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Thread: My last chance, please help! 150

  1. #1
    Join Date
    Oct 2004
    Location
    LAS VEGAS
    Posts
    5

    My last chance, please help! 150


    Hello everyone: I need a great surgeon!

    Since I was a small child of seven years old I had only two dreams in my life; one was to become a professional singer/entertainer and the other one was to have a straight back. Originally born in Greenville, South Carolina I was first placed into a Milwaukee back brace for almost six years. But my scoliosis continued to increase rapidly along with atrophy in my right hand and leg, yet I remained extremely active even learning to play the guitar, building treehouses, baseball all normal things for a boy. By the age of 11 since my father was in Vietnam I was sent to Walter Reed military hospital in Washington DC. At Walter Reed they placed me in a full-length body cast wrapping around the top of my head all the way down to my knees. This was in the days before they began using halo traction. Over the months that passed they continued to simply jack up the cast to get as much correction as possible for my spine in anticipation of a scoliosis fusion. However since there were so many soldiers returning from Vietnam with severe injuries that needed care, they decided they could not undertake the surgery, therefore the cast was removed and I was sent home in another Milwaukee back brace.

    By the age of 13 my scoliosis had progressed to approximately 78. A "S curve, with an extreme right shoulder rib hump. I was sent to Atlanta Georgia where doctor Wood Lovell performed my very first scoliosis fusion. But first I had to lay in "halo traction" for several weeks then a body cast for nine months. After the cast was removed my spine simply curved right back into the position that it was prior to the surgery. I remember when they removed the cast I actually gasped for air as my lungs were being compressed instantaneously. I looked at my father as we both were wondering why everything seemed to be for nothing. Dr. Lovell said that was all he could do and sent me home.

    Then living in Georgia I continued on through junior high school then high school chasing my dream to become a musician and professional singer/entertainer. Everybody thought I was absolutely NUTS! Here I was limping around with almost a 90 degree curve in my spine carrying a guitar case while singing in a rock and roll band, even began working on my own in local nightclubs and restaurants. Most scoliosis people are what is called "stomach breathers" for lack of a better word. In other words even with severe scoliosis I had and still have an extremely strong diaphragm, so the singing was something that was not only good for me, but I was also blessed that people enjoyed my voice. So I kept going and going until finally by the age of 17 my scoliosis had progressed to 136. I knew my parents were worried but also had resinged themselves that there was nothing more that could be done. I however felt I had to try, so I would go out to the Army base for physical therapy, then to their doctors. They of course referred me back to doctor Wood Lovell, and doctor Wood Lovell referred me to Dr. Robert Winter at the Twin cities scoliosis Center in Minneapolis, Minnesota.

    This was in 1972 and for some reason they said that the right-sided muscle atrophy and spasticity was caused by a " slight cerebral palsy." This seemed to be a little strange because cerebral palsy is a birth defect that does not progress, and I was perfectly normal at birth. Nevertheless I was supposedly at one of the best places in the world with one of the best doctors in the world and therefore it started all over again. Back into the halo traction where they performed multiple osteotomies breaking up the old fusion, then another surgery placing two Harrington rods. I was then on complete bed rest in a halo body cast for nine months. After that period of time they removed the cast and my spine was supposedly stabilized at 78. Still quite bad, but I was just happy to get on with my life and pursue my career in music. I had met a beautiful nurses aide while in the hospital and decided to strike out on my own, leaving my family home in Georgia and actually moving to Minneapolis, Minnesota. This way I could be near my doctor and the scoliosis Center, the girl and pursue my career. Everything seemed to be going great.

    By 1978 against all odds, doing very well in the music/entertainment industry as a professional singer, but then suddenly double vision in my eyes, numbness throughout my face, and a complete loss of balance. I thought I was going crazy! And no one really believed I was that could be that seriously ill with the type of busy traveling and working schedule I maintained. Moreover I did not want to believe that I was ill. Finally at last resort I went to the Mayo Clinic in Rochester, Minnesota as a suggestion by my dentist of all people. There at the Mayo Clinic they did my very first myelogram where they found that I had a hydromyelia that extended from my tailbone all the way to my brainstem. And it was this and only this that had caused my scoliosis. I was simply misdiagnosed. If the pressure created by the hydromyelia within my spinal cord had been shunted/relieved first BEFORE fusing my spine then there would have been very different outcome for my life.

    I had emergency brain surgery where they removed the back of C 1, 2 and 3 in my neck so they could shunt the hydromyelia cavity within my spinal cord. Unfortunately there were several complications including spinal meningitis where I had a fever of 105 for two weeks. And for those two weeks they did a spinal tap every day to relieve pressure. That was my alarm clock. Eight weeks later a second brain surgery to remove the plastic, infected shunt. Everything seemed to be going great until another eight weeks later when I went back on stage and my first song in front of a large crowd my left arm went completely numb and I fell off of the stage. Basically when I woke I was paralyzed from the chest down.

    By 1980 I was walking again with a walker and still continuing with my career traveling throughout the country. But then in 1989 my lumbar spine began giving me the most horrendous pain I have ever known. They went in and fused the last three remaining vertebrae in my lower spine. One year later I was doing well again living in Los Angeles, California, then suddenly the lumbar pain returned with a vengeance. Another anterior posterior lumbar surgery, where they found that one of the hooks from my rods had come loose and was actually cutting into my sciatic nerve. The surgeon there in Los Angeles was fantastic! When he completed the surgery he said "we nailed you together tight this time Frankie, you will not be needing any more surgery." That was great to hear from someone. So I continued on until we had the big earthquake when I decided to move to Las Vegas which is my home now. And I love Las Vegas but there simply is no scoliosis surgeon's hear that are qualified to take such a complicated case as myself, this is why I originally went to Texas after my mother had seen a scoliosis surgeon on a television program I believe "Good Morning America." Since 1973 there has apparently been incredible progress in treating scoliosis. I NEED HELP...

    I don't mind so much the thought of dying, but I have a 14-year-old son and I need simply to find a good surgeon that could at the least possibly place my spine back to where it was before my last HORRIBLE reconstructive surgery in Texas in 2001. The surgeon there for some reason brought my spine forward which has tilted my head extremely backwards. This means I can no longer walk with a walker and I'm always looking upward into the sky. If I lean forward to try and compensate it crushes my abdomen which makes singing almost impossible for any length of time.

    I use oxygen 24 hours a day. My oxygen levels have always been around 89 or 90% measured by pulse-ox. On two leaders of oxygen I remain stable at 97%. But my diaphragm remains strong and never until the surgery in Texas did I ever have a problem with being intubated for general Anastasia. For four months I laid on a ventilator with a tracheotomy I could make no sound whatsoever. And no one absolutely no one would ever tell me anything about a tracheotomy. I was terrified that I had lost my voice forever. It was only recently that someone told me they do have certain devices to help people talk that have a tracheotomy. I do not understand, it was like torture. But that was that then. They removed the tracheotomy when I was in the nursing home and my voice seems to be just as good as ever. I just know that I must find a GREAT scoliosis surgeon that is honest and will stay with me even if it goes to the end. After all, I still believe in miracles. Thank you to anyone who was kind enough to read my lengthy post. Please remember I am in good health I just need a good reconstrutive scoliosis surgeon, anywhere in the country. I wish everyone only the best, Frankie... Just Frankie!
    Last edited by Frankieb; 10-27-2004 at 06:23 PM.
    Frankie Bush 130% curve after multiple fusions with rods

  2. #2
    Join Date
    Aug 2004
    Location
    san diego
    Posts
    55
    I got teary eyed reading your post, Frankie. Living with scoliosis is hard, coupled with not finding the right doctor to help you. You went to the right site. You will find compassion here because we all can relate. A lot of people here are so knowledgeable coming from experience and/or research. I haven't had surgery yet at age 57 and I am still trying to find a good surgeon. We will overcome this affliction. God is good.

    Letty

  3. #3
    Join Date
    Jun 2004
    Location
    Ireland
    Posts
    35
    Hi Frankie,
    Thre are one or two people on a site that I volunteer with who have 150 degree curves.I'll ask them to drop by here and share their experience with you.Hopefully they may be able to help you and I know one is based in Usa and goes to Dr Lonstein.I'll see what I can find out for you.
    Sins

  4. #4
    Join Date
    Oct 2004
    Location
    Edmond.Ok
    Posts
    10
    Frankie,
    It sounds as if you have been through the medical nightmare machine. I can hear you. I am a 53 year old Wife, mother,crazy person and I have severe scoliosis too. I have curves of 150 -88 -50. Three curves! I don't know if I can help you. But I can talk with you and listen. I can share my experiences and tell you where I am at. I didn't want to overwhelm you at first. I have all kinds of issues and emotions tied up with scoliosis so I know you must have to. What can I do for you?

  5. #5
    Join Date
    Oct 2004
    Location
    LAS VEGAS
    Posts
    5
    Dear Amazed

    Thank you very much for your response to my post regarding my situation, I have been extremely blessed in many ways and there are many people who will never even know some of the wonderful pleasures I have had in my life. Someone suggested Dr. Lonstein, who I am very familiar with though not a great fan. Dr. Lonstein and I go back as early the 1970s where he was doing a residency I believe under Dr. Robert Winter at the Twin cities scoliosis Center in Minneapolis, Minnesota. At that time in my life I knew him and many other renowned scoliosis surgeon's well. Dr. Lonstein and I even appeared on a television program together to promote a benefit concert that I was a performing at the Guthrie theater in Minneapolis specifically for the Twin Cities Scoliosis Center. Dr. Robert Winter, Dr. Moe, Dr. David Bradford, Dr. Lonstein and many more, I KNEW THEM ALL back then very well. But times have changed and it is my understanding that they continue to make progress in treating scoliosis, even in reconstructive surgery. I was just assured that my scoliosis had been stabilized back in 1973, so I just went on with my life, not really concerning myself with someday having or even needing a completely straight spine to be happy and productive in life. And from my experience most doctors do not like to admit mistakes and they all seem to stick together for the most part, no matter what the circumstances. This again makes it difficult for me because there were so many mistakes made in my case. I am not angry nor bitter against anyone, I have actually had a very amazing life. But at 49 years old I hope to continue for a few more years, and I know that the right surgeon, where ever he or she may be will be able to help me.

    Thank you again so very much... Frankie
    Frankie Bush 130% curve after multiple fusions with rods

  6. #6
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Hi Frankie,

    First let me say, you sound like a very strong minded individual with much determination and willpower. I like your determination and respect your strength, I understand your frustration and admire your individualism. It is again something that I have discovered that most of us with severe scoliosis and a history of pain and/or surgery must have for survival.
    I rely on my own strength as an individual, just like yourself for survival and the future. I just wanted to say hello and that I understand and feel the frustration in your voice or words. We are about the same age, and my breathing too has become much more difficult and a challenge. With possible surgery the only solution at this stage, but it is not a consideration as of yet. I'm fifty-four years old and have had a full life with scoliosis and surgery. I just want to live the rest of what ever my life is, to the best of my abilities with out surgery. GOD BLESS....
    Live long and prosper!

  7. #7
    Join Date
    Dec 2008
    Posts
    3

    Liz

    Hello Franki,
    I hope you been doing well and found the surgeon you were looking for. but in case you have not or you still looking, let me suggest Dr. Boachie Onheba he is a great surgeon in NY at Hospital for Special Surgery, he has operated the most difficult cases.
    I just joined this forum since my baby daughter has been diagnosed with congenital scoliosis.
    Good look and God bless you

  8. #8
    Join Date
    Jun 2007
    Location
    DFW area of Texas
    Posts
    72
    Hi Frankie B

    Your story is heartbreaking. I believe I know the doctor you mentioned who had been on Good Morning America - name starts with an S. If that is him, his name will be on my signatures. At one time I thought he was the very best scoliosis surgeon. There sure is a lot of talk in here about the doctor in Amarillo. I wish with all my heart that you find someone who can operate and fix you the way you should have been fixed years ago. Yeah, it's kind of funny how a doctor can pretty much screw up and then just walk away. I wonder if it bothers their sleep? Please get some help!!
    Diane in Dallas
    Adult Ideopatic Scoliosis (37%) and Kyphosis (65%)
    Surgery #1 8/4/03 - Dr. Shelokov, Plano
    Surg #2 12/8/03 - Dr. Shelokov, Plano
    Surg #3 1/10/05 - Dr. Shelokov, Plano
    Surg #4 9/10/07 - Dr. Viere, Dallas
    Surg #5 1/28/08 - Dr. Viere, Dallas
    Surg #6 4/27/09 - Dr. Viere, Dallas

  9. #9
    Join Date
    Mar 2007
    Location
    Beavercreek, OH
    Posts
    2

    How are you?

    Dear Frankie:

    I was originally on this Forum because I was beginning to lose hope, but after reading your story, I got some hope in return. Thanks for telling your story. I'm a nurse (probably as a result of being in the hospital for scoliosis surgery back in 1972), and you helped me remember why I'm in this demanding profession!!

    Thanks again,

    Janet Bellware
    Last edited by Janet_Bellware; 03-05-2009 at 01:17 PM.

  10. #10
    Join Date
    Apr 2007
    Location
    Sydney
    Posts
    249
    Wow, that is one of the most amazing posts I have ever read anywhere on the internet. You must be an incredibly strong person to come through all this still swinging. I hope you find your surgeon and get the relief you need. You certainly deserve it.

    Thank you for sharing your story, you have definitely made me think more about life.

  11. #11
    Join Date
    Jun 2009
    Location
    Los angeles
    Posts
    122
    Hi!
    First of... I'm very sorry!
    second, I have 3 curves as well 70* 95* 70*. I'm 30 years old and I will have my first surgery most likely this coming Sep. My Dr. is DR. Pashman. his office is in Los Angeles, and for what I read he is pretty good. Maybe you can do some research on him or send him an email. Here is his email: espine1@aol.com
    Good Luck!!
    Pilar

  12. #12
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    This is an old thread. Just recently we were told that Frankie never did have the surgery and passed away earlier this year.
    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

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