Two-year check-up

[laurieg6]

Hi All,

I've been in somewhat of a panicked state of mind for the last few days so I thought I'd write to you all and see what thoughts or ideas you might have for me. Last Thursday, we had Alexander's 2 year post-op appt. with Dr. Wagner at Children's Hosp. in Seattle. He said the fusion looked good. But when my husband and I expressed our ongoing concern about his posture, Wagner studied the x-ray more and said there were structural reasons for the posture.

While stating he still felt he fused to the right levels (T8-L3), he mentioned to us and to his two students that the curve was causing the posture to tilt and that at some point "we could fuse him all the way down and anchor it to the pelvis". He said he wouldn't recommend this now but seemed to say that it might be recommended in the future.

On Monday we're going to see an orthotist for a small shoe lift to see if that can help. But I'm really trying not to panic although I'm feeling like I can hardly cope with the possibility of another huge surgery at some point in the near future for this kid.

The thought of him needing another huge, body-restricting surgery in the not-too-distant future is really feeling overwhelming to me and I've been teary, with an upset stomach much of the time whenever Alexander or my other son aren't around. Everyone else in my life are really clueless about all of this.

Any of your thoughts or opinions would be greatly appreciated. Thank you so much in advance.

[Pooka1]

Dear Laurie,

Wow that is so much to digest.

Would it be helpful to you and your thinking if you got another opinion at this point in time? I'm not saying to switch surgeons but it seems like another opinion would help you approach the idea of another possible surgery.

It is amazing to me that a "point" defect at a particular vertebra can cause curvature elsewhere in the spine, especially after fusion. I am obviously missing some key facts but I really don't understand that or the situation with Chiari causing curvature AFTER the syrinx is removed.

Please keep your chin up.

Best regards,
sharon

[laurieg6]

Thanks for such a quick response, Sharon. I will definitely get another opinion if this shoe lift doesn't seem to help. I can't imagine why he'd suggest a fusion to the pelvis rather than just an extension to L4. Not that I want any more surgery but it seems so extreme in a young boy to fuse to the pelvis.

[jrnyc]

Hi laurie
i would definitely recommend a 2nd or even 3rd opinion...also, all surgeons i have consulted want to "fix" me to pelvis for "stability," they say rods & stuff wont stay stable without anchoring...could that be why the surgeon said that?...i hope other opinions can put your mind at rest as to the necessity of such surgery for your child...

best of luck
jess

[laurieg6]

Thanks Jess,

I will definitely get more opinions at least when/if the surgery is deemed "necessary" by the surgeon. Right now it seems we are still in a holding pattern but just the idea of it as a possibility is very upsetting to me. I did write to the Dr's RN so maybe I can talk to the Dr. next week and get some better clarity about this situation.

I may take my son somewhere else for another opinion sooner also based on that conversation.

Thanks again for your response.

[leahdragonfly]

Hi Laurie,

I am so sorry to hear your news, and I can only imagine how upset and worried you must feel. Especially a the 2 yr post-op point, when you were probably hoping to be able to forget all about surgery.

It would definitely seem helpful to clarify the doctor's comments and learn more about his reasoning. I know I would want to delay that type of revision surgery for my child as long as possible unless I knew a really clear reason for it. Seems like one or two other opinions would be benificial. I'm sure you have other pediatric SRS surgeons in your area, and there is also Shriners in Portland.

I have no real advice for you, but I just wanted to lend my support. I hope things will seem better after talking with the doc. I always find more info to be helpful in reducing worry. Please let us know how you are doing.

Take care,

[laurieg6]

Thanks Gayle and everyone who has replied so far,

I did email the Dr's nurse yesterday and asked her to forward it to him. I have to talk to him soon because I can hardly stand how I feel with this worrying and so many second guesses of my choices throughout this whole scoliosis journey of my son's. We've been monitoring him since age 5 and were told that one surgery, probably around adolescence would be all that was possibly necessary. I took him to all kinds of 'specialists' in alternative treatments but nothing helped. I thought we picked the most experienced person to do the surgery and then he seemed to cavalierly tell us and his students about this other surgery to consider - which to me seems to be a way to 'fix' the first surgery, if it ever becomes really necessary. I will never allow it unless we are told that that junction is progressing, Alexander is in pain, or his posture gets even worse and he wants the surgery.

I only hear of much older people on this forum who get such a long fusion....

Thanks for any more responses people feel like adding.

[Pooka1]

Laurie,

I like your thinking and approach. I agree.

I re-read your original post and had the thought to ask specifically about other cases that your surgeon and other surgeons know about where the point defect is at the same place as in your son.

That is, I would ask if it is usual to fuse to L3 and if it is usual to need an extension to the pelvis a few years later.

I know all cases are different and I am guessing there aren't a boatload of similar cases but I would want to now about every one of them if I were in your shoes.

Stay strong. You are doing a great job. Don't look back... you made the correct decisions BY DEFINITION as his mother working with an experienced surgeon. Focus exclusively on the future.

Best regards,
sharon

[laurieg6]

That's a good question to ask, Sharon. I'm hoping to speak to the surgeon tomorrow, assuming he calls me in response to my email.

I also had the thought that if the posture problem is related to few-too-many levels fused (one surgeon thought we should go to L4 but our surgeon insisted it wasn't necessary and that this would be the only surgery), I might go sooner, rather than later, to some other surgeons for consults to see if maybe we should do a one level extension of the fusion to L4.

I'm just trying to think of everything that might prevent a fusion to the pelvis within the next few years...

Hopefully though, the shoe lift/orthotic will help. We go to get it made tomorrow.

He is starting high school in a few weeks and I'd really hoped all of this would be behind him and he could move on by now

Thanks again for your support Sharon.

[WNCmom]

Laurie--

I've been away for several weeks and just now read your post about Alexander's 2-year follow-up and the distressing comment by his surgeon. I can only imagine what it's like for you.

Others have made a lot of good suggestions. The only thing I can add is that you might consider sending a copy of Alex's latest x-ray with a letter to Dr. Betz, Chief of Staff at Shriners in Philadelphia to get his opinion. Perhaps a photo of Alex's posture could accompany it? Anyway, it would be free, it would save you a trip to Philly, and he might have some valuable input. Contact info for Shriners: 1-800-281-4050 or janetcerrone@comcast.net. Janet Cerrone is his PA.

This is something you could do while you're arranging any other more local second opinions. Just an idea.

My heart goes out to you. Hang in there and keep us posted.

Mary Ellen

[laurieg6]

Hi Mary Ellen,

I think I will call Janet Cerrone and send them the latest round of x-rays, based on what Janet says. I do need to get a copy of the last x-rays taken a few weeks ago. Thanks for responding.

[WNCmom]

Laurie--

I read your other post--and hope Dr. Betz can give you more info. Please keep us posted.

Mary Ellen

[laurieg6]

Thanks Mary Ellen. I will...