Moved "Nonsense" thread from kids secion

[mariaf]

With your rapid response to my non-surgery related point, i think you've just proved my point.

Thanks

prideinthejerse,

It seems that judging by the replies of Mary Lou and others, NOBODY else sees your supposed point, whatever your point is supposed to be.

I tried to respond to your post maturely and in a way that wasn't making this a contest about who is right or wrong, but rather trying to help you to understand why I take time out of my busy life (work, family, friends, etc.) to try to help others dealing with scoliosis.

I just got back from attending my son's baseball game this afternoon, then we went to a friend's barbeque where the kids swam all afternoon and we (the adults) had a great time as well.

But I guess according to you I am not living my life, simply because I check the forum most days since I am on the computer anyway for work or other reasons.

Like I said, you are entitled to your opinion, but it does seem to be only YOUR opinion and nobody elses.

I guess it couldn't possibly be that YOU are the one who is misconstruing things???

[Snoopy]

Sharon,

Thank you. My husband and I are very proud of both of our girls. I'm sorry if it sounded like I was bragging. I was trying to get the point across that Scoli kids do go on to lead very active, normal lives.

Mary Lou

[Pooka1]

Mary Lou,

I took that not as bragging but PROOF these kids can have a normal life.

My kid has a much better shot at a normal life having had this surgery than without it.

I can understand the fear of sending our kids into surgery. But I don't understand the comments about this surgery being an irreversible step. So what?

So far, I have only seen the upside of this surgery. Nobody knows the long term of this for these kids. It could be that they will have LESS lower back pain in the long run than most folks in the general population.

And if it doesn't then we can only assume the revision techniques will get better and better. I find it incredible what the revision guys can do now.

I have nothing but hope because of stories like your daughter's and others. And I can honestly say I worry MUCH less about my fused kid than my braced kid because of the unknown future and potential for surgery as an adult for her. I still don't quite get why the recovery is so different between kids and adults... a few months versus a few years on average??? That is off the hook and I wonder if any other surgical recovery is so different between kids and adults.

sharon

[txmarinemom]

I can understand the fear of sending our kids into surgery. But I don't understand the comments about this surgery being an irreversible step. So what?

Sharon, I think the "so what" lies in the fact the fusion *is* permanent, and no one really knows if they - or their child - will need extensions of the fused area later due to degeneration above or below the fusion. I suspect the permanancy, regardless of whether fusion was a last resort or not, fosters fear.

So far, I have only seen the upside of this surgery.

So far, with Savannah (and others - including myself), that's true. I'm not saying it isn't true overall ... or won't *be* true. It's far too early, however, to claim resounding success (and especially better life quality than the general population, for lack of a better term) in the long term.

And if it doesn't then we can only assume the revision techniques will get better and better. I find it incredible what the revision guys can do now.

I'll agree with that, but do I *want* one? Not so much.

I still don't quite get why the recovery is so different between kids and adults... a few months versus a few years on average???

On average, but not absolutely. My recovery, in particular, has been VERY quick (quicker than some adolescents). I go see Hanson this coming Tuesday ... I'll let you know how it's proceeding.

All my restrictions - except actually playing softball, playing golf, and deep sea fishing - were lifted at 8-10 weeks.

(I can hit in the cages, use my clubs at the range, and fish the shallows and flats.)

My overall physical shape was excellent when I went into this surgery, but I suspect a large part of the answer to your question lies in the fact by the time most adults have this surgery, their physical condition is, um, less than optimal.

They may have *never* been active, or perhaps they've been sedentary for many years due to pain.

Or, maybe, they just gave up maintaining their own health/physical pursuits for other reasons (job workload, running the kids(s) from point A-B-C-D every day, other time constraints, etc.).

Attitude is a huge contributor as well. I'd imagine it's a little easier to bounce back when your biggest concern is how to get your books back and forth to class vs. taking care of yourself AND everyone else.

Not to minimize the worries of a 14 year old, but you aren't responsible for worrying about everyone else. I think fear immobilizies some adults - or at the least, rational or not, inhibits positivity.

Just my $.02.

Regards,
Pam

[mariaf]

I just saw the following post on Spinekids, and while I am in no way trying to toot my own horn, I just felt that since everything in my earlier post to prideinthejerse (about why I check the forums frequently) seemed to fall on deaf ears, maybe this would once and for all make it clear why I haven't "moved on" and why I won't:

From Spinekids:

"Carmell and Maria,

Thank you both for all the information. I will be calling first thing Monday morning. I'll let you know how things go. Without your help, I'd still be wondering where to take Drew. Again, thank you for all the help.

I'll be in touch.

Julie (Drew's Mom)"

If helping a mom like this means some folks think I have no life, I'm OK with that.

Hey, if you ask either of my older kids, they probably think that already -LOL!

[Snoopy]

Maria,

Do you really have a life? I know you do, but like me and all the other parents, our lives revolve mostly around our kids and in my opinion, that's the way it should be! Having said that, why wouldn't we check the forums a few times a day? Shoot, having teenagers it is amazing we can use the computer a few times a day! To me, checking the forum at least once a day is as normal as calling my daughters or my husband. I call or e-mail and visit my friends as often as possible, especially when they are going through a rough time so why wouldn't I check the forum to make sure my internet friends are okay?

I'm glad you're still here and I look forward to seeing you here for a long time!

Mary Lou

BTW: Have you looked at the posts in the teen section lately? There's a mom with a 5 y.o. posting there. Thanks.

[Pooka1]

We finally settled down here in NC after moving from WI to FLA in 1997, FLA to Puerto Rico in 2000, PR to Alberta, CAN in 2003, and CAN to NC in 2006.

I tutored in five seventh grade math classes (three regular and two advanced) at my kids' school most of last school year.

This year I am restarting my scientific research career with the Gov't.

I am raising five guinea pigs (four atheists and one Jain... the Jain pig thinks just because she is nakee all the time she automatically is a Jain!).

I am learning how to rehab my horse from a serious condition. Yesterday, I got heat exhaustion towards the end of my riding lesson.

It may not seem like a life to Prideinthejerse but it's enough for me.

And speaking of Prideinthejerse, I will NEVER give up on her/him. There was too much potential in the early posts to give up.

sharon

[mariaf]

Maria,

Do you really have a life? I know you do, but like me and all the other parents, our lives revolve mostly around our kids and in my opinion, that's the way it should be! Having said that, why wouldn't we check the forums a few times a day? Shoot, having teenagers it is amazing we can use the computer a few times a day!

Thanks for the laugh about getting on the computer when there are teens in the house, Mary Lou! The best thing we did was get my daughter her OWN computer last Christmas - now the rest of us can actually get to use the family computer on occasion! And I think girls are worse than boys when it comes to that.

I agree 100% that our lives DO revolve around our kids and that is DEFINITELY how it should be. Otherwise, why have children? That's how I look at it anyway.

Thanks for the heads-up about the mom with the 5 year old - I'll go take a look!

Always good to hear from you.

[txmarinemom]

I agree 100% that our lives DO revolve around our kids and that is DEFINITELY how it should be. Otherwise, why have children? That's how I look at it anyway.

Oh, I agree with it all while they're at home.

Some may takle this the wrong way, but after raising mine single almost their entire lives, one of the happiest days of my life was when I worked myself OUT of that job (i.e., the same day I could actually find the tweezers, the milk jug was never stuck back in the fridge with 1/2" left in it, and MY clothes didn't get thrown out of the washer for someone else's! - LOL )

And, yep ... it appears we all have "real lives": Scoliosis is merely one facet - whether we, ourselves, are affected - or doing everything possible to help a child. Only someone who's experienced that can even begin to understand another person's thoughts and fears as they travel the same road.

Regards,
Pam

[mariaf]

Hey Pam,

Yes, I did mean while they are at home. Right now, I spend most of my free time with my youngest, David, taking him to baseball games, play dates, or whatever. Even though they live at home, my 20 year old is pretty much on his own, as is my 17 year old daughter (except when they need mom for something - LOL!).

[LindaRacine]

I still don't quite get why the recovery is so different between kids and adults... a few months versus a few years on average??? That is off the hook and I wonder if any other surgical recovery is so different between kids and adults.

sharon

Only a youngish person would ask that question. If you have to go through a major surgery after the age of 40, you'll probably understand. I think all surgical recovery is easier for kids than it is for adults. I don't think it has much to do with fusion. It's probably got a lot more to do with the fact that kids have younger cells than adults.

--Linda

[Pooka1]

Only a youngish person would ask that question. If you have to go through a major surgery after the age of 40, you'll probably understand. I think all surgical recovery is easier for kids than it is for adults. I don't think it has much to do with fusion. It's probably got a lot more to do with the fact that kids have younger cells than adults.

--Linda

Ah okay. I mistakenly thought there was something in particular about this surgery that resulted in the wide disparity in recovery time based on age alone.

I have some major fears that my braced daughter is going to get into adulthood with a sub-surgery curve and may yet need surgery later on due to progression or pain.

There are outliers in both age groups but the average recovery times don't appear to overlap even a little bit.

sharon

[malka22]

2 cents

Time to add my 2 cents. Prideinthejerse wrote,

"They get wrapped up in a little online community of people with spinal curvatures and forget that, hopefully, the surgery has "fixed" them and they can move on with life."

What she (or he?) is not realizing, is that some of us from this "little online community" have bonded with each other & in some cases have made lifelong friendships. We have gone to lunch with each other & have gotten together as families, etc. Why not align yourself with people who you have things in common with? Take books, for example. People go to book clubs because they have the love of reading in common. Or horses, people who ride also have a bond with each other. However, in the case with the folks who frequent this forum, not only do we have the common denominator of scoliosis, etc., we have the bond of paying it forward/helping others who are about to endure what we have endured.

Fyi, there are many, what I'll call, "sub support systems" going on outside of the forum. For example, if someone gets referred to me for help who is NOT on the forum, I will go to my "pool" of Scoli moms who I originally met from or through this forum. We then all rally together to help the person in need. The reason we do that is because (& Prideinthejerse is correct on this point) two (or more) heads are better than one, when it comes to helping others. We all have broad ranges of experience & knowledge from which to draw from.

In sum, this forum is about helping, giving back, sharing, caring, educating each other, doing our best to make another's journey as problem free as possible, regardless of how long ago we had our own surgeries.

As far as the need for getting a life & living it w/o our prior curvature, after my daughter's spinal fusion, she asked her surgeon if she still has scoliosis. He said that she will always have scoliosis; fusion is just a way of managing it. Therefore, we never leave our scoliosis behind, so we shouldn't have to leave this forum behind. As proven by many of the above posts, we are ALL doing "normal everyday" things, such as driving our sons & daughters to ball games, working, dancing, etc., however, we differ from the average "normal everyday" people because we will always have our incisions (until they fade, compliments of Mederma of Vit. E Oil) & we wear them proudly!!!!!

[LindaRacine]

There are outliers in both age groups but the average recovery times don't appear to overlap even a little bit.

sharon

I don't think one would expect to have two cohorts that have overlapping averages.

Communicating with others on this forum, browsing websites like www.spineuniverse.com and www.srs.org, and reading published papers on pubmed are great resources for helping us make the decision about having surgery. Once that decision is made, the "average" doesn't really mean anything, unless of course, one turns out to be average.

--Linda

[txmarinemom]

... the "average" doesn't really mean anything, unless of course, one turns out to be average.

... and more to the point (in agreement) who defines "average"?

There are adults on this board who zoom on after surgery, and kids who do the same.

In *both* groups there are also those it takes a little bit longer, and a little more work to return to "normalcy" (the old normal - or maybe a "new normal").

I have said something similar many times, but I'll say it again ...

I think the subset of patients HERE (at least the ones who post - and there are TONS of lurkers judging from the questions I get - and gladly answer, if I can - via private email) is too small to be indicative of *anything*.

Who's NOT here because they don't have a computer, they aren't having problems, or they blindy accept the opinion of a local ortho?

Just some food for thought ...

Pam