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  • New and want advice of L5 fusions!

    Hello
    I am a 28 year old mother of 2 and I was fused T4 to L5 July 29th so about 5 weeks post op.
    I am looking for advice and or thoughts on where I CHOSE to end my fusion.
    I had a discogram performed before my fusion so that there was no guessing about the condition of L4, L5 and L5S1. 4 and 5 were completely gone while L5S1 was in perfect condition. My surgeon said that it was totally up to me, explained that there's always a risk that in 5 to 10 years I could have to go back and extend the fusion. I chose to keep as much flexibility as I can for as long as I can.
    So...I am now 5 weeks out and from what I have found and read thus far I am wondering if I made the right decision. I feel that I did however I am hearing more people saying that they chose to go all the way. Maybe I have too much faith in that last remaining disc? Anyone else stop at L5 and happy? Or, has anyone had to go in and extend to L5S1? If so how'd that go??

    Sorry so lengthy, 5 weeks and now reading on this site and panicking! !! Thank you so much for any advice! !
    Ronee
    Ronee

    Fused July 29th 2014 T4 to L5

  • #2
    Just wanted to say Hi and welcome to the forum.....

    Others should chime in 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


    • #3
      Thank you Ed!!! And thanks for the referral! Your the best!
      Ronee

      Fused July 29th 2014 T4 to L5

      Comment


      • #4
        Hi Ronee...

        Welcome, and don't take this the wrong way, but my advice would be to go away from here for awhile. You're still in what would be considered the early recovery period from a big spine surgery. Now is not the time to beat yourself up over potentially making a bad decision. Get on with your life for now, and if you start having new symptoms, cross that bridge when you come to it.

        Good 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


        • #5
          Yes I am still very early and I see what you mean however, i am curious. Nothing I can do now at this point and all and all I feel pretty good. In fact I don't really have any complaints, little stiff and just a little sore here and there.

          Than you for replying.
          Ronee
          Ronee

          Fused July 29th 2014 T4 to L5

          Comment


          • #6
            It may never come to pass that you need that extension. But I wonder why a surgeon would leave an important decision like that to the patient. He would know better than anybody what your chances are of needing the extension. So don't beat yourself up, because you made the best decision you could at the time. And I doubt the surgeon would have agreed to stop at L5 if he thought it was the wrong thing to do. Enjoy that little bit extra flexibility! You need it more now than at any other time of your life because you have young children. Take care and good luck with the remainder of your recovery.
            Surgery March 3, 2009 at almost 58, now 63.
            Dr. Askin, Brisbane, Australia
            T4-Pelvis, Posterior only
            Osteotomies and Laminectomies
            Was 68 degrees, now 22 and pain free

            Comment


            • #7
              Ronee it seems that you made a good choice for now.you say that you are healing well.It may be many years or maybe never, that the next lower level will need attention.you have a young family and need to move around with them. I would say stay active and do proper lifting and things that keep a spine healthy.thus doing everything you can to eliminate the need for more surgery.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


              • #8
                Jackie & Jennifer,
                Thank you both for replying! Yes! Yes! I have a 7 year old and a 3 year old daughter and they run me ragged! Even with the brace on they don't seem to think mommy should slow down. I am constantly reminding them! It makes me laugh though because mommy's are super hero's in thier little eyes! Thank you again and have a great weekend!!!
                Ronee
                Ronee

                Fused July 29th 2014 T4 to L5

                Comment


                • #9
                  Hi there,

                  It sounds like you are doing really well for 5 weeks! I know what it is like trying this recovery with young kids at home. I can't tell you how much reading aloud I did to my kids because for awhile it was about all I could manage with them.

                  I agree with Linda, stay off this site and go enjoy your kids and lead a full life. What-if's will drive you crazy, and you don't have time for that. I don't think your doctor would have given you the choice if he thought it was a bad one. Susie*Bee is a number of years post-op a fusion to L5 I believe (in her 50's) and she reports doing great with it. I would take the extra flexibility if given the choice too!

                  Take care and please try not to worry about your decision. It sounds like you're doing great.
                  Gayle, age 50
                  Oct 2010 fusion T8-sacrum w/ pelvic fixation
                  Feb 2012 lumbar revision for broken rods @ L2-3-4
                  Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                  mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                  2010 VBS Dr Luhmann Shriners St Louis
                  2017 curves stable/skeletely mature

                  also mom of Torrey, 12 y/o son, 16* T, stable

                  Comment


                  • #10
                    Gayle,
                    Thank you for the encouraging words! We have been reading lots and they love my evening walks! The 7 year old makes it the full mile while daddy and the 3 year old bail on us, even the poor dog is tuckered!

                    Your right, time with them is the most important thing to me right now, the fear of extension will have to take a back seat for a bit, Halloween costumes is our next adventure! Have a great weekend!! Thanks again Gayle!
                    Ronee

                    Fused July 29th 2014 T4 to L5

                    Comment


                    • #11
                      Advice on l-5 fusion

                      Originally posted by Scoligal85 View Post
                      Hello
                      I am a 28 year old mother of 2 and I was fused T4 to L5 July 29th so about 5 weeks post op.
                      I am looking for advice and or thoughts on where I CHOSE to end my fusion.
                      I had a discogram performed before my fusion so that there was no guessing about the condition of L4, L5 and L5S1. 4 and 5 were completely gone while L5S1 was in perfect condition. My surgeon said that it was totally up to me, explained that there's always a risk that in 5 to 10 years I could have to go back and extend the fusion. I chose to keep as much flexibility as I can for as long as I can.
                      So...I am now 5 weeks out and from what I have found and read thus far I am wondering if I made the right decision. I feel that I did however I am hearing more people saying that they chose to go all the way. Maybe I have too much faith in that last remaining disc? Anyone else stop at L5 and happy? Or, has anyone had to go in and extend to L5S1? If so how'd that go??

                      Sorry so lengthy, 5 weeks and now reading on this site and panicking! !! Thank you so much for any advice! !
                      Ronee
                      I had a fusion at L4-5 in May of 2013 - I had spondylolisthesis where a vertebra slipped down and sideways so they fused that in place and removed the disc and inserted spacer and took out a facet joint and a couple of other things to relieve the nerve as I had spinal stenosis and sciatica etc. I am happy I did that but have to say I was not asked anything. The doctor made the decision to do just that and I have severe lumbar scoliosis but he just chose to do the L4-5. It was microsurgery. My curve starts right above that area. I don't worry about whether I made a wrong decision to JUST do that area but I am very aware of not wanting to do further damage so I am asking my husband to pick things up and I use a reacher which is invaluable and I've tried to learn to do squats but fail miserably because I have bad ankles but I'm getting better as my thighs get stronger. But if you could successfully squat instead of bend right over that would help tremendously I think. Other than that in bed I still use the log roll on and off the bed, and will continue that the rest of my life as that keeps the spine straight. And then I just hope
                      that no further damage will occur while I'm aware that it might. But I wouldn't worry about the choice you made now. I have never had anybody tell me I should have done more. Other than another spine doctor who was critical of my doctor asking me why he didn't do fusion for the scoliosis. I didn't think too much about that either because there is nothing I could do and in any case I'm doing well with my back. No pain. Oh, and have u thought that if you'd done the lower vertebrae you'd have two to worry about, and the fact your disc was just fine there?
                      Tabbits

                      Comment


                      • #12
                        Renee, I am sure that you made the right decision. Regrets and second guessing...and I am the Queen of both right now are non-productive. Sounds like your surgery was very successful. So, now is the time to enjoy your family and try to keep up with your active kids. Family, fun, life, and continued healing should be on your agenda right now. So, maybe some day you will need an extension of your fusion.....or maybe not. My crystal ball is being polished right now or I could give you the answer.

                        Each of us are our worst enemy. I wish you the best and welcome!

                        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


                        • #13
                          Hi Ronee! I cannot help you with stopping at L5 nor with relating to your young age, but thought I would mention a couple of other things. First, congratulations on your fusion and I hope you are healing well and feeling better each passing day! Being a mother of two would make for a very active life once you are able to really get active again!

                          When I opted for my surgery, which my surgeon left up to me to decide upon (he gave me the pros and cons of both scenarios- surgery vs. no surgery, and the caveats), he said we could stop at L4 or go all the way. He said if we stopped at L4 I would retain some flexibility but would have the possibility of needing further surgery down the road. He said he felt my chance of that was about 20%. So I opted for taking my chances. That being said, I do have to be a little more careful of not putting too much stress on repetitive movements with those vertebrae, but bend from the hip instead. I have a check up next week -- haven't been for 2 years -- but at my last one everything looked perfect. My surgery was over 7 years ago. So far so good. I hope to continue to beat the odds. I wish you the best with yours. I do not know what it feels like to be fused "all the way" so I can't compare, but I like myself now that I've recovered. (I was a slow-recovery person...) All the best to you and your family -- and may you have a speedy recovery and no problems with your lower vertebrae!
                          71 and plugging along... but having some problems
                          2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                          5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                          Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                          Corrected to 15°
                          CMT (type 2) DX in 2014, progressing
                          10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                          Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                          Comment


                          • #14
                            You all absolutely made my night by posting today! I am a hairdresser and attempted a color this evening and it was uncomfortable so that saddened me. Ironically it's not my lower back that gives me trouble "as it was before surgery" it's my upper, right between the shoulder blade area and to the right. This is also the side my rib hump was on and it's my dominant side as well. The physical therapist and surgeon a sure me it's the muscles not wanting to work in thier new spot but of course I worry. I WORRY all the time it seems. And....I turn 29 tomorrow! Yes I know it's not old but I feel awful old and tired! All of that being said I wasn't in the best of spirits today and hearing from all of you brightened me up.

                            I too have spacers at L4 and 5 and I sound crazy but when I touch my lower back it feels foreign to me? Surly I can't feel it right? And up high on the right side next to my T4 area and between the scapula I feel something hard and foreign, therapist says alot of that's muscle however she thinks the muscle memory is so strong on the side where the rib hump was it may be pushing the " she said the name i don't remember " tiny bone that comes off the vertebrae on both sides up? The therapist only works on my shoulders and hamstrings as I am now 2 inches taller and my legs just don't work right! Thier so so so tight!! I looked like Bambi when he learns to walk at first!!
                            Ronee

                            Fused July 29th 2014 T4 to L5

                            Comment


                            • #15
                              Deep tissue massage

                              Ever since being fused, my thoracic area has felt tight and uncomfortable. I have seen it referred to on this site as the "bear claw" feeling. Many times I also get a dull ache there, and also a sensation of "fatigue" in my upper back. The only thing that helps is laying down or taking medication, which none of us like to do. I have had a hardware removal, but when I still had the metal in, it felt very uncomfortable in my upper back, and it also caused a burning pain. After I had the metal out I never had the burning pain again.

                              Several years ago, after the hardware removal surgery, I did have deep tissue massage from a physical therapist. This did help to loosen things up, even though it can be a painful treatment. I tried to get it done a few years ago, but now I have so much scar tissue that it didn't work. I bet the deep tissue massage might work well on you, though.

                              Best of luck to you.
                              1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
                              2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
                              3rd surgery: Hardware removal 1997, but still pain for 30 years.
                              4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
                              I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

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