Announcement

Collapse
No announcement yet.

What a mess!

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

  • What a mess!

    Ok here I am AGAIN!
    I had original surgery in 2005 fused from t-4to l-4. and rods implanted. Pain was 10x worse since my surgeries. Went thru pain meds, stimulator and then the pump, none helped.
    Finally went to see a surgeon on the west coast of fl. who said pain was possibly caused from area in the lower back that was not fused. So after some investigation and alot of questions we had him do a second operation where i was fused rest of the way down to s-1 and had the pelvic anchors put in.
    Well that again didn't do the trick. So I went to another pain managment doctor who said they took the pump out before they should have and "he can make it work if I do it again". Guess what i have the pump in again and still no relief. We have tried numerous drugs in the pump and have even started to mix them in order to see if anything will work.
    Well in this time frame my wife and I started to notice some noise coming from my back when i layed down (the only position that gives me some relief) and made an appt. with my local ortho surgeon to get some pics. This doc is great but told me from the first time i saw him over 4 yrs. ago that he would not do any surgery's on my back. He felt the risk way outweighed the rewards.
    I just got back from his office where i was informed that i have to broken areas in my rods of the left side and one on the right with a posible fracture starting on that side also. When asked what i should do he stated that he doesn't know!
    I am in so much pain now and loosing all hope. I now am fused from T-4 to sacrum with the pelvic anchors in, and yeah can't forget the pump.
    Loosing all hope, don't know where or who to turn to. Getting depressed and bad ideas in my head. Thank God for my wife and children who up to this point have kept me going. I am only 43 yrs. old and being told that I need to go on disibility and "they will try to keep me comfortable". What kind of life is that!?
    Any and all help will be appreciated, anyone out there been here?

  • #2
    steve, please read the revision section of forum...
    there are patients who had broken rods and had them
    replaced...
    i think by now you need a top surgeon who knows revision...
    that might mean traveling...
    but you cannot afford to stay with surgeons who do not
    know what they are doing..
    how on earth can a surgeon tell you he doesn't know what
    you should do???
    i am sure broken rods must be replaced...period!
    i am so sorry for all your pain...

    jess
    Last edited by jrnyc; 02-05-2013, 04:03 PM.

    Comment


    • #3
      Steve, get yourself to a very good scoliosis revision doctor. Ask Linda Racine who is close to your location. You should not be in such pain. Get those crazy thoughts out of your head and see a doctor that can help you. You have lots of support on this forum. Please write back and let us know how you are doing.
      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


      • #4
        I can't believe they didn't check for breaks from the start. I know they aren't always visible, but yours obviously were!

        I'm no expert but treating the pain without first fully investigating the cause is not right.

        I don't blame you for feeling like giving up after all you've been through, but don't, because an experienced scolli revision surgeon (many names on this forum) can give you back your life.

        Please keep in touch and let us know how you go. Wishing you the very best.
        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


        • #5
          Don't even think about giving up. There are surgeon who are experienced in revision surgery who get excellent outcomes for those who have had broken rods. I hope Linda Racine can give you names of the best surgeons in your area. I am sorry you have had such a rough time with your surgeries.
          Karen

          Surgery-Jan. 5, 2011-Dr. Lenke
          Fusion T-4-sacrum-2 cages/5 osteotomies
          70 degree thoracolumbar corrected to 25
          Rib Hump-GONE!
          Age-60 at the time of surgery
          Now 66
          Avid Golfer & Tap Dancer
          Retired Kdgn. Teacher

          See photobucket link for:
          Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
          Before and After Picture of back 1/7/11
          tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
          http://s1119.photobucket.com/albums/k630/pottoff2/

          Comment


          • #6
            Wow Steve! You have had a run of bad luck for sure....so sorry about all of this.

            You have broken your rod or rods so it means you have a non-union and you didn’t fuse. I don’t think we have ever heard any doctor mention doing nothing in that situation and usually or always these things have to be fixed and fixed by someone who does extensive revision surgeries. You owe it to yourself your wife and kids to seek the right surgeon which could mean travelling.....

            There is a surgeon out there.

            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


            • #7
              Feeling little better

              Thanks to you all.
              Feeling a little better mentally today but not physically.
              Gonna slow down and try to find another Doc. who can do something hopefully. A few of you mentioned a Susan who can give me a list of Docs? How do I get in touch with her?
              Still don't know what is to come but I am feeling like the walls of my box are getting closer and closer. Emotionally I am shot! Just tired of hurting period. Want a Doc to say "I can help you". And not " I don't know what to do". Is that asking to much? Starting to get angry with God and he has been a big part of me still being here. Asking "why me God, scoliosis sucks"! Would do anything to be able to pick up and/or carry my 4 yr. old.
              I can feel this break on my right side. It feels like a knife is trying to poke out of my skin! The rest of the pain well its just normal for me.
              Ok getting out of my pitty pot. I have got to find someone with answers and fast because this stuff hurts.
              Anyone know someone close to the State of FL.?

              Comment


              • #8
                Steve, there are people on forum who had broken rods and had
                them replaced...i believe naptown and leahdragonfly are just two
                of the people who wrote about their experiences in the revision
                section of this forum...
                i am sure Linda Racine could advise you on best surgeons for
                such surgery...or you could just look up FLA under the resources
                section of Natl Scoliosis Foundation...you can find the surgeons
                listed geographically, by state.

                i think once you change the way you look at the situation, you will
                be able to see your way clear to a surgeon who can do the surgery for
                you....please do not let one ignorant doctor ruin things for you...
                if others can have rods replaced, why not you...???
                it must be hard to cope with now in your current state of mind,
                but others can see the answers for you....
                why not take their advice...???

                jess....& Sparky

                Comment


                • #9
                  Steve--
                  You've been through the mill and had some really tough times. I can only recommend my own doctor--Dr. Lenke in St. Louis. He only takes the tough ones--and you definitely qualify. I think it would be worth it to look into it. Check his website. The only thing is it takes a while to get in to him. But...I think special cases like yours might be considered earlier. I know it's far but you need the best. Maybe Linda has a good idea closer to home. Good luck and search out a good one! Janet
                  Janet

                  61 years old--57 for surgery

                  Diagnosed in 1965 at age of 13--no brace
                  Thoracic Curve: 96 degrees to 35 degrees
                  Lumbar Curve: 63 degrees to 5 degrees
                  Surgery with Dr. Lenke in St. Louis--March 30, 2009
                  T-2 to Pelvis, and hopefully all posterior procedure.

                  All was posterior along with 2 cages and 6 osteotomies.

                  Comment


                  • #10
                    Steve,
                    I agree with Janet. Look up Dr. Lenke in St. Louis or Dr. Boachie in New York. It's worth it to get your life back!!! Also, there is a good surgeon in Tampa. Can't remember his name right now, but you will find it if you search the forum. Don't know if he's a revision guy, though. When I scheduled with Dr. Lenke they said it would be a year, but they called me every few months and offered me to move to earlier dates.

                    Sadly, it seems like broken rods are all too common. But it is something that can be fixed!!! Do not lose hope. Google the doctors mentioned, and you will see.

                    Best,
                    Evelyn
                    age 48
                    80* thoracolumbar; 40* thoracic
                    Reduced to ~16* thoracolumbar; ~0* thoracic
                    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                    Not "confused" anymore, but don't know how to change my username.

                    Comment


                    • #11
                      The Tampa surgeon is Dr. Cronen at Tampa General. Again, don't know if he's a revision guy, but he might be a good place to start.
                      age 48
                      80* thoracolumbar; 40* thoracic
                      Reduced to ~16* thoracolumbar; ~0* thoracic
                      Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                      Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                      Not "confused" anymore, but don't know how to change my username.

                      Comment


                      • #12
                        Once again thank you!
                        Dr. Cronen in TAmpa is the one who did my last surgery where he fused me to s-1 and did the pelvic anchors. Unfortuanatly he told me then he was not comfortable with doing any revision on the upper area.
                        Going to start with the doc. in St. louis.
                        I have to admit I am pretty computer dumb and everyone keeps recommending I do the resources section of a site. Ummmm how do I get there? Is there a link from this site to get there?
                        Made a commitment that I am gonna take it easy today. Wife has off so she can watch the youngest while I try to get something done or at least make some calls.
                        Thank you all for keeping my head grounded while it is spinning out of control.
                        Steven

                        Comment


                        • #13
                          Ok now I am getting somewhere. Wife helped me out and I found the resources page. Have numbers for the 2 docs that were recommended, will call when they open. If anyone else has a great one in mind please pass him/her on to me. Gonna call as many as possible to get me info to.

                          Comment


                          • #14
                            I think you may need to be talking to the most experienced guys like Lenke and Boachie.

                            Based on other testimonials, you can have legitimate hope that this will eventually be resolved and you will have your life back. Please don't give up. Press ahead. Get the answers.

                            Good luck.
                            Sharon, mother of identical twin girls with scoliosis

                            No island of sanity.

                            Question: What do you call alternative medicine that works?
                            Answer: Medicine


                            "We are all African."

                            Comment


                            • #15
                              Scuba Steve

                              Please look into Dr. Lloyd Hey in Raleigh, NC. He performs miracles every day and you need a miracle. I really feel you are not without hope. You need a TOP scoliosis revision doctor.....anyone else is not your answer. Run, dont walk!!!!!
                              1963 Fusion T4-L2 for congenital scoliosis. It was a bone graft and not instrumentation
                              1989 to Present....Have had chronic pain. MRI's show severe neural foraminal stenosis L2-S1, rotational scoliosis lumbar spine over 40 degrees, compression of nerve roots L5-S1, Broad Based Herniations L4-L5, L5-S
                              Surgery scheduled with Dr. Bridwell on December 11, 2012
                              December 11, 2012 Had surgery with Dr. Bridwell. He fused L4-L5 with rods and screws.

                              Comment

                              Working...
                              X