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well... no wonder my rib hump didn't match my curvature

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  • well... no wonder my rib hump didn't match my curvature

    Well, well, well...

    I had my t-spine and l-spine MRIs today and got copies of the films. (there's a little voice in my head that says now they don't have anyting to read from b/c they gave me the orig. set...despite the fact I know they can print out two copies.. i'm such a weirdo)

    I have a tumor at least 1/2 the size of my left kidney behind the left kidney (so it's retroperiotenial)...where my rib hump is. I always thought my rib hump span more ribs than it really should for my short curvature..so that explains a bit :-p. Also proves I'm not crazy and did not imagine 'kidney' pain.

    Lying still on the hard scanning bed for 1.5 hrs was a pain in my butt... literally. ow, my poor sacrum.

    It's weird to me that this tumor never showed up on x-rays but it is soft tissue tumor...
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  • #2
    I hate lying still for so long in MRI's. I feel bad for your poor sacrum. Good luck with your tumor. Werid that it did not show up on an x ray, but it would make sense if it were soft tissue.
    I had a bone tumor found on my femur during an x ray and then had to have an MRI afterwards, but yours is the other way around.
    Hope all turns out well for you. I will be praying for you.
    Mandy

    Comment


    • #3
      Yikes Green... I'm so sorry. Are they going to do a biopsy soon?

      --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


      • #4
        Thanks for the well wish Mandy :-)
        What did the finding on femur turn out to be? (if you dont mind me asking.. I'm forever curious)

        Linda -- I'll see what the neurosurgical oncologist I see in three weeks says. Most likely, it's benign, so as long as it doesn't continue to grow or start affecting my kidney function, it'll probably be left alone. They probably want to yank it out still.

        My body doesn't produce enough neurofibromin, which is a tumor supressor... so it likes to grow things that aren't supposed to be there . Too productive... so to speak. (now if I could only get my brain to do that...)
        30 something y.o.

        2003 - T45, L???
        2005 - T50, L31
        bunch of measurements between...

        2011 - T60, L32
        2013 - T68, L?

        Posterior Fusion Sept 2014 -- T3 - L3
        Post - op curve ~35


        Comment


        • #5
          Sorry about the latest news, this must be a very scary time for you.


          Hugs,

          celia

          Canadian eh
          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

          Comment


          • #6
            Originally posted by Celia Vogel
            Sorry about the latest news, this must be a very scary time for you.


            Hugs,

            celia
            Suprisingly... I'm ok. Though I was expecting what's happening now to happen much later on in my life... oh well. It's the waiting to see the neurosurgeon that's worse than knowing about the tumor(s)...
            Last edited by green m&m; 05-18-2006, 11:27 PM.
            30 something y.o.

            2003 - T45, L???
            2005 - T50, L31
            bunch of measurements between...

            2011 - T60, L32
            2013 - T68, L?

            Posterior Fusion Sept 2014 -- T3 - L3
            Post - op curve ~35


            Comment


            • #7
              The findings of my femur turned out to be a non ossifying fibroma. basically a tumor that is benign and resolves itself over time. I have not gone back to the orthopedic oncologist since it was diagnosed 2 or 3 years ago, but he said it was ok as long as it didnt hurt for more than 24 hours. I might go back once for x rays just to make sure that it has not changed, but that will be it. It has never given me problems and if it were not for my knee problems I probably still would not know about it.
              Good luck with the oncologist. I know that the waiting is the hardest. When you talk about removing it, are you talking about the kidney or just the tumor? Hope all turns out well.
              Mandy

              Comment


              • #8
                Hopefully, if they want to remove the tumor, the kidney won't be touched. On the MRIs, the tumor looks pretty well circumscribed and doesn't look like it's growing into anything. Maybe except in to the spinal canal which isn't too unusual for a nerve sheath tumor.
                30 something y.o.

                2003 - T45, L???
                2005 - T50, L31
                bunch of measurements between...

                2011 - T60, L32
                2013 - T68, L?

                Posterior Fusion Sept 2014 -- T3 - L3
                Post - op curve ~35


                Comment


                • #9
                  Best of luck Green M&M - hang in there and keep us all posted with what you learn about all of this.

                  Comment


                  • #10
                    thats good that it doesnt look like it is growing into anything. i would imagine that it would be normal for it to grow into the spinal canal a bit on a nerve sheath tumor, since they all originate from the spine. let us know how it goes.
                    mandy

                    Comment


                    • #11
                      Thanks ladies :-). It's nice to be able to 'vent' a little.

                      At the moment, I'm trying to decide wether or not if I should wait to see the neurosurgeon to ask the radiolog group to re-read my scans from 5/16 because frankly, the written report is so poorly done and the radiologist that read it missed a couple of things and compeletly misread what she did...

                      I could be wrong but my stint of working with crossectional medical data sets for over a year tells me otherwise. (...and the previous scans of the same area with differnt imaging modality read by other radiologist(s))
                      30 something y.o.

                      2003 - T45, L???
                      2005 - T50, L31
                      bunch of measurements between...

                      2011 - T60, L32
                      2013 - T68, L?

                      Posterior Fusion Sept 2014 -- T3 - L3
                      Post - op curve ~35


                      Comment


                      • #12
                        Well...

                        I saw the neurosurgeon on Tuesday and I am now more frustrated than I was before I saw him.

                        He just wants to wait and see which I am not comfortable doing. I'm actually OK watching my tumors on my aortic arch and my cervical spinal cord since I am asymtomatic from thow two tumors, but am concerned about the tumor behind my left kidney. It is large enough that I have to question how 'innocent' it is. Not to mention the fact that I feel like my rib hump, the apex of which is basically where my tumor is looks more prominant than before. Adding to to that the new back discomfort I've been having on the opposite side of the spine where the tumor is.... well all in all, waiting till September to see if there are any changes is not making me comfortable. I was actually afraid of the neurosurgeon not really paying attention to the tumor behind the kidney because it's not 'neurological' enough even though all my tumors are on the nerve and are from nerve cells.

                        I'll see my neurologist in two weeks and hopefully he'll listen to me more than the neurosurgeon did. More waiting!!! Joy.

                        I'm definatly going back to see my scoli doc earlier than the planned one yr follow up. If anything else, my sleep quality has been affected by the back discomfort and most other things like sitting/walking/ect has been more annoying lately.
                        30 something y.o.

                        2003 - T45, L???
                        2005 - T50, L31
                        bunch of measurements between...

                        2011 - T60, L32
                        2013 - T68, L?

                        Posterior Fusion Sept 2014 -- T3 - L3
                        Post - op curve ~35


                        Comment

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