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Thread: kyphosis surgery (with Dr.Boachie) succesful, two months post-op terrific (long post)

  1. #1
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    kyphosis surgery (with Dr.Boachie) succesful, two months post-op terrific (long post)

    Dear All-

    First of all, my sincere apologies for disappearing since my daughter's surgery at HSS with Dr. Boachie on June 13th. {Thank you Lynn for letting everyone know that the surgery went fine.}

    I have been meaning to post for quite a while but needed some distance from the whole experience to be able to express myself calmly. Despite all the mental (and other) preparation (thanks to terrific advice from folks on this board, particularly Lynn and Susanna), the whole process unnerved me more than anything else that I have experienced in my life. But I am together now and ready to spill the beans...

    As some of you might remember, my daughter had congenital kyphosis (because of L2-L3 being fused since birth), and in December 2006, Dr. Boachie recommended a surgical revision for a variety of reasons. This is the scoop on the surgery and the post-op stuff--

    The morning of the surgery my daughter was quite chipper, and asked that the surgical team let her see the operating room and the equipment before giving her anesthesia. And her very well-natured anesthetist, Dr. Urban, agreed to her request. Later he told me that she asked questions right up to the second she fell asleep.

    The surgery took about 4 hours (the longest four hours of my life). Right after the surgery Dr. Boachie (the surgeon) and Dr. Urban (the anesthetist) came out to give me an update. The surgery went mostly as planned. Dr. B did change the fusion plan a bit. He fused T-12 to L4 and provided support using titanium rods; initially he had been planning on fusing L1-L5, but when he opened her up he felt that L4-L5 was more stable than what he had assessed based on the pre-op x-rays, so he left that section alone, and decided to go up one-level instead. Dr. B was a bit concerned about the placement of one of the screws during the surgery, but the post-op x-ray showed that it was in the right place. As you can imagine, I was hugely relieved.

    Hereís the part that completely caught me by surprise (I am sure my scoli board friends warned me about this, but I must have filtered out the information). I was shocked to see my daughter's condition in the recovery room. My bubbly happy confident child was in agony, and she had tears streaming down her swollen, and fairly unrecognizable, face Ė and it was unbelievably hard to see her in that state. Of course, the nurse reassured me that my daughter didnít really know what was going on because she was coming out of anesthesia but the first few hours (and at that time seemed to stretch endlessly) in the post-op room were unbelievably hard.

    The stay in the hospital itself was a fairly decent experience, with some not so great moments. The surgical fellows (don't know if that is the correct term) were absolutely terrific - particularly Dr. M Cunningham. Dr. C answered my umpteen, and probably repetitive questions, with much patience. At one point after the surgery, I expressed some concern that my daughter's mild scolioisis looked more pronounced than before (her surgery was for kyphosis). In response, he brought over the post-op x-rays to her hospital room and explained in detail what was going on (turns out that there was no reason to be concerned at that point). The pediatricians, Dr. Perlmand and Dr. Cha, were superb as well.

    The nursing experience in the hospital wasnít entirely positive until Richard - our favorite nurse - arrived on the scene three days later. He is an amazing caregiver, incredibly patient, funny, and thoughtful. (He mixed her medication with sorbet, made her laugh, and told us about all the fabulous restaurants in NYC where we could order food from.) I hope that anyone who has a surgery at HSS has the opportunity to recieve care from him.

    On the sixth day, we flew back to our home city in Upstate NY, but only after an awful travel fiasco - our JFK flight was delayed by ~ 6 hours, of which about 2 were spent sitting inside the plane on the runway!

    Once home my daughter didn't want/need any medication, and she has remained medication free since her last dose on the day she was discharged from the hospital. Dr. Boachie truly has a gentle hand and a healing touch. Once home, Richard's punchy wisdom (avoid the BLT -- bending, lifting, and twisting) helped her adjust her daily routines. As per Dr. Boachie's advice, she also starting walking immediately - between 1 and 3 miles each day, depending on how she felt. Unfortunately, she didn't stretch her legs very much (we were so focused on the walking that we forgot about the stretching part!). As a result, her hamstrings ended up being really tight (but more on this later).

    The first 8-week follow-up with Dr. Boachie went really well. He was pleased with the fusion, and showed us how the rest of her spine has already started to realign itself into a more normal position. After the first follow-up he removed bending and lifting restrictions (she is now allowed to lift only up to 20 lbs, but is not allowed to twist yet), and also recommended PT. By the time she started PT, her hamstrings were so tight that she could not easily sit on the floor. Thankfully, after about 6 PT sessions her muscles are responding quite well. She's on a regimen of about 8 exercises once/twice daily, which include torso strengthening, stretching, and some balancing exercises. Overall she seems to be doing really well (her left thigh is a tad sensitive to touch, but Dr. Cunningham explained that sometimes that sensation exists as the nerves heal.)

    So, here we are, two months + since the surgery and really, really grateful that she is doing so well. A big thank you to everyone on this listserve (starting with the moderator Linda) for being a terrific source of information and support. It would have been much, much, much harder without the scoli board.

    For anyone with questions about kyphosis sugery, about Dr. Boachie, Richard, or the Hospital for Special Surgery, I am happy to share my experience.

    Thank you everyone for your good wishes and prayers - my daughter and I greatly benefited from them.

    Warmly,

    Sam
    P.S. If anyone is going to HSS, do ask for the HSS spinal surgery prep manual BEFORE the surgery. I didn't recieve this until my last day in the hospital, when I pestered the PT crew in the hospital to give me more information on what to do once I got home with my daughter.
    Last edited by sam_newyork; 08-29-2007 at 11:36 PM.

  2. #2
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    Thanks for letting us know about your daughter's successful surgery, Sam! I thought you were pretty generous in your assessment of HSS nurses -- I dfon't think I would have survived my stay there without the private-duty nurse we hired. Anyway, I'm really happy for you and your daughter. It's amazing how quickly kids bounce back!
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  3. #3
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    One has to wonder why this hospital is ranked so high if its nursing care is so abysmal. Chris, youíre not the first member here who has expressed the same opinion based on experience.

    Chris

  4. #4
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    Hi Sam

    It's good to hear from you, I'm glad to hear everything is going so well for your daughter. I too have heard how puffy and swollen they look after surgery, but I'm sure nothing can prepare you for that moment although it's good to know that's normal and nothing to be alarmed about.

    I was wondering how long was your flight (minus the 2 hour delay!) and what did you do to prepare for it? We'll be flying home after being discharged and I'm very apprehensive about it. Our's will be a 2 hour flight. Did you go home the same day she was discharged?

    Again, so glad to hear your daughter is recovering well.
    Take care

  5. #5
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    Sam,

    Thanks for that post and I am glad that your daughter is doing so well. Just as all of you prepared me so well about giving blood (lots and lots of fluids starting days before) so have you all prepared me for the swollen face. A nurse at Shriner's told us that, as well. In fact, we are actully gearing up for the worst 48 hours of our lives. So if it is not a living hell after the surgery we will be very surprised and happy. We have been told that it is the worst pain and the worst discomfort, but that it is all temporary. This is what we are preparing for. We know it will be a little better once we are home and a lot better 3 weeks later. These are guidelines and every one is different. But I am preparing for the worst experience in our lives. Hopefully by Halloween Nicole will be feeling more like herself. By Thanksgiving, we will give thanks that Nicole is back to her old self. This is what I am mentally preparing.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  6. #6
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    Exclamation Hospital nursing care doesn't seem to measure up.

    One has to wonder why this hospital is ranked so high if its nursing care is so abysmal. Chris, youíre not the first member here who has expressed the same opinion based on experience.
    ChrisWBS

    This particular institution is better than most nowadays and they DO have the lowest infection rate AND a higher nurse/patient ratio.

    Due to managed care/insurance payments patients are sent home much sooner than when I first entered the medical profession in 1963. There used to be a mix of patients walking around balanced with those needing more intensive care. A herniorrhaphy patient stayed in hospital for 7 days!!!
    Now EVERY patient needs concentrated care post-op because they all are so sick or fresh out of major surgery.

    There are simlpy not enough nurses despite good starting salaries. Believe me, hospitals offer thousands of dollar sign on bonuses. The nurses are just too overworked and exhausted.

    That is why I always recommend some type of family paid extra nursing/attendants care(especially at night) once someone is released from the step-down unit. This can be arranged through the hospital.
    I myself had private duty nurses(practical nurses but RNs are better) for my stay at HSS. This was recommended on another scoliosis forum for anyone/in any hospital.

    MY niece had hip resurfacing done at Columbia-Presbyterian Medical Center in New York-a splendid institution where I worked for 23 years. I gave her the same advice which she ignored. The elderly patient in the next bed called for a nurse for hours because she was cold. My niece gave her her own blanket because no one responded. And SHE(my niece) just had surgery.

    This is the sad case nowadays.

    If anyone else on the board had a great nursing care experience share it with us.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  7. #7
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    I had my surgery at HSS & while there were times I had to buzz several times for a nurse late at night, all in all I felt I had very good care. I happened to like several of my nurses very much. Just my own experience, I guess......Lynne

  8. #8
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    Hi Sherie-

    We flew home the day she was discharged. I made sure she took her medication (her last dose, as it turned out) before she left for the airport, and I filled her prescription before she was discharged so we had the pain meds handy (filling out her prescription turned out to be trickier than I thought but that's another story)

    The flight itself wasn't too long (just bout an hour). The hospital let me borrow pillows to prop around her seat in the airplane and the paramedics in the ambulance that we rode from the hospital to the airport gave us a blanket so she could lie down in the airport, if necessary.

    I had requested front row seats in jetblue so she had plenty of leg room, and I made sure she took short walks before boarding and also whenever the crew would let her walk in the plane. I should have bought one of those neck support pillows for her but I didn't think about this in advance - so I ended up having to support her head with my shoulder and arms for a couple of hours. It wouldn't have been a big deal if the flight hadn't been delayed. By the time we got off the flight, I was extremely sore.

    Contrary to the general boarding preferences, it is not a good idea to board the plane before everyone else because you end up sitting in the same position for a longer time. (I think someone on this board had smartly advised me on this issue.) As long as you guys have a chance to walk around before, during, and after the flight, everything should go smoothly. Oh, and don't forget to pack some snacks and water for the flight.

    Overall, everyone at the airport was extremely helpful - e.g. they let her go through a separate security check (which was way quicker), and the jetblue ground crew helped carry our stuff around (I was traveling alone with her), and even escorted her to the bathroom at one point!

    Like you, I was quite worried about the flight home. But for the awful delay, things would have been quite smooth.

    I will be thinking about you guys. When is the surgery?


    Karen, Chris, and others--

    I do wish I had known about the private nurse option. I would have most certainly opted for that.

    Most of the nurses did their job quite well, except for a couple of them (particularly on the night shift). On the first night post-op, for example, my daughter needed to be turned on her side, and a nurse literally yanked the sheet from underneath her back. My daughter's scream at that moment was the most horrific sound I have heard. From then on, every time a nurse came to turn my daughter, she asked them if they were going to 'yank' her! None of them did, of course!

    I should also mention that HSS seems a choice location for Hollywood movie makers, which is a huge pain for the patients. When we were there, the last of the Bourne Ultimatum series was being shot there, which meant that the crew was drilling holes (with power drills) and rigging spotlights right outside the nursing unit at about 2:00 AM in the morning! [They did eventually stop after the many complaints from the nursing supervisor and patients' caregivers, including myself.]

    To be honest, I would have been far more outraged if my daughter hadn't recieved very professional and compassionate nursing care from Richard (our favorite nurse), as well as a few other nurses. Thank goodness for the wonderful nurses in the world!

    Best,

    Sam







    Sam



    Quote Originally Posted by Sherie
    Hi Sam

    It's good to hear from you, I'm glad to hear everything is going so well for your daughter. I too have heard how puffy and swollen they look after surgery, but I'm sure nothing can prepare you for that moment although it's good to know that's normal and nothing to be alarmed about.

    I was wondering how long was your flight (minus the 2 hour delay!) and what did you do to prepare for it? We'll be flying home after being discharged and I'm very apprehensive about it. Our's will be a 2 hour flight. Did you go home the same day she was discharged?

    Again, so glad to hear your daughter is recovering well.
    Take care
    Last edited by sam_newyork; 09-02-2007 at 09:10 PM.

  9. #9
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    I can't believe they were filming a TV series in the hospital while you were there!! You never know what you're going to get in New York...the city that never sleeps....especially in the hospitals, ha-ha!

    It wasn't funny at the time, but looking back, the funniest nursing moment I had at HSS was before my private nurse showed up, when I was about 3 days post-op and I rang for an aide to help me turn over in bed. When she got there and I asked her to help me log-roll to my side, she said: "Sorry, I can't -- I have a bad back."
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  10. #10
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    Chris,

    That is so funny!!! A story you can tell over the years!!!
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  11. #11
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    Hi Sam

    Thank you for the helpful information. I'm probably stressing myself unnecessarily. My daughter's surgery is Nov. 15 and we'll be flying to St. Louis from Houston. Did you have to request an ambulance ride from the hospital to the airport? I had never even considered that would be an option.

    We'll be in the children's hospital so I hope we'll have a good experience. I can't believe anyone would just yank a sheet out like that from under your daughter, how thoughtless! I hope the nurse got a good scare from your daughter's scream.

    I'm really amazed that she was off pain meds so quickly, I pray my daughter's surgery will go so well, tell your sweet girl she's an inspiration for the rest of us.

  12. #12
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    Hi Sherie-

    I will be thinking about your daughter, and praying for her, on Nov 15th. I am sure she will do really well.

    I asked for the ambulance because I was alone with my daughter in NYC and I wasn't comfortable organizing everything on my own. Initially the hospital was reluctant to call the ambulance because they said that my insurance wouldn't cover for it. (They suggested that I hire a private cab instead.) Still I pestered them enough that they called my insurance company - and it turned out that the ambulance ride to the hospital was covered by my insurance.

    It turned out to be a really good idea, at least for us. There were two women paramedics (one driver and one attendant) in the ambulance, and they were terrific. They stayed with my daughter while I checked-in our luggage (told her jokes and supplied her with cookies, I should add), and walked her through security all the way to the boarding gate. If I had someone else traveling with me, it may not have been as crucial to have their assistance.

    I am sure your daughter will do really well. Feel free to send me a PM if you have any other questions.

    Sam

  13. #13
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    Quote Originally Posted by Karen Ocker
    There are simlpy not enough nurses despite good starting salaries.

    If anyone else on the board had a great nursing care experience share it with us.
    Iíve been in touch with a woman who underwent two separate surgeries earlier this year at Barnes-Jewish Hospital in St. Louis. She said the nursing care she received there was first rate, and she did not have to hire a private duty nurse. Two years ago I had an epidural steroid injection at Advocate Lutheran Hospital outside Chicago (rated one of the top 100 hospitals in the nation). I was so impressed by the nursing staff and care I received for this minuscule procedure that I had hoped I could have surgery there if it ever came to it. I work in a law department of a large corporation. Weíve had budget cuts and are understaffed. There are employees here who give the max and then there are those who donít give a damn. Itís my opinion that youíre more inclined to find the latter type worker in hospitals located in the larger metropolitan areas.

    Chris

  14. #14
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    Sam

    Again thanks for the guidance, I will have my husband with me so we should be fine, probably calling a taxi would be best for us. I sent you a PM.

    Have a great day

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