Page 1 of 2 12 LastLast
Results 1 to 15 of 24

Thread: Any advice appreciated by battle weary family

  1. #1
    Join Date
    Feb 2007
    Posts
    8

    Any advice appreciated by battle weary family

    First, let me introduce my son, Hugo, who was first diagnosed with infantile idiopathic scoliosis in May, 1994 at age 2 with a 28 degree left thoracolumbar curve. August 15th that year he had his first visit with Miss Min Mehta, FRCS and a second x-ray, which showed that his curve had progressed to 48 degrees. She placed Hugo in his first plaster cast the next day. He and I returned to England from Dallas 9 times in the next 18 months, for him to be sedated, tractioned and casted, while his curve came down to 25 degrees. At this point ( he was 4), Miss Mehta said there no more she could do for him; it was time for Hugo to wear a brace and be treated locally.

    And so life went on; from age 4 to 10, Hugo wore a brace 23 hours a day and his curve gradually progressed to 36 degrees. Once again I researched; once again I thought I found the answer; once again Hugo did what I thought best. We went to Philadelphia, we met Dr Betz, and Hugo was approved for an investigational treatment, vertebral body stapling. It was painful, but for the last 5 years Hugo was brace free. Two months after the surgery (12/2001), his curve was in the teens. Over the next several years it ranged between 25 and 35 degrees, which we checked locally.

    Lately, I didn't think Hugo's back looked good. He's now 15. I called Shriner's in Philadelphia, and told them that he had had a growth spurt and that I thought he needed to be seen. We went on Tuesday (2/6/07), which was within a week of my call from Dallas, which was considerate, because Dr Betz wasn't there (he'll be back next week). The x-ray showed a 67 degree curve, one broken staple, and a Risser of 1. The doctor we saw couldn't suggest a treatment plan because Dr Betz needs to review Hugo's records. Dr Betz will be calling me next week. Meanwhile, I have alot of questions.

    From researching scoliosis over the last 13 years, I have culled the names of Dr Boachie and the Minnesota Spine Clinic as primo for fusion and reconstruction. Is there a surgeon who is tops for adolescent boys with a thoracolumbar scoliosis who want to be a tall as they possibly can be? That's what Hugo wants.

    A long shot, I know, but it doesn't hurt to ask. And it just gets more embarassing, so don't look if you're squeamish....

    The other pressing question I have which I have never seen addressed is...is male sexual performance effected after a spinal fusion? Is the missionary position an option? Can a pelvic thrust be done?

    If you read this far, thanks. If I can answer questions, please feel free to ask. As you can tell, I'm not particularly bashful. I know I've got to research all over again, and I'm going back to our local med school library tomorrow (the internet just teases with medical abstracts...I need the whole article). But I am a little bit weary, and would welcome suggestions, advice, or pointers. As all parents of a scoliotic child know, we would willingly take this condition from our child, but we can't. I am still brave for him, but this time, that he's 15 and wise, it was really hard to see him cry.

    I'm crying again, like I did a long time ago.

    Hugo's mom
    Camille

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140
    Camille,

    It's interesting and fascinating to read a first hand account from a parent who has dealt with infantile scoliosis many years later. I'm so sorry that vertebral stapling wasn't able to control your son's curve and I wish there were a better alternative to spinal fusion but alas that's where we are today. I've read amazing things about Dr. Boachie and I look forward to read what you decide. Which articles are you looking into ???



    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Camille,

    First of all, I am very sorry to hear that your son is now facing fusion. If you read my signature, you'll see that my son also had the stapling done 3 years ago. While the overall statistics on the stapling are very promising, I was told that there is no ironclad guarantee that he won't progress when he hits his growth spurt (which is also true for bracing, etc.) - but since he was stapled at 5 years of age, even if he does end up needing fusion at 15, then I bought him ten brace-free years! Your son, too, did not have to endure the brace during those difficult teenage and preteen years and that is something you should be happy that you were able to do for him. At least the stapling held his curve until he hit the big growth spurt. Otherwise, he would have been braced for those 5 years and who's to say that the result would have been any different. So be glad you gave him those 5 all-important brace-free years.

    I know Dr. Betz and I am sure he will have a plan that is in your son's best interest when you speak with him. He is one of the best and I would trust my child to him in a heartbeat. Not only is he an awesome surgeon, but he really cares about his patients, as if they were his own. The hospital in Philadelphia continues to be on the cutting edge when it comes to research and all the new surgical techniques. A lot of this comes from the fact that they are nonprofit and do not need insurance approval, etc. We travel from NY to Philadelphia because we feel our son is getting the best care there.

    I wish you all the best whatever you decide. You and your son will get through this (with a few tears, no doubt - for which my heart goes out to you) - and remember we are all here for you.

    Best,
    Last edited by mariaf; 02-09-2007 at 11:47 AM.
    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/

  4. #4
    Join Date
    May 2005
    Posts
    776
    cannot see why sexual performance should be effected, unless there are complications. Re positions etc; there are many ways to skin a cat, and many roads which lead to Rome, with other words, even if one way of doing things turns out to be less suitable, i am sure there will a few more to choose from

  5. #5
    Join Date
    Mar 2005
    Location
    novato, ca
    Posts
    83
    Very interesting on the stapling. My daughter was given that as an option when we first dicussed treatment with her doctor. I just felt it wasn't right for us, we went with bracing and proceeded to growth rods.
    I can't imagine that it will have any effect on your son's sex life. I haven't known any who has had issues. I even know of a police officer who has had a fusion and three kids!
    Emily

  6. #6
    Join Date
    Feb 2007
    Posts
    8

    Thanks

    Appreciate the support. Will post again when I know more.

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    Camille,
    I wonder if the broken staple had anything to do with the recent rapid progression? If he's a Risser 1 and still has lots of growth left I wonder if fixing the staple would help? Did Miss Mehta mention anything about rotation of his vertebrae after casting? Another thing, after serial casting you state that Hugo's curve was 25 degrees, was that out of cast ? His curve progressed during the next few years to 35 degrees and I was wondering if that figure is out of brace or inbrace correction. Sorry if these questions are all over the place, I'm just trying to read the tea leaves since we have many more years ahead of us...


    Gerbo,
    I could just imagine the talk you had with your son on the birds and the bees... many ways to skin a cat and different roads to Rome LOL!!!!




    *
    Last edited by Celia; 02-11-2007 at 09:30 AM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  8. #8
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Camille,
    Just wondering if you're still in Dallas? If so, are you considering anyone here in Texas? We're looking for our daughter who is 14. She has a lumbar curve and I'm especially anxious about the fact that she will lose most of her flexibility because of fusion level. Have you looked at Texas Scottish Rite? I've heard a lot of good things about them too. We have excellent insurance and could go pretty much anywhere but would prefer to stay local if possible. I haven't heard about the Minn. clinic, is it also referred to Twin Cities Spine Center? We have appts. here in Houston with Dr. Marco and Dr. Hanson.

    I've also had that nagging question about sex after fusion, I assume it's accomplished somehow because plenty of women here have children after spinal fusion. I understand your concerns and tears, I have plenty of both.
    Your son has had a difficult time of it, I hope this will help bring an end to it.
    Sherie

  9. #9
    Join Date
    May 2005
    Posts
    776
    I could just imagine the talk you had with your son on the birds and the bees
    it's more like:

    Son, let's talk about .....etc
    OK dad, what would you like to know

  10. #10
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Camille,

    Ditto what everyone else said. Having a Risser of 1 would mean I'd want to do whatever possible to avoid an early fusion. You've been down the road too long with that spine, you don't want to do the wrong fusion and have crankshaft problems later or any problems later. There are many excellent orthopedic surgeons in the USA. Although, I'm sure if you get opinions from 10 surgeons, you will have 10 very differing recommendations. It will then be your job to make the best choice for him, based on those recommendations.

    My son had anterior/posterior fusion as an infant (fused from T5-L1). His spine is very rigid and his trunk is much shorter than it should be (at least 5 inches so far). He had VEPTR implants (adjustable rods) at age 6yrs old that is keeping his spine stable and preventing rotation and keeping his right lung open as much as possible. My point is there are many variables involved and finding the right doc who will help you sort it all out is best. Dr. Betz is wonderful, but I've heard he's recovering from shoulder surgery and will not be doing any surgeries until at least September. I'm not sure if Shriners in Philly has compensated for his absence, I'm sure they have.

    My best,
    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/

  11. #11
    Join Date
    Feb 2007
    Posts
    8

    Update on Hugo

    First, to answer questions--all of Hugo's x-rays have been out of brace. And yes, Miss Mehta did say that Hugo has a vertabra that twists forward, which is why she could not get his curve lower than 25. His curve is less flexible than some.

    I did ask in Philly about fixing the broken staple and/or re-stapling him, but the doc said they don't staple curves above 50, and since the stapling 'failed' already, there would be no reason to repeat it.

    Good to know about Dr Betz. I had assumed he was at a conference, when the docs in Philly said he would be back on Monday. I called today because I hadn't heard from him this week, and you are correct. The receptionist said that he was out due to surgery.

    I took Hugo to another orthopedist on Monday. He said that Hugo is noticably weaker on his right side of his body (his curve is a left thoracolumbar), and that he thought the best place for us was Scottish Rite because they have an excellent neurologist on staff. So of course I'm wondering is this related to the scoliosis, or a separate issue?

    We have an appointment on Tuesday with Dr Birch at Scottish Rite. Do we really have a choice to wait on surgery, with a 67 degree curve?

    Minnesota Spine CLinic is the Twin Cities one now, I think.

    Thanks for your input and questions.

    Camille

  12. #12
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Carmell (and Camille),

    To answer your questions, I'm told that there are 5 extremely qualified spinal surgeons performing surgeries at Shriners Philadelphia in Dr. Betz's absence. One is Dr. Clements. Terry Diamond from Shriners said that Dr. Clements treats both children and adults and that she has so much faith in him that she sent her own husband to him several years ago.

    Another would be Dr. D'Andrea (who was David's surgeon and is absolutely awesome). Her initial part-time arrangement provided for her to be at Shriners 4-5 days per month - but I know, for instance, that she added several days in April, so I imagine she's picking up some of the slack.

    I also know of Dr. Samdani who is also extremely well-regarded - and I did not get the names of the two others but one may be the assistant chief of staff under Dr. Betz.

    I was also told that during his rehab from surgery, while he obviously will not be performing surgeries, Dr. Betz will be present in the OR for consultation, as needed.

    Just thought I'd share what I have learned - hopefully someone will find it useful.
    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/

  13. #13
    Join Date
    Feb 2007
    Posts
    8

    Another update on Hugo

    Spoke to Dr Betz on Friday. He said that Hugo & I had fought the good fight. A 2 year old with a 48 degree curve should be in excess of 120 at age 15 with out a fusion. We (Hugo) has a 67 degree at age 15. Also, he said that males begin losing flexibility at age 16, so Hugo would get a better correction now. Also, I asked about him not being able to operate until September. Dr Betz said he would be in the OR with his 'team,' whom he would trust with his daughter. So I am calling in the morning to schedule at Shriner's. We will go to our appt at Scottish Rite tomorrow, for another opinion.

    Thanks for the input. Am still listening.

    Camille

  14. #14
    Join Date
    Mar 2004
    Posts
    1,140
    Camille,

    You did an AMAZING job for your son!! He may never realize the full extent of it and how very VERY lucky he is to have you as a mom. If fusion is the next step I guess pertinent questions would be how much to fuse and how much correction is anticipated.


    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  15. #15
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Camille,

    Everything Dr. Betz said makes perfect sense to me. Hugo will be in the very best of hands with the team that Dr. Betz has assembled in Philadelphia.

    Good luck and 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/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •