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Thread: Not new, but very confused.

  1. #1
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    Question Not new, but very confused.

    My son, Matthew is 5 years old. He has been casted since the age of one. He also has Ehlers- Danlos Syndrome. Since Nov. 2006 Matt has been treated at Shriners in Erie. In Jan 08, his doctor relocated to Rochester, NY, which happened to be my home town until Jan. 07. Since, Jan. 08 Matt has been in the brace. About 4 weeks ago we met with a doctor from Philadelphia, who was at Erie that day. He informed us that Matts curve was getting worse and that he probably needed surgery (VEPTR) within the next year. I was advised to go to Philadelphia to meet the doctors and to see the facility. Meanwhile, they put him in a new cast at that time.

    Unfortunately, I don't know what happened to the cast, but it was huge!! I called, and scheduled him for a brace fitting. I also called my old doctor up in Rochester, NY for a second opinion.

    He got his new brace last week and we me with the doctor in Rochester on Monday of this week.
    After taking some new xrays, it showed that his curve has gotten worse and now has the "S" curve. He agreed with the fact that he needs surgery in the near future. Not sure if it would be the Veptr or growing rods.
    In the mean time, we go back to Rochester next week to get a new cast put on and to see if we can hold he for a while longer. He is also doing additional testing - Pulmonary Funtion Test and a CT.

    I wasn't really expected to hear this new. I new that he would definitely need rods when he was older, but not this soon.

    Trying to get some questions together to ask the doctor next week. Right now, I'm totally confused and don't know what to even ask him. Any information, would be greatly appreciated.

    Thanks,

    Sue & Matt
    Sue


  2. #2
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    Big hugs to you, Sue. Please try to take some deep breaths. This is not an emergency. You have time to research and make appointments and find the RIGHT plan for Matt. More than one or two opinions may be necessary because this is NOT an easy decision. There are several options to choose from, and no one is the right one for all cases. You need to be able to sit down and have a heart-to-heart with a very experienced ped. ortho. to discuss the options and his/her recommendations.

    My Braydon is a VEPTR patient. He had his VEPTR rods placed when he was 6yrs old (Aug. 2001). He will turn 13 this month and is doing very well! He is active and healthy and lives life to the fullest. I'd be happy to share our VEPTR experiences with you. I do believe having a consultation with a well-trained VEPTR surgeon is important. Shriners in Philly and Boston Children's are two very good places - places I would trust my child's life.

    Growing rods and VEPTR are similar, but NOT the same. You need to understand the design of each device and know how it will apply to Matt's curved spine. One may be more right for him than the other. I would encourage you to avoid fusion of any kind, unless he has a single area that may benefit from a very minimal fusion. He has so much growth remaining. You don't want to risk losing any more vertical height.

    Braydon had his first pulmonary function test (PFT) at age 5. He did very well (he tends to be obedient most the time) and follows instruction well. It is not an easy test, so if he struggles with it, that's okay. Don't worry. It is important to get a baseline PFT to make sure the future lung capacity doesn't decrease.

    A chest CT scan will help them determine the structure of the lungs and chestwall and many things. Braydon has a CT scan done annually.

    Let me know if I can help. I know how hard this is for us parents to accept - that our child needs MAJOR invasive surgery of some kind. Making the right decision is hard. Braydon's ortho has a very wise comment he tells parents - "the decision is harder than the incision". Once you've made the decision for surgery, the rest is easy. It's not rocket science or brain surgery. But it IS YOUR CHILD. Having 100% confidence in the surgeon is very important too. The pre- and post- surgery care is vital in a good/successful outcome. Lots to consider. My email is boulderfam@hotmail.com I look forward to hearing from you.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  3. #3
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    Not new, but confused

    Thanks for the information. The doctor I went to see in Rochester, NY was Dr. Sanders who came from Shriners Hospital in Erie. I know that he is an excellent doctor and Matt feels very comfortable with him as I do to. Dr. Sanders is going to Texas next month to train again with Dr. Campbell with the Veptr. He will be doing this procedure at Strong Memorial Hospital in Rochester , very soon..


    Sue
    Sue


  4. #4
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    It's great to hear Dr. Sanders is going to TX to do the official VEPTR training. Many young children will benefit from that. I know Dr. Sanders (and his colleagues) are very involved in treatment for infantile scoliosis/casting, etc. He seems to love his job very much. I know MANY patients from Shriners in Erie were sad to see him go.

    Some families who have kids with complicated medical conditions will go to one of the established VEPTR hospitals for the implant surgery, then stay local for the expansion surgeries (which are less invasive). The post-op care is as important as the skill of the surgeon (if not more). Hopefully the hospital there will be open to parental and the surgeon's input about how to care for these kids. They are NOT fusion patients so some medications (ie anti-inflammatory meds) CAN be used for VEPTR kids. Little things like this, that make recovery go more smoothly.

    I'm glad you are in good hands. It is a long journey, but you will make it. If you want to learn more about the VEPTR procedure, check out the website and messageboard at http://www.veptr.com There are kids with VERY different and extreme medical backgrounds, and some generic kids who "just" have a curved spine. Lots of different examples. My best to you.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
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    Matthew

    Well, Matt just came out of a cast again. He didn't even make it a week . It seems that his body is resisting them, and at this point, there not doing him any justice.

    On July 3rd.. Matt is scheduled to have the growing rods put in. Very nervous and scared.

    Sue
    Sue


  6. #6
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    Hi Sue,

    I'm very sorry to hear the cast isn't doing its job and his little body doesn't like it. At least you tried (I know, that doesn't make you feel any better).

    What growing rods will they be placing in July? Who will be doing the surgery? Did he have the PFTs and other testing done? How did all that go?

    Good luck and try to take some deep breaths. You will do fine. Matt will do fine too. I promise. Let me know if I can help with anything.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #7
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    Matthew

    Dr. Sanders will be doing the surgery, He is putting in the double growing rods. Are ther different types? I'm sure he mentioned it, just don't remember. His PFT showed that he has decreased lung volume and the CT showed nothing abnormal other than the scoliosis. The decreased lung volume isn't related to asthma but possibly from the scoliosis or Ehlers-Danlos.

    Sue
    Sue


  8. #8
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    Hi Sue,

    Thanks for the additional information. I know you think very highly of Dr. Sanders (he has done WONDERS for many infants and others with unique scoliosis issues) but I would hope you can get at least another opinion/recommendation from a well-trained VEPTR surgeon. Since Matt has documented reduced lung function, the VEPTR is designed to address this much better than the growing rods. The growing rods do not affect the size/function of the chest. Growing rods are placed along the spine, touching the spine entirely up and down from the attachment sites. VEPTR rods do not. I don't know if VEPTR rods are the right recommendation for him, but you need to at least know what options ARE available. Did you ask Dr. Sanders about VEPTR for Matt, specifically? I would hope he's not recommending growing rods *just* because he hasn't completed VEPTR training. Not good enough excuse IMHO.

    A phone call or email to Dr. Betz in Philly, Dr. Emans in Boston, Dr. Smith in SLC, etc. may give you the peace of mind you need to make the best decision for Matt. It is not an easy decision to be made, but with his complex medical issues, you want to make sure its the right decision, the first time. My best to you.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  9. #9
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    To add to what Carmell said, a second and/or third opinion can't hurt. My experience has been with Dr. Betz and has been VERY positive. His PA's name is Janet Cerrone and she can be reached at:

    janetcerrone@comcast.net

    or by calling 1-800-281-4050. Dr. Betz's team at Shriners, Philly, does all the latest procedures including the VEPTR II, etc. You could not be in better hands. If Dr. Emans or Dr. Smith are more convenient for you, I have heard great things about them as well although I have no personal experience with either but I would recommend any of these orthos in a heartbeat as they are among the best of the best.

    From what I have heard, I would also try to see if VEPTR "might" be a better option.

    I'm not saying the growing rods are a bad idea (not at all), or that you should second-guess your current doc, but it is often a good idea to get several opinions.

    Best of luck to you!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
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    Matthew

    Well, were off to Rochester tomorrow for some Neuromonitoring before surgery. Then back again on Monday, for a Pulmonary consult regarding his decreased pulmonary function test. July 3rd. were scheduled for surgery. After seeing 3 doctors, we feel very comfortable with our decision and the surgeon performing the surgery.

    Sue & Matt
    Sue


  11. #11
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    Matt's surgery

    Matthew had surgery on June 25, 2008 with Dr. Sanders in Rochester.
    He is doing great!!! His curve is currently down to 36'. Still in a brace and looking forward to getting out of it. He is due to go in for some lengthening in December. He grew 3" since the surgery, he was so excited!

    Thanks for all the support we received,

    Sue & Matt
    Sue


  12. #12
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    Hi Sue,

    Thanks for the update. I'm very happy to hear Matt is doing well - and to grow 3" is GREAT! Good for him. Best wishes with you upcoming expansion in December. Remind us so we can send another Best Wishes to you both.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  13. #13
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    Yay!! I'm so happy to hear Matt is doing well. Please keep us posted!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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