Asking for some information

[Mac9192]

I don't like bringing my personal life into a message board, but after being here for about 9 months, there are quite a few very educated and interesting people that are members.
I have a 10 yr old daughter that has severe scoliosis, 63 degree to be exact. To add to it, a concern is her pulmonary function. One lung is operating at 55%. My wife and I are at the point of surgery soon.
The two options are growth rods Then spinal fusion or spinal fusion.
My worry is fusion at 10. Two different approaches, 2 different surgeons, both confident in their approach. They both are doctors at The Shriners, one in Philadelphia, one in Greenville SC.
My question is, do any of you have experience in this area or know of anyone who's had either procedure. Any input would be appreciated, and thanks for reading this.

 

[hart2chesson]

I don't like bringing my personal life into a message board, but after being here for about 9 months, there are quite a few very educated and interesting people that are members.
I have a 10 yr old daughter that has severe scoliosis, 63 degree to be exact. To add to it, a concern is her pulmonary function. One lung is operating at 55%. My wife and I are at the point of surgery soon.
The two options are growth rods Then spinal fusion or spinal fusion.
My worry is fusion at 10. Two different approaches, 2 different surgeons, both confident in their approach. They both are doctors at The Shriners, one in Philadelphia, one in Greenville SC.
My question is, do any of you have experience in this area or know of anyone who's had either procedure. Any input would be appreciated, and thanks for reading this.

Absolutely Mac and your young daughter and all of your family are very much in our prayers! OFC

 

[skysdad]

Thank you for sharing.I do believe strongly in prayer. I think prayer and faith are a powerful combination. The Lord certainly can guide a skillful surgeons hand. OFC

 

[TheDude1]

Mac, while I cannot help, I would also check out Dukebasketballreport, as there are a lot of people involved with Duke Medical Center there, as well as the Duke Scout site; I know some specific docs who are on that site.

 

[SwatX1]

I wish I had some insight for your questions but I do not. I hope everything works out well for her.

 

[SoCal_Dukie3]

Mac, I've been in hundreds of spine cases as a device rep. I would recommend another 1 or 2 opinions, even though it can be time consuming. The good news is that both options have good success rates so to me it comes down with your confidence in a particular surgeon.

Has either doc discussed only fusing the critical vertebrae to at least relieve lung function, but allowing other areas to continue to grow, then going back in a few years (or more) and fusing the rest to further lessen the curve?

 

[hart2chesson]

Mac, you got a lot of good people here who really care buddy! May God Bless!

OFC

 

[Mac9192]

Mac, I've been in hundreds of spine cases as a device rep. I would recommend another 1 or 2 opinions, even though it can be time consuming. The good news is that both options have good success rates so to me it comes down with your confidence in a particular surgeon.

Has either doc discussed only fusing the critical vertebrae to at least relieve lung function, but allowing other areas to continue to grow, then going back in a few years (or more) and fusing the rest to further lessen the curve?

We have been to 3 different specialists. The Spinal fusion is the end result whether we chose it now or go the route with the Growing Rods. Both doctors now claim that not enough data to where fusion will help with lungs or not. It might, but may not. The doctor doing the growing rods said that. He is concerned she may not be done growing, therefore recommends the rods, which could possibly help her lungs.
This is where we are. If she was 12-13, to me it's a no brainer. I really appreciate your input and hope what I'm telling you is helpful.
Thanks SoCal.

 

[Kingbluedevil]

Mac, Hoping for the best for you and your family. Prayers for all

 

[LongTimeDukeFan]

Hey Mac -- will certainly lift your daughter in prayer.

 

[SoCal_Dukie3]

We have been to 3 different specialists. The Spinal fusion is the end result whether we chose it now or go the route with the Growing Rods. Both doctors now claim that not enough data to where fusion will help with lungs or not. It might, but may not. The doctor doing the growing rods said that. He is concerned she may not be done growing, therefore recommends the rods, which could possibly help her lungs.
This is where we are. If she was 12-13, to me it's a no brainer. I really appreciate your input and hope what I'm telling you is helpful.
Thanks SoCal.

So sorry man. I agree, a full fusion would stop growth, although sometimes if they do it in stages it still allows some growth. Imo I'd go with the rods first and if not successful then proceed with fusion. MAGEC is a pretty new technology that cuts down on repeat surgery but I'm not sure if it could be used over 45 degree curvature.

 

[hart2chesson]

So sorry man. I agree, a full fusion would stop growth, although sometimes if they do it in stages it still allows some growth. Imo I'd go with the rods first and if not successful then proceed with fusion. MAGEC is a pretty new technology that cuts down on repeat surgery but I'm not sure if it could be used over 45 degree curvature.

So Cal my friend so kind of you to come forward and lend your knowledge. God will bless you- class act sir!

OFC

 

[Duke937]

Prayers to you and your family! May god bless you all in every way possible.

 

[DukeRulesBasketball]

Mac, So sorry to hear this. Keeping you and your family in my thoughts and prayers.

 

[dukiejay]

Mac, while I cannot help, I would also check out Dukebasketballreport, as there are a lot of people involved with Duke Medical Center there, as well as the Duke Scout site; I know some specific docs who are on that site.

I was going to suggest the exact same thing. DBR would be a place to post exactly what you did here. Very good community over there, as well.

Best of luck, Mac....and thoughts and prayers sent to you, your family, and especially that little girl of yours.

 

[jcdevilfan]

Mac, I wish I could offer some advice, but I have never experienced this situation. My hopes and prayers will be with your little girl, and to you and your family. Don't forget to let the Lord guide you in your decision, the power of prayer is very strong.
God Bless!
OFC

 

[skysdad]

Mac if you don't mind keep us up to date. OFC

 

[topps coach]

I wish I could help you with some information but rest assured she will be in my prayers

 

[OldasdirtDevil]

I missed this somehow. Mac, knowing nothing about these procedures, I can't give you any advice on what to do, but you, your little girl, wife, and all your family are in my prayers. May God guide you and the doctor(s) down the correct path of treatment.

OFC

 

[Showenuff]

Mac my friend you and your family are in my prayers buddy.

 

[AlanInNJ]

I cannot help at all in answering your question, but as a father of a son with who struggles with a lifelong disease I can empathize. I am wishing you and your family strength and courage. Hang in there brother.

Alan

 

[Mac9192]

So sorry man. I agree, a full fusion would stop growth, although sometimes if they do it in stages it still allows some growth. Imo I'd go with the rods first and if not successful then proceed with fusion. MAGEC is a pretty new technology that cuts down on repeat surgery but I'm not sure if it could be used over 45 degree curvature.

I would like to talk to you SoCal. My email is [email protected]. Thanks

 

[2 skerz 3_rivals208847]

Thank God your daughter has parents like you and your wife!

 

[Mac9192]

I really appreciate everyone's kind words. My wife has done much more than I have through this, from doctor visits to then the spinal doctors. Getting a brace for her, X-rays, follow ups... Through all this though, the crazy thing is our daughter's been the most positive one of the bunch. Sometimes I feel she's the smartest one as well in our home.
As Sky has said, this board is therapy, and talking Duke ball or whatever crazy off the wall topics that come up probably has kept me from going crazier than I already am.
Once again guys, thanks for all of the kind words.

 

[DukeDenver]

Man, this really hit me in the gut when I read it the other day. I'm thinking great thoughts for you. Be strong for your family, my brother. We live in amazing times for medicine and science. I'm rooting for a great outcome.

 

[gottagonow]

Mac I hate to year of anyone with difficult health problems, especially children because good health is what they deserve. I hope for the very best for your family.

 

[LONMUNU]

I can't even begin to imagine what you are going through. Best wishes to you and your family.

 

[Mac9192]

To any of you interested, my wife, daughter (Hannah), and me are up here in Philadelphia. Surgery for Hannah is tomorrow morning. Appreciate all the nice comments from you guys, and please say a prayer for my princess that the surgery and healing goes smooth. I'm not gonna lie, I'm more nervous and stressed right now than I've ever been, but so far The Shriners have been as good as we've been told they were. Now I hope the surgeon and his team bring their A game.
Even though I've only met one of you, I feel like I know a lot of you. Thanks for reading this guys and I'll be in touch later.

 

[TheDude1]

Thoughts with you. It will work out, even if you are nervous right now... pretty soon all will be fine

 

[topps coach]

Prayers for the little one cannot imagine what you and your wife are going through

 

[pisgah101]

To any of you interested, my wife, daughter (Hannah), and me are up here in Philadelphia. Surgery for Hannah is tomorrow morning. Appreciate all the nice comments from you guys, and please say a prayer for my princess that the surgery and healing goes smooth. I'm not gonna lie, I'm more nervous and stressed right now than I've ever been, but so far The Shriners have been as good as we've been told they were. Now I hope the surgeon and his team bring their A game.
Even though I've only met one of you, I feel like I know a lot of you. Thanks for reading this guys and I'll be in touch later.

Prayers! Keep us updated

 

[CrazyHeel]

Prayers sent in the name of Jesus.

 

[hart2chesson]

Deep prayers my friend.....Thinking of Hannah, you and your wife....God's blessings!!!

OFC

 

[timo0402]

Best of luck with everything and may God bless your family. Be the rock!

 

[SoCal_Dukie3]

I would like to talk to you SoCal. My email is [email protected]. Thanks

Mac, no idea how I missed this post, I'm very sorry. I'll send you an email later today. Hope all is well.

 

[pavadukefan]

Best of luck Mac

 

[ttk2002]

One of my neighbors has hade the same thing. I can ask them if they can give any advice.

 

[dukiejay]

Thoughts and prayers sent.

 

[skysdad]

Prayers are still with you and family Mac. OFC

 

[Dattier]

Wow. Sorry to hear this. Prayers for your strength and perseverance through all of this, and most of all, for her healing.

I third the advice TheDude1 gave: Ask DBR and TDD.