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Mary Ann and Dawn, I just researched you both, to try to figure out who was who! Tough to keep people straight on email. Mary Ann, your son is scheduled for surgery at Greenville Shriners June 14, while Dawn and I are still waiting for our confirmations, also at Greenville Shriners. Dawn and I are both expecting July dates for surgery. You both have boys, I believe, while I have a girl getting surgery. Info for us all to share and possibly learn from: I saw Dr. Pete April 15, and asked him about who all is qualified, etc., to do this surgery. He said a total of 8 doctors in the Carolinas do it for Pediatric spine surgery. 3 of them are in the western part of the states. Dr. Wattenbarger, Dr. Allen, and Dr. Pete. They all consult each other and see each other when Dr. Wattenbarger goes to Greenville for training classes/meetings they all attend. I had though Dr. W taught the classes/led the meetings, but apparently he is no better qualified than the 2 at Greenville. I will continue in another email, before I lose this connections
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Dr. Pete told me that any of the three are equally educated, trained, and experienced. I was aggressive maybe and a little pushy when I asked more: I asked him why they are using different methods, ie: the bone bank vs bone from the patient, blood pre-donation vs Red Cross donations. Dr. W's staff also had tried to prevent me from going to Shriners, as I had insurance and they usually have only patients without insurance go to Shriners. They also said they wouldn't recommend sending "my daughter" there. I tried to analyze whether they only send people who are indigent there or if my daughter, Erica, has an especially severe case of Scoliosis that needed speicifically Dr W. I got the impression from Shriners that even the clinic staffs around the world are misinformed about Shriners expertise. Therefore, I, myself, am deciding that all 3 surgeons are pretty much fine to do my daughter's surgery. At Shriners, she and I "get to" stay 2 weeks for FREE. With Dr. W she and I get to stay 4-5 days for our annual max of $7,000, assuming everything is covered by our plan. -
Now I am learning from you 2's experiences and research as we all share our observations. This is helping me. I am not sure if either of you have made the connection that we all 3 will be there this summer sometime and live within driving distance of each other. So, I started this new thread for us (and anyone who wants to comment to us) to share experiences as we go through Greenville Shriners in the future. I forget which one of you had Dr. Allen suggest no surgery, then discuss with Dr. Pete, and change his mind. Things like that are things we can share in particular to help each other through this. Also, I am getting conflicting info about the use of bone and blood during surgery. Possibly different surgeons hear about the studies at different times and therefore change their minds about where to get blood and bone or they merely make different decisions with the data they each receive. Dr. Pete put Erica on a fast-track and apparently she is at the top of the fast-track list. They said surgeries are scheduled thru the end of June, as of April 15, so we are assuming early July. I'm not sure how severe Erica's need is compared to you 2 if it is true that she is the top of the fast-track list, and one of you still doesn't have a date yet. We'll see. Continue to communicate either here or if you have private stuff, in the private emails. I realize some stuff is private, such as exactly where some of you live. KrisComment
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Yes, I put it together this morning. Thanks so much Kris for starting this thread. I think it will be very helpful for us all. Your summary of our situation is accurate. For Mary and for others, I'll repeat some of what I've posted elsewhere here. The doctors call my son's condition congenital kyphosis even though it is unlikely that the vertebrae were actually fused at birth. He has 4 vertebrae fused on the anterior side t8-t12. Fused by God not surgery. I believe it is more likely that the condition was present in utero but the actual fusion took place sometime before his adolescent growth spurt. As I understand it, at Shriners you could get either Dr. Allen or Dr. Pete. I think from a skill stand point they are both good. I am frustrated by Dr. Allen's response on our first trip. He sent in his resident, Dr. Ortman, to say that they don't need to oiperate and that there was nothing they could do aabout his pain. We had been told by our orthopedist that surgery was the only option so we were surprised but felt very blessed that he wouldn;t have to have surgery. Dr. Ortman was unable to answer many of our questions so we finally asked to speak with Dr. Allen. He came in and told us that they no longer do surgery for kyphosis because it had not been proven to be effective in the long run. He alos thought that the progression of our son's curve was at end stage and would not get worse. He did not talk to Wells, our son, at all during his talk, nor did he examine Wells at all. They referred Wells for a full spine MRI and renal ultrasound to rule out other birth defects that can sometims occur. Dr. Ortman called us back and told us other birth defects were not present (Thanks God) but said that Dr. Pete had looked at his films and MRI and had a different opinion. We went in to see him this week and he recommends surgery soon because he says the curve will progress and that the surgery will only stop the progression of the curve and will not improve what has already occurred. He did tell us that Dr. Allen agrees with him. This leaves us confused. I can understand changing your opinion based on additional information from the MRI, but Dr.Allen did not say that his opinion was tentative. He said surgery for this type of condition was not done any more. Of course, he was basing this on the assumption that the curve would not progress, but from all I have read and research, that is a highly unlikely event in a 13 year old boy and surgery is always the recommended solution. Anyway, it is frustating because it has made us feel insecure with the decision. Is this going to be effective in the long run? Are we unnecessarily puttin our son through surgery? Will we always be dealing with a resident rather than the "real doctor"? But doctors aren't perfect and heaven only knows, neither am I. It is also possible that we misunderstood what he was saying.
We are going to Dr. W for a second opinion on May 16. We may also go to Dr. Horton or Dr. Robert Bruce, both of Emory. My husband thinks getting 2 more opinions may be overkill, but we'll see after we hear what Dr. W has to say. We are still assuming we'll have the surgery at Shriners and we are on the waiting list. Sorry this was so long. I'd love to hear what both of your situations are. Thanks for listening.Comment
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By the way, I've sent you both a private email.Comment
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Dawn, I got a private message from you yesterday, but not today. Mary, we hope to hear from you too! I just wrote a book and pushed it and got sent offline, so I will write it shorter now and hope I don't get kicked off again. Thank you for sharing your info from the personnel at Shriners. I never met Dr. Allen. I am reading David Wolpert's book on Scoliosis Surgery that I got from this site. I had to really work hard to get them to finally send me a copy, as the book is sold out everywhere. Let me know if you need to get a copy. I have read about 1/4 of it so far and it is answering alot of the questions I think we 3 are wondering. Or at least it is giving more info than I had earlier. I read today about reasons to use different types of bones from the patient and bone bank, etc. KrisComment
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dawndd,
Tell your husband that we took our daugther to FIVE different doctors before we found the one who did her surgery. Here's a short version of why so many doctors:doctor #1) treated her like she was 2 y.o.-never talked to her and she was 12 at the time; doctor #2) wasn't worried about her Kyphosis which was at about 79* at that time; doctor #3) wonderful orthopedic doctor, but just unable to do surgery if necessary; doctor #4)wonderful doctor, at Shriner's of Philly-we felt comfortable enough with him for him to do the surgery, but his waiting list was about 1 yr., Jamie didn't want to wait that long and we decided that if we didn't like the fifth doctor, which we already had the appt. set up with, doctor #4 would do the surgery; doctor #5) awesome doctor! Everything felt right with him and he is the one who did the surgery. We saw three doctors at one hospital, one doctor at another hospital and another doctor at yet another hospital.
Jamie had surgery-five months ago today-to correct both her Scoliosis and her Kyphosis. She is doing great! Keep looking for a doctor until you are completely satisfied!
Mary LouComment
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Hi all, I realized from my last post that I may have left the wrong impression. I know that we likely misunderstood what Dr. Allen said and once he had the info from the MRI he correctly changed his initial diagnosis. I guess it's easy for us to misunderstand since we are having to process so much information and because it involves our kids.
One more thought, yesterday I saw that Shriners was collecting money at a local store. I immediately dug deep to contribute and thought how truly blessed we all are to have such a wonderful resource available. What a service they offer!!Comment
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Mary Ann and Dawn, I got the private emails from both of you today and yesterday. Did you also email each other with this stuff? I found out from Shriners yesterday that my daughter's surgery request was officially submitted April 18, and someone with a high needs or high priority status was submitted before her, so she is #2 in the high priority list. I wonder if #1 is your son, Dawn. When were you in with him for your visit? If you were before us, then I assume you will get you appointment before us, since you are also on high needs or high priority. I live about 2 hours north of Greenville. School ends here May 25, and my daughter goes to Puerto Rico June 3-11, to assist in teaching bible school as a missionary with church. We are prepared to have her go in for surgery instead if an opening occurs that early. KrisComment
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No, we are after you. I called yesterday and was told that they have the schedule through July 7 and my son is not yet scheduled. I figure whatever schedule we get will be for the best. I hope Erica gets to go to Puerto Rico but if not, then that it what is best. I really look forward to having all the decisions made and then just being in the coping stage!Comment
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Dawn, I guess if I hear first, I will email you the date, and maybe you will be soon after that. I told my daughter surgery is being postponed til at least July, and she got upset. She is afraid they won't get to her until next summer. And, of course, this puts more stress on the beginning of the next school year. Oh well, that's life. Maybe we can do something special July 4 week now. At least we know we won't be spending July 4th weekend in the hospital, unless we are "lucky" and someone cancels that date. 8 more days of school here! KrisComment
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We are having the opposite response from our son. He wants very much to go to the National Boy Scout Jamboree which is late July through the first week of August. He wants surgery postponed until after he returns. I am afraid to wait that long because they have already told us they can't correct the curve he already has and he will continue to grow over the summer and thus continue to increase his curve. Also, that would postpone the surgery to right before school starts. How long have you been told to expect before they are back to school full time with a posterior fusion? Does anyone else know the timing? My son has some learning differences although he does pretty good academically. I hate to think of him getting too far behind.Comment
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I know the feeling about being concerned about school next year. Also, I know about the Scout Jamboree and can understand if he is really active in boy scouts. For us, it is too far away to really consider attending it. I notice on other people's emails that apparently about a month out of school is needed, then gradually start attending. At least they shouldn't miss too much if they miss just a few weeks at the beginning of the school year. I will also send a private email. When did you tell Shriners to put you on the waiting list for surgery? KrisComment
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Dawn and Kris,
You will know when the time is right for your child to go back to school. My daughter's doctor had told us up to six weeks out of school. At her first check-up after surgery, which was 2 1/2 weeks, he told her she could go back at three weeks post-op for half days. Since that was Christmas break for her, she returned at four weeks. She was back in school full-time at six weeks. Our school was to provide her with tutoring for up to six weeks (for a total of 30 hours). She had a total of less than 3 hours, because she went back so quickly. The schools should be very understanding and if they aren't, don't hestitate to ask for what your child needs.
Mary LouComment
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Mary Lou is so right about knowing when the right time for your child to go back to school is. Crystal's doctor told her any time after two weeks post op. Craig and I kept her home until three weeks post op. Your first definite sign will be that you are starting to drive each other crazy. That means it's time for the socialization of school.
You can schedule surgery around activities to a point. Crystal plays high school basketball and wanted surgery the beginning to middle of March so that she would be ready to play basketball in the next season. So, that's what happened. The hospitals do the best they can with scheduling around things for the active kids.
When it is time for your child to go back to school, be sure to go in before hand, take your child with you because it is about them, and discuss what needs to happen. Most schools are very good about accomodating any student with needs of any kind.
'til later,
NikkiComment
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