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Thread: Sugery For My Angel

  1. #1
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16

    Unhappy Sugery For My Angel

    My daughter is 10 years old. She has a neuromuscular disorder called Angelman Syndrome. After going through a recent growth spurt, she also has an increasingly serious spinal curve of 83%. She has worn a brace since the curve began to develop, but it has been ineffective, as Doctors predicted. Her Orthopedic Doctor/Surgeon says surgery is now necessary, before the curve worsens.

    My daughter can not speak and has no comprehension of her condition or the prospect of surgery. She communicates only through her frequent smiles and the sparkling of her eyes.

    My wife and I are looking for recommendations for Doctors/Surgeons and Hospitals that will offer the best treatment for her. We live in Charlotte, North Carolina, but will take her where ever she will receive the best care.

    Any recommendations would be greatly welcomed.

    Thank you,
    Ron

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Hi Ron

    Sorry, my curiosity got the better of me (as it usually does) and I like to learn what different things are and if you don't ask, you never learn :-). I was wondering, what is Angleman Syndrome. It sounds familiar but I was just curious what it is. Hope you can help my curiosity and good luck with your daughter

    Alison

  3. #3
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Take a look at this website. It does a much better job than I can to explain Angelman Syndrome: [URL=http://www.angelman.org]

  4. #4
    Mary Lou Guest
    Hi Ron...

    I'm from Pennsylvania and my daughter has received excellent care from doctors at the Shriner's Hospital in Philadelphia and we just recently found an excellent doctor in Hershey PA. My first suggestion, is to ask your primary care giver for a recommendation. Never give up trying to find a doctor that is experienced in the type of surgery your daughter needs, is atleast familiar with your daughter's other health concerns and also is willing to listen to your concerns and answers your questions.

    We went to five different doctors until we finally found the one who is right for us. It is always good to have atleast a second opinion before having surgery, but I think things go so much better if you are completely comfortable with your doctor.

    Good luck,
    Mary Lou

  5. #5
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Mary Lou,

    Thank you very much, for your response and recommendation. We have heard good things about Shriner’s Hospital.
    Her current Orthopedic Doctor has a good deal of experience and is well credentialed, however an acquaintance had a bad experience with him. Understandably, this makes us uncomfortable. As well, we would like to get a second opinion and be certain that our daughter gets the best available care, whether it is in NC or somewhere else. We are hoping that People with experience, like yourself, will make recommendations.

    Ron

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Ron,

    Shriners is always a good option. I've heard many good things from parents about the Shriners in Philly. There are two pediatric orthos in NC/SC on my list of experts, but I haven't heard any comments from parents about them, which makes me a little nervous. They are Dr. Jeffrey Shilt at Wake Forest and Dr. Fred Piehl in Columbia, SC.

    Remember that each doc may have a different recommendation for your daughter. It's up to you (the parents) to make the right choice for her. Make sure the doc has experience treating children who are similar to your daughter. She is a unique case, but someone will know how to help her. It may not be local, but someone will know.

    I wish you the best. Please let us know how things go and what recommendations you find.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #7
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Carmell,

    Thank you, very much for your comments and input. I very much appreciate them.

    I have not heard of the doctors you mentioned but I will keep their names and ask around.

    Thank you for taking time to respond.

    Ron

  8. #8
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi there,

    I have also heard excellent things about Philly Shriners, particularly Linda d'Andrea (one of very few female scoliosis surgeons). Children's Hospital of Philadelphia is also one of the best hospitals in the country. I personally found Dr. Dormans there a bit blase about surgery in my case, but having said that, I know he has a great reputation as a surgeon.

    In New York there are many good surgeons, among the best I have heard are Dr. Boachie-Adjei at Hospital for Special Surgery and Dr. Michael Neuwirth (not sure if he does pediatrics though).

    Good luck Ron. Your daughter is so lucky to have you. ~Laura

  9. #9
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Thank you, Laura. Your comments and recommendations are very helpful. I have heard Dr. d'Andrea's name mentioned before.

    Do you know, or have you heard of any doctor who is considered the preeminent pediatric authority/Surgeon on Scoliosis?
    We are very reluctant to put our Daughter through this surgery, we want to make certain we are doing the right thing for her. Though she has Agelman Syndrome and Scoliosis, she is in very good health and is a very alert and happy girl. The last thing we want to do is impose any pain in her life.

    Thanks again for your comments.

    Ron

  10. #10
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Ron,

    You asked about who the "preeminent pediatric authority/Surgeon on Scoliosis.." is. I don't think there is a right answer to this question. I know there are a handful (and the list is growing) of pediatric scoliosis specialists who have dedicated their lives to helping kids with unique and complicated cases. Scoliosis is a generic term. When you break down the causes for scoliosis, there are several areas where a specialist may come in handy. For example, my son was born with severe congenital scoliosis, but is otherwise a healthy child (i.e., no neuromuscular disease or anything else that would complicate his treatment for scoliosis). We searched for someone who had extensive experience in treating children who had similar issues as our son. Someone else may need a specialist who knows the extensive complications involved with other medical issues that could impact treatment for scoliosis. While yet another child may have infantile idiopathic scoliosis and needs to see someone who has extensive experience in early treatment (i.e., casting, etc.) for these kids. Its amazing how different each individual case is. No wonder there isn't ONE prominent and right surgeon.

    Having said all that, there are a handful of surgeons in the country who I would trust my child's life with. Dr. Emans in Boston, Dr. Smith in SLC (our current ortho), Dr. Betz in Philly (Shriners), and several others. I think having a surgeon who is willing to help you search for answers is good. Someone who thinks they KNOW all the answers may not be "up" on the latest (but not necessarily the greatest) treatments. There is a lot to consider.

    Good luck and let us know what you decide for your daughter.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  11. #11
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Carmell,

    Thank you, once again, for your comments. They are very helpful. I appreciate you taking the time to help.

    You have given me some new direction for thinking. Finding a doctor who has a great deal of experience with children with neuromuscular conditions, may be the best choice for our daughter.

    There is so much information and so many doctors, I just feel that I don't have a good grasp on the situation.
    We have a consultation with her current Doctor next week. We are preparing a list of questions. This session may also assist in our decision process.

    Thank you also, for the names of the doctors. I will certainly add these to our reference list.

    Hopefully, a clear course of action will present itself as we try piece together all our options and resources.

    Ron

  12. #12
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi Ron,

    Just reading these posts and thinking how complex and intimidating it can seem. I wanted to echo something Mary Lou said in an earlier post: it can be useful (if frustrating) to see a few surgeons before making an ultimate decision about who gets to do the surgery. From my own experience, I saw three, and all were radically different, and I am still seeking a good match for my own various needs (trust, financial, etc). I know it can feel like such a long road, but it will be worth it in the end.

    ~Laura

  13. #13
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Laura,

    Thank you again, for taking time to comment. We plan to speak with a number of surgeons, before making a decision.

    If you don't mind me asking, it what ways were the doctors different?

    Thanks,
    Ron

  14. #14
    Mary Lou Guest
    Hi Ron...You didn't ask me how the doctors were different, but I'll give you our experiences anyway. Doctor #1-treated my then 12 y.o. daughter like she was two years old; never answered our questions; had no clue what CMT was (CMT is a genetic disease/condition which my daughter shows symptoms of and there are atleast four generations in our family with this condition);more concerned about my daugher's Kyphosis than Scoliosis; #2-not concerned at all with Kyphosis; told us it was nothing to worry about (79* at the time); didn't seem to suit our expectations; #3-wonderful doctor!; wasn't affiliated with a hospital that could do surgery; #4-Dr. Betz-Philly, PA-wonderful doctor; seemed knowledgable/concerned about possible CMT; six months-one year wait for surgery; (daughter doesn't want to wait that long); #5-Dr. Lee Segal-Hershey, PA-current doctor-surgery scheduled for Dec. 7th; wonderful personality; very concerned/knowledgable with CMT; calls me on the telephone whenever I have a problem/questions that I'm concerned about; told us more than anyone about the CMT/Kyphosis/Scoliosis connection; we trutst him 100%!

    Hang in there, you will find the doctor that is right for your whole family.

    Mary Lou

  15. #15
    Join Date
    Oct 2004
    Location
    Charlotte, NC
    Posts
    16
    Mary Lou,

    Thank you for sharing your experience. I see what you mean.
    We have our first consultation next week. I guess we will have to go from there. We have now, also secured a sponsor for Shriners Hospital, so we will see how that goes as well.

    Thanks for taking time to respond.

    Ron

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