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Thread: Khyler's cinncinatti appt

  1. #1
    Join Date
    Mar 2006
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    29

    Khyler's cinncinatti appt

    well im not sure if i would say that my appointment went well today or not???? Dr. Do was very nice she awsered all our questions and she was great with Khyler. she said that he was a canidate for the veptr and thats what she would recomend. she also said that khyler has kyposis? and that the veptr would not help that and they needed to determine which thing they needed to take care of first because the kyposis (im not spelling that right) could affect him nurologicaly. she is meeting with a group of doctor's on the 28th of June that specialze in all the area's of scoliosis they throw idea's around at each other i guess and she is going to talk to them and see what they have to say.... she also sent Dr. Cambell in texas Khyler's x-rays from today and she is going to see what he thinks.....in the mean time he is supposed to have a 3-D ct scan to make sure there are no fusions or tethered cord problems.......she said that she had never seen a case so seveare in someone so young and wanted to gather all the info she could on the different options and then get back with me to decide on the best route to take....... so i guess thing are moving in the right direction i just hate leaving there with nothing set because of the run around we always get.






































    Corina

  2. #2
    Join Date
    Jul 2005
    Location
    California
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    269
    Corina, I know it feels like you are still getting the run around but it sounds like things are moving in the right direction. I would suggest getting his CT scan scheduled and before you know it the 28th will be here. (That is next week). The worst thing she could have told you would be some information that she made up and was not exactly sure about. It is good to collaborate with world class surgeons who can all put their knowledge together and decide what needs to be done. Were you able to schedule a follow up appt with her or are you going to schedule that after the scan and the meeting? I hope that everything starts coming together for you. Good luck.
    Mandy

  3. #3
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    corina,

    well, at least things are moving forward, and you have another set of eyes looking at him. also, dr. do is consulting with others - dr. campbell is the inventor of the veptr. have you set up the 3-d ct scan? had khyler already had an mri done? i'm sorry if i asked that already. the mri should have detected a tethered cord if it was a full spinal and brain mri. also, couldn't she tell if there were any fusions from an x-ray? the only reason i'm questioning the ct scan is that it has a lot more radiation exposure than x-rays. i know that if it is needed then fine, but from other parents i've talked to, sometimes the orthos just aren't thinking about this and order more tests that they could have seen from the x-rays and mris that were already done.

    my only other suggestion would be to mail your information to dr. sanders at shriners in erie. what if khyler would still be a candidate for casting? i also know that dr. sanders does halo traction on severe scoliotic patients. did i give you the care coordinator's phone #? her name is mary jane smalley. her phone # is 800/873-5437 and ask for her. please give her a call so that you have someone else coming up for solutions to khyler's scoliosis. i'll also send you a private e-mail with dr. sander's and mary jane's e-mail addresses. they both respond very quickly to e-mail. or if you don't feel comfortable e-mailing him or mary jane, i would be happy to e-mail him for you. just let me know. i would like to help in any way that i can!

    my best,
    deshea

  4. #4
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    corina,

    i realized that i don't have your e-mail address. could you send me a private message through the nsf board? since this is a public board, i don't like writing e-mail addresses or websites here since i don't want anyone to get spam'ed.

    deshea

  5. #5
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Corina,

    I agree - things ARE moving forward and in the right direction for Khyler, IMHO. Dr. Do is doing the right things to get him the best recommendations possible.

    A 3-D CT scan will tell them a lot of information. It will tell them the size and shape and function-ability of the chest and surrounding areas. He also needs to have an MRI, if he hasn't had one already.

    My son, Braydon, is a VEPTR patient. I'd be happy to share our experiences with you. I think I've already emailed you once or twice, but if you lost my email address, it is boulderfam@hotmail.com

    Good luck and let us know what they say on the 28th.
    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/

  6. #6
    Join Date
    Sep 2003
    Location
    north of boston, ma
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    122
    carmell,

    thanks for clarifying the need for the 3-d ct scan. you definitely know better than i do!

    deshea

  7. #7
    Join Date
    Dec 2005
    Posts
    40
    Hi Corina

    Sounds like you may have lots of options now to consider which is good and bad (I only say bad cause hard to decide which is right for your child) tho whatever the Dr's most agree on would probably be best. I was just rereading old posts that I responded to you about Halo traction that my son had yrs ago. I was trying to get all your info straight-were they going to do the Halo traction at the one Hospital until they got too busy so cxld the surgery?

    Maybe that was just a blessing in disguise cause if the Veptr is best for him then that is good that all ended up this way. Sounds like Dr. Do is very thorough and you are on a good and hopefully right track now. Over the years some of Cole's Dr's have had meetings with other Dr's to throw out ideas and collaborate on which option to be best for him and I think that is a great thing to have done. Saves mom time also in not having to research and schedule appts yourself.

    I see now you are being told Khyler has Kyphosis also. Cole also has that, we were not told of it until he was about 5 yrs old and the new Ortho we transferred to told us Kyphoscoliosis. He has never had much trouble with that until recently as now it is noticeable. I think getting worse this yr. In January they did an expansion on his rod and also bent the rod to try and help straighten out the kyphosis (forward curve). We are due back in July at Ortho and I need to discuss in full the kyphosis as I can really notice it now and he cant stand straight. plus yesterday I took him to his ped for an unrelated issue and asked her opinion - she said yes she does notice the forward slant curve and the uneven shoulders so it may be time for another surgery.

    OK I kinda got off subject-sorry. Hope you are feeling a little more at peace with things and things continue to move quickly with some more definite answers. Keep us updated on the CT Scan and stuff. Good luck!

    STacey
    (SO Cal)
    Mom to Cole, 12 yrs old, congenital scoliosis and kyphosis

  8. #8
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Corina - I forgot to mention that, if done correctly, the VEPTR procedure CAN help with kyphosis. There have been several patients I know of who have had a significant kyphosis before VEPTR surgery, and NONE after. I would wait to hear what the "professionals" (ie, Drs. Campbell et al) say about Khyler before jumping to conclusions. I just have a feeling this will all work out for the best. Keep us posted.
    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
    Join Date
    Mar 2006
    Posts
    29
    thank you everyone for the encouragement sometimes i fell so frustrated that things arn't moving fast enough that i get dicouraged... Khyler has had an MRI but the Doctor who did it can't seem to find the report i do remember that he had no fusions and there was no tethered cord. I called around here today to see if anyone localy did 3-D MRI but it looks like i'll have to go to columbus, ohio
    Deshea i sent you a privatemessage with my e-mail let me know if you get it i would love to talk e-mail the dr in penn. the more prople working for khyler the better.....
    Corina

  10. #10
    Join Date
    Mar 2006
    Posts
    29
    also yes he was supposed to have traction starting in july trough november but they called to reschedule again and ar putting it off till August

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