Seeing Surgeon Tomorrow

[rtremb]

We are going to see Dr. Jarvis at CHEO tomorrow to discuss surgery for Esme. We are still hoping she won't need it but expect he will recommend it.

Esme has prepared a long list of questions to ask him - like what kind of rods he will use, what type of anaesthetic is used, etc., how long before she can do normal activities again, etc. A very good list from a 13 year old.

Anyway, not looking forward to this appointment but it must be done.......

Ruth

[Geish]

Good luck today! I hope all goes well. Tell Esme I am proud of her for being so prepared and compiling such a great list of questions for her Dr. It's good she is taking such an active part in her medical treatment.
Alicia

[jillw]

Ruth, Good luck with the appointment! I'm thinking of Esme... Let us know how it goes.

[Susie*Bee]

Same here. Ruth. I'll be thinking of you both tomorrow. And I was just thinking of how pro-active Esme is being-- and wondered if it would be kind of fun for her to keep a journal of her appointments and what she thought, and how it's all going in between visits, etc. ... and it could be a place where she could jot down questions for "next time" -- anyway, just a thought. I know my girls always thought those blank journals with neat covers were a fun thing... Or maybe she already is doing something like that. Take care!

[myachingback]

I wish I was as smart as the 13 Y/O youngsters this day and age! I hope all goes well for y'all, sounds to me like she is a real trooper and is going to handle everything very well! I bet you are totally proud of her.
Good Luck! &
God Bless,
Chris

[WNCmom]

Sounds like Esme is facing this head-on--what a grown-up thing to do! I'm impressed. I know you'll keep us posted during this really challenging time. Looking forward to hearing the outcome of your appointment, and thinking of you both.

Mary Ellen

[rtremb]

Well, surprise surprise the doctor was not pushing for surgery - he is the head of orthopaedics at CHEO. He said that since her curves are balanced he would not necessarily recommend it. I was floored. He also felt that her curves might not get a lot worse since her period has started and the major growth spurt has already occurred.

We asked for a pulmonary test and he agreed this would be a good idea. We will also be having some bending x-rays done and a traction x-ray - probably tomorrow since we have to be back at the hospital for our son for a different issue.

Esme asked all her questions and the doctor answered them. She is writing her scoliosis story and is up to about three pages now.

I have mixed feelings about this. I know that many doctors would recommend surgery and hope that the doctor isn't telling us what he thinks we want to hear although I really highly doubt that. Besides he said he wouldn't recommend surgery before we said anything or started asking our many, many questions.

Ruth

[WNCmom]

Woohoo, Ruth!!!

I know you don't have a final answer yet, but doesn't this give you a little breathing room at least?

Or perhaps it just drags out this painful period of not knowing.....will you get another opinion? I know this must be difficult when you waited so long to get the appointment in the first place.

Mary Ellen

[rtremb]

Mary Ellen:

Not sure what to think really. In my heart I am thinking Esme needs the surgery but this doctor is a senior orthopaedic surgeon and he didn't seem to be in any rush at all to do surgery.

We have Dr. Rivard's opinion from last month which is to do surgery. We have another younger CHEO doctor's opinion which was to do surgery last February.

Ruth

[Aussiemum]

Gee Ruth - that's a tough call for you and Esme! Wow! I can't believe he doesn't think it necessary? Maybe there is something in that her curves are balanced and so therefore not causing any problems. But, what about the old saying that once it goes over 50 degrees curves will continue to progress into adulthood? That would be my major concern.

Hope everything turns out okay in the long run - haven't been on the forums much as so busy with back to work and the new pup.

Cyber hugs
Del

[flowerpower]

Hi Ruth,

I was just thinking the same things that Aussiemum said. I can see how he might feel that she doesn't necessarily need surgery right now if she is balanced w/no severe asymmetry or rib hump, but it is my understanding that curves that high will intend to increase about 1 deg. a year, so she might need surgery at some point. Wouldn't hurt to seek another opinion, but definitely keep an eye on it.

Best wishes,
Renee

[rtremb]

Does anyone know what a traction x-ray is?

Ruth

[RugbyLaura]

Hi Ruth,

I know it's yet more limbo-land, but I can't help feeling it's good news. I think I'd be delighted :confused:

Re traction x-ray - I'm guessing but I imagine it's an xray taken whilst traction is applied to see how much the spine will straighten. Could well be wrong though, I expect someone will be along in a moment with a knowledgable answer...

Laura x

[rtremb]

Esme had her bending x-rays and traction x-ray today.

The traction x-ray is done by a doctor pulling from the neck with a little harness and another person pulling from the feet and then the x-ray is taken. I was concerned this might be painful for Esme but she said it wasn't that it just hurt her teeth a bit.

Will be seeing the doctor again once the pulmonary test has been done.

Ruth

[malka22]

Ruth, I am in agreement with Aussiemom & Flowerpower. I just went through something very similar with my daughter Laura. When her curve was holding around 50 degrees, 3 different surgeons told us it was ok to NOT do the fusion, especially because she was skeletally mature (Risser 5). However, once she progressed to 66 degrees, it was another story. Today is one week since her surgery.
Here's what we were told: There was a 75% chance that her curve would increase beyond the 66 degrees, even though she was finished growing & started her period 1 1/2 yrs. ago. The higher the curve got, the less flexible it would become (what did Esme's bending xrays show?), & more vertebrae would have to be fused as well, resulting in the operation being much more difficult.
I don't mean to scare or upset you. I just want you to be sure that NOT doing the surgery is the right thing. It doesn't sound like you are 100% confident with the surgeon's explanation for NOT fusing her now.
Perhaps you really should get another opinion. Where is her surgeon/hospital located?

[rtremb]

Malka:
We are seeing the Head of Orthopaedics, Dr. Jarvis, at the Children's Hospital of Eastern Ontario.

You are right I am not sure that not doing the surgery is really an option for Esme at this point.

We won't know the result of the bending x-rays until after the pulmonary test is done and we go back in to see him to discuss further where we go from here. She is facing a complete fusion if surgery is done - from about T2 - L4 or L5 so waiting probably won't affect how long the fusion ends up being.

We have always been against doing the surgery - guess that's no secret if you read my posts!! I just hope the doctor isn't telling us what he thinks we want to here - but I kind of doubt that.

Ruth

[sparklegirl59]

hello!!! God will be with esme and i'll b prayin 4 her!!! :) best of luck 2 her, and God bless!!! -val :p

[danceISlife]

I just wanted to say good luck with everything and I understand what you're going through. A second opinion may be a good idea, not to spoil your good news or anything. I just had surgery about a month ago because I had a large thoracolumbar curve of fifty degrees. My parents were totally against this surgery and tried lots of alternatives like going to see a chiropractor, a TENS unit, etc.; however, he stressed the fact that it would most likely progress throughout my life and I would probably end up needing surgery later on down the road. Recovery tends to be easier when you're younger. Plus, he wasn't thrilled with the fact that it was one large curve that threw my body way out of balance (which I was very self-conscious about and also gave me pain). Anyway, I think he said that the xrays taken right before my surgery showed that my curve had progressed even past fifty degrees a little, but I'm not sure what it was exactly. And if progression in those four months, even though I'm basically skeletally mature, was an indicator of the future then I have no regrets for getting surgery. Anyway, I wish you guys the best of luck with everything!! :)

[KJUNGRL2]

Wow, I knwo how you feel. It si so tough! We have decided to go with surgery. Talking with the surgeon, it is much easier on a younger child, plus you have to worry about curves over 60 deg. affecting their organs. The worse the curve the harder to correct it. So, weigh out your options and maybe get yet another opinion if thats what makes you comfortable!! Only you will know what is best!!