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

  1. #31
    Join Date
    Nov 2011
    Location
    New Albany, Indiana
    Posts
    25

    So glad for you and Sierra!!

    I'm so happy to hear that the Phillly Shriners are going to look at Sierra....but I am so sorry she is in so much pain. I can't even begin to imagine...bless her heart. I will be praying for her. I am grateful that Samuel is not having any pain, but I can't figure out why in the world he wouldn't be.....when I saw the xray images of his curve, it pains ME just looking at it! (as for Dr. C at Leatherman, I about DIED when you said that he was the same doctor who did the terrible job on your sister!!! I hope it wasn't the same one.....oh my!)

    Yes, I will friend you on Facebook.....and keep in touch with you personally that way.

    Thanks....
    blessings....and you guys will be in my thoughts and prayers as you prepare for your visit to Phillly.
    robin

    14 y.o. son diagnosed 11/2011 with congenital scoliosis, hemivertibrae, T3-T4, with 34 degree curve.

  2. #32
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,012

    Great news!

    That's great news that you will be going to Shriner's Philly with Sierra! I am glad you persevered in finding an excellent place to evaluate her.

    I never got your PM, but if you resend it I will be happy to respond. You should plan to be at Shriner's for several hours at least. You will check in and fill out some paperwork, go upstairs to clinic, probably to x-ray, back to clinic, where you will probably meet Janet Cerrone, the spine program PA. She will talk with you at length, examine Sierra, look at x-rays, etc. Then you will meet with Dr Samdani and possibly other surgeons. I have heard lots of wonderful things about Dr Samdani from other parents although I have not met him personally. Surgery scheduling depends on lots of factors, which will be explained to you when you are there. I am sure if they feel they can help Sierra, they will get her onto the surgery schedule in a timely manner (maybe even in several months, it really depends). To me it would seem like her case would be prioritized due to her pain, age and situation.

    One last thing--Shriner's in Philly is in a very poor, run down neighborhood. This is shocking to some families when they arrive. The hospital itself is fine inside though. We stayed downtown at the Crowne Plaza which was ok; it has a Shriner's rate. If you check out www.vertebralstapling.com (mariaf here co-moderates it) there is a lot of Philly travel and hotel info which could be helpful if you are not familiar with the area.

    Please let us know how things progress with your travel plans and appointment. We are here for you.
    Last edited by leahdragonfly; 12-04-2011 at 09:18 PM.
    Gayle, age 47
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  3. #33
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    715
    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
    22.5 years old
    Posterior Spinal Fusion 3-10-10
    Foot Surgery Febaury 2015

  4. #34
    Join Date
    Aug 2011
    Posts
    19

    Hi Robin!

    Thank you!! I'm glad Samuel isn't in pain!! They say kids adjust to pain much easier than we do, I am glad for their sake. I will call my sister tomorrow and see if it was the same Dr. Campbell who is there, thought I can't imagine it wouldn't be. Just make sure before you let them do any surgery on him that you get a second opinion. If I had of known about Shriner's I would have went there in the first place because everything our kids are put through surgery the next one is even more riskier for them, they are more likely to get blood clots and pulmonary embolisms. I think about it now and I wonder had I gone to a Shriner's hospital to begin with would she even be in the shape she is in now? This will be her 10th surgery, granted not all were back surgeries but still! Well, I have got to check out the free flights they offer with the different companies, I have been so busy with other things I just haven't been able to tackle this. I look forward to *seeing* you on facebook.

    Take care!!!

    Kellie

    Quote Originally Posted by robinlbe View Post
    I'm so happy to hear that the Phillly Shriners are going to look at Sierra....but I am so sorry she is in so much pain. I can't even begin to imagine...bless her heart. I will be praying for her. I am grateful that Samuel is not having any pain, but I can't figure out why in the world he wouldn't be.....when I saw the xray images of his curve, it pains ME just looking at it! (as for Dr. C at Leatherman, I about DIED when you said that he was the same doctor who did the terrible job on your sister!!! I hope it wasn't the same one.....oh my!)

    Yes, I will friend you on Facebook.....and keep in touch with you personally that way.

    Thanks....
    blessings....and you guys will be in my thoughts and prayers as you prepare for your visit to Phillly.
    robin

  5. #35
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    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.

  6. #36
    Join Date
    Aug 2011
    Posts
    19

    Hi Gayle!

    Hi Gayle, Yes, we are really excited! Do you live in PA? Thank you for letting me know about the neighborhood, I was on some site and they were talking about how wonderful and safe it was there so this is good info! What do you think about the subway to get around and there was another form of transportation too and something to get to NJ and NY, are those safe?

    I will have to check my mail and send it, maybe I just thought I sent it and I didn't....lol anything is possible with me these days. When I had talked to admissions that first day, I had asked if this was just an evaluation and she said not because I had sent so much information (plus I had even taken pictures of her back the way the doctors do so they can really get a good look at what was going on) that she would be having surgery with Dr. Samdani. Now I understand now that this person is new so maybe she misuderstood I dunno but I hope this isn't just an evaluation and then they will turn her down after we get down there it would be such a huge disappointment.

    It sounds like that first day is a really long day, so I wonder how I should plan flight arrangements and reservations at where we will be staying. I have seen that the Ronald McDonald has is close and truthfully, I cannot afford alot and they are cheap. have you been in them, I noticed there are 4, is there one that is better than the others or in a safer area? It's alittle scary. I still have had no luck getting with Janet though I have left numerous messages as have the staff
    there. The admissions person said I needed to talk to her before we came down so now I don't know what to do. I did leave a message today telling her I would emaill her and if need be have her paged, I also told her she could call me at any time and gave her my email as well. I'm probably driving her crazy but the admissions person just did not act like this was a one time visit, so I am truly confused.

    I will be definitely keeping you up to date, I will be taking my computer along as well as my phone. Thank you so much for all your helpful info I do so appreciati it. I also signed up for maria's site and plan to get on there tonight if I can manage to stay awake..... I am in the process of going through a divorce and there has been a tremendous amount of stress....here I am packing for an eventual move and now planning this and it's a long story, my husband has really left me with no choice but to divorce him and he has hurt Sierra and I completely. This was all decided the same week I heard from Shriner's so I guess you can imagine my stress level!! Again thank you for all your help!!

    Kellie

    Quote Originally Posted by leahdragonfly View Post
    That's great news that you will be going to Shriner's Philly with Sierra! I am glad you persevered in finding an excellent place to evaluate her.

    I never got your PM, but if you resend it I will be happy to respond. You should plan to be at Shriner's for several hours at least. You will check in and fill out some paperwork, go upstairs to clinic, probably to x-ray, back to clinic, where you will probably meet Janet Cerrone, the spine program PA. She will talk with you at length, examine Sierra, look at x-rays, etc. Then you will meet with Dr Samdani and possibly other surgeons. I have heard lots of wonderful things about Dr Samdani from other parents although I have not met him personally. Surgery scheduling depends on lots of factors, which will be explained to you when you are there. I am sure if they feel they can help Sierra, they will get her onto the surgery schedule in a timely manner (maybe even in several months, it really depends). To me it would seem like her case would be prioritized due to her pain, age and situation.

    One last thing--Shriner's in Philly is in a very poor, run down neighborhood. This is shocking to some families when they arrive. The hospital itself is fine inside though. We stayed downtown at the Crowne Plaza which was ok; it has a Shriner's rate. If you check out www.vertebralstapling.com (mariaf here co-moderates it) there is a lot of Philly travel and hotel info which could be helpful if you are not familiar with the area.

    Please let us know how things progress with your travel plans and appointment. We are here for you.

  7. #37
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    715
    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
    22.5 years old
    Posterior Spinal Fusion 3-10-10
    Foot Surgery Febaury 2015

  8. #38
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,757
    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 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  9. #39
    Join Date
    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.

  10. #40
    Join Date
    Jan 2008
    Location
    NC
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    8,107
    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."

  11. #41
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    Aug 2011
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    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]

  12. #42
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    Quote Originally Posted by Sierras Mom View Post
    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!!
    Hey Kellie,

    I am very sorry to hear Samdani can't do the surgery. I don't blame you for being heartbroken. But the silver lining here is you can now focus on finding someone who has done more revisions than Samdani.

    I am using the term revision specialist to mean a very experienced orthopedic surgeon who has successfully done many revision surgeries. I don't think there is anyone out there just doing revisions. I am guessing there are unique aspects of revision surgery that don't present themselves perhaps in an original fusion. I could be wrong. When you look for one, ask how many revisions they have done successfully.

    I'll look at the FB page.

    We all have to carry each other.

    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."

  13. #43
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    Aug 2011
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    thanks Sharon! I did start looking for revision specialists and there seem to be alot out there! Is there anyone you specifically recommend?

  14. #44
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    Quote Originally Posted by Sierras Mom View Post
    thanks Sharon! I did start looking for revision specialists and there seem to be alot out there! Is there anyone you specifically recommend?
    Kellie, I have no idea. I would have to do this search also if my daughters ever ran into problems. I'm guessing Linda's (moderator) group at UCSF has some top revision guys. She would know about them and others across the country.

    One caution I would suggest... although there is a surgical revision section here, you can't assume that a bad outcome is due to the surgeon. These guys take their patients as they come. Maybe some have spines that can't be stabilized/balanced by anyone. Who knows. All you can do is go with someone who has done many many revisions.

    Dr. Hey, here in Raleigh blogs about some of his cases. There are many revisions among them. Some of these people write back later with pictures of them doing things showing the revision was successful and he posts them to the blog. He seems very adept at quick surgeries with minimal loss of blood. He seems to also develop new instrumentation. You might try to get an opinion from him if you send the case materials.

    Good luck.
    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."

  15. #45
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    Aug 2011
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    Sierra's trip to see Dr. Samdami

    Sorry I haven't updated anyone, I didn't have internet access. As suspected Sierra has Khyphosis and Lordosis. The doctor said that with her heart condition it would be a risky surgery and would probably take 3 surgeries a week apart to fix it. They would have to basically break apart her fusion and then put screws and metal on each vertabrae all the way down her spine and then I guess fix her shoulders and hips. The blood loss would be massive and she could face the possibility of loosing function of her bodily functions the rest of her life and weak feet. There is also no garuantee that her pain would decrease. He felt that she should wait as long as possible and see another pain management doctor. They also suggested that she may have something else wrong with her and I should have it checked out but I can't remember the name right now.

    I can't remember if it was the nurse or the doctor I asked but I had asked if this would eventually harm her internal organs and they said "no" but I've looked the infor up on the net and it says it does harm them eventually, now I'm really scared about this. Has anyone had experience with this?

    He suggested as much therapy as possible as well but really that was all. We are all really sad and don't know exactly where to go to from here.

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