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Thread: New here & just trying to figure out what the best options are for my daughter. Help

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  1. #1
    Join Date
    Aug 2011
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    19

    Unhappy New here & just trying to figure out what the best options are for my daughter. Help

    Hi thank you for reading this. My daughter had her first two spine surgeries in 2008 done by Dr. John Johnson in Louisville, ky. I did not like him from day one but my daughter's Pediatrician said he was the best. At first she was fine but then began to have pain at the top of her scar and over her right shoulder. After repeated visits with him only saying that she needed therapy, I got frustrated and asked to see Dr. Puno. Right away Dr.Puno found that her bars were coming through her back, one was - coming through the skin in the middle top of her back and the other had cut through the muscle on her right shoulder. So Dr. Puno did surgery on her taking out the original harrington bars and replacing it with a rod that only goes from her neck to midways on her back.

    After repeated visits with Dr. Puno, he does not see a problem with her back, he won't even schedule an MRI until December. Her back has begun to hump over the right shoulder badly, the back of the spine appears to be pushing inward causing her stomach(what little stomach she has that is) to pooch out, and her body is beginning to twist around towards her front right side and she cannot walk straight. She's in pain everyday and it's horrible. She has also lost a inch of height now.

    She had a horrible "s" curve to begin with, somewhere around 70% curve on the top and 60% on the bottom. When they opened her up they found that her spine was twisted backwards and they had to turn it around. I might also add at this point that she has also gone through 3 open heart surgeries because of Pulmonary Atresia with VSD and overriding aorta. She is being treated for seizures, has a slight learning disability and has recently developed acid reflux which could be a commom side affect to problems with the spine I have read.

    I am scared to death, I look at her and wonder how much longer can she take this before something else happens, her back is so bad that it just looks like its about to explode. I fear if we don't do something soon there will be irreparable damage done to her.

    I know this was lengthy but we need help. I am considering finding another doctor...would prefer him to be one of the best and I'm willing to travel out of state if I have to in order to get her the help she needs. I don't even know how we would manage or afford going out of state since my daughter recieves health insuance through the state but I don't know what to do. Dr. Puno is a wonderful doctor but somehow I think he is just taking the spine in consideration alone, she looks as if she needs her whole back reconstructed at this rate. Please I would like your feedback on doctors that you feel are the best and those to stay away from, or even just any advice. Thank you again for taking the time to look at this and if you prefer to reach me through personally, you can email me at:

    krnoon1@gmail.com
    .
    These pictures were taken today of her back. If you would like to see what her back looked like before and after her first surgery you can see them on youtube at: http://youtu.be/UsqBZf44NVE

    IMG_20111014_004717.jpg IMG_20111014_004728.jpg IMG_20111014_004747.jpg IMG_20111014_004758 (1).jpg

    Have a wonderfully blessed day!

    Kellie Noon

  2. #2
    Join Date
    Jul 2011
    Posts
    535
    Hi Kellie,

    Thank you for sharing your journey. I'll pray for you to have strength to find a solution for your daughter's situation and also pray for your daughter to keep strong. How old is your daughter?

    Dr. Lawrence Lenke is one of the top spinal surgeons for both pediatric and adult scoliosis. http://www.stlouischildrens.org/cont...x12mem_id=1778

    He does a lot of revision surgeries and specializes in the most severe cases.

    Dr. Lenke is also head of the spinal dept. at St. Louis Shriner's Hospital who provide surgery to youth under the age of 18 at no cost. I suggest you call Dr. Lenke's office at 314-514-3500 and talk with Naomi to see what your options are.

    I am traveling out of state for a surgery with Dr. Lenke for myself.

    There are other families on this forum whose children have received help through Shriners. I'm sure you'll hear from them soon.

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  3. #3
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Kellie...

    I'm sorry to hear that your daughter has had such a difficult time.

    Dr. Puno's partner, Steve Glassman, has a good reputation. I don't know if they allow patients to move from doctor to doctor in that practice, but it might be worth an inquiry. Also, I agree with Doreen, that Dr. Lenke would be an excellent choice. Unfortunately, there's usually a bit of a wait to get in to see him.

    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
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi there,

    I am so sorry to hear about all your daughter's troubles. From the photos and your description of her back, in really sounds like she needs to see another revision expert. As Linda mentioned, Lenke would be a great choice. He also has a partner, Dr Scott Luhmann, who is outstanding and specializes in pediatrics. Dr Luhmann did my daughter's surgery at Shriner's St Louis, and we loved him. Dr Lenke I believe also does some work at Shriners St Louis.

    I would strongly recommend you contact Shriners Hospital St Louis directly. Dr Luhmann's nurse, Janet Schick, should be able to assist you. Her number is 314 432 3600 x 1611. In the meanwhile you can download an application (which is a simple formality) and send it in. The only requirement is the child would benefit from Shriner's specialized care, which goes without saying in your daughter's situation. All care is free of charge to the family, although they will bill any insurance that is available to defray the costs to Shriners.

    My daughter had a simple surgery (vertebral body stapling), but we had wonderful care in St Louis. Family services there can assist with travel arrangements/lodging/expenses etc. Everyone was very helpful and supportive.

    Good luck, don't be afraid to persist until you get your daughter seen. Please let us know how things are going.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
    Join Date
    Aug 2011
    Posts
    19

    Thank you all!

    I cannot tell you all how I appreciate the great information. I did call Dr. Lenke's office today and he does not go to Shriners any longer, they suggested Dr. Bridwell who actually taught Dr. Lenke. I called Shriners and they mentioned a couple other doctors as well one of which was Dr. Luhmann I believe. They are going to check and see if there would be a doctor who is just as knowledgable as these doctors at the Lexington Shriners so I would not have to travel as far. Honestly I don't care to go out of state if he means she is going to get the best care.

    Linda, I know Dr. Glassman, he did surgery on my sister and messed up terribly, Dr. Puno had to repair his work and he would not even come in an apologize to my sister so I'm not a fan but I appreciate you mentioning him.

    Doreen, thank you for the prayers we definitely can use them!!

    Gayle, (my sister's name is Gayle and spelled the same!!) Thank you for the information I will give her a call. I have the application for shriner's pulled up now and am getting ready to fill it out.

    I have to tell you all that your responses have given my daughter and I more hope than I have had in a long time, I'm just so thankful!!

    I will keep you all posted!

    Kellie

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Wow, sorry to hear that.
    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.

  7. #7
    Join Date
    Mar 2010
    Posts
    2,755
    How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

  8. #8
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Kellie i'm glad your daughter got in to the shriners system. the 20 orthopedic shriners hospitals are really top notch in the field of spinal disorders. i was a patient at the sacramento shriners hospital ever shince the day i was born.
    I hear great things about shriners philly from Maria.
    Last edited by kennedy; 12-05-2011 at 06:04 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  9. #9
    Join Date
    Aug 2011
    Posts
    19

    Hi Kennedy

    Thank you for letting me know! What have you had to have done? How old are you now?

    Quote Originally Posted by kennedy View Post
    Kellie i'm glad your daughter got in to the shriners system. the 20 orthopedic shriners hospitals are really top notch in the field of spinal disorders. i was a patient at the sacramento shriners hospital ever shince the day i was born.
    I hear great things about shriners philly from Maria.

  10. #10
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Kellie i was dischared from shriners when i was 17 years old. but i had my posterior spinal fusion done by the head of spinal surgery from shriners hospital sacramento the surgery took place at uc davis medical center in sacramento as well. I'm now 19 years old.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  11. #11
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Kellie,

    I just sent you an email with some additional info about Philly/travel/etc.

    But I didn't touch on some other things so I'll do that here.

    First, your daughter will NOT be turned away or turned down for surgery if she needs it - period. I can guarantee that. The only criteria for care at Shriners is that the child has a condition that they treat, period. I just wanted to give you one less thing to worry about. I have been going there for 8 years and know how they operate, no pun intended - and Dr. Betz (chief of staff) would sooner cut off his right arm than turn a child away that he and his staff could help. The same is true for Dr. Samdani.

    I suspect that Janet is unusually busy this week (I saw her in NYC last night at a fundraiser so I know it is a crazy week for her). I am seeing her again on Thursday in Philly for my son's regular checkup. I will try to remember to mention to her that she should call you. If I forget, please feel free to remind me.

    Best of luck and please keep me posted. I am happy to hold your hand along this journey.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  12. #12
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    Aug 2011
    Posts
    19
    Quote Originally Posted by mariaf View Post
    Kellie,

    I just sent you an email with some additional info about Philly/travel/etc.

    But I didn't touch on some other things so I'll do that here.

    First, your daughter will NOT be turned away or turned down for surgery if she needs it - period. I can guarantee that. The only criteria for care at Shriners is that the child has a condition that they treat, period. I just wanted to give you one less thing to worry about. I have been going there for 8 years and know how they operate, no pun intended - and Dr. Betz (chief of staff) would sooner cut off his right arm than turn a child away that he and his staff could help. The same is true for Dr. Samdani.

    I suspect that Janet is unusually busy this week (I saw her in NYC last night at a fundraiser so I know it is a crazy week for her). I am seeing her again on Thursday in Philly for my son's regular checkup. I will try to remember to mention to her that she should call you. If I forget, please feel free to remind me.

    Best of luck and please keep me posted. I am happy to hold your hand along this journey.
    I'm sorry I have not replied before now, I have been so busy. Thank you for info I will check it out once I am done here. I did get a couple emails from Janet recently. I felt real assured until just now when I got the latest one from her. It seems that they don't have a Cardiac Anesthesiology on staff, so now I'm really worried. We've got our plane flight arranged through Miracleflights and they are non-returnable so I will be sad if this gets cancelled after all the work they have done to get us there. She said she will call in the morning to go over her meds.

  13. #13
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    Jan 2008
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    NC
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    Quote Originally Posted by Sierras Mom View Post
    I'm sorry I have not replied before now, I have been so busy. Thank you for info I will check it out once I am done here. I did get a couple emails from Janet recently. I felt real assured until just now when I got the latest one from her. It seems that they don't have a Cardiac Anesthesiology on staff, so now I'm really worried. We've got our plane flight arranged through Miracleflights and they are non-returnable so I will be sad if this gets cancelled after all the work they have done to get us there. She said she will call in the morning to go over her meds.
    Kellie,

    They will tell you if not having a cardiac anesthesiologist on staff is a problem or not. Maybe it is and maybe it isn't.

    If it is then the worst is that you will get a top shelf opinion from Samdani which is not so bad. You will likely need a few opinions anyway.

    If they decline, I suggest you find a top revision specialist as opposed to another pediatric surgeon. Not saying Samdani wouldn't do an excellent job. I am saying that Linda mentioned something to me about pediatric surgeons versus others surgeons who have seen all ages of patients and how they might have a different perspective. I think it is safe to say non-pediatric guys do way more revisions than pediatric guys and mixed practice guys. That is due to the success the first time of most pediatric fusions in my opinion. But when one gets away, who has the most experience? From Linda's comment, and although our pediatric surgeon is a spine artist and has agreed to see my daughters if a problem ever arose, I would instead take them to the best revision guy I could find, even if they are still under 18 at the time.

    Just something to consider.

    Take care of yourself also. It sounds like there is a lot on your plate. You can do this. You have already accomplished so much for Sierra. :-)

    Sharon
    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."

  14. #14
    Join Date
    Aug 2011
    Posts
    19

    I guess I've never heard of a revision specialist? Update on Appointment also.

    Hey Sharon,

    What is the difference between a revision doctor and a regular spine doctor, are they neurosurgeons or orthopedic surgeons? I guess I am new to all of this. I am very disappointed. Janet Cerrone emailed yesterday and said she had cancelled my daughter's appointment because they didn't know her heart condition was so extensive. She said that Dr. Samdani signed off on it before he read the records. If he signed off on it without even reveiwing her record obviously he thought he could help her. I asked her if she would at least let us go ahead and come just to get his opinion. She said that they did not have a cardiac anestheiologist on staff at Shriner's. I asked her if maybe if we could get a team together who would donate their time would that work but I have not heard back from her. I am heartbroken. I even have her set up for an MRI Monday so I could take it with me so they could see the latest images. Monday Morning I will be on the phone and see what I can do. Honestly, I just want the best doctor.....someone who is going to fix her right the first time because we just can't keep going back over this and opening her up, it's too risky and it's to hard on her.

    I have started a fb page looking for help, I have uploaded her xrays and mri's well most of them anyway, thought you all might add yourself and pass it on if you don't mind. https://www.facebook.com/help4sierra

    thank you for the advice Sharon, it sounds like you all can teach me so much here Have a great night!!

    QUOTE=Pooka1;130642]Kellie,

    They will tell you if not having a cardiac anesthesiologist on staff is a problem or not. Maybe it is and maybe it isn't.

    If it is then the worst is that you will get a top shelf opinion from Samdani which is not so bad. You will likely need a few opinions anyway.

    If they decline, I suggest you find a top revision specialist as opposed to another pediatric surgeon. Not saying Samdani wouldn't do an excellent job. I am saying that Linda mentioned something to me about pediatric surgeons versus others surgeons who have seen all ages of patients and how they might have a different perspective. I think it is safe to say non-pediatric guys do way more revisions than pediatric guys and mixed practice guys. That is due to the success the first time of most pediatric fusions in my opinion. But when one gets away, who has the most experience? From Linda's comment, and although our pediatric surgeon is a spine artist and has agreed to see my daughters if a problem ever arose, I would instead take them to the best revision guy I could find, even if they are still under 18 at the time.

    Just something to consider.

    Take care of yourself also. It sounds like there is a lot on your plate. You can do this. You have already accomplished so much for Sierra. :-)

    Sharon[/QUOTE]

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