Shriners and Drs. in Phila & NY

[mibre]

My 14 year old daughter had a curve of 45+ degrees. She has been a brace for 4 years and now her curve is progressing rapidly. We saw Dr. Betz at Shriners in July and he told us he would recommend surgery. We decided for my daughter to have the surgery and then found out Dr. Betz has a 2 year waiting list. We then went on the waiting list for Dr. D'Andrea who we were told by the nurse coordinator would be able to do the surgery in Dec. or Jan. We then began to plan our life around her getting surgery then ( ie -didn't take new projects at work, informed her teachers etc) Also I figured the timing was good because she would be better for all the end of the year 8th grade graduation activities. Now I was just informed that she is not on the schedule for Jan. and they can't tell me if she'll be on for Feb etc. I am so frustrated. I would like this to be over with. Has anyone else had this experience? I am now thinking of going to see other doctors. I've heard alot of good things abour Dr. Broachi in NY. Has anyone seen Dr. Flynn at CHOP? I'd love some feedback about him. Thanks.

[Mary Lou]

mibre,

We had the same problem with Dr. Betz. Dr. Betz was our fourth opinion and we were very impressed with him and his surgical talents. However, we didn't want to wait for at least a year for surgery. May I suggest a doctor to you? My daughter had her surgery done at Penn State Milton Hershey Children's Hospital (Hershey, PA) by Dr. Lee Segal. He is awesome! When we saw him, he asked us why we were in his office when we had been seen by Dr. Betz? He told us we were in excellent hands with Dr. Betz. Dr. Segal and Dr. Betz rank very highly in my opinion, but our final decision was based on timing and location. Dr. Betz is about 1 hour from our home where Dr. Segal is about 20 minutes. Dr. Betz' surgical schedule is crazy. Dr. Segal's is long. As for Dr. Flynn and Dr. Boachie, there has been a lot of talk on this forum about both of them and if you do a search, you'll see what I mean.

As for the timing of surgery, be careful on what activities your daughter is hoping to participate in. Jamie had her surgery December 2004 (8th grade) and returned to school with everyone else after New Year's which was great. However, she missed out on several field trips-a trip to our local amusement park (which was a reward for being on the honor roll); a trip to the Civil War museum and an other trip because she wasn't allowed to be in crowds. We are really glad we scheduled her surgery when we did because it would have been so much harder if we had waited until she was in high school. We didn't think about field trips etc. when we scheduled surgery and therefore, missing those things were very hard.

Sorry this got so long. Feel free to send me a private message or e-mail me at Spinesupport05@aol.com.

Mary Lou

[MATJESNIC]

Chop

Hi there,
I live in the PHila area. I know 2 teens who are being seen by Dr. Dormans at Chop. One of them had surgery about 5 years ago and her parents were pleased with Dr. Dormans. If we need to have surgery for Nicole, we will look into Chop or Shriner's.
Melissa

[violinprincess3]

i live around philadelphia and my surgery was at CHOP, but i saw dr. dormans. i do know some people who have seen dr. flynn (one's actually getting surgery at the moment ) but i haven't personally had him. but since CHOP is a world-renowned hospital i'm sure dr. fllynn is great.

[Cheryl M]

I had the same problem with Shriners in Greenville. They told me surgery at the end of October and when we didn't get on the November schedule, we decided to go private. My daughter is scheduled for surgery on November 28th because her curve progressed quickly as well. Good luck. I know it's scary when the curve really starts to move.
Cheryl

[pam b]

Hi Mimbre

My fourteen year old daughter just had surgery on October 19th with Dr. Boachie. When we went to see him in September he told us that he was booking for Jan. and Feb. We told him that we were hoping not to wait until then. He went to look at his schedule and came back and said that he would do it the same day as another girl who was having the same exact surgery and that he could do it on Oct. 19th which is what we did. He is a very caring person as well as a wonderful surgeon.

Pam

[nikyergen]

We were told that we could expect 12-18 months on Dr. Krajbich's, Portland Shriners, surgery list. She had surgery within 5 months to the date or her diagnosis. If your daugthers curves really start to progress, she will get moved up on the list. Do let them know that you would take a short notice also. We did that for Crystal's foot surgeries that need to be done. They could call me tomorrow to be there on Wednesday for surgery. I am really hoping that it is done just before Christmas, so she won't miss any more school.

Hang in there. Things get better.

'til later,
Nikki

[jc3]

hi pam b
my daughter also had surgery with dr. boachie last nov. We just celebrated our "one year" anniversary. She is doing great and the year goes so fast.
How is your daughter doing?
Jennifer

[mariaf]

Shriners and Drs. in PHilly and NY

Hi Mibre -

I had EXACTLY the same experience...about 2 years ago. In December 2003, we took my son to see Dr. Betz and it was going to be a long wait to get on his surgical schedule (which I understand is even longer now) - so we decided to go on Dr. D'Andrea's waiting list. David could not get on the surgery schedule with Dr. D'Andrea in January. Then February came and again, no openings. (Please try to remember, they are in great demand and see hundreds of kids....and the busier Dr. Betz gets the more patients that get referred to Dr. D'Andrea. That's what happens I guess when you're that good.) We were told it was not looking great for March either. And then in late February I got a call saying that there was a cancellation on Dr. D'Andrea's schedule for March 10th and would we want it? And that's the date Davids' surgery was performed.

All I can say is be persistent. I called every week or so just to check in on the status and see if things had changed in terms of scheduling. When a cancellation did occur, I finally got it. I remember how FRUSTRATING it was so I can really, really sympathize. I think that waiting was the hardest part of the whole thing. But remember you will get that call eventually. In case you're wondering, yes Dr. D'Andrea was worth the wait. She's wonderful and David is thankfully doing very well. If you have any other questions, please let me know. I wish you all the best,

Maria

[Jacque's Mom]

Private Message

Mibre,

I sent you a private message.

Lynn

[mibre]

Thank you everyone for your responses and sharing your experiences and suggesstions with me. We went to Hospital for Special Surgery last week and really liked Dr. Boachie. The day before we went there we got a call from Shriners that there was a cancellation on January 4th and there was a possibility we could have that day. We found out yesterday that that will be the date of my daughter's surgery. Now the real nervousness sets in. I'm busy rereading everone's suggestions for presurgery preparations. I welcome all ideas. Thanks again.

[KRIS ATKINSON]

Mibre, am I understanding correctly that you are schedule at Shriners for Jan 4, not Dr. Boachie? Congratulations on the upcoming schedule! Kris

[mariaf]

Mibre - I sent you a private message.

[mibre]

yes, My daughter's surgery is at Shriner's with Dr. D" Andrea. There was a cancellation and she was able to get the January 4th date. We are now trying to arrange blood donations stc. I plan to review this board on what to bring to the hospital etc. If anyone has any hints let me know. Thanks again to everyone for your concern and replies.