Originally posted by hdugger
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Stop trying to convince that official western medical community is the only option..
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71 and plugging along... but having some problems
2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago
Corrected to 15°
CMT (type 2) DX in 2014, progressing
10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring
Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me
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Thank you Susie. I'll keep the reminder signature for a day, just to keep myself in line
My son also likely straddles the fence. I am so hopeful for the role of exercise, in general, but I fear that because he has congenital scoliosis and is self-fused at the apex of his curve, that no amount of adjusting his muscles is going to unfuse that part of his spine and make it straight. Even the people at the ISICO clinic (a group of Italy that's really plowing forward on this stuff) were very guarded in their prognosis. Just not enough cases like his.
So, although we'd prefer conservative treatment, we prepare ourselves for eventually needing surgery. But, the risk that way is that he also has kyphosis, and almost all of the kyphosis cases I've seen operated on recently (with one exception in this forum) have had not so great outcomes. A few had problems so bad that it left them in the throes of a depression and regret.
So, what to do, what to do?
I just learn as much as I can, both ways, and hope that, when we must make a choice, it will lead to the brightest future for him.
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Originally posted by hdugger View Postsorry susie, I completely apologize for throwing around surgical/non-surgical as if everyone who had surgery believed the same things. No, I absolutely do not mean you or the majority of people on this forum who are just trying to figure out what you want to do. If I in any way made you think that just having surgery was a betrayal to those of us have haven't, then I'm a complete idiot and I don't care who knows it. Sorry, wrong apology (because I have a friend who write a blog about apologies). My words were stupid and ill-chosen, and I understand why it felt like an attack. It was completely not meant that way.
I'm using "surgical" to stand for "surgical and stridently anti-non-surgical" and I will try to use exactly that phrasing in the future. I think that applies to exactly one person on the forum (but one who has something like 5% of the total posts, so it sometimes feels like more). The talking-about-bracing-is-cavalier is maybe two more people. So, it's a tiny fraction. But, even with just a handful of people, it is omnipresent. So, the whole tone of the place is set by, like, .01% of the forum.
Again, I'm an idiot. I'll even put it in my signature so that everyone knows Everything else you say is correct. I'll put that in my signature too.
[Edit: Went back to previous posts to make clear that I was trying to address only the stridently anti-conservative treatment crowd. Want to state this here in case my edits make Susie*Bee seem like she's responding to nothing.]
Note to Rohrer
OK, that whole "if you just don't use their name when you talk about them, it will be much better" just completely blew up on me. It really cannot be more polite to let Susie*Bee! (for chrisakes!) think that I'm insulting her just because it's not polite to call Sharon out by name. I am shifting back to specifically calling people out by name instead of, you know, just letting the whole forum think that I'm mad at them.
[I have added a clarification to preceding posts sort of cutting it both ways - specifying that they're directed towards stridently anti-non-surgical posters only, but not actually naming any names. Is *that* the polite method???]Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by mashkine View PostAt least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.
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There was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by Susie*Bee View PostWe just are all in the same boat and need to help each other and listen to each other.
Originally posted by Susie*Bee View PostMy own thought is that EVERYONE should be respectful of others on the forum.Last edited by flerc; 05-24-2013, 12:27 AM.
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Originally posted by rohrer01 View PostThere was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.
I am looking forward to foofer's radiographs and those of the other people Tom is helping. I know he doesn't have time to crunch the data but I can table and graph the data for him if that helps.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by flerc View PostShe is in other boat, a very different boat of course.Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
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Originally posted by rohrer01 View Postcategorized the whole forum that way.
Originally posted by rohrer01 View PostAND WORKED IT OUT VIA PM like ADULTS should.
How does your agreement via PM help anyone but yourself?
Originally posted by rohrer01 View Postgo to the "teacher" and report it.
Originally posted by rohrer01 View PostI was talking about refuting ideas
Here's a question. Why do you think this is a fight between Pooka and I? It's not. I think Pooka is very funny, and I'm not particularly concerned if she thinks I'm educated or knowledgeable enough to think about the things I want to think about. It's not much nevermind, for me. I know what I know. *That's* not the point. Here's the point:
Fact: Every week, I hear a patient going in or coming out of surgery express their thanks for finding a place where people understand and support them.
Fact: Every week, someone who is pursuing bracing or exercise leaves the forum and returns in bursts of one of two posts. Person after person pursuing conservative treatment says that they feel afraid to talk about what they're doing in this forum.
Either that's fine -we just all make nice and send PMs to each other and return the forum to its status quo - or it's not. *That's* the point. And there's only one schism that matters. If you're *fighting* for that status quo, if you're *fighting* to make this a place where surgical patients stay and everyone else feels they must depart, then you and I are not on the same side. Then, yes, I am fighting with you. Not 99% of the posters in here who are just hoping that *we will all just shut up*. But, yes, with you. With Pooka. With anyone who thinks that that status quo is worth fighting for.
I'm not much interested in arguing anymore. I wanted to create a tiny space where someone made it clear to participants seeking conservative treatment that there's nothing wrong with them. I think I've done that. There's not much point in doing anything else.Last edited by hdugger; 05-24-2013, 09:25 AM.
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hey Sharon.
attacks on this forum of a personal nature have become outrageous...
they should not be allowed, in my opinion...
i will stand in anyone's boat...and i can't swim...who is attacked...
so i am IN Sharon's boat...
that means i am up for attack, i am sure...for no reason other than
defending Sharon...who needs no defense...
she is fine all on her own....BUT....
as a social worker and special ed teacher...I HATE BULLIES
there...bring it on if you want to...
personal attacks are sickening...to me and others...
jessLast edited by jrnyc; 05-23-2013, 11:47 PM.
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Flerc, I know you're trying to help. Please, don't go after Susie. She's a good soul. Read the post again - I sort of misread it the first time myself. She's not fighting with you. She's trying not to fight with anyone, but she's not fighting with you. Just take my word, OK?
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what...only go after certain people???
Sharon is a "good soul" too...
she just wants to keep it to research and facts and not
weirdo theories....the words "proved" and "repeatable" come to mind...
having had to take statistics for 3 different graduate degrees....none
in physical sciences, thank goodness....i do remember some of what
research involves...true research, the stuff that can be repeated, verified,
the stuff that is quantifiable....but then people who know research
know what it involves...
why "GO AFTER" anybody here?
that is the point? why can you not stick to ideas...?
"GO AFTER" ideas...not people...
who is anyone here to decide which person is a "good soul"
i will continue to report bullying posts...
i believe Sharon never does...
but i have no problem calling out bullies for "going after" people
in a personal way...
didn't like it in schools and classrooms...it is even worse when so called
"adults" do it
they are supposed to know better!
jess
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Originally posted by Pooka1 View PostI don't know what boat you are in but I'm in a cabin aboard the R/V Evidence.
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Oh, sorry, one more thing for Flerc.
So, I can't recall what words you're using, but I think we should stick to:
conservative treatment vs. anti-conservative treatment
and not anything like surgical vs. non-surgical.
The first says what we want to say - there are people who are pursuing these treatments and then people who are against them pursuing those treatments (or quite comfortable with them having to flee the forum in order to discuss those treatments)
I really don't want to leave the impression somehow that we now want to make everyone who's struggling with their surgical decision/recovery/etc uncomfortable. I'd feel just awful if I made a place for the conservative treatment folk and left the surgical folk feeling uncomfortable or out of place. That's the exact opposite of what I want.
So, conservative treatment vs. anti-conservative treatment. I think that narrows it down correctly.
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