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Pooka1
06-02-2008, 04:02 PM
I moved this from the kids "Other" section for obvious reasons...

Susie*Bee wrote: "You [Pam] have a wealth of knowledge and I'll be the first one to say right now "thanks" for sharing it. I know you have helped many people. I do appreciate the information that you bring to the forum, but at the price some of us pay in tension and stress, I don't know that it's worth it. You have bullied many people into leaving the forum, and although I am not as strong as you are, I am not going to leave just because you so obviously do not like me."

I just wanted to speak to this as someone who was mistaken about Pam originally but who has come to see her as one of the more valuable contributors here. Although Pam writes clearly and concisely, I nevertheless got the wrong impression early on. I have since re-read her posts and see the fault was mine. I have apologized to Pam in a PM but I will do so publicly now also.

Also, in re running people off, you need to consider how many kids of non-Christian faiths might have been run off or just felt too uncomfortable in the kids section. We'll never know how many kids didn't stay for that reason.

Susie*Bee wrote: "Threats? I am thin-skinned and fragile when I am attacked, so this is taking quite a lot out of me to do. Even now, my heart is beating very fast and I pretty sure I will be blasted by you and probably some of your friends."

:eek: Please try to cowboy up. For your own sake.

sharon

CHRIS WBS
06-02-2008, 05:11 PM
I just wanted to speak to this as someone who was mistaken about Pam originally but who has come to see her as one of the more valuable contributors here. Although Pam writes clearly and concisely, I nevertheless got the wrong impression early on. I have since re-read her posts and see the fault was mine. I have apologized to Pam in a PM but I will do so publicly now also

I did not get the wrong impression early on. My first impression was that she’s a very insecure and explosive individual. I would not hesitate to say she’s frightening. She’s easily provoked into confrontation and desperately tries to garner attention. Why else would she post a picture of herself with her “fake” boobs hanging out? Only someone who is so insecure takes delight in humiliating and bullying. And while we all have our failings and shortcomings, I’ve never seen an apology from her for all the insults and accusations she’s flung around at others. She certainly has you mystified. My impression stands firm.

Pooka1
06-02-2008, 05:21 PM
She certainly has you mystified.

Perhaps you mean mesmerized? I'm not mystified by Pam though I might be a little mesmerized. :D

I'll tell you what mystifies me.... that an adult can believe intercessory prayer works. :eek: Pony up the peer-reviewed articles if you think it does.

sharon

Suzy
06-02-2008, 05:53 PM
CHRIS WBS you have got to be kidding. I think you are jealous of the fact that she is not only knowledgeable, helpful and encouraging. But she speaks her mind and from her heart. If that is called "explosive" in your world so be it. It is called confidence in mine and I suffer from the same ailment. Actually there are quite a few of us on this forum who are just sick of the crap being posted by some and are calling them on it.

BTW where is the name of the Dr. you were claiming to have told you this surgery is 2nd to amputation......Hmmmm??!!

The fact that you mention her looks SCREAMS to me your insecurities. No one bashed your looks when you posted your prim and proper posed picture.

If you only knew how you come across to us...... I think you are the one who owes people apologies. For all the scare tactics and negativity you continue to post here I hope you don't expect much support when you have your surgery.

Pooka1
06-02-2008, 06:04 PM
For all the scare tactics and negativity you continue to post here I hope you don't expect much support when you have your surgery.

I'll be praying for her. ;)

But seriously, after seeing how much my horse has recovered through the power of no prayer whatsoever, I'll offer to NOT pray for her so she can recover also. :)

sharon

Suzy
06-02-2008, 06:08 PM
Well said Sharon!

Susie*Bee
06-02-2008, 06:25 PM
I appreciate that you moved this off the adolescent site. I was trying to figure out how to ask the moderator to move the adult posts from this thread but to leave Lexi's original thread and kid replies there... you solved the problem, so thanks.

Anyone tuning in late and wondering what this is all about can go to this link:http://www.scoliosis.org/forum/showthread.php?t=7356&page=1&pp=15

I know there are many people who are concerned for Chris and her upcoming surgery. I will be praying for her. Sharon-- I will try to respond to your statement concerning prayer soon. I think you don't understand it very well.

Pooka1
06-02-2008, 06:31 PM
Sharon-- I will try to respond to your statement concerning prayer soon. I think you don't understand it very well.

That's for sure. I suggest nobody does. I'll look forward to the explanation.

sharon

Singer
06-02-2008, 06:36 PM
NO ONE on this forum deserves to be trashed. Period.

Grow up, people.

Pooka1
06-02-2008, 06:38 PM
Grow up, people.

HEY! That's *MY* argument.

Get your own. :cool:

sharon

skoshi314
06-02-2008, 07:15 PM
I've not had the time recently to even check the forum and I'm so sad about what I found when I did make the time to check in. I am one week from what will most likely be the biggest challenge of my life for a variety of reasons. I've been preparing for this surgery for months, trying to prepare my family and my temporary replacement at work, and now I have one week to try and plan for what may or may not come up in the next 6 months in order to make things easier for my family, my husband in particular. I have a very limited reserve of time and energy and I won't waste either of them on petty arguments. Because we are individuals we all have different opinions, beliefs, doctors, procedures and the list goes on and on because we ARE individuals. We don't have to agree to be able to contribute to the amazing wealth of information here. To be quite frank, if you don't like what someone else says, IGNORE IT. GROW UP. Be a contributor of information or knowledge or positive advice or don't contribute at all. I try really hard to follow my own advice. If anyone finds that I don't, please call it to my attention. Several months ago I posted to a thread that had gone way downhill and I posted defending another member. I still stand by that post, but I'd like to think I won't ever feel the need to have to defend anyone again.
Now, I'm going to go enjoy my lortab cocktail. My purpose was not to offend, but to hopefully redirect the focus of this wonderful place.

ca-native
06-02-2008, 07:46 PM
I did not get the wrong impression early on. My first impression was that she’s a very insecure and explosive individual. I would not hesitate to say she’s frightening. She’s easily provoked into confrontation and desperately tries to garner attention. Why else would she post a picture of herself with her “fake” boobs hanging out? Only someone who is so insecure takes delight in humiliating and bullying. And while we all have our failings and shortcomings, I’ve never seen an apology from her for all the insults and accusations she’s flung around at others. She certainly has you mystified. My impression stands firm.

Chris WBS:

#1 Good luck on your surgery.

#2 Now go away and stop posting.

ENOUGH ALREADY!!!

txmarinemom
06-02-2008, 08:04 PM
I did not get the wrong impression early on. My first impression was that she’s a very insecure and explosive individual. I would not hesitate to say she’s frightening. She’s easily provoked into confrontation and desperately tries to garner attention. Why else would she post a picture of herself with her “fake” boobs hanging out? Only someone who is so insecure takes delight in humiliating and bullying. And while we all have our failings and shortcomings, I’ve never seen an apology from her for all the insults and accusations she’s flung around at others. She certainly has you mystified. My impression stands firm.


Wow. Talk about irony.

I assume the picture you're talking about was the bikini one (they've been around for *decades*, Chris, and people *gasp!* even wear them in public!), and my "fake boobs" were far from "hanging out.

I'd say my SPINE was hanging out in my surgical photos more than boobs in ANY pic.

Why do you even CARE (obviously you do since you mentioned it) I have "fake boobs"? For a price, you can have your own, and it's no concern of mine.

The topic of that conversation was how a 53° curve can be near-invisible on outward appearance.

I have better things to do than watch a grown woman act like a jealous 6th grader, and Chris, I'd really consider getting that negativity in check before you have surgery. You'll fare much better afterwards.

See y'all around.

Pam

mariaf
06-02-2008, 08:22 PM
I did not get the wrong impression early on. My first impression was that she’s a very insecure and explosive individual. I would not hesitate to say she’s frightening. She’s easily provoked into confrontation and desperately tries to garner attention. Why else would she post a picture of herself with her “fake” boobs hanging out? Only someone who is so insecure takes delight in humiliating and bullying. And while we all have our failings and shortcomings, I’ve never seen an apology from her for all the insults and accusations she’s flung around at others. She certainly has you mystified. My impression stands firm.

I really didn't want to get into this but enough is enough.

Chris - Your impression of Pam may stand firm but it is YOUR impression, not that of others including myself who actually know Pam and find her to be anything but the things you posted (insecure, a bully, etc.). So she speaks her mind even when what she has to say may not be popular - so what?? I actually RESPECT that in a person. She's not trying to win a popularity contest - neither am I. I'd much rather deal with someone who speaks what they feel than to deal with all the phonies and "yes" people the world is full of.

I have also SEEN personally (on and off the forum) that she has a huge heart and has reached out to help adults and kids she doesn't even know time and time again.

And why ON EARTH would that picture she posted bother you?? Most of us, including myself, are not intimidated or bothered by her photos, her boobs that YOU keep referring to, or her attitude. Why are you? Perhaps YOU are the one who is insecure.

OK, I'm done.

JanL
06-03-2008, 06:44 AM
I come to this forum to seek and share useful information and find way too many of these nonsensical exchanges. It's a turn off.

ca-native
06-03-2008, 07:58 AM
I come to this forum to seek and share useful information and find way too many of these nonsensical exchanges. It's a turn off.

EVERYONE: Listen to and follow JanL's words. This is what the forum is about. This website was incredibly helpful to me throughout my daughter's surgery and recovery but too many posts here have fallen off of the basic path lately.

Let's get back to helping each other.

Well said JanL....

mariaf
06-03-2008, 08:08 AM
Well said, Elaine!

Let's keep religion, personalities, etc. out of it and stick to discussing SCOLIOSIS.

CStadler
06-03-2008, 10:09 AM
Come on let's all be adults here and set a good example for the kids who may read this post.

There are bound to be times where you don't like or agree with what someone says, just ignore it.

Be courteous, respectful and mature enough to allow someone an opinion that may not be your own.

I don't believe it is anyones place to tell an 11 year old, or anyone for that matter, what they can or can't say.

Please, everyone get back to the true intentions of this forum.

prideinthejerse
06-03-2008, 10:20 AM
This forum has lost it's way. Get back to what it is meant to be...a place where those who have had surgery, can give advice to those who haven't. I also see a danger with the forum too. Sometimes people who have had surgery a few years ago need to move on...

Suzy
06-03-2008, 10:51 AM
...a place where those who have had surgery, can give advice to those who haven't. Sometimes people who have had surgery a few years ago need to move on...
Those of us experienced with this surgery help the new people understand what they will be facing from a first hand account. I personally don't know of any surgeons who have had this surgery that perform this surgery. Thus, they can only give you a rough idea from what they have been told by patients. I love that we are so open with each other and can talk about ANYTHING. You will find out information here you would never think to ask your Dr. And there is no way the Dr. can anticipate all your questions.
I learned so much on this forum I was able to ask specific pertinent questions when I saw my Dr. He asked how I became so knowledgeable! I entered the hospital for my surgery educated and (fairly) calm knowing pretty much what I was in for.
I guess since the recovery period for this surgery is 2 years (As told to us by our surgeons.) that is when we should stop helping others? :rolleyes:

CStadler
06-03-2008, 11:06 AM
I am extremely grateful people who have had this surgery have not "moved on".

Karen Ocker (hope you don't mind me using your name Karen) has been one person who was invaluable to me. She is in the medical field and has been a fountain of information that I have grown to rely on and more importantly....trust.

We need those who have been through this!

mariaf
06-03-2008, 11:12 AM
Well said, Suzy and Carol.

I'm in a bit of a different boat - my son had vertebral body stapling over four years ago and I frequent a VBS site as well as this and other forums - but what I'd like to know is.....should I have "moved on" and stopped helping folks two years ago??? That's insane. I have been told by several people whom I have tried to educate about VBS and share my experiences and information with DURING THE PAST TWO YEARS that it helped them immensely.

For anyone to consider moving on just because they are a couple of years post-op would NOT be a good thing for this or any forum IMHO.

loves to skate
06-03-2008, 01:41 PM
Originally Posted by CStadler - I don't believe it is anyones place to tell an 11 year old, or anyone for that matter, what they can or can't say.

I have been away for a few days and am totally shocked by what is going on here. I totally agree with the above quote. By the way, if an 11 year old girl offers to pray for me, I say, "Thank you very much." I choose to believe that prayer helps (no matter what the outcome) even though it may not be able to be proven by science, because it offers peace and the knowledge that we are not in control of everything in our lives.

Originally Posted by prideinthejerse
...a place where those who have had surgery, can give advice to those who haven't. Sometimes people who have had surgery a few years ago need to move on...

Where on this post does it say two years? I always thought that a few was 8 or more :confused:

May God bless you all. Sally

Pooka1
06-03-2008, 03:28 PM
Be courteous, respectful and mature enough to allow someone an opinion that may not be your own.


Folks are entitled to their own opinions. They are NOT entitled to their own facts.

Do you disagree?

sharon

ps. Could the person who used the word, "rubbish," please post more? I love it when folks use that word. :cool:

s

Suzy
06-03-2008, 03:33 PM
Hi Sally,

I won't tell my kids to have "a few" cookies if it is indeed 8! LOL!

2 years = recovery. That was just my way of wondering out loud when one might need to think about leaving the forum.... as prideinthejerse suggested.

Snoopy
06-03-2008, 04:30 PM
I'm not sure who the go away comment was meant for....but my daughter will be 4 years post-op this year and I obviously haven't "gone away" and don't intend to do so any time soon!

I am more grateful than words can express for those of you who "held" my hand through Jamie's surgery. I get a good feeling by "paying it forward" to others who now need me to hold their hands through pre-surgery, surgery and recovery no matter how long that might take. I receive e-mails daily from people (mostly from this forum) who are either facing surgery themselves or facing surgery for their child and they are always grateful that I've stuck around the forum to share Jamie's experience.

I imagine that someday I'll leave this forum, but right now, I can't imagine it happening!

Mary Lou

Pooka1
06-03-2008, 04:45 PM
I'm not sure who the go away comment was meant for....but my daughter will be 4 years post-op this year and I obviously haven't "gone away" and don't intend to do so any time soon!

I am more grateful than words can express for those of you who "held" my hand through Jamie's surgery. I get a good feeling by "paying it forward" to others who now need me to hold their hands through pre-surgery, surgery and recovery no matter how long that might take. I receive e-mails daily from people (mostly from this forum) who are either facing surgery themselves or facing surgery for their child and they are always grateful that I've stuck around the forum to share Jamie's experience.

I imagine that someday I'll leave this forum, but right now, I can't imagine it happening!

Mary Lou

Man, I am SO grateful you were here to help me through not only the surgery part but the recovery part also with my daughter. I didn't get a load of instructions from the surgeon when we left to hospital so I just did mainly what you said. I am NOT kidding.

That "move on" comment is completely inscrutable. The experienced folks here are the main asset.

Thank you.

sharon

Snoopy
06-04-2008, 06:49 AM
:o

Thank you for your kind words Sharon.


Mary Lou

mariaf
06-04-2008, 10:12 AM
I'm not sure who the go away comment was meant for....but my daughter will be 4 years post-op this year and I obviously haven't "gone away" and don't intend to do so any time soon!

I am more grateful than words can express for those of you who "held" my hand through Jamie's surgery. I get a good feeling by "paying it forward" to others who now need me to hold their hands through pre-surgery, surgery and recovery no matter how long that might take. I receive e-mails daily from people (mostly from this forum) who are either facing surgery themselves or facing surgery for their child and they are always grateful that I've stuck around the forum to share Jamie's experience.

I imagine that someday I'll leave this forum, but right now, I can't imagine it happening!

Mary Lou

Hi Mary Lou,

I, for one, am glad you have no intention of leaving the forum - nor do I.

You made a great point about wanting to "pay it forward". I still can't understand the rationale of anyone saying that after a certain point, folks should move on, rather than stick around to help the next person.

That's exactly what I DON'T want to do - to ever say "well my son's surgery is over so I'm on my way". Now THAT would be a shame if people started doing that - but I don't see that happening either, thankfully.

Good to hear from you - hope all is well with your family.

Snoopy
06-04-2008, 02:33 PM
Thanks Maria. You are one of the many people here who I count as a dear friend.

All is well with my family-busy as usual! I hope your family is also doing well. Enjoy your summer and if you ever decide to come to Hershey Park, please let me know. I'd love to meet you in person.

Mary Lou

dolores a
06-05-2008, 05:06 AM
I really don't know what all the fuss is about here, but I totally agree that members of this forum who have had surgery have a wealth of information to share with people such as myself who are in the midst of just finding out they will need surgery, really, isn't this what the forum is for. The first spine doctor that I went to highly recommended this site, and I am so glad he did because I learned so much already. When I go to my appointment on June 26th for a 2nd opinion, I will be more informed and know what questions to ask, I will even be able to understand the terminology of it all that I learned from just reading the back and forth posts from the members who are gracious enough to stay on this site and help us through it all.

And believe me, I will back after my appointment to pick the brains of the members who have been through this surgery, and from what I have already observed, they will respond with intelligent and compassionate answers. So I hope you guys who have been there will stick around for a long time, because people like me will need you.

Thank you,
Dolores

JoAnn5
06-05-2008, 11:47 AM
I'm not going anywhere either! lol...

This forum made it possible to talk to people who knew exactly what i meant when i described a problem... No one in my family could identify with it.

I still read this forum almost every day and my original surgery was 2 1/2 yrs ago. I don't think we are ever the same after this surgery though, either physically or mentally, so I still feel connected to folks here.

I've been away for a few days and on my first day back, i come here to catch up. It's disappointing to see the negativity and bickering in this post. It's also hard to trust or take seriously people who allow themselves to be pulled down to these levels.

Pooka1
06-05-2008, 04:11 PM
It's also hard to trust or take seriously people who allow themselves to be pulled down to these levels.

Well I guess I have a few different concerns...

It has been brought to my attention that the person who made the inscrutable comment about folks moving on after a few years is the *SAME* person who used the word, "rubbish." An obvious quandary with no simple solution in sight. :confused:

Also, the latest results from my exhaustive spreadsheet analysis reveal that 42% of the people here are named "Susan" (or some variation), and another 48% are named "Chris" (or some variation). I don't know how folks keep this straight. :confused:

sharon

prideinthejerse
06-07-2008, 06:58 PM
My point about moving on is that people use this forum to ask questions before and after surgery. Obviously, for them to get info they need to have their questions answers by those what have experienced surgery. My point is that some people seem to use this forum as their chatroom, their home in a sense. 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. When I had my surgery, my focus wasn't on commiserating with other people, it was on getting back to normal. if you are "back to normal", start living in it, instead of carrying around the curvature when it is gone. I look up this forum about once a week, for 10 mins. I see if they're is anyone I can help. If not, I don't post. if there is, I do. There are some people who post on these fora a few times a day. I do not think that any one person has enough experience to be giving quality answers to questions at a rate of a few a day, and so they should move on. They should make this forum less of a focus in their life and should concentrate more on getting better and living life. Don't abandon the forum, but don't forget that you're "corrected" and that you need to start living life again.

mariaf
06-07-2008, 07:31 PM
Prideinthejerse,

Thanks for clarifying what you meant. While what you said is true in some ways, I don't think that folks who post often or even daily (myself being one of them) do it because they haven't "moved on" or aren't living their lives. I live my life to the fullest but a big part of it now is sharing with others what I've learned by my experience and helping as many families as I can. More often than not, when I come on this forum or on Spinekids, I find someone with a newly diagnosed child or someone whom I can help in some way - perhaps with a doctor recommendation or pointing them in the right direction or even just listening and letting them know that I have been there.

Several years ago, when I started this journey with my son there were folks who were there for me (not on this forum because I was not a member then but folks I was put in touch with through my doctor, etc.) and now I am simply paying it forward. I"d hate to think what would happen if nobody did that.

Now this doesn't mean I'm not living my life - but for people with scoliosis, or whose kids have scoliosis, it IS a part of our lives, not our entire lives, but a part of it forever because, surgery or not, these people, or their children, still have scoliosis.

IMHO the forum is a better place because people DO stick around to share and help others.

txmarinemom
06-07-2008, 11:09 PM
My point is that some people seem to use this forum as their chatroom, their home in a sense. 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. When I had my surgery, my focus wasn't on commiserating with other people, it was on getting back to normal. if you are "back to normal", start living in it, instead of carrying around the curvature when it is gone.

Pride, I'm not sure why you feel people should "move on", but here's how I see it ... (BTW, I'm living my life - I just got in from a night out when I originally posted this. I'm hardly sitting at the computer waiting to jump right on and respond to your posts - which it seems you're inferring. I can assure you Maria isn't either.)

If you've read my post-op posts (starting from the hospital the day after surgery) you won't see me "commiserating", you see me encouraging. Huge difference.

I have EVERY intention of reclaiming my life 110% asap (I'm about 95% there at only 4 months post-op), but I won't *ever* forget the people (or leave them hanging) who are discouraged by the worst of the worst stories here. They, IMHO, need someone who proves you can live life as it was (pre-instrumentation - whether that was cross-stitching or diving into bases head first). Too many here will convince newbies they're made of glass after surgery, and that is simply NOT the case.

So, no ... no matter how many times I say I'm tired of the bickering here at times - and the downers - I will be back ... even of it helps ONE person. In fact I probably get more email from lurkers who never post here (either about the surgery itself, my recovery or my surgeon). That alone demonstrates positive case examples are a good thing to have around these parts.

This board isn't just a gathering place to whine - or desert when you're "recovered". It's too bad all don't see it that way.

Pam

lnetzer
06-08-2008, 01:12 AM
I haven't posted in a very long time, but I do like to come around periodically and check things out. The good people on this forum who were kind enough to give me reassurance and knowledge of what they'd gone thru before me, I honestly don't know how I would have gotten thru everything without them. Many thanks for all of those who have not moved on! You are angels to me!

prideinthejerse
06-08-2008, 03:46 AM
With your rapid response to my non-surgery related point, i think you've just proved my point.

Thanks

Snoopy
06-08-2008, 10:10 AM
Maria and Pam,

Well said.

Pride,

Yes, my daughter is "corrected", but her experience with Kyphoscoliosis is far from over. We constantly have the threat of more surgery since she has developed Kyphosis above her fusion. Although she is 3 1/2 years post-op, she is still under the care of her surgeon. He has not discharged her.

Yes, we have moved on--my daughter is an active 16 year old who drives, works p.t, bought her own car, is involved in many clubs through school (treasurer of FCCLA last year and President for this coming year), is the Vice President of a Scoliosis Support Group (she would be President but she isn't allowed because of her age), is in the process of going to a University this summer to a Governor's School (look it up and you'll see what a priviledge it is to be going), is taking at least three college classes next year as well as her High School classes, she is doing job shadowing this summer, has already been accepted to her college of choice, planning on starting college in July of next year at the age of 17, is on the Distinquished Honor Roll (with all honors classes) every marking period, .....should I go on?

Don't tell us that we need to move on. Scoliosis is always going to be a part of our lives and if I can get the support and information I need from this forum, then I'll never leave. Jamie is not my only child. I know if my other daughter were to be diagnosed with Scoliosis or Kyphosis, this forum would be the first place I would go to for support and understanding.

Everyone moves on but like cancer, Scoliosis seems to be a part of our daily lives whether we want it to be or not.

Mary Lou

ElleBelleCurvz
06-08-2008, 12:11 PM
I don't think anyone should leave this site for any reason at all, everyone deserves to speak their thoughts no matter how bizarre they are. Although I do think spammers should move on. Or not even come at all :)

Pooka1
06-08-2008, 12:15 PM
Mary Lou,

Jamie sounds like a remarkable girl. Stories like hers are a tribute to how resilient kids are when something like scoliosis strikes and how far the surgery has come in terms of giving these kids back a normal life.

I read these testimonials and have nothing but hope for the future, both for my fused daughter and my braced one.

I don't get the comment on the speed of the responses. This is easily the SLOWEST group or forum I read. BY FAR. It seems to have the lowest number of active participants BY FAR of any group or forum I have ever subscribed to.

I wish there were more active participants and more posts in general, whether from the usual folks or new folks. I keep suspecting there are other scoliosis fora besides this one (and Spinekids) which must me jumping. But if it's out there, I can't find it.

I'm not really complaining and am forever grateful for this group.

sharon

Pooka1
06-08-2008, 12:18 PM
I don't think anyone should leave this site for any reason at all, everyone deserves to speak their thoughts no matter how bizarre they are. Although I do think spammers should move on. Or not even come at all :)

If we had a post of the month contest, I would nominate this one. :)

"... everyone deserves to speak their thoughts no matter how bizarre they are."

:D :D :D

sharon

txmarinemom
06-08-2008, 12:36 PM
If we had a post of the month contest, I would nominate this one. :)


I'd nominate it for "spammers should move on"! - LOL. Danielle, it looks like you're batting 1000 today, kiddo :).

Regards,
Pam

Pooka1
06-08-2008, 12:42 PM
That one is great also.

I just love it when even a 14 yo can have a good sense of the bizarre. Just love it. Gives me hope for the future. :)

sharon

ElleBelleCurvz
06-08-2008, 02:56 PM
Haha Thanks Sharon and Pam. :D

:p

mariaf
06-08-2008, 06:17 PM
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
06-08-2008, 06:43 PM
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
06-08-2008, 06:59 PM
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
06-08-2008, 07:52 PM
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
06-08-2008, 08:37 PM
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
06-09-2008, 05:52 AM
Maria,

Do you really have a life? :D 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
06-09-2008, 06:15 AM
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. :D

sharon

mariaf
06-09-2008, 10:41 AM
Maria,

Do you really have a life? :D 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
06-09-2008, 10:58 AM
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 :D)

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
06-09-2008, 01:30 PM
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
06-10-2008, 10:49 PM
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
06-11-2008, 09:06 AM
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
06-11-2008, 03:59 PM
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
06-11-2008, 11:31 PM
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
06-12-2008, 12:31 AM
... 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