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Thread: Crying, Need Help ASAP

  1. #1
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Unhappy Crying, Need Help ASAP

    So scared Im having Nightmares! On 10/19 & 20th in 2010 I had a double 80-degree curve (1 was a little bigger than the other) straightened down to 15 and 20 degrees (bones did not want to budge) with 38 screws, 16 fusions, many laminectomies, Harrington rods, & 2 cross links holding rods. This was from T4 down to S1. Surgery was with a good talking Dr. who I originally saw for a pain pump, but he talked me into this huge surgery saying he could fix my falling down, pain, and hump instead! This doctor no longer is allowed to practice in CA.

    I almost died 4x with infection (wound vac for a month sucking it out) and I am still on antibiotics. My rods are now bent to about 50 degree+ curving out my back so that some of the hardware pushes the skin out into bumps, partly due to loose screws. I had to stop using the hard shell brace as it bled where each screw pressed out. X-rays and a CT locally were sent to UCSF (SAN FRAN) a DR. HU (anyone here of her?). She told me she will have to take all the hardware out and put new in plus add 2 more levels to Thoracic, plus a bolt (because one hole is too big for a screw) in front (through hysterectomy scar into Sacrum). I have up to 10 loose screws, 4 on top could hit a disc soon. I was also told the CT shows a couple of screws were changed during the initial surgery. I dont know how that could be seen on the films. I may still, after 15 months, have the infection, although Im on antibiotics as precaution, but she will have it checked out.

    UCSF is over 8 hrs. from me & I dont know if we can make the drive. Were also loosing our home; had to pay for caregivers & my husband has no place to stay in San Francisco plus he needs a couple of surgeries himself, so he wont be able to care for me this time as he did after the first surgery. 1st surgery was a horror and the people we got to help were pretty expensive and lazy. I fell several times thinking I could walk. I have no idea what we are going to do this time since we dont even know if well have a home. There also is no family either. We were debating on possibly moving to another state like Florida before surgery to get established in a small condo. If we go up to UCSF now our house may be sold to foreclosure before we could get back in a few months (operation plus rehab facility until I can travel), husband renting a room or something.

    QUESTION: We were considering a move to FL but know of any great doctors for revision surgery even after searching this forum. Also I heard FL does not give out pain meds. Is this true? Many doctors told me that I have to be on pain meds the rest of my life. I am currently on, Opana long term & Hydromorphone HCL, or Oxymorphone HCL as breakthrough daily, Xanax or valium, and liquid morphine by mouth at night along with a sleeping pill if needed. I also found out that I now might have Rheumatoid Arthritis. I need suggestions; can people write directly to me? I hope everyone gets better.
    ALSO: What questions should I ask the doctor for a revision surgery?

    ReneeTina

  2. #2
    Join Date
    Mar 2010
    Posts
    2,755
    Welcome, ReneeTina.

    I don't even know where to begin, as it really sounds like you are in a bad position. Are you and husband on disability or have medicare or some other reliable insurance that will go with you wherever you go? I can't believe that all doctors in Florida do not prescribe pain meds. I've heard of at least one or two very good doctors there. I would suggest finding an SRS doctor in the state where you would like to move.

    It also sounds like you have very good grounds for a very large lawsuit. That may help with your financial woes. It might not save your current house, but it may get you into a new one when you move.

    You had very large curves that did sound like it was surgically necessary, but I'm not a doctor. I saw a doctor that wanted to put a pain pump in my spine as well, but I'd never heard of that for scoliosis pain. He also told me I would be on narcotics the rest of my life. He moved and now I need to find a new anesthesiologist/pain specialist. I have not had surgery, but from what I've learned here, Harrington rods are very seldom used anymore. So that makes me wonder why he used them. The fact that your "fusion" is not holding, tells me, in my unprofessional opinion, that you are not fused and were depending solely on the rods to hold you up.

    As far as I know, the best places to have surgery are CA, NY, Twin Cities Spine Center in Minneapolis, MN, and Dr. Lenke in St. Louis, Missouri. Linda Racine, the forum moderator, works with a group of spine surgeons in California. I hope she sees your post and can direct you as it sounds like you need help ASAP!

    I hope that I have been helpful in some small way and I wish you the very best. I'm so sorry you've had to go through this.

    Take Care,
    Rohrer01

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi...

    I work for Dr. Hu, and have also had her as a surgeon on my own long fusion surgery. She's definitely an excellent surgeon. If you want to stay closer to home, I would recommend Dr. Sam Bederman at UC Irvine or Dr. Michael Daubs, who will start at UCLA in March.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  4. #4
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    I am so sorry you are going through all of this! I can't answer most of your questions, but I will just say that it seems like people usually get home faster than a few months. More like a couple of weeks--even with revision surgeries. I hope that can work out for you and will help with the house situation. Your doctor/hospital should set you up with a walker and other equipment to help avoid falls after the revision. Best wishes for a successful revision!

    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.

  5. #5
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    This is so incredibly sad. I am very sorry for all that you are going through. I can't really give any help other than to say Linda's suggestion makes a lot of sense and all of those doctors have been mentioned here many times as being very good. I hope you can get some relief and assistance for your back. Best wishes. 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.

  6. #6
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope you are getting to see a doctor or two in CA
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #7
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Crying, Need Help ASAP

    I want to thank everyone for responding. Reneetina
    60 yrs old did scuba,lift & work. Miss all.
    1st t surgery,28 years. L4/5 fusion
    2nd surgery 10-19; went from 2 80%+ curves to 20% + 30%.T4-S1,38 screws (loose & angled wrong), 15 fusions many fusions did not take,& horrific had/have(?) infection.
    Lot of pain.

  8. #8
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Crying, Need Help ASAP

    Going to see Dr. Bederman this coming Wed. Hope it brings good news. Little frightened.
    Reneetina
    60 yrs old did scuba,lift & work. Miss all.
    1st t surgery,28 years. L4/5 fusion
    2nd surgery 10-19; went from 2 80%+ curves to 20% + 30%.T4-S1,38 screws (loose & angled wrong), 15 fusions many fusions did not take,& horrific had/have(?) infection.
    Lot of pain.

  9. #9
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Crying, Need Help ASAP

    Thanks Melissa for Dr Bederman. 2 hrs! 3 options so I recorded it. I know I said I'm going to have 1 thread and stopping rest. Hopefully by MON. Will have what Dr. B said on that thread. Suggestions on what to name it so there will be no others? 3 options from nothing til 70 yrs old to breaking entire spine. Thanks all Reneetina
    60 yrs old did scuba,lift & work. Miss all.
    1st t surgery,28 years. L4/5 fusion
    2nd surgery 10-19; went from 2 80%+ curves to 20% + 30%.T4-S1,38 screws (loose & angled wrong), 15 fusions many fusions did not take,& horrific had/have(?) infection.
    Lot of pain.

  10. #10
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Crying, Need Help ASAP

    By Mon will let everyone know what Dr Bederman said yesterday. I recorded now will listen & write. If you can give me until MON I will have a new 1 thread (suggestions for good name?) email private if so.Talked about from easy to 3 separate operations! Excuse any errors I may have as I'm not a good typist. Thanks Reneetina
    60 yrs old did scuba,lift & work. Miss all.
    1st t surgery,28 years. L4/5 fusion
    2nd surgery 10-19; went from 2 80%+ curves to 20% + 30%.T4-S1,38 screws (loose & angled wrong), 15 fusions many fusions did not take,& horrific had/have(?) infection.
    Lot of pain.

  11. #11
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by Reneetina View Post
    If you can give me until MON I will have a new 1 thread (suggestions for good name?) email private if so.
    Weeeeeeeeeeeelllllllllllllllllllll..... ummmmmm....... urrrrrrrrrrrrr...

    Okay. You have until Monday. But no later. :-)
    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."

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by Pooka1 View Post
    Weeeeeeeeeeeelllllllllllllllllllll..... ummmmmm....... urrrrrrrrrrrrr...

    Okay. You have until Monday. But no later. :-)
    And by 6:00 Greenwich Mean Time. Please convert that to your time zone. :-)
    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."

  13. #13
    Join Date
    Jan 2012
    Location
    Laguna Woods, Irvine, CA
    Posts
    42

    Crying need help asap is closed!

    HI ALL: Please use AFter Extensive Surgery until I get my Brand New 1x thread started. My arthritis has hindered me in finishing it in time. But at least there will be only 1 now. saw Dr Bederman & will tell you all about it. Very confused he gave me 3 options from good to very scary.Reneetina
    60 yrs old did scuba,lift & work. Miss all.
    1st t surgery,28 years. L4/5 fusion
    2nd surgery 10-19; went from 2 80%+ curves to 20% + 30%.T4-S1,38 screws (loose & angled wrong), 15 fusions many fusions did not take,& horrific had/have(?) infection.
    Lot of pain.

  14. #14
    Join Date
    Mar 2011
    Location
    Tallahassee, Fl.
    Posts
    33

    What now?

    How is everything now? Have you decided what you will do? I'm sorry for all the suffering you have endured and continue to endure. My son has surgery scheduled with Dr. Nathan Lebwohl in Miami June 14th. It is scary. Let us know how you are. ;o)

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