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Harrington Rod remains, Mass and pain question for Wise/SCI Nurse or others

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    Harrington Rod remains, Mass and pain question for Wise/SCI Nurse or others

    Has anybody ever had any mass or thing such as what they found on me on my previous rods? If so, what was done and was there any pain dealt with before it's existence was found?

    My rods were removed after they broke approximately two years after being put in by Dr. Harrington. A bit was left on both ends and so far I had had no problems with them. On last week's X-ray and CT Scan they showed a mass on the tip of the top one. The pulmonologist believes that it may be scar tissue but to be on the safe side will be monitoring the mass to see if it grows or not. He has asked me to set up an appointment with either a neurologist or spine doctor. I called a neurologist today and the closest date they could give me was until Oct 15th. The pain has spread now to the front of my left chest front area. As much as I hate taking the med given for pain, I am now taking it more often now within the time ordered by the doctor. I used to take half a pill but am now at times taking the whole pill. Also worry since the gastro has previously told me not to take too much Tylenol or anything that has Tylenol due to my liver problems.

    I am interested in finding all I can on this mass and harrington rods since I had never heard anything like this happening before. Any help would be appreciated.

    Raven
    Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

    A warrior is not one who always wins,
    but one who keeps on fighting to the end ~ Unknown ~

    #2
    Was your Dr. Harrington *the* Dr. Harrington?

    I don't blame you about being concerned about taking Vicodin with your existing liver problems. Perhaps if you called the doctor who prescribed the pain meds and told him of your liver issues, he could prescribe you something without acetaminophen (e.g.oxycodone).
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

    Comment


      #3
      Originally posted by Raven View Post
      Has anybody ever had any mass or thing such as what they found on me on my previous rods? If so, what was done and was there any pain dealt with before it's existence was found?

      My rods were removed after they broke approximately two years after being put in by Dr. Harrington. A bit was left on both ends and so far I had had no problems with them. On last week's X-ray and CT Scan they showed a mass on the tip of the top one. The pulmonologist believes that it may be scar tissue but to be on the safe side will be monitoring the mass to see if it grows or not. He has asked me to set up an appointment with either a neurologist or spine doctor. I called a neurologist today and the closest date they could give me was until Oct 15th. The pain has spread now to the front of my left chest front area. As much as I hate taking the med given for pain, I am now taking it more often now within the time ordered by the doctor. I used to take half a pill but am now at times taking the whole pill. Also worry since the gastro has previously told me not to take too much Tylenol or anything that has Tylenol due to my liver problems.

      I am interested in finding all I can on this mass and harrington rods since I had never heard anything like this happening before. Any help would be appreciated.

      Raven
      Oh, Raven, I am so sorry that one more thing to worry about has been put on your pile. I think that this should be investigated with some urgency. "Scar" tissue should not be forming around the tip of a leftover Harrington Rod. The fact that it was detected in both plain x-ray and CT tells me that it has a boundary and may have areas of increased x-ray absorption. The fact that you say a pulmonologist saw this suggests that it is a mass is in your chest. If so, it seems that October, i.e. 6 weeks, is too far away. You should try to get an earlier appointment.

      In the meantime, you may want to do the following:
      1. Track down previous x-rays and CT scans, particularly recent ones, and look to see if anybody saw anything.
      2. Consult with your doctor concerning your increased pain and make sure that your liver function tests are stable.
      3. Talk to an oncologist and see if a blood test to measure serum HAAH, which is a marker for cancer, is warranted.

      Wise.

      Comment


        #4
        Originally posted by thehipcrip View Post
        Was your Dr. Harrington *the* Dr. Harrington?

        I don't blame you about being concerned about taking Vicodin with your existing liver problems. Perhaps if you called the doctor who prescribed the pain meds and told him of your liver issues, he could prescribe you something without acetaminophen (e.g.oxycodone).
        Yes THC, it was *the* Dr Harrington who originally started the idea of these rods who did my surgery. It was in 60 or 61 when he performed it. I can't remember the exact year anymore since that was so long ago. It was done in Houston, Tx. I recall being afraid since from what I had read on an Life magazine article it was still a new procedure. Also, at the time I was still pretty young and had never been away from hometown or my parents home. The only thing that made me want to do it was the way my body kept feeling with the scoliosis and the fact that the article mentioned possible short life if not done. It was altogether quite an experience for me which even if I don't recall the exact dates. My first time on a plane, a new city, new wonderful people I got to meet and first time away from my family.

        As for the tylenol, God willing, I plan to call my gastro on Monday and update him on what is going on with my body now.

        Raven
        Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

        A warrior is not one who always wins,
        but one who keeps on fighting to the end ~ Unknown ~

        Comment


          #5
          Originally posted by Wise Young View Post
          Oh, Raven, I am so sorry that one more thing to worry about has been put on your pile. I think that this should be investigated with some urgency. "Scar" tissue should not be forming around the tip of a leftover Harrington Rod. The fact that it was detected in both plain x-ray and CT tells me that it has a boundary and may have areas of increased x-ray absorption. The fact that you say a pulmonologist saw this suggests that it is a mass is in your chest. If so, it seems that October, i.e. 6 weeks, is too far away. You should try to get an earlier appointment.

          In the meantime, you may want to do the following:
          1. Track down previous x-rays and CT scans, particularly recent ones, and look to see if anybody saw anything.
          2. Consult with your doctor concerning your increased pain and make sure that your liver function tests are stable.
          3. Talk to an oncologist and see if a blood test to measure serum HAAH, which is a marker for cancer, is warranted.

          Wise.
          Thank you Wise for your reply. This mass does worry me a lot. Previously, my gastro had run some blood tests to check on the markers that had shown up before but he had said that the levels didn't come in too high. The last one had even come in lower than the previous one. The doctor at the hospital did run some too but nothing was said about them to me though. I will do as you have suggested. Have been to an oncologist on two occassions and the last time I went, they ran an MRI but the tests were inconclusive and apparently they couldn't find what or see what they were looking for. They couldn't use the contrast dye(IVP Dye) since I am allergic to it. They gave me the written results and asked that my gastro see them and decide what to do from there on.

          Also, last week when I was admitted to the hospital, the ortho who took the X-Rays and CT Scan gave me the CDs of the results so I can use them with my other doctors. If possible, I would like to share them with you through a PM as soon as Nick can do it for me since I don't know how to do that. I hope you don't mind and maybe you can get a better idea of what the problem is.

          Something else that the pulmonologist said was that he didn't want to do a biopsy since he thinks my badk has had too much poking in there already. He decided to monitor for now for any changes that he may see. As for me, I don't know how to take all this. I hurt physically but at the same time, I also hurt inside of my soul. Am afraid of facing something much more serious than just physical pain. I guess that I will be needing a lot of prayers and support throughout all this. Hopefully, we will just find that it won't be so bad after they do whatever is needed to find the answers and taking care of the problem(s).

          Again, thank you Wise for everything you have done for all of us and your heart of gold. May He guide you and help you to find some reprieve for so many of us that that travel through this road of uncertainty and pain in our lives.

          Raven
          Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

          A warrior is not one who always wins,
          but one who keeps on fighting to the end ~ Unknown ~

          Comment


            #6
            I have 3 Harrington rods that were inserted in 1985 and (knock on wood) have not had one issue. My surgery was done by a Dr. Nason in Childrens Hospital in Washington, DC.

            I really hope everything works out for you for the best!
            Larry
            ------
            Visit - The Wolfe Pit Channel

            Comment


              #7
              Raven,

              It sounds like you have been on the right track and will continue to pursue this.
              This is hard work to stay upbeat in the face of lots of complex medical issues.
              I will be praying for you and hope you will seek out friends, family and counselors if needed to discuss this with and to help you through this.

              I feel you will get to the bottom of this and it will be taken care of, but please don't try to do this alone.

              Keep us posted.

              AAD
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #8
                We'r new here, but hope you get good news from dr.s . Keep you in our thoughtrs and prayers . meerkats wife .

                Comment


                  #9
                  Raven, I am so sorry. I send all the positive thought I have. And cross my fingers and feet that nothing serious is wrong but that they still find out the reason for your pain.
                  You know I don't pray, but it doesn't mean my positive thoughts and wishes are not helping you.

                  Hugs Bente
                  TH 12, 43 years post

                  Comment


                    #10
                    Originally posted by Raven View Post
                    Thank you Wise for your reply. This mass does worry me a lot. Previously, my gastro had run some blood tests to check on the markers that had shown up before but he had said that the levels didn't come in too high. The last one had even come in lower than the previous one. The doctor at the hospital did run some too but nothing was said about them to me though. I will do as you have suggested. Have been to an oncologist on two occassions and the last time I went, they ran an MRI but the tests were inconclusive and apparently they couldn't find what or see what they were looking for. They couldn't use the contrast dye(IVP Dye) since I am allergic to it. They gave me the written results and asked that my gastro see them and decide what to do from there on.

                    Also, last week when I was admitted to the hospital, the ortho who took the X-Rays and CT Scan gave me the CDs of the results so I can use them with my other doctors. If possible, I would like to share them with you through a PM as soon as Nick can do it for me since I don't know how to do that. I hope you don't mind and maybe you can get a better idea of what the problem is.

                    Something else that the pulmonologist said was that he didn't want to do a biopsy since he thinks my badk has had too much poking in there already. He decided to monitor for now for any changes that he may see. As for me, I don't know how to take all this. I hurt physically but at the same time, I also hurt inside of my soul. Am afraid of facing something much more serious than just physical pain. I guess that I will be needing a lot of prayers and support throughout all this. Hopefully, we will just find that it won't be so bad after they do whatever is needed to find the answers and taking care of the problem(s).

                    Again, thank you Wise for everything you have done for all of us and your heart of gold. May He guide you and help you to find some reprieve for so many of us that that travel through this road of uncertainty and pain in our lives.

                    Raven
                    Raven,

                    I understand. As long as you and everybody understands what the risks are and the consequences are, I agree. On the other hand, if the mass is cancer, I think that you should know and be prepared. Not knowing is worse that knowing. If it turns out to be just calcified scar tissue around an area of trauma, you can rest easier. If it turns out to be a tumor or lung cancer, heaven forbid, I think that it is better to know and make a decision on how to handle that rather than let it go for several months and then realizing that it is too late to do anything.

                    I am not sure that having doctors look at the image will help with the decision. A biopsy is not dangerous and will give you a definitive diagnosis. I know of several friends who have undergone this biopsy recently and they don't even stay overnight in the hospital although your doctor may elect to keep you in if you have clotting problems. In any case, I think that it is better to know than to not know.

                    Wise.

                    Comment


                      #11
                      Pet scan W/WO who told u, u,are allergic 2 contrast???? u can be treated pre MRI 2 allow contrast...dah who the ----is advising u?

                      Comment


                        #12
                        I'm so sorry, Raven, that you keep getting hit with new problems to face. Your plate was full and even overflowing a long while ago -- it's just not right that you now have a mystery mass with which you must deal.

                        I really understand where you're coming from in terms of your fear of finding something worse than something that causes physical pain. But living in the unknown is a much scarier place to be than coming out into the land of the known. Being able to name what is going on gives you power to deal with it. Letting the mass remain a mystery surrenders your power to it -- it can make itself appear to be far more menacing than it really may be when it is allowed to stay hidden in the shadows.

                        I would really like to see you take Wise's advice and get a biopsy done so you know what's going on, and can figure out what your options are for dealing with it. I went through two years of misdiagnosis and not knowing before doctors finally discovered the astrocytoma. Although it was a real blow to learn I had an advanced stage of cancer with very poor survival odds, finally being able to name it and knowing what needed to be done to beat it was empowering.

                        Plus, catching things sooner rather than later gives you more options and better outcomes. Please don't wait until October to make your next move re: this mass.

                        We will be with you, whatever you choose to do and regardless of what they find.

                        P.
                        It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                        ~Julius Caesar

                        Comment


                          #13
                          Originally posted by WolfeMan View Post
                          I have 3 Harrington rods that were inserted in 1985 and (knock on wood) have not had one issue. My surgery was done by a Dr. Nason in Childrens Hospital in Washington, DC.

                          I really hope everything works out for you for the best!
                          I have decided to answer each reply since I feel that each one is a show of care and wonderful way of supporting me at a time when I am feeling pretty overwhelmed.

                          Thank you WolfeMan for your words and wishes.

                          As to their putting 3 rods, was there a particular reason for it? I had thought that they always only put one. Glad that they have never given you any problems at all. The less problems we get the better.

                          Raven
                          Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

                          A warrior is not one who always wins,
                          but one who keeps on fighting to the end ~ Unknown ~

                          Comment


                            #14
                            Originally posted by SCI-Nurse View Post
                            Raven,

                            It sounds like you have been on the right track and will continue to pursue this.
                            This is hard work to stay upbeat in the face of lots of complex medical issues.
                            I will be praying for you and hope you will seek out friends, family and counselors if needed to discuss this with and to help you through this.

                            I feel you will get to the bottom of this and it will be taken care of, but please don't try to do this alone.

                            Keep us posted.

                            AAD
                            Thank you AAD. This year has seemed to be pretty hard to deal with from just about the beginning and the cough that wouldn't let me be. Thank Goodness it seems to be gradually getting better.

                            I have been very lucky to have a very supporting family, friends and those here at CC who have been there for me all this time. I consider myself blessed. My son has also been a really great support both in caring and being patient with me throughout all this time of turmoil. I will do my best to return the love, care and concern received too. Also will get my counselor to help me deal with whatever may lie ahead if it is needed. Thank you for reminding me to reach out when the journey becomes harder, I will keep that thought in mind. Thanks for keeping me in your prayers, I do appreciate it very much.

                            Raven
                            Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

                            A warrior is not one who always wins,
                            but one who keeps on fighting to the end ~ Unknown ~

                            Comment


                              #15
                              Originally posted by meerkat View Post
                              We'r new here, but hope you get good news from dr.s . Keep you in our thoughtrs and prayers . meerkats wife .
                              Thank you meerkats wife for your words. Also want to welcome you to CCC. I know that you will find many friends here and so much support plus information which we need many times. If at any time, I may be of help to you, just ask or pm and I will try my best to help you.

                              Raven
                              Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

                              A warrior is not one who always wins,
                              but one who keeps on fighting to the end ~ Unknown ~

                              Comment

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