spine related. However every other Dr feels it is related to the spine.
                        I do wish the neurosurgeon had kept his comment about being offended by my Dr for sending me to him. I have a problem with that because if that is his feelings he needs to address the spine Dr with that and not me. I think the neurosurgeon felt dumped on by an issue that
                        seems hard to find. Again I say tell the doctor that sent me there and not the patient asking for help.Amen
                        I did schedule the mylogram for December 8 th. So I can have time to talk to my doctor before going through that test. And we know it isn't a lot of fun.
                        The neurologist and the neurosurgeon both think it is related to one of the sciatic nerves ,L5 and not the other nerves that make up the sciatic group.
                        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


                        • #27
                          Meylogram done and I got to speak to radiologist that will read it. I am back home resting with a very numb left leg. Hopefully it will lead to an answer before I can't use the leg
                          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


                          • #28
                            Originally posted by jackieg412 View Post
                            Meylogram done and I got to speak to radiologist that will read it. I am back home resting with a very numb left leg. Hopefully it will lead to an answer before I can't use the leg
                            I sure hope they figure out this and can make a plan on treatment.

                            Waiting is never easy especially with leg pain.

                            I'm wishing for you for a better tomorrow also, I'm spent today too and calling it a day.
                            Melisse
                            Age: 42: with 42* Lumbar, 32* Thoracic.
                            Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
                            Wore Boston Brace 2 -3 yrs

                            Comment


                            • #29
                              Thanks for the well wishes. I still don't have an answer . Some things showed on the mylogram but nothing not questionable. I have sent the different test results to a new neurosurgeon that the neurologist recommended to my spine doctor. They will decide if they can help. He is from RUSH in Chicago. The neurologist thinks this new neurosurgeon has more experience in the complicated spine surgery of a scoliosis patient. I will find out next week if he thinks he can help
                              Can sciatica really be this difficult?
                              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


                              • #30
                                I did receive a call from the neurosurgeon's office that he reviewed my test results and wants to see me right away. They scheduled an appointment for this Wednesday. Maybe he will have an answer.
                                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

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