So glad I found you guys!

[Pooka1]

Spiny Mouse,

I admire your attitude very much. You are handling this so well. I think you will be amazed to actually talk to pediatric orthopedic surgeon who knows spine. They may even have more than one surgeon consulting. All your questions will be answered to the extent of what knowledge exists now.

You and your son will be stars at this.

Sharon

[Elisa]

Spiny Mouse,

I admire your attitude very much. You are handling this so well. I think you will be amazed to actually talk to pediatric orthopedic surgeon who knows spine. They may even have more than one surgeon consulting. All your questions will be answered to the extent of what knowledge exists now.

You and your son will be stars at this.

Sharon

Thanks Sharon! I am trying my best to cope with all of this as well as learn as much as possible about this disease as I can and will do my best to share my experiences with others in hopes of helping those who travelling down a similar road. You guys were/are there for me so I feel the need to be there for others.

Even if my son ends up having surgery, I won't feel as though I'm done with it all and can close this bookmark b/c I feel the need to keep up to date with things and encourage those who are just beginning this journey like myself, my family and of course our wonderful and sweet son.

I feel so different today. Just getting an actual appointment to have my son looked at by a spine specialist has taken a HUGE load of my shoulders and I found I just carried on this day and accomplished a lot of household things that needed tending to without waiting and wondering if 'this' is going to be the call I'm waiting for. Waiting and wondering is way more stressful than one could imagine.

I'm so looking forward to getting off this island and heading south and meeting with people who actually know what the hell is going on with my son's spine as well as I would love to meet up with Gayle and perhaps others who are in the Portland area. I also need to buy and sneak back a new laptop somehow, lol.

Edit: Should add that I'm absolutely thoroughly disgusted with our Canadian Health Care system who makes us wait almost ONE YEAR to be seen by a specialist and still no bloody date yet. Yeah, our medical doesn't cost us nothing so to speak but that's exactly what you get: NOTHING! At least we got nothing in this particular situation. Thank God for the lovely gentlemen at Shriners!

[jrnyc]

i thought that in Canada, the taxes are quite high, to cover the cost of "free" medical care...no?
my sister's been living in Canada for over 35 years, and that is what she told me....

jess

[Elisa]

Yeah Jess, I think our taxes are pretty high here. We now pay 12 percent HST on pretty much everything and I'm not sure what our income tax is but it's gotta be pretty high too. I'm not so good with math 'n' taxes and stuff but I know we're constantly paying it. We have an older house which is about 24 hundred square feet and our taxes are around 3.5K a year. Now we do get a bit of a rebate but I'm not sure how much.

The thing that makes me mad is that you can walk in off the street to a zillion clinics and get treated for ear, nose, urinary etc. infections BUT if you need to see a specialist then it's a LONG wait. And if you need to see a pediatric specialist... you're shit out of luck for even longer b/c we just don't have them. Like I said earlier, we have a grand total of TWO pediatric orthopedic surgeons here in British Columbia to serve the entire province of five million people. CrAzY!

[titaniumed]

Elisa

I see you have a date. Very good. And I will agree with Sharon on how well you are handling all of this, it’s a lot to absorb. We do talk about all sorts of things around here, don’t we? LOL. There is always something new to learn.

Canada is pricy now.....it used to be a great deal coming up there years ago, but not now. I went to Banff in 1995 and it was great time.

I want to ski Revelstoke....that’s the new hot spot in BC for skiers.

Ed

[Sherie]

Yeah Jess, I think our taxes are pretty high here. We now pay 12 percent HST on pretty much everything and I'm not sure what our income tax is but it's gotta be pretty high too. I'm not so good with math 'n' taxes and stuff but I know we're constantly paying it. We have an older house which is about 24 hundred square feet and our taxes are around 3.5K a year. Now we do get a bit of a rebate but I'm not sure how much.

That doesn't sound too bad as far as taxes. We have an 8.5% sales tax and property taxes around here average around 3.5%, for instance, we're paying $7K in property taxes on a 3000 sf home and homes here in Houston are generally much cheaper than in other areas of the country. We pay around $1200/month on private health insurance. I truly feel bad for folks who are making minimum wage, it must be nearly impossible to afford health ins. On top of that, we pay federal income tax and some states (not Texas) pay state income taxes too.

On the other hand, it all paid off at the time of my dd's surgery. Not only did we get to choose the surgeon, but we were able to go out of state with no penalties. We could have stayed local and found a fine surgeon, but having that choice made a huge difference for us.

I'm glad things are working out for you guys, I would be a nervous wreck not knowing what's going on and not having anywhere to turn to. I can't believe they would put you guys off for so long considering your son's case.

[Elisa]

It's not nearly as expensive up here in Campbell River as it is in Victoria which is three hours south and the capital of BC. A rundown old and small house that needs a tonne of work or blown up would cost you $400K whereas it would be about half of that up here so in that respect I feel we are very fortunate. There's not as much work up here though and you have to take what you get when you get it and hold onto it for as long as you can. I can accept all that but having to wait for close to a year for my son to be seen by a spine specialist is outrageous especially considering the boy has severe scoliosis obviously but again I'm thankful that he doesn't seem to be in much pain, just a bit uncomfortable. I'll let you all know if BC Children's Hospital ever do call with that elusive appointment. *roll eyes*

Off to my little hotel job on the oceanfront to do what I do with my great co-workers and fantastic boss. Working with nice people makes a huge difference. Hope all have a nice day!

[Elisa]

Okay, now that I've got a date to see a spine specialist in Oregon, I've gone through being immediately ecstatic to relieved to a sense of peace to the dreaded anxiety. Being the procrastinator that I am with regard to my own prescriptions, I'm at the end of one of my prescriptions that I take daily so of course I cut them in half so I don't have to go to the clinic to get a new prescription. I decided since it was so close to Christmas and the office hours change, that I'd go there after work today and get a renewal so I did.

I was talking to our GP and told him all about how long we've been waiting to see a spine specialist and how I contracted Shriners etc. and while I was sitting there telling him all of this, I started to feel really scared and about actually going down there and having a surgeon rip open his milky white virgin skin and crank all of his bones around and then all of the 'what if's' flooded through my head and I began to sweat.

It all didn't seem real the other day but now it is sinking in and I am starting to get a bit panicky. I honestly wish it were me that was going through this possible/likely surgery and not my baby!

I did get extra anti-anxiety meds though b/c I honestly think I will need them just to get me through. I'm sure my son will be fine, it's me that's a wreck.

Edit: For those of you who took your teens for an initial consultation... what exactly do they have done... xrays? scan? bloodwork?

[hdugger]

Hi Elisa,

yes, the wish to change places is almost overwhelming.

My son had just some xrays on his first visit (but he wasn't seeing a scoliosis specialist, and he had a pre-surgical curve).

When he finally saw a scoliosis specialist and had a curve in the surgical range, they did an MRI as well. (His doc said, because scoliosis was rare in boys, he always like to do an MRI to see if there was something causing it).

He has never had any blood work (although, given our discussion, I wish I'd asked for a vitamin D/calcium test)

[Pooka1]

Edit: For those of you who took your teens for an initial consultation... what exactly do they have done... xrays? scan? bloodwork?

It was radiographs and consultation. A long, detailed, explanatory consultation for the first time. That's it.

Have some questions ready in case they are not answered. In your case I think they will bring up the balancing act between allowing more growth and letting the curve get bigger. The decision will probably largely be driven based on the calculated progression rates between the first and second radiographs and the second and third radiographs (all of which you need to absolutely bring with you if to send ahead), also taking into account where he is on the growth curve.

The surgeon will explain everything and if you have questions after you leave you can email them. They will be answered.

[Elisa]

I will take the CD back to the hospital tomorrow and get them to put the first set of xrays on them. I meant to do that today but was running late and forgot. They were super quick last time getting the second xrays on there so I'm sure I'll have them both on there right after Christmas. I'm dying to see the comparison between the two but I'm almost positive the first ones will reveal 47*.

Doctors and clinics always make me anxious, especially when I'm there for myself b/c I've had such anxiety in the past and just being stuck in this little room all by myself does tend to make me nervous. It really shouldn't b/c I only go there when my one prescription is near empty and it's never a problem renewing it but I hate it just the same and would prefer to cut them in half and have a swooshy head instead of dealing with a new prescription. I put it off for so long this time last year that it snowed a foot, couldn't drive so I walked to the clinic and waited close to 1.5 hours as a walk-in and everyone was in there sneezing and hacking away, ack.

Okay, I'm back to being rational again and am looking forward to this consultation. Not sure if I mentioned this but I could have had a January 6th. appointment but our passports won't be here until around January 15th. so that one wouldn't work and honestly I am glad. The 20th. is good as it gives me a bit more time to prepare things. See, I know now that I got this ball rolling and things could move fast and surgery could be soon and I'm so used to 'just waiting' that I need to adjust to this new gear.

I do hope they will tell me that we should wait a bit until he grows some more, of course I do b/c who really wants to deal with a HUGE spine surgery for their kid especially when they're going about their business pretty well.

[Sherie]

It will just be xrays and your opportunity to ask your questions. We went to 4 surgical consults before we settled on a surgeon and it was the same with all of them. I had a long list of questions that I took with me to each one, I took notes too. It helped me to keep things straight from one to the other. Later on, about a month prior to surgery, they ordered an MRI, bloodwork and a lung capacity test.

Your son looks pretty severe, I would be prepared for sooner rather than later. I think his curves look larger than my dd's at time of surgery.

[Elisa]

Thanks for the info guys. I have lots of questions I want to ask and I'll bring along a notepad so I don't forget the answers. Yes, his curve is quite severe Sherie and he's also got a fairly large rib hump but it's not so noticeable with his clothes on, just when he takes off his shirt.

I had a look through the Shriners' Portland hospital website to see who their pediatric orthopedic surgeons are and there are three listed but only this one listed below says anything about scoliosis so I'm thinking maybe this is the fellow we will see. Anyone know anything about this him?

Charles d'Amato, M.D.
Staff Surgeon

Dr. d'Amato is a specialist in the treatment of scoliosis and otherspinal disorders as well as a professor at Oregon Health and Sciences University. He completed his medical education at Hahnemann Medical College in Philadelphia, Pa., completed his internship and residency atMonmouth Medical Center in Long Beach, N.J., and a pediatric orthopaedic residency and fellowship at Toronto's Hospital for Sick Children.

He is a fellow of the Royal College of Surgeons of Canada and the American Board of Orthopaedic Surgeons and a member of the Scoliosis Research Society.

For the majority of the past decade d'Amato has been the chief of staff and assistant professor of Orthopaedic Surgery at Brown University School of Medicine in Providence, R.I. His work has been published in The Journal of Pediatric Orthopaedics , the Pediatric Clinics of North America and Spine.

Dr. d'Amato is credited as a co-developer of the Providence Brace for night use in scoliosis patients.

[hdugger]

There are two Scoliosis Research Society members listed at Portland's Shriners. Dr. D'Amato is one of them, and the other is Joseph Ivan Krajbich.

Googling, D'Amato is a big brace guy (guessing that's because he invented one of them . Gayle (leahdragonfly) should know more - she's been to that Shriners.

[Elisa]

Okay, here's the one you were referring to hdugger.

J. Ivan Krajbich M.D., FRCS(C)
Staff Surgeon

Dr. Krajbich received his undergraduate degree at the University of Waterloo, and earned his medical degree from the University of Toronto. He completed his residency training in orthopaedic surgery at the University of Toronto. After completing fellowships in tumor surgery and pediatric orthopaedics, he joined the staff at the Hospital for Sick Children in Toronto in 1982. He joined Shriners Hospitals for Children® in 1993.

Dr. Krajbich is a Fellow of the Royal College of Physicians and Surgeons of Canada and is a member of numerous professional organizations and associations including Musculoskeletal Tumor Society, Pediatric Orthopaedic Society of North America, Scoliosis Research Society, International Society of Limb Salvage and European Pediatric Orthopaedic Society.

He also holds the position of adjunct associate professor in the Department of Orthopaedics and Rehabilitation at Oregon Health & Sciences University.

And this is the third fellow.

Dennis Roy, M.D.
Staff Surgeon

Dennis Roy was recruited from Cincinnati Children's Hospital Medical Center where he was associate director of pediatric orthopaedics. He specializes in disorders of the hip and feet, but treats a variety of pediatric orthopaedic conditions. He is a pioneer in arthrosporic surgery of the hip in adolescents and young adults.

Dr. Roy received his medical degree from the Medical College of Georgia and completed his internship and residency at the National Naval Medical Center, Bethesda, Md. He trained as a Fellow in pediatric orthopaedics at the Scottish Rite Hospital for Children, Atlanta, Ga.,and at the Alfred I. DuPont Institute, Wilmington, Del.

Dr. Roy is a member of numerous medical societies including the Pediatric Orthopaedic Society of North America, the European Pediatric Orthopaedic Society, the American Academy of Pediatrics and the American Academy of Cerebral Palsy and Developmental Medicine. He has spoken nationally, internationally and locally on a variety of pediatric orthopaedic conditions. He has a number of publications in a variety of pediatric and orthopaedic journals.