Future??

[nervous]

Besides initially getting through this surgery, do any of you think about what the future holds with this surgery? For instance, how high are the chances that we'll have to have another surgery, etc. I did some research on the Internet last night, and I read some really negative things about this type of surgery. This is so scary!!!! Although, I know I can't live in pain like this, and something HAS to be done....it's still scary!!

Anyone else think about this?

[asccbodypro]

nervous

I understand exactly how you feel! I always wonder if I am making the right choice. My surgery is April 15. As you said, you can't live in pain all the time. Life is to short. It's good to research and know what you are getting into but there are a lot of bad stories out there on the Internet and it's hard to know what is true and what isn't. I stopped researching because I started to drive myself insane. I trust my doc and have had a lot of great input and suggestions from wonderful people who have gone through the surgery right here on this website. I believe in the power of positive thinking! What will be will be! As for future surgeries, look at it this way.....technology just keeps getting better and better all the time! Good luck and take care of yourself

[Singer]

Not only are there bad stories on the Internet, but there are outdated ones as well. There's a lot of old, obsolete information out there. I also had to stop researching before my surgery because it just got to be too confusing. There are risks to having the surgery and risks to NOT having it. You just have to do your homework, research surgeons carefully and make the most informed decision possible.

[NotReadyYet]

Dear Nervous, I too feel like you do, it is very scary when you read about the surgery online. I've talked to several of the people on the forum and met some of them too. They are so inspirational, I now know what I am doing is the right thing for me.

You need to be sure of your doctors too. It took me 2 years to find Dr. Boachi and I feel blessed that I found him. I would have never gone through with the surgery with the previous doctors I saw.

My family who hasn't been real supportive, have been talking to people and actually finding people in their lives who have relatives who have had the surgery and are glad they did... they are starting to come around and support me.

My surgery is planned for April and am I nervous... COMPLETELY. I don't think my nervousness will go away but I am so hopeful because my life has been so limited due to the pain.

[asccbodypro]

Not ready,

My surgery is April 15...when is yours. If I let myself think about I get nervous, I've done a good job so far keeping occupied with other things. Hope you are able to do the same. Don't drive yourself to crazy....I know it's hard not to! Good luck..

[Pooka1]

Like a broken record

I don't know about adults but my daughter's surgeon insists she is back in the general population on future back issues. She was fused T4 - L1. That is, she is not predisposed over the anyone else to have more future back issues than an average person who is unfused. That's a cure in my book.

I think you have to be careful to research only the modern instrumentation that use today which is so effective that 95% of kids don't even have to do physical restrictions in the recovery period in order to get a durable fusion.

Someone needs to get a Nobel for this instrumentation in my opinion.

[txmarinemom]

I don't know about adults but my daughter's surgeon insists she is back in the general population on future back issues. She was fused T4 - L1. That is, she is not predisposed over the anyone else to have more future back issues than an average person who is unfused.

My fusion is identical to Sharon's daughter, and my surgeon also told me I was no more at risk than anyone else. He also said he didn't anticipate I'd ever need a revision/extension as long as I stayed active and kept a healthy weight.

Nervous, you have to be very skeptical of everything you find on the 'net. ALWAYS consider the source.

Regards,
Pam

[CHRIS WBS]

For instance, how high are the chances that we'll have to have another surgery, etc.

In my consultation notes from a Chicago surgeon, it says “about 20% of our adult patients experienced a need for unplanned surgery.” Even with those stats, I’d still have surgery because quite honestly the constant worry over what I would be like 5, 10, 15 years from now if I don’t have surgery was a greater source of anxiety for me.

[txmarinemom]

In my consultation notes from a Chicago surgeon, it says “about 20% of our adult patients experienced a need for unplanned surgery.”

Chris, I almost hate to revisit this, but is this the same surgeon who told you scoliosis surgery was 2nd only to amputation?

If so, I'd gently suggest maybe the skill and/or knowledge of that doctor is questionable.

However, the 20% figure raises a valid point: A surgeon who takes on high risk patients (severe curves, prior pseudoarthrosis, complicated revisions) is naturally going to see a greater percentage of "repeat offenders" than a surgeon who's bread and butter is performing initial, relatively straightforward fusions on people without existing issues.

I think *any* prediction of future issues should be on an individual patient basis. A broad determination of failure rates for all surgical patients - across all surgeons - simply can't be based on what subset of patients a particular surgeon chooses to serve.

Regards,
Pam

[CHRIS WBS]

Nope. Different surgeon. And an excellent one at that. Four surgeons including my own told me "Dr. so and so is excellent."

[txmarinemom]

Nope. Different surgeon.

Out of curiousity, was it a surgeon with a high risk practice? I'd guess so as large as your curve was.

I'm not saying that 20% over a patient base like that is excessive and/or unrealistic: If you fall in that base, absolutely (as you did), you have to personally weigh the risk of later issues with the loss of a life you're unable to live NOW. Given those odds, and the almost certainty of where things were headed without intervention, I'd take the odds too.

All I really wanted to point out is that while a 20% revision rate may be the norm for that practice (and some others, I'm sure ... possibly with even higher numbers), it MUST have some correlation to the condition of the patients prior to treatment. Did that make sense?

Regards,
Pam

[CHRIS WBS]

Pam,

I think an “unplanned” surgery encompasses everything from simply having a screw removed to a major revision such as what Brandi underwent to correct flatback. And I do think the chances for these unplanned surgeries are certainly more prevalent in the adult population. A 20% possibility does not seem unreasonable to me if a surgeon performs two or three adult surgeries a week.

[txmarinemom]

I think an “unplanned” surgery encompasses everything from simply having a screw removed to a major revision such as what Brandi underwent to correct flatback. And I do think the chances for these unplanned surgeries are certainly more prevalent in the adult population. A 20% possibility does not seem unreasonable to me if a surgeon performs two or three adult surgeries a week.

While I understand an "unplanned surgery" could be screw removal (something like Geish experienced), from what I've seen, those are minor (and fairly rare) *flukes*. I simply can't agree every surgeon doing 2-3 patients a week has a 20% revision (minor OR major) rate.

Nothing I've seen in these forums (or anywhere, for that matter) has led me to believe the probability of revision after *initial* surgery in adults (again, with no pre-existing conditions - and relatively uncomplicated curves) vs. children is any higher with *today's* hardware.

Regards,
Pam