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  • #1

    Returning here after several years....

    Hi to all Scoli patients,

    This is Sheryl in TX. I posted back in March 2017 before my two day surgery events. I had T10-S1 fused and then in early 2019, I had another surgery to do debridement around the nerve roots to alleviate sciatic pain. That didn't work at all, even though my surgeon really tried his best. For the last two years, I have been getting progressively worse in the pain from my back. Mostly at the lower T levels and all lumbar levels. The pain is terrible burning, bad sciatic pain, numb legs and feet and shooting pains into my toes. Those are just the basics. I had a full thoracic and lumbar x ray not long ago and it showed nothing remarkable. Getting action out of the neurosurgeon's office has been difficult because of the full load they carry and other issues with some of the help in that office. I have done extensive research the last several days. I am obviously no doctor, but I think this is "AA" -- Adhesive Arachnoiditis. Does anyone else have this? Does anyone have terrible debilitating pain after trying to work hard around the house or yard? I'm only good for about two hours or a bit more and then I need a break. I used to run circles around other folks as little as a few years ago. That has all gone away.

    Yesterday I had a CT scan of my thoracic and lumbar areas. Hopefully, something will show up so as to cause a diagnosis. I just really don't know what I'm going to do. I wear my back support that I bought years ago, most all the time at home, inside and out. If I work too hard, I can hardly move. If anyone has any advice, please feel free to let me know.

    Blessings to you all,
    Tags: None
  • #2
    Good morning. I too have arachnoiditis . It is all you described. Mine showed on a mylogram. There isn't much that can be done. And not every Dr believes in it.
    However, I have an implanted pain pump. There aren't any narcotics in my pump. It has improved my symptoms and my thought is it helps keep the spinal fluid moving instead of forming pockets around the compromised areas. I don't know if that is a fact or just the way I feel.
    It is worth a discussion. I still have some issues and need to rest but it is indeed an improvement.
    Feel free to ask me any questions.
    Jackie

    ​​​​
    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

    • #3
      Originally posted by jackieg412 View Post
      Good morning. I too have arachnoiditis . It is all you described. Mine showed on a mylogram. There isn't much that can be done. And not every Dr believes in it.
      However, I have an implanted pain pump. There aren't any narcotics in my pump. It has improved my symptoms and my thought is it helps keep the spinal fluid moving instead of forming pockets around the compromised areas. I don't know if that is a fact or just the way I feel.
      It is worth a discussion. I still have some issues and need to rest but it is indeed an improvement.
      Feel free to ask me any questions.
      Jackie

      ​​​​
      Hi Jackie,

      I have been reading here a while and now I see that you are affected too. My goodness, so at least there are two of us. I have an appointment on May 10 with my pain management doctor. If the CT doesn’t show much, then I’ll ask him for the MRI. It hasn’t been that long since I had one though, maybe a couple of years.

      Is your pump just a pain pump then? Or one of those other spinal pumps? I forgot the name of them. I hope that my pain doctor believes me, and I think he will. I wrote the PA at the neurosurgeon’s office that I think I have AA, and he was the one who ordered the CT. That being said, a neurosurgeon isn’t really the kind of doctor who will go forward with this. They really just screen for surgery needs and heaven knows I have had enough spinal surgeries. Four of them within less than three years, as well as numerous injections and somewhere along the line an epidural as well, although for what I cannot remember.

      My eyes are sometimes blurry and I thought it was just because I need my second vitrectomy, but maybe not. I had a long day today although not much physical work at all, just out all day. I’m very tired from that. Tomorrow I have laundry all day and vacuuming. I hope that I can do most of it. I have re-potting to do outside and a patio to clean too and some ironing. I used to be able to do at least most of those things in one day. Not any more. Those other things will have to wait for another day. I may just be able to manage the laundry.

      I imagine that you have to rest often as well, correct? I’m not very good at it, but I have had to do it anyway. What all symptoms do you have and how long have you had them?

      Does TitatiumEd post anymore? I didn’t see his name lately. I’ve been lurking off and on since my second and third surgeries back to back in March of 2017 and then my debridement surgery in March 2019.

      How do you feel on any given day?

      Thanks, Jackie. I really do appreciate any and all help that you have.

      Blessings,
      Sheryl

      Comment

      • #4
        I will do my best to answer the questions, Sheryl. I am happy to have a friend. About Ed, I don't know why he hasn't posted but I miss him. I do have his email and will try to reach him. Susan, the one that wrote about imbalance, talked to him not too long ago, so at least he is okay.
        I was diagnosed in 2017 with arachnoiditis, by a mylogram. When the neurosurgeon showed me, it looked like confetti . That is my name but not too scientific. Maybe it always looks like that because on the nerve impulse.
        My pump is called a pain pump but there isn't any narcotics in it. To me the improvement is less leg pain, and less ringing in my ears. For some reason, if I have a flare , I will be a lot of ringing.
        My pump gets refilled about every 3 months. I guess you can ask about a spinal cord stimulator also. I don't know if it will help.
        If it is arachnoiditis, there isn't much that can be done. It is way too risky to even try. And do remember not all doctors believe in it. My original surgeon , an orthopedic, did not.
        Yes, I rest off and on. But do to the broken neck, I fight for balance. While the neck was broken bilateral, I am more comprised on my right side. About 8 months ago, the neurosurgeon and neurologist gave it a permanent classification and now it is going to be a progressive neuropathy. So much fun.
        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

        • #5
          Good luck on your appointment. I hope you can get something that may help. Sometimes it seems as if it is just trial and error. Let us know
          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

          • #6
            I think it's essentially my fault that Ed is no longer participating. Some time ago, I had a complaint about Ed giving medical advice. It was something that bothered me, and I usually let it go, as I felt that Ed's participation was valuable. I wrote him privately a few times, asking that he keep his responses to talking about his personal experiences, and stop diagnosing and giving medical advice. I told him that he played an important role by giving support, and just needed to limit his responses. He never responded to my message, and stopped posting altogether. It was a good lesson for both of us. While I frequently gave what I consider medical advice, I had daily access to spine surgeons, and would check with them before responding with medical info. When I retired, I would email some of the surgeons to get response advice, but gave it all up a few years ago, as I've just been too removed from the subject.

            I'm fairly sure that you can email Ed and fairly certain he'll respond.
            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
            • Likes 1

            Comment

            • #7
              Sheryl, I am just wondering how your appointment went. I hope you get some help. Please let us know.
              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

              • #8
                Originally posted by jackieg412 View Post
                Sheryl, I am just wondering how your appointment went. I hope you get some help. Please let us know.
                Hi Jackie,

                My goodness, I am so sorry that I didn't answer until tonight. Well, I went to my appointment and my doctor was very very nice. He said that AA is very difficult to diagnose and sometimes its impossible to do so. He said that the most diagnostic test that exists is a myelogram (contrast CT) and even that can cause worse problems, so he doesn't recommend it. I was hoping for a diagnosis, but I did not get one. I guess that doesn't matter. He once again, has recommended a Spinal Cord Stimulator. He doesn't think it will help much with the back pain, but is about 80-90% sure that it will help with the nerve pain/sciatic pain and burning and numbness and stabbing pain in my feet. So I set up a trial to begin in early October. We would like to take a trip before then. I really miss being able to hike, or even walk the mall with no pain. I can walk from the parking lot to two stores down the main hall of our best mall and by that time I have bad back pain. I can't just go shopping anymore, so I go to a couple of stores and then park close again and go to another store or two. It's alright as I don't need to shop much anyway.

                I'm not sure why a diagnosis would make me feel better, but I would like one. I was looking through all my medical records and I see that in July 2017, I did get a CT mylogram with contrast. Who knows? Maybe that made it all worse? It really is a crap shoot at this point, as I have had four back surgeries, one contrast CT, several injections in my lumbar spine and undiagnosed scoliosis for many years. Any one of those or a combo of them could have caused this AA condition.

                Anyway, it is nice to "know" someone else with this. I know it's rare, but I hear that it's not as rare as some doctors believe. I don't think there are ANY current testings going on for folks like you and me. I cannot find any doctors who specialize in this either. My husband is willing to take me anywhere to find out more, but I can't find anywhere to go. I'm sure that you have run the gamut on trying to find help.

                I am beyond sorry about everything that you have to go through. I don't understand why these things happen to some people. I don't wish this on anyone else though. I will keep you in my prayers for sure.

                Take care and I look forward to hearing from you and seeing how you are doing these days.

                Sheryl
                Last edited by TXMom; 07-02-2023, 12:11 AM.

                Comment

                • #9
                  Hi Sheryl, I understand your frustration. It is a hard thing to live with and not know exactly what the problem that is causing it. I was diagnosed through a mylogram. Many things can cause this. One thing that helps me is rocking back and forth, either on my feet or in a rocking chair. There are newer types of spinal cord stimulators and more efficient. I want to think Abbot labs has one. Get your information as much as you can to help make your decision. The trail is fairly easy. I have a pump for medication that helps. There aren't any narcotics in the pump. The older versions of stimulators couldn't be placed with full fusion. I think that has cha now.
                  Enjoy your trip. I hope it goes well..
                  I have had some very disappointing news and I am trying real hard to keep going. The scapula thoracic fusion failed. It was a long recovery, not too bad of a surgery but to redo it will be very difficult. I'm not sure of what to do . Two options, do nothing and let it be or a redo. Both have challenges.
                  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

                  • #10
                    Originally posted by jackieg412 View Post
                    Hi Sheryl, I understand your frustration. It is a hard thing to live with and not know exactly what the problem that is causing it. I was diagnosed through a mylogram. Many things can cause this. One thing that helps me is rocking back and forth, either on my feet or in a rocking chair. There are newer types of spinal cord stimulators and more efficient. I want to think Abbot labs has one. Get your information as much as you can to help make your decision. The trail is fairly easy. I have a pump for medication that helps. There aren't any narcotics in the pump. The older versions of stimulators couldn't be placed with full fusion. I think that has cha now.
                    Enjoy your trip. I hope it goes well..
                    I have had some very disappointing news and I am trying real hard to keep going. The scapula thoracic fusion failed. It was a long recovery, not too bad of a surgery but to redo it will be very difficult. I'm not sure of what to do . Two options, do nothing and let it be or a redo. Both have challenges.
                    Hi Jackie,

                    I am beyond sorry for your disappointing news. I have prayed for you and will do so again. I am scheduled to get a spinal cord stimulator trial in the next few months. I have so much pain in my legs and feet that sometimes it keeps me awake and that's after taking gabapentin.

                    My doctor said that even if I have another mylogram with contrast, it wouldn't necessarily confirm Adhesive Arachnoiditis. Does your back give you a lot of pain when you first lay down for the night? Mine does and I have found that if I keep one knee up and my foot on the bed, it helps relieve it for the laying down part. Just an idea for you. I haven't tried the rocking other than on my outdoor glider. I haven't noticed any improvement with that, but I don't do it much. I wonder if my being a really late night owl is because I rarely feel any better even after eight hours sleep. Hmmm....

                    Write back when you can. I think you and I might be the only ones here with the AA. Even though mine has not been confirmed, I have all the symptoms. Anyway, take care and I will indeed be praying for you. Blessings from Texas. By the way, we cancelled our trip. I didn't want to go at this time so we will reschedule after I get the stimulator installed permanently, assuming that I will. The weather in the Spring or early summer there will be better anyway. .

                    Comment

                    • #11
                      Jackie and Sheryl, What is the difference between a "spinal cord stimulator" and a "pain pump"?
                      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

                      • #12
                        Hi Susan, I am so sorry to answer you so late in the game. I don't log on very often because there are only Jackie and myself with Adhesive Arachnoiditis. A spinal cord stimulator blocks the pain signals that an area sends to the brain. It helps a patient to have less pain. I just got mine installed on January 2, 2024. We are still trying to get it to the right settings. Apparently, this can take months. It is frustrating to the hilt because I still don't have enough pain relief. It will only take care of the pain that is related to the sciatic pain and the nerve pain from my buttocks to the tips of my toes. It doesn't cover the pain in my mid back. There isn't much to do about that except medications. And they don't help a lot. I am not sure what a pain pump is, so Jackie will have to speak to that. Again, I'm so sorry for not seeing this earlier.

                        How are you doing Susan? . Take care and I'll try to check in again soon.

                        Blessings,
                        Sheryl

                        Comment

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