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Member
Posts: 8
| Hello!
My name is Rebecca and we found out on Friday (6/18) that our son, Tristan needs a VEPTR. We live in Michigan and the doctors that have been recommended to us are out of state. Any idea how BC/BS will factor in on a surgery out of state?
Here is Tristan's story:
My husband has a solitare kidney and I have CCA - congenital contractural arachnodactyly (aka Beal's Syndrome.)
Our little Tristan inherited both the solitare kidney, CCA, PLUS a hemi-vertebrae and an extra rib.
He is now 21 months old and our ortho doctor (Zaltz) doesn't think we can wait much longer to remove the hemi-vertebrae and rib and fuse - because the curvature is getting worse and worse. After consulting with other doctors, Dr. Zaltz thinks we need to do a VEPTR first. He has recommended Dr. Flynn (Phil), Dr. Emans (Boston), and Dr. Lenke (St. Louis). Apparently, there are two doctors who are in the state of Michigan that have done VEPTRs, but it doesn't sound like they have done many.
Any guidance or suggestions would be appreciated. We are confident that God is going to put the right people in our path and give us peace during this time.
Thanks! |
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Member
Posts: 14
| My son sees Dr. Cassidy out of Grand Rapids, MI and I can not say enought positive things about him. I just found this past week (my son had another lengthening) that he's been doing the procedure for about 4 years. I can't image traveling out of state. I don't have much insight on the insurance issue but if you want any more info about Dr. Cassidy and our experience with him just let me know (dyanasimmons@projectrehab.org). |
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Member
Posts: 8
| I would love to know more about your son's condition...if you don't mind telling me. Also, how did your son stay in the hospital after getting the VEPTR?
Thanks for your time.
Rebecca |
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Member
Posts: 14
| Rebecca,
My son has severe congenital scoliosis with a spinal deformity. Dr. Cassidy actually had a 3D model made of Jack's back in hopes of getting a better understanding of the deformity but it's still not clear. There is a possible "bar" where 5-6 vertebrae are fused together but there's also a possibility of hemi-vertebrae. The MRI isn't able to show clearly what is going on. At the inital placement he was a 90 degree curve and went to a 30 degree after. But due to the deformity, which is fighting the rods, he's maintaining at a 55 degree.
My son has tracheal/bronchial malacia as well which causes his airways to collapse (he's trached) and also has chronic lung disease. The first placement of the rods kept him in the hospital for 2 weeks due to his other health issues. His first lengthening was a 2-3 day stay and each lengthening after that has been a 24 hour stay. As soon as his pain is being managed by oral meds he's discharged.
I hope this helps! |
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Expert
Posts: 3650
    
Location: Plymouth, Pennsylvania | WELCOME TO THE BOARD, AND THANK YOU FOR SHARING TRISTAN WITH US...
WE STARTED THIS 'VEPTR', OVER 1O YEAR AGO....
ZOE WAS JUST 2 1/2, AND AT THE TIME THERE WERE JUST 3 SITES UP AND RUNNING...AND WE CHOOSE BOSTON, WITH DR. EMANS...
DR. CAMPBELL DID JOIN HIM IN BOSTON FOR ZOES FIRST 3 SURGERIES AS WELL...
IT WAS A GOOD CHOICE...LEAVING THE STATE OF PENNSYLVANIA TO GO TO BOSTON, THERE WERE QUESTIONS REGARDING OUR MEDICAL INSURANCE, BUT AT THE TIME, AND FOR MANY YEARS ZOE WAS COVERED BY BLUE CROSS AND BLUE SHIELD, AND IT WAS NEVER TRULY AS OBSTACLE...GOING TO BOSTON HOWEVER, COST A GREAT DEAL IN 'OUT OF POCKET' EXPENSES, HOTELS, ECT...HOWEVER TODAY, MANY YEARS LATTER, THINGS HAVE IMPROVED, AND 'SOME' FAMILIES HAVE THE ABILITY TO STAY IN HOUSING NOW MADE AVAILABLE TO SOME NEAR THE HOSPITAL...."DEVIN NICOLE HOUSE', AND 'THE YAWKEY HOUSE'...
TRAVELING FOR CARE FOR THE 'VEPTRS' FOR MOST OF US HAVE BEEN A WAY OF LIFE....MANY HAVING TO GO BY AIR....MANY DRIVING DAYS....BUT IT WILL ALL COME DOWN TO WHAT IS BEST AND WHO IS BEST FOR 'TRISTAN'...AND FOR YOU...
YOU MENTION YOUR SON HAS 'MUTIBLE SYSTEM ANOMOLIES', AND THIS SYNDROME IS ONE I HAVE NOT HEARD OF...JUST CURIOUS....HAS ANYONE EVERY MENTIONED 'VATER OR VACTERL' TO YOU?....
I LOOK FORWARD TO HEARING MORE FROM YOU....
GOD BLESS... |
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Member
Posts: 8
| I hadn't heard of a "VACTERL" before, but I just read about it and it sort of makes sense. Although, since some of Tristan's issues are genetic from my husband and I, it may just be a coincidence.
Thank you for the information about the insurance. |
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Regular
Posts: 76
Location: Phoenix, AZ | Hello, and welcome to the board. We have a PPO, and don't have to get referrals to see specialists. I think that most people with HMO's, do have to get a referral. It seems like every company's policy is different and it just depends what they purchase fior you. It shouldn't really matter if they are out of state... what does matter is if they are covered under insurance. We live in AZ and are flying to PA to see Dr. Campbell, the invetor of the veptr. The hospital and all those doctors are covered under Aetna, our new insurance. I think BCBS would have most of these doctors as well, but just to be sure, I would ask if the hospital you are going to is a covered hospital, then go down the list with BCBS and aske if each doctor is an IN NETWORK provider. I don't know how long you have been dealing with insurance, but personally, I would rather have a root canal. My husband's insurance has changed every year for at least the last three. Although our son reaches our deductable of $2400 by May, I am still dealing with insurance now. I have learned to keep my own tally of everything and have caught at least 5 mistakes since he has been born. He is now 16 months. BCBS is a huge insurance company and I would think that most providers would take them. Let us know if you will be in PA. How old is Tristan? I would love to hear more about him. You can send a private message, or continue with this thread. Good luck with it!
Edited by kchristensen 2010-06-25 4:32 PM
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Member
Posts: 8
| We have decided to go ahead with the surgical procedures for Tristan with Dr. Flynn (Philadelphia). Tristan is 21 months old today...and he will be having the surgery near his 2nd birthday.
Thanks for all your comments and advice. Any suggestions on what we should take with us for the surgery? Things that will help Tristan be comfortable? |
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Member
Posts: 8
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Edited by ztaredhead 2010-07-07 11:09 AM
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Expert
Posts: 3650
Location: Plymouth, Pennsylvania | WE WILL KEEP TRISTAN IN OUR THOUGHTS AND PRAYERS...
PLEASE KEEP US POSTED...GOD BLESS... |
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Regular
Posts: 76
Location: Phoenix, AZ | Good luck with everything. I would suggest a soft blanket from home and a stuffed toy for snuggling. |
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Tristan Needs a VEPTR
