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Thread: What a mess!

  1. #1
    Join Date
    Aug 2010
    Posts
    42

    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. #2
    Join Date
    May 2009
    Posts
    3,745
    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 at 05:03 PM.

  3. #3
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    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 Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision 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 + prayer

  4. #4
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    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

  5. #5
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    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/

  6. #6
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    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 didnít fuse. I donít 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 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  7. #7
    Join Date
    Aug 2010
    Posts
    42

    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.?

  8. #8
    Join Date
    May 2009
    Posts
    3,745
    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

  9. #9
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    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.

  10. #10
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    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 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  11. #11
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    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 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  12. #12
    Join Date
    Aug 2010
    Posts
    42
    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

  13. #13
    Join Date
    Aug 2010
    Posts
    42
    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.

  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    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."

  15. #15
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85

    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.

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