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Thread: Is the 3rd Time a Charm?

  1. #1
    Join Date
    Apr 2004
    Location
    Northeast PA
    Posts
    3

    Unhappy Is the 3rd Time a Charm?

    Hello to everyone who has my same problem! I have been dealing with scoli since I was 10 years old. I had to wear a brace most of the day from age 10 until 15 (I am now 23 years old). As I got older, I decided that surgery was the best way to put an end to the progression of the curve. I thought it was the most logical thing to do because I was embarassed of my rib hump, and I didn't want any complications when I decided to have a child in the future.

    When I had the surgery in December of 2002, the doctor decided to do a minimally invasive surgery that only left a scar around my right wing on my back. Surgery went great, but it was painful. On the day I was supposed to go home, one last x-ray read that the wires they used in my back and the fusion did not work and had unattached themselves from my vertebrae. That was the most horrible news. The next morning, I went in for emergency surgery. The doctor cut straight down my back, removed 5 tips of my ribs, fused my bones together, inserted two titanium rods and found that I had developed degenerative arthritis that wore away much of the padding between bones. For the next few months, I had the most severe aching pain I could ever imagine. I was on morphine for 3 months, along with other meds. Physical therapy was 3-4 times a week, but I still was in pain.

    Now, I'm thinking about revision surgery because I have pain and discomfort constantly. I only take vioxx now, but it doesn't always stop the muscle spasms that cause my left leg to stop functioning. Also, at the top of my back where the tips of the rods end, they REALLY stick out. Before my surgery, I was embarassed to let anyone see my rib hump, now I have to worry about two things pertruding from my back. What should I do?

    Someone please offer advice. Whether it be legal or personal advice about a revision.

    Sincerely,
    Lynn1980

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Lynn...

    My advice would be to find a good scolioisis specialist who has a lot of experience treating patients with prior fusions. If you let us know where you live, maybe someone can recommend the closest doctor.

    Regards,
    Linda

  3. #3
    Join Date
    Apr 2004
    Location
    Northeast PA
    Posts
    3
    I live in Northeasern Pennsylvania. I was wondering if the rods stick out of a lot of people's backs? The protruding rods make it painful when I sit down and lean my back against something.

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Lynn...

    How much the rods stick out depends on the patient's anatomy. I have a friend whose rod sticks out a lot at the top. I think the thinner you are, the more likely you are to have protruding implants.

    I think there are a lot of good surgeons in PA. You might try one of these:

    Todd Albert, Philadelphia
    Richard Balderston, Philadelphia
    David Clement, Philadelphia
    William Donaldson III, Pittsburgh

    All four surgeons were fellowship trained with excellent surgeons.

    Good luck!!

    Regards,
    Linda

  5. #5
    Join Date
    Sep 2003
    Posts
    19

    Rods

    Hello, yes, my rods stick out in my back. I was 13 when I had spinal fusion, with two rods placed in my back. I am now 23 and the lower part of one of them sticks out. It hurts when I sit against hard-backed chairs or sit for a period of a long time. My lower crossbar also broke...the one that connected to both rods. In another post, someone said that they experience lower back pain and this might be due to the lower back taking all the pressure that the upper back can't handle? I think someone said that in a reply. If so, I must be experiencing the same thing. Cuz my lower back hurts and I have trouble sitting upright. Does anyone just wish they were "normal?" At times I do b/c it's just something one always has to worry aobut. The back is a delicate, scary thing. I always get scared of being paralyzed or something like that. =( Sorry for the random post. People may reply to any part as they wish. =)

  6. #6
    Join Date
    Apr 2004
    Location
    Northeast PA
    Posts
    3

    Best Doctor: Re-Re-Revision Surgery?

    LindaRacine:

    I have one last question: Who do you think is the best doctor in the entire US for revision surgery? I know you have hearde a lot of great stories, as well as bad stories about revision surgery. Also, who is the best for the East Coast? Now, the pain is getting worse and I'm willing to wait for as long as it takes for an appointment. I truly think there is something wrong with by back, due to the surgeries. I've learned to deal with the pain the best I can, but I can't stand it interfering with my daily activity. Before the surgery, I NEVER had this pain. Surgeries are supposed to benefit patients, not hurt them.

    Lynn1980


    Julie:

    Thanks for your input! Finally I hear directly from someone that has the same problems. About the lower back pain being cause from supporting the upper back, I just heard that recently. It's good to know that wasn't just an excuse for the lack of time to answer the question from the doctor. Another thing you acknowledged about being "normal"... I know exactly what you mean. I often find myself looking at other people's backs to see how "common" scoliosis really is. I'm actually embarrassed to tell people what my scars are really from. It would be nice to someday wake up and not have to worry about being able to do certain things. I was told that my life would be great after surgery, with no restrictions. The doctor said the only thing I wouldn't be able to do is gymnastics... which I wasn't planning on anyway. I feel like that was all a lie. I can't run without the bars in my back feeling like they're rubbing against my spine (it's really painful), I can't lay flat on a floor unless I have 2 pillows under my upper back and head, and I can't even swing a golf club. I don't want to be sedentary, but sometimes it just feels better when I just don't move and a heating pad on the painful area. I'm usually very busy during my days without a chance to rest, so I'm sure that does not help to reduce the pain. Those rods are a huge problem on my end too. They hurt me on a strait backed chair, but they also hurt against the back of a couch if I'm sitting for an hour. I'm always fidgeting from it. Well, thank you for all your input and making me realize that my symptoms are not rarities.
    Last edited by Lynn1980; 05-22-2004 at 02:46 PM.

  7. #7
    Join Date
    Sep 2003
    Posts
    19
    No, Lynn, your symptoms are NOT rarities. =) I am so thankful for this forum. It has impacted me greatly to know that other people are going thru what I have gone thru or might go thru in the future. It is all so scary, but this forum/site offers somewhat of a support system which is wonderful. Hey Lynn, I was wondering how old you were? Cuz it says 1980, and that is the year I was born as well.My middle name is Lynn too. =) Hope you are having a wonderful day free of pain!!

    -Julie

  8. #8
    Join Date
    May 2004
    Location
    Florida
    Posts
    13

    Best surgeons for revisions

    Dear Lynn1980: I have only met with this Doctor once, but if I were in your shoes, I'd consider seeing him. His name is Dr. Oheneba Boachie-Adjei. He is at The Hospital for Special Surgery in New York. Insurance is a problem with him...and he doesn't discount...and yes, he is expensive. I saw him in June 2003. If I can't find anyone in Florida to do my surgery...which will be extensive...I am fairly sure he is the man I would choose. This will be my third time around too. But I am 57. I feel badly that you have had to go through so much so early in life. My first was at 13...6 months in a full body cast, 6 months in a walking cast...then 1 year in a brace. Repeat that at age 34. They keep learning new and better things...but they sure don't know it all yet. You are extremely wise to be looking for the best surgeon. Our problems are not ordinary...we should not settle for ordinary surgeons. Good luck.
    ALSO: If anyone can help me find that "extraordinary" surgeon in Florida, I sure would appreciate it.

  9. #9
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Lynn...

    I don't have a clue who the best surgeon in the U.S. would be. I can tell you that the doctors whose names I hear the most are:

    Oheneba Boachie, New York
    Frank Rand, Boston
    Keith Bridwell, St. Louis
    Mike LaGrone, Amarillo
    David Bradford, Serena Hu, Sigurd Berven; San Francisco

    I think any scoliosis specialist who was fellowship trained in Minnesota, St. Louis, or San Francisco is probably a good bet.

    Kathi, Grady McBride in Orlando was trained in Minnesota, so he might be worth a look. Also, Harry Shufflebarger in Miami definitely has good training, but I've gotten conflicting information about whether he treats adults.

    Regards,
    Linda

  10. #10
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    My middle name is LYNN too
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

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