Announcement

Collapse
No announcement yet.

It's been awhile

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • It's been awhile

    Hi again,
    It's been a couple of months since I've posted anything. I guess I thought that after the second surgery, when all the instrumentation was removed from my daughter (Kate) that I wouldn't need the support I have always gotten here.
    I was wrong.
    The lesson I am learning is that scoliosis never "gets fixed" like a cavity or broken bone. It is a life-long condition that changes over time. Sometimes for the good, sometimes not.
    As some of you might remember, Kate had revision surgery July 15th. They removed 2 rods and all the screws and "stabilizers" (?). I asked her surgeon if he would save them for us and he did. I have to admit, my stomach turned when I saw them for the 1st time. I tried to attach photos of everything, but all the files were too big to attach. If anyone would like to see them, I can email them privately, I guess. I don't know what "brand" they were (Harrington, etc.) but I do know they look awfully painful.
    They were removed because Kate has had ongoing pain sonce before her 1st surgery in November 2003. We (Kate, Kate's surgeon and myself) have kept a watchful eye on her condition, but it seemed like the pain just kept increasing. Her surgeon decided to remove the hardware and at the same time "bulk up" one of the fusions that looked suspicious. He was hoping that would eliminate her pain.
    As everyone here said, the actual surgery was much easier than the 1st one. If you can really say anything like this is easy. Kate was released from the hospital quicker and it seemed like her recovery went quicker. But the pain never quite went away. At first we attributed it to post surgical pain, but more and more it seems like we are back to step one. She is still in pain, her life is altered because of it and no one knows what is going on.
    We have an appointment with a pain management specialist on 9/29 (can you believe it takes more than 4 weeks to get into a pain management clinic?) Then she has an appointment in December to see another surgeon. Her current surgeon thinks it still might be post operative pain and that we should give it 6 months after the surgery to subside.
    In the meantime, she is in daily pain - the kind that wakes her up at night and makes her cry out of pain and frustration. She has taken hydrocodone 7.5(Lortab) since before the 1st surgery (that is more than 2 years), and it makes the pain bearable but makes her so sick to her stomach now that alot of times she just decides it's not worth it. It breaks my heart and I feel so useless. She started college a month ago, so she isn't even here for me to help her even a little.
    I guess I am just venting and hoping for ideas from anyone about what to do next.
    Sorry this is so long and rambling.
    Kathy (Kate's Mom)

  • #2
    Kathy,

    Sorry to hear that the revision did not correct the pain issue. Easier said than done, but you have to find out what is causing the pain and have it corrected. Now is the time to get several other opinions from renowned specialists. She is much too young to live in pain as you describe.

    Mark
    Mark & Jane, Parents of Lisa
    Daughter 15 years old
    Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
    Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
    After: PT – 7, MT – 4, L – 15, kyphosis – 32.

    Comment


    • #3
      Kathy, I know what Kate is going through. I had my surgery in Feb of this year and now have one of the rods sitting on a nerve. It causes pain all the time and many times it is absolutly unberable. I hate it when I find myself going to bed in tears from pain. I too just started college and have been moved into my dorm for exactly a month. Sometimes I wish that my mom was around for me to lay on when I didnt feel well.
      When my ortho found out it was probably a nerve he decided to take one of the rods out so that the nerve would be free. The only problem with it all was his timing. He wanted to do the surgery 2 days before I started college so I had to make the decision to wait until Christmas break to get any relief.
      Tonight I am having a hard time falling asleep and this is after taking a prescription sleep aid and narcotic pain killer. I hope I sleep soon.

      Comment


      • #4
        Mark,
        As you said, our goal now is to find the source of Kate's pain and deal with it. Unfortunately it is a process of elimination. We are slowly eliminating things and hopefully we will come across the culprit. My concern is that all too often you hear about cases where they tell you that there is no definitive cause and she'll just have to learn how to deal with the pain. The biggest thing is the frustration at how slow this goes, and while it is going on she is trying to deal with her life as it is. We have taken another step in the process by scheduling an appointment with another surgeon. This time an adult spine specialist (her current surgeon is pediatric). Maybe he'll have another way to see things.
        Curvy,
        My heart and prayers go out to you and your family. We know what you are going through. I pray that the revision surgery stops your pain, and from what I understand it does in most people. It's nice to know that you and Kate are in such similar situations. Not the situation itself, but knowing there is someone who can sympathize so much. We too had the option of trying to schedule Kate's 2nd surgery over her Christmas break, but I pushed to have it bumped up. I didn't think she could deal with the kind of pain she was in and start at college all at the same time. Guess I was wrong. Even with the surgery she is in pain and so far she is doing well scholastically (sp?). As I've said, she has had her issues with pain while she's there and she's blowing through her Lortab at record speed. At this time she doesn't have any sleeping pills, but I can see that in her future if this continues.
        I hope you get relief (and sleep) soon. If there are any questions we can answer for you, please don't hesitate to ask (although I am kinda short on answers at this time, we will do our best!)
        Best of luck to everyone going through this.
        Kathy (Kate's mom)

        Comment


        • #5
          Private Message...

          Kathy - I sent you a private message yesterday. Hopefully you received it. Lynn
          1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
          2000 Partial Rod Removal
          2001 Right Scapular Resection
          12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
          06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

          Comment


          • #6
            Lynn,
            I have no private messages in my inbox. Can you try resending?
            Thanks,
            Kathy

            Comment


            • #7
              Private Message

              Kathy, Yes, I have to type it again as I don't see it in my sent box...darn.......It will take me a few minutes. Not a problem...Lynn
              1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
              2000 Partial Rod Removal
              2001 Right Scapular Resection
              12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
              06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

              Comment


              • #8
                Hi Kate...

                I'd really like to encourage you to get a second opinion for Kate. As you know, I was concerned before the second surgery, and am still.

                Regards,
                Linda
                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


                • #9
                  Linda,
                  This time I am getting a second opinion. If need be, I will get more than that. I guess naively I thought that "Dr. knows best" and the quicker we get this surgery done, the quicker she will be out of pain.
                  A lesson learned.
                  It's not that I didn't listen to everyone before, but I thought, we are here dealing with this now, and no matter how smart it sounds to get a second opinion, we need this to end NOW. It didn't.
                  This time will be different. If we have to travel, we'll travel; if she needs more tests and opinions, we'll get them. As much as we would like one, there is no quick fix for this.
                  Thank you for your concern and I will keep everyone updated.
                  Kathy

                  Comment


                  • #10
                    Hi Kathy...

                    I understand. You gave it a good shot, and unfortunately it didn't work. Now, it's time to look elsewhere. The good news is that you don't have to travel far to find a good surgeon. I'd encourage you to check out Drs. Oheneba Boachie-Adjei, Barron Lonner or Michael Neuwirth in NYC, or Paul Rubery in Rochester.

                    Best of luck.

                    Regards,
                    Linda
                    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


                    • #11
                      Pain that won't go away from Leah's Mom

                      Hello;
                      Leah is 17 now; she was fused T5-L2 in August 2004 and the pain, fatigue, nauseau are all getting worse; she misses some classes 3/5 days and I help her with almost everything as she cannot concentrate (previously 97% average, sciences, French Immersion, very good athlete) and she never never sleeps; pain meds don't really seem to help much; she has hydromorphone and ondansetron for the nausea; she has tried neurontin, lyrica, elavil and now wellbutrin to no avail; We are looking at revision surgery(just getting started here as the surgeons have found that the fusion was very successful and they don't really think revision will help) but the secondary diagnosis is fibromyalgia (look at fmnetnews.com) and neuropathic pain. It takes months to get into any specialists but the guru in Vancouver BC pain clinic is working through the anti-epileptics and the anti-depressants; they are doing lots of work on pacemaker implants to different nerves to slow the overactive pain response, but people with generalised pain like Leah's are not yet being treated as they are treating very specific nerves at St Paul's, YVR.
                      What may help folks on the East Coast is a study being done in Newark NJ which involves implanting a pacemaker to the vagus nerve; it was originally tried on people with seizures/or depression and they found a side effect was drastic relief of pain symptoms
                      there is more info at www.umdnj.edu/pain
                      the Drs are Gudrun Lange PhD and Benjamin Natelson MD
                      I don't know if Kate is having trouble sleeping because of the pain? Studies do show that Fibromyalgia patients experience less pain when they can finally achieve some Stage 4 sleep; they have had some success using Xyrem which is unavailable in Canada. Once again there is a neurologist in Newark, Benjamin Natelson, M.D. who is conducting a double blind study on the efficacy of this drug.
                      Something I have noticed is that patients tend to have alot of unresoved pain after thoracoplasty. At Children's in Vancouver BC they harvest bone from the ribs and Leah has constant pain from her ribs not staying put and putting her neck out of alignment which produces severe headaches and muscle knotting.

                      Just some thoughts here;
                      I have not posted on this since Jan 2004, but I recognize some names here
                      Take care, all
                      Carol (Leah's Mom)

                      Comment


                      • #12
                        I sent you a Private Message

                        Carol - sorry to hear about Leah's pain. I sent you a Private Message. Take care, LYNN
                        1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
                        2000 Partial Rod Removal
                        2001 Right Scapular Resection
                        12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
                        06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

                        Comment


                        • #13
                          I have rods removed

                          Hi,
                          Just thought I would let u know I had my rods removed and the post operation pain latsed about a week. I definiately visit another surgeon and get a second opinion because there is no way she should be in pain that wakes her up at nite.I myself am not pain free but that doesnt have anything to do with the removal of the metal it is to do where the fuse and unfused meet causing muscle spasms. Good Luck I know it is alot of trouble and when I moved from Ireland to England trying to set myself up with a new surgeon to assess any spinal movement was a pain but I got there .

                          Amanda

                          Comment

                          Working...
                          X