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Thread: New Here...

  1. #16
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Shriners will usually help with a motel if needed. But, if you ask the hospital about it, they will refer you to a Shrine Club, as that is where the funds come from. We have a specific person at our Shrine Club that we call when we are about 10 days before we travel.

  2. #17
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    22
    Thanks for all the information.. I'm definitely going in to this meeting with the dr feeling a lot better about what I'm expecting..

    For those of you whom went to Shriners.. did you have to get a local Shriner's to back you and when you applied, did you also have to make sure you had the scans, etc from the original dr so they could review it that way.. or did they actually take a look at your situation and made their own determination?

    Erin

  3. #18
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    Erin,
    You can apply to the Shrine Hospital of your choice directly, over the phone, if you wish. It doesn't matter. My husband is a Shriner also and has signed applications for those that need them. When we applied we had another Shriner sign our application. But, you do not need to have a Shriner's signature to be accepted.

    We did have our daughters doctor make his recommendations to the Shrine Hospital. He didn't do any x-rays because he knew the hospital would do them again. He also recommended that all siblings be examined too. Low and behold, all three of our daugthers have scoliosis or kyphosis. Guess who they got it from? Me. We just found out last summer that I have scoliosis. Just to let you know how easily it is missed, my mother was in the medical profession, a registered nurse, in a pediatrician's office while I was growing up. Hopefully, mine won't cause any problems as I grow older. I am 45 and do pretty much anything I want without pain. However, I do work at keeping my back supple and back muscles strong.

    We didn't have any x-rays, mri's, or anything like that for our first appointment. They did all of that for us at Shriners. You do not need these things in order to get into Shriners.

    Keep us posted about your appointment. If it comes down to surgery, something very important is a hospital that specializes in children. I really feel the kids get way better care at a child oriented hospital. The nice thing about the Shrine Hospital is they only deal with children and if your child is sick (cold or flu) they don't even want them there for an appointment. We've had to cancel appointments because of colds/flu. They are most appreciative when you cancel to keep your germs at home. They don't want their fragile healthed patients infected and for the most part all the children they deal with are relatively healthy considering their various orthopedic issues. If you end up at a Shrine Hospital for surgery, you will notice the children are not sick, they are only there because they had surgery.

    Has anyone told you that your child will be treated at the Shrine Hospital until their 21st birthday, at no charge, for whatever they were diagnosed for. This is true for other orthopedic problems that may come up along the way and is diagnosed before they are 18 years old.

    Things to be prepared for at Shriners - sometimes the wait can be long. You have to be patient and realize maybe there is another child that needs treatment more urgently than you own. It is a hard concept to hold on to, but it really helped us in understanding. If you are scheduled for a surgery, it can be rescheduled at a moments notice because of maybe a child that has cancer has a short window to have some sort of orthopedic surgery. Our daughter's surgery was originally scheduled for 3/15/05. It was cancelled on 02/25/05, only to be rescheduled for the orginal date on 02/28/05. So, as you can see things can change dramatically. The best part was we were told it would be at least 12 months before her surgery. She had her surgery almost 6 months to the date of her diagnosis. Check ups can get rescheduled too. We just got a notice that an appointment on 9/28 has been rescheduled for 9/21. I guess we have learned to just go with the flow and that it is a small price to pay for such wonderful care.

    Sorry this is so long winded.
    Nikki

  4. #19
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    22
    Thanks for all the support. Today's appointment was LOOONG.. waiting that is...I personally wouldn't have cared, but it was 2 hours before I got in the back and it was another 1 1/2 before I got out. All for about 15 minutes between the PA and the dr.

    First off, I asked her if she thought Em should go to Philly to see Dr. Betz. Dr. Blakemore told me if she were to actually refer her to anyone, it would be the dr in San Antoinio who came up with the VEPTR procedure.

    Basically fusion is out. There are too many anomolies in her back. They would like to do the VEPTR (not sure I'm spelling it correctly) on her, but I pointed out about her still having to have more heart surgeries.. so I guess they'll ask the heart dr's on whether that procedure will interfer with the heart surgeries.

    If it does, it will be the rods. So right now, we're just waiting, as Em is only 3 months old atm. They'll do xrays every 3 months to keep an eye on her curvature as she grows.

    As far as the dr, she seems like she knows what she's doing. She spent time with both the dr in San Antoinio and also worked with Dr. Betz. Since right now there's not much they can do, I'm going to hold off for the time being. I'm just trying to get back to work after being off on maternity leave and between that an all the appointments prior and after, I'm so in the hole with leave.

    I'll keep you posted on any new updates on her

    Erin

  5. #20
    Join Date
    Jan 2006
    Posts
    78
    Hi, Kerina
    I can certainly relate to long doctor visits. I don't know what it is they must overbook patients. The children's hospital my son goes to has just gotten too big. I've gotten to the point where I'll just leave with my son if I have to wait too long as long as nothing important is going on with him. I know it can be frustrating. They act like you got all day! I hope your transition back to work goes smoothly. I also know what it is like to have all your vacation time eaten away. It is tough. I'm hoping I was able to at least salvage a few hours of my PTO before it ran out. At least I was able to return to work earlier since my son did well with his surgery and it helps that I do my work from home. If I didn't work from home I would be in big trouble no doubt. I wish you the best and take everything one step at a time. Which it sounds like you are doing.

  6. #21
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Kerina,

    I can certainly understand your taking a deep breath for the moment. I'm a bit surprised that the dr. and PA combined only spent 15 minutes with your daughter (if I understood you correctly).

    I guess I have been lucky. I have never had an unusually long wait at the Shriners hospital, at least the one in Philly. We don't go right in - but we don't wait for hours either (as I've heard is the case at some other hospitals -not just Shriners but hospitals in general). And if you did decide to go there, you do not need anyone (a shriner) to sponsor you. We didn't have one and were never even asked about this.

    I believe Carmell knows an awful lot about the VEPTR procedure so you are very fortunate as I am sure she will be happy to share it all with you. If you trust Dr. Blakemore and wish to travel to San Antonio to see the doctor he recommends, I can certainly understand that. I also would trust Dr. Betz with ANYTHING to do with the spine since he is considered one of the world's top spinal surgeons. I don't think anyone would argue with that assessment of him.

    Of course, it's most important to do what you are comfortable with. Whatever you choose, please keep us posted - and I wish you all the very best

    hugs,
    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/

  7. #22
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Erin,

    Thanks for the update. I wish you didn't have to wait so long to see the doc and PA. Sometimes we get so frustrated waiting that it overshadows the purpose of the appointment. Try not to let that happen.

    Braydon is very much a VEPTR success story! I'd be happy to share our experiences with you. Dr. Campbell and his team in San Antonio are very good (Braydon had his implant surgery there). Dr. Betz is also very good. Both are equally experienced in treating kids who qualify for VEPTR surgery.

    My gut feeling about Em seeing a VEPTR surgeon (either Campbell or Betz) is that timing may be important for her. The San Antonio site is so overloaded with patients. You may be waiting many months for an evaluation appointment. Then, many more months for an implant date (if she's accepted as a patient). Dr. Betz (and his team, including Dr. D'Andrea who is wonderful) may have better timing to see her.

    If I were in your shoes, I would go to Philly. They have LOTS of experience with kids who have multiple spine/chest anomalies. I don't think you could go wrong. You could make an appointment with both places, if you need to, but I think that's unnecessary. You will be in great hands wherever you choose to go.

    Let us know if you have any more questions.
    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/

  8. #23
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    22
    Well I'm not sure she'll qualify for the VEPTR procedure. She had pulmunary artresia and tetrology of fallot, which means she'll be having at least 2 more heart surgeries that we know of.. so because of that I'm not sure the rib portion of the VEPTR would work..

    But who knows..the Dr. was supposed to go and speak with the cardiac surgeon as well as the cardiologist at Children's to get some feedback from them on whether or not it would be possible to do..

    yes, I was a little frustrated on the waiting time.. more for Em.. I really needed to change her diaper and they won't let you do it in the waiting room and I was afraid of Murphy's law of had I left to go to the bathroom to change it, they would have called my name..

    Then I was frustrated at the Dr... it seemed the PA knew more about Emily than the Dr did..plus when I started asking questions concerning the curvature and the exact parts of the spine that didn't grow, etc.. they couldn't answer me.. they said it would be in my letter when they sent it out.

    My county I live in has a special program that is federal funded to help us get PT/OTs etc to keep Emily on the correct developmental path.. anyone have any good suggestions as to what kind of PT or OT stuff I should be working with her on while she's still waiting on surgery? Do you think it will help in the long run?

    Thanks for listening

  9. #24
    Join Date
    Jan 2006
    Posts
    78
    Hi, Kerina
    Is she in the birth-3 program for PT/OT? I'm assuming that is what you mean. If she has started seeing PT/OT I would stay and watch the therapists work with her and you can see what kind of things they are working on with her and ask questions. Also the therapists should give you a home therapy plan of things to work on with her.

  10. #25
    Join Date
    Jul 2006
    Location
    Pennsylvania
    Posts
    22
    Update - We finally got a letter from the dr explaining a few things.. would like to hear your opinion on osome things...

    They said from the chest xray they measured a right 60-degree thoracolumbar curve.

    Now for the part that concerns me:

    The last option, which we feel would most likely be the best option for Emily, would be to use a VEPTR. This is similar to the growing rods in that it allows us to stabilize the curve while allowing growth potential; however, the VEPTR construct attaches from the spine to the chest walls, and therefore, it would allow us to distract the ribs on the collapsed side, which could lead to increased improvement. Ideally, this surgery would be performed no sooner than Emily's first birthday.

    The goals of Emily's scoliosis management would be to maximize the growth of her spine while minimizing the progression of her curve and delaying the fusion to allow increased trunk growth leading to improved lung function. Ideally, we would perform the dfinitive spine fusion around Emily's eighth birthday if possible. If Emily's parents were to agree to the VEPTR or growing rod treatment, they would need to be lengthened, to allow for trunk growth , in the operating room every six months

    Now my question is for those whom have had this procedure, is it an outpatient procedure to lengthen the rods? And who else thinks that fusion at 8 years old is a problem?

    We got the results of the MRI back - the three things they were looking for - she doesn't have. They said her spinal column was normal.

    Any information would be helpful!
    -------------------------------------
    Erin - Mother to Emily who was born with:

    1) Pulumnary Artresia/Tetralogy of Fallot
    - 2 conduit replacement surgeries
    - 2 stents inserted in conduit

    2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)

    3) Cystic Kidneys
    - Right one non-functioning
    - Left one growing and working well

  11. #26
    Join Date
    Jan 2006
    Posts
    78
    Hi, Kerina
    I know that by 8 years old the lungs are fully mature. So spinal fusion could be considered at that time.

  12. #27
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Erin,

    Interesting - a very detailed dictation from the doc. Thanks for sharing with us. This doc is correct saying that the VEPTR procedure addresses lung function issues when the growing rod does not. IMHO, there is no question that you can rule out growing rods for Emily.

    <<...is it an outpatient procedure to lengthen the rods?>>

    The VEPTR procedure is being perfected more and more everyday. Some of the kids are able to have their expansions as outpatient (go home the same day). The surgery is still major surgery using general anesthesia. Braydon typically stays in the hospital 2 nights after expansions (one time out of 9 he was able to go home the next day).

    <<And who else thinks that fusion at 8 years old is a problem?>>

    ME!!! Fusion that young - before the spine has reached skeletal maturity - has so many potential complication factors. If the VEPTR is done correctly, and the patient doesn't have any complications (like Braydon) the VEPTR device should continue to be expanded until the child is skeletally mature (around age 14-ish for girls). Braydon was "older" when he had his VEPTR implants (he was 6yrs old) but in 5+ years, he is still doing very well. His skin is still extremely healthy. The incisions heal very well and he has had no problems with having back surgery every 6 months. (I know I sound like a walking commercial for the VEPTR, but the benefits Braydon has received are more than we had ever hoped for.)

    So good to hear the MRI was normal! A huge relief, I'm sure. Take care and please email me if you want to talk more details. I'd love to know the surgeon suggesting VEPTR and other details. my email is boulderfam@hotmail.com
    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/

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