Pre-op appt. - some good news

[Pooka1]

The pre-op appt. for S was today. Here are some salient points:

1. Lumbar curves straightens completely on bending therefore compensatory.

2. Fusion will be T4-T12 or T4-L1 with the decision to be made on the table.

3. Risser is 3-4, NOT 0. After I picked my jaw off the floor and mopped up the drool, I asked how that could be when I was told her Risser was 0 in September. The surgeon said it happens. So this almost completely obviates the risk for crankshaft and was the best news we received. He added that the risk of crankshaft would be low for S even at the lower Risser. I didn't pursue it because I didn't care at that point.

4. He rarely does self-donated blood because the overall risk of that is higher than disease transmittance using blood bank blood in terms of how they have to handle the blood. That obviously isn't a full explanation but I accepted it. There is a 30% chance of needing blood bank blood in surgery of this type/duration. I asked if we should station her identical twin will in the lobby in case of needing an emergency donation. He said no. I'm not sure he realized I wasn't kidding. But I realize they wouldn't do that for any number of reasons, least of which they aren't going to simply take my word that the girls are identical though they do look alike.

5. Bone taken from spine and bone bank. None taken from the hip. VERY GOOD NEWS!

So overall, it was very good news. I am very relieved. Both S and W came out of there very happy and wanting to get to school as soon as possible. They made it back at lunch time. Could be worse.

When I dropped them off and signed them intoschool, I happened to see the homebound coordinator in the office. She said they qualify for certain things if a doctor says they will be out at least four weeks. Now based on the material I have, I am not convinced he will write that note. If we get close to four weeks out and need a note, I'll get it then.

Also, middle schools in this county no longer have the teacher as tutor program. I was sorry to hear that because their favorite teacher from last year emailed me and volunteered to be the teacher-tutor. I mentioned this to the homebound coordinator who said that the teacher likely isn't aware that the county doesn't offer that any more.

I can go in and pick up her assignments. Or maybe her twin can since they are in the same classes (except elective). The homebound coordinator mentioned something about English and Math assignments (as opposed to science and social studies I presume) that had to be done a certain way but I didn't catch it. I'll email her for clarification. I think science at is as important as Math and English. Call me a crazy scientist. ;)

S will be about 5' 9" after the surgery, gaining about 2 inches on the table. They grow up so fast! :D

Afterwards, any further growth will be in the legs, if any.

[MATJESNIC]

I think the appt went very well. How great that there will be little (or no) fusion in the lumbar region. Nicole also went from 0 to 5 risser very quickly. It all sounds great to me. Good luck with everything.

[txmarinemom]

4. He rarely does self-donated blood because the overall risk of that is higher than disease transmittance using blood bank blood in terms of how they have to handle the blood. That obviously isn't a full explanation but I accepted it. There is a 30% chance of needing blood bank blood in surgery of this type/duration. I asked if we should station her identical twin will in the lobby in case of needing an emergency donation. He said no. ...

I've never heard of any risk cited for autologous donation, but a pre-op TWO days before surgery (not typical *either* - I did MINE a *month* before ... as do most people) makes it a moot point: It's far too late for autologous *anyway* since it must be done no earlier than 30 days prior and no less than 10 days prior.

And of course it would do no good to have a donor "on call": It takes ±3 days to screeen donated blood.

30% chance of needing blood? Wow. Never heard that one either. Hanson told me it was rare these days (I didn't need mine, BTW).

It's quite strange he can't read the x-rays and interpret whether to take T4 *before* on the table. An experienced surgeon CAN. My surgeon and I discussed this exact topic the morning before surgery (he had studied my films and felt T4 was involved), but then again, all he does is spinal deformity surgery ...

[MATJESNIC]

Pam,

Are you saying that it is rare to need blood or to not need blood. Dr. Dormans used cell saver and said that Nicole would need two units of blood during recovery. That is exactly what she needed. Also, I have heard of surgeons saying they weren't sure whether they would fuse L2 or L3, for example, until they actually went in there.

Yes, it would be too late to donate her own blood at this point.

[Carmell]

Edit to remove my post. It's not worth the effort.

[Pooka1]

Pam,

Are you saying that it is rare to need blood or to not need blood. Dr. Dormans used cell saver and said that Nicole would need two units of blood during recovery. That is exactly what she needed. Also, I have heard of surgeons saying they weren't sure whether they would fuse L2 or L3, for example, until they actually went in there.

Yes, it would be too late to donate her own blood at this point.

Tut tut tut. Don't argue with the "expert!"

Of course her experience is the absolute correct and average and ALWAYS relevant to EVERY OTHER PATIENT ON THE ENTIRE PLANET blah blah blah.

Her surgeon fooled her into thinking he knew which exact levels he was to fuse so that becomes the "gold standard." I can easily imagine her bugging the crap out of him to commit before surgery because she thinks that's the way it has to be.

She does the pre-op a month ahead, well EVERYBODY better DAMN WELL do it that way because ONLY her surgeon can be correct on this. Every other surgeon is an idiot. And if they aren't well then they aren't a pediatric scoliosis expert. That's her "logic."

And if she is unaware of something well if can't POSSIBLY be correct. More "logic."

Pam, GO AWAY. Far away.

Man, if it weren't for all the other great people, I would be so gone. I am spoiled on being able to killfile idiots.

sharon

[Pooka1]

I've never heard of any risk cited for autologous donation, but a pre-op TWO days before surgery (not typical *either* - I did MINE a *month* before ... as do most people) makes it a moot point: It's far too late for autologous *anyway* since it must be done no earlier than 30 days prior and no less than 10 days prior.

And of course it would do no good to have a donor "on call": It takes ±3 days to screeen donated blood.

30% chance of needing blood? Wow. Never heard that one either. Hanson told me it was rare these days (I didn't need mine, BTW).

It's quite strange he can't read the x-rays and interpret whether to take T4 *before* on the table. An experienced surgeon CAN. My surgeon and I discussed this exact topic the morning before surgery (he had studied my films and felt T4 was involved), but then again, all he does is spinal deformity surgery ...


GO AWAY

.....


....

[Pooka1]

I think the appt went very well. How great that there will be little (or no) fusion in the lumbar region. Nicole also went from 0 to 5 risser very quickly. It all sounds great to me. Good luck with everything.

Thanks so much, Melissa. I appreciate the kind words. I felt like celebrating after the appointment. We are all very confident.

sharon

[Pooka1]

Sharon,

I'm glad your appt went well. Sounds like everything is ready to go. We'll be sending our best wishes for a successful surgery and a smooth and uneventful recovery starting Wednesday.

Thanks so much for that, Carmell. We are going in with high hopes.

sharon




And, pre-op the day before or day of surgery even is not unheard of. You sound shocked. Another note about how different every surgeon, and every hospital, is. Different isn't good or bad, just different.

Why shouldn't she be shocked...she's the "EXPERT!"

[beach_chikie]

Hey Pooka1, I'm so glad to hear that the pre-op appointment went well! It's nice to hear some good news before the big day. Good luck on Wednesday, and best wishes for a speedy recovery! :)

I just want to comment on the whole "Pam go away" thing, because I think that Pam had absolutely NO intentions of making you feel hurt or upset. I know that Pam is a huge help to a lot of people on this forum. Sorry, just had to add my 2 cents...

[mariaf]

Sharon,

You and Pam can certainly have different views, but I sincerely wish you would not bring personalities into it - it adds nothing to the forum - and everyone else seems able to refrain from doing this.

I'm not looking to argue or get into any sort of war of words - REALLY - it's just that when you post things like "go away" and other sarcastic remarks it comes off sounding a bit childish and I'm sure you don't want to appear that way.

I truly wish your daughter a quick and smooth recovery.

[Pooka1]

Hey Pooka1, I'm so glad to hear that the pre-op appointment went well! It's nice to hear some good news before the big day. Good luck on Wednesday, and best wishes for a speedy recovery! :)

Thanks so much. We have high hopes for a speedy recovery.



I just want to comment on the whole "Pam go away" thing, because I think that Pam had absolutely NO intentions of making you feel hurt or upset. I know that Pam is a HUGE help to a lot of people on this forum. Sorry, just had to add my 2 cents...

In 15 years of reading newsgroups, I have killfiled exactly three people in all that time. There's your perspective.

If this was a newsgroup, I would have killfiled her by now. I think of her as "Number Four."

[txmarinemom]

Carmell and Melissa, re: transfusion, I didn't clarify "for thoracic fusions".

Braydon's and Nicole were more involved, if I'm not mistaken(?).

[nate03]

Hi Sharon,
I am glad you got the news you wanted to hear today.

Please remember that people post here to learn, share opinions, and offer insight..........what good would a forum be if everyone just posted "that's great" all of the time - nobody would bother to post.........obviously support is important too, but most of us come here to learn and hear of others experiences too.

Best of luck with the surgery!
-Cara

[Pooka1]

I truly wish your daughter a quick and smooth recovery.

Thanks, Maria.

[Pooka1]

Hi Sharon,
I am glad you got the news you wanted to hear today.

Please remember that people post here to learn, share opinions, and offer insight..........what good would a forum be if everyone just posted "that's great" all of the time - nobody would bother to post.........obviously support is important too, but most of us come here to learn and hear of others experiences too.

Best of luck with the surgery!
-Cara

I disagree with your analysis of why I see things the way I do.

Also, Pam's experiences are not necessarily relevant to other people. She needs to learn that.

Thanks for the good wishes.

sharon

[Pooka1]

Carmell and Melissa, re: transfusion, I didn't clarify "for thoracic fusions".

Braydon's and Nicole were more involved, if I'm not mistaken(?).

You don't know a damn thing about my daughter though you pretend.

GO AWAY

sharon

[MATJESNIC]

Nicole had a very large rotation by the time we had the surgery. He said that the method that they would use to de-rotate and correct was a good one but that the downside was that it would take long and she would lose blood. I am sure many of the kids aren't rotated as much. I was so hoping that he was wrong and that she wouldn't need the blood transfusions. But she did. But I was glad that I was mentally prepared for that.

[Pooka1]

Nicole had a very large rotation by the time we had the surgery. He said that the method that they would use to de-rotate and correct was a good one but that the downside was that it would take long and she would lose blood. I am sure many of the kids aren't rotated as much. I was so hoping that he was wrong and that she wouldn't need the blood transfusions. But she did. But I was glad that I was mentally prepared for that.

Well, blood transfusion is very very very safe these days. That's why he doesn't have kids self donate very often. Her fusion isn't that long and given that only 30% of these types of patients need transfusions, I'm betting she won't need one.

I got four units when I bled out with my ruptured ectopic and didn't contract anything. There's one data point!

I asked about the correction for the rib hump. S definitely has one. He said it would be very much improved but not perfect.

I asked about rib removal given they grow back within 2-3 months and he said it was rarely done any more.

S is very flexible and we are getting this early. I hope she gets a very good correction after going through this.

sharon

[txmarinemom]

Well, blood transfusion is very very very safe these days.

Did I miss where someone questioned the safety of the blood bank stock? Agreed ... it's very safe.

[Pooka1]

Did I miss where someone questioned the safety of the blood bank stock? Agreed ... it's very safe.

PHEW! That's one thing my surgeon managed to get right!

Maybe I should have just had him consult you first all the really important matters since you know so much more than he does.

[txmarinemom]

PHEW! That's one thing my surgeon managed to get right!

Maybe I should have just had him consult you first all the really important matters since you know so much more than he does.

*sigh. Nevermind. You're absolutely right, Sharon. I know *nothing*.

Happy now? Will it make the big red letters go away?

[amandap]

Hi Sharon,

I'm glad your daughters appointment went well and I hope that her upcoming surgery goes well and recovery is smooth.

Everyone who's joined these group forums has valuable information to offer through their own personal experiences.

I don't visit here often but when I do I tend to share my personal experiences and take at face value others' experiences as well. I realize I am playing devils advocate but keep in mind that the advice Pam has given are just her experiences and though her situation may not be exactly as your daugthers it is still valuable.

Regardless of how great or horrible someones surgery turned out it's important to hear and keep in mind both good and bad experiences. While your doc may recommend or suggest one thing it's always a good idea to have a second, third or even fourth opinon. And while your doc may say one thing someone elses doc may say something else. The only thing I'm saying here is that it never hurts to have options and from what I can tell Pam is only trying to give you alternatives to keep in mind just in case.

Pam is very knowledgeable about scoliosis and various treatments because she's lived her life with scoliosis and has recently had fusion surgery so to me her experiences are invaluable.

I sincerely hope all goes exactly as your surgeon has said it would go otherwise I'm afraid your headed straight for disappointment should anything go awry. Please keep your eyes and ears open for any what if's in never hurts to be mentally prepared for the worst while being optimistic and hoping for the best.

Amanda

[Pooka1]

Amanda,

Thanks so much for your reply.

I guess we are going to have to agree to disagree both on how Pam comes across and her apparent intentions.

I do not assume Pam's fusion surgery as an adult is necessarily relevant to my daughter's surgery and I don't understand why others might.

In re doctor's telling patients different things, how are us lay folks ever supposed to come to a bottom line on what is better or worse? Pam routinely concludes that if another surgeon does anything different than her surgeon, that other surgeon can't possibly be a specialist in this surgery. She has now implied that a few times. How comical is that? Given that our surgeon is in fact an expert on this, it is beyond comical. Her mistake on that, her inability to read for comprehension when misquoting folks, inter alia, necessarily undermines my opinion of her other statements.

ETA: I find the implication that I wouldn't get an expert in pediatric orthopedic surgery for AIS insulting. Pam has implied that a few times. Who would fail to get the appropriate expert for their child? It's like accusing me of being an incompetent parent. And she does it blithely. I'd like to see how blithe she is if someone impugns her parenting. You would see some hypocrisy there I bet.

In re being disappointed if anything goes awry, I think EVERYONE would feel that way, not just me. I know the risks. All I can do is get the best care for my daughter I can find. That's all anyone can do.

sharon

[ElleBelleCurvz]

I wish you luck :) sounds like the pre op went well, but I really don't think anyone is trying to ATTACK, i think theyr just trying to help u but...thats my opinion, best of luck

[Pooka1]

I wish you luck :) sounds like the pre op went well, but I really don't think anyone is trying to ATTACK, i think they're just trying to help u but...thats my opinion, best of luck

I would liken it to the situation where most horses who are abused are abused not out of violent attacks by people but out of ignorance. Reckless ignorance.

Thanks for the good wishes.

sharon

[txmarinemom]

Amanda,

Thanks so much for your reply.

I guess we are going to have to agree to disagree both on how Pam comes across and her apparent intentions.

I do not assume Pam's fusion surgery as an adult is necessarily relevant to my daughter's surgery and I don't understand why others might.

In re doctor's telling patients different things, how are us lay folks ever supposed to come to a bottom line on what is better or worse? Pam routinely concludes that if another surgeon does anything different than her surgeon, that other surgeon can't possibly be a specialist in this surgery. She has now implied that a few times. How comical is that? Given that our surgeon is in fact an expert on this, it is beyond comical. Her mistake on that, her inability to read for comprehension when misquoting folks, inter alia, necessarily undermines my opinion of her other statements.

ETA: I find the implication that I wouldn't get an expert in pediatric orthopedic surgery for AIS insulting. Pam has implied that a few times. Who would fail to get the appropriate expert for their child? It's like accusing me of being an incompetent parent. And she does it blithely. I'd like to see how blithe she is if someone impugns her parenting. You would see some hypocrisy there I bet.

In re being disappointed if anything goes awry, I think EVERYONE would feel that way, not just me. I know the risks. All I can do is get the best care for my daughter I can find. That's all anyone can do.

sharon

Oh, please. Editing, editing, editing ... add in some Latin after you Google to make sure you've got the proper phrase ...

*yawn.

And, say what you want about my parenting ... at almost 19 and 20, I have been known to refer to them by names that would implicate I'm a loose woman. (snicker)

BTW, I guess I did ok. My oldest defends your rights to say whatever you want, wherever you want, and I'm proud he does - whether or not I agree with you.

Pam

[Pooka1]

Oh, please. Editing, editing, editing ... add in some Latin after you Google to make sure you've got the proper phrase ...

*yawn.



I used the phrase "inter alia" in a research paper I published in 1993 in a peer-reviewed science journal based on some of my post doctoral research. So I've been familiar with the phrase at least that long.

In contrast, YOU just googled it to see what it meant. You wouldn't even know to italicize it or why to do so.

See how you project? See how transparent you are?

And people wonder why I think you are ignorant. I'm going to repost this exchange if it comes up again.

GO AWAY.

sharon

[nate03]

I would liken it to the situation where most horses who are abused are abused not out of violent attacks by people but out of ignorance.




That said, my horse benefits from "chiro." My horse has pain on certain regions of his topline associated with his recovery from an injury. The vet does some quick push motion and the pain is instantly removed. Now this is obviously either freeing an impinged nerve or otherwise deadening the pain response because you canNOT produce a pain response on that portion of his back after the vet does the voodoo that he do. :eek:


Was your paper about horses?

You know Sharon, Pam is here trying to help people prepare for a surgery which she knows about first hand - why are you here? Just to argue with anyone who shares an opinion or advice that isn't what you want to hear. Is this why you only got 1 opinion before major surgery for your daughter? Liked that one, so why listen to anything else?

I remember in the last thread you mistakenly quoted Maria, saying that you had already told her who the dr was, when you had not - she did not get angry at you, yet you cannot let go of Pam's misread and keep bringing it up all the time, even after she apologized.

The rest of us are here to learn from each other, if you don't want anyone's opinion here, why do you post? Maybe someone, including Pam, will make a point that could make a big difference in your daughter's surgery or recovery - but you think you already know all the answers - so Why do you post?

[ElleBelleCurvz]

Was your paper about horses?

You know Sharon, Pam is here trying to help people prepare for a surgery which she knows about first hand - why are you here? Just to argue with anyone who shares an opinion or advice that isn't what you want to hear. Is this why you only got 1 opinion before major surgery for your daughter? Liked that one, so why listen to anything else?

I remember in the last thread you mistakenly quoted Maria, saying that you had already told her who the dr was, when you had not - she did not get angry at you, yet you cannot let go of Pam's misread and keep bringing it up all the time, even after she apologized.

The rest of us are here to learn from each other, if you don't want anyone's opinion here, why do you post? Maybe someone, including Pam, will make a point that could make a big difference in your daughter's surgery or recovery - but you think you already know all the answers - so Why do you post?

all i can say, AMEN

[Pooka1]

Was your paper about horses?


No. My horse was the victim of incorrect farriery. The long toes left on the hinds resulted in inefficient break-over such that he was developing back pain.

We fixed the toes, the break-over improved, and now he has no back pain.

He is coming through rehab and is back on track. It's hard to find good farriers.

sharon

[Pooka1]

I remember in the last thread you mistakenly quoted Maria, saying that you had already told her who the dr was, when you had not - she did not get angry at you, yet you cannot let go of Pam's misread and keep bringing it up all the time, even after she apologized.


I did not use quote marks implying it was a direct quote. And the quote Pam made up was entirely designed at making me look like an idiot.

That is entirely different from misremembering who I sent a PM to... no idiocy was implied in that. It was an innocent error in contrast.

sharon

[Pooka1]

You know Sharon, Pam is here trying to help people prepare for a surgery which she knows about first hand - why are you here? Just to argue with anyone who shares an opinion or advice that isn't what you want to hear. Is this why you only got 1 opinion before major surgery for your daughter? Liked that one, so why listen to anything else?


Okay I've now gone through my PMs and count four people who named Pam directly or alluded to her behavior and hoped I didn't get too exasperated with her. Some mentioned Pam's history of this bad behavior. There were another three or so who did not mention her in any regard. Data always.

Are all those people misreading Pam also? Just curious.

I stated how many opinions I got and it was more than one. Moreover, I'll also repeat that the idea of lay people deciding between one or another doctor beyond the credentials, areas of specialty, board certifications, number of surgeries, etc. is questionable to say the least. I'm sure there are examples of folks who run away screaming from some doctors who others just think are the best surgeons on the planet. Can you really doubt that?

Last, I haven't argued with anyone else and I have most certainly appreciated every else's advice. I'll stand on my record on both counts.

Maybe those four folks and I are all crazy. Who knows?

sharon

[terri watkins]

I say no to fruitcakes, I say no to pshycos, I say no to anyone that cuts down anyone that has been through this traumatic surgical intervention and are still willing to offer their advice on the matter ...Some people don't need support from a forum, they need a pshycological evaluation and some serious meds ( yes you pooka sharon or bot whatever you are). AND THIS FORUM NEEDS AN IGNORE BUTTON... do we have ignore buttons? I will now return to gaining support and advice reading from afar... oh yeah and I even say no to horses. You are a idiot. I will be so glad when your daughters surgery is over I hope it is soon and that she does well so you will get the heck out of here and allow others to focus and use this forum for which it was intended.

[Pooka1]

AND THIS FORUM NEEDS AN IGNORE BUTTON... do we have ignore buttons?

If this forum had a way to killfile certain posters we wouldn't be talking about this now or ever. And you wouldn't have found it necessary to get upset because I would have quietly killfiled her a long time ago.

I may never get used to forums because of this.

[terri watkins]

You would argue with a freakin wall woman... what is your problem ... who cares what your problem is ... just shut up for awhile...you are offensive and stupid and I am at your level right now for even responding but I don't give a crap. I am sick of having to see your dumb posts arguing and occupying valuable space.. YOU GET LOST

[txmarinemom]

I did not use quote marks implying it was a direct quote. And the quote Pam made up was entirely designed at making me look like an idiot.

sharon

I'm not even *touching* that.

And, Sharon? FYI (psssst)... anyone who deals with legal contracts knows inter alia. We all know how educated you are, dear. You've made a point to stress it SEVERAL times.

That's not the point of this board, nor is the introduction of topics you've not yet experienced simply to argue answers that don't agree with what you think you know. It all comes to us in time, and I've honestly tried to help.

Speaking of education ... in my studies, I don't recall "Large Red Letters 101" or "Employ Kindergarten Phrases (in Adult Conversations) for Fun and Profit" ...

It's truly regrettable you had to drop the class after that first lesson, apparently titled(?) "Go Away". ...

[terri watkins]

go ahead take the rest of this space below me and argue with yourself for awhile I'm gonna go elsewhere

[Pooka1]

You would argue with a freakin wall woman... what is your problem ... who cares what your problem is ... just shut up for awhile...you are offensive and stupid and I am at your level right now for even responding but I don't give a crap. I am sick of having to see your dumb posts arguing and occupying valuable space.. YOU GET LOST

I take it someone is twisting your arm and making you read my posts? It must be hell.

sharon

ps. I agree horses are completely off topic but I was asked a direct question.

[mariaf]

I take it someone is twisting your arm and making you read my posts? It must be hell.

sharon


Sharon,

On another thread I suggested that if Pam's posts upset you so much that perhaps you should not read them and you seemed to get very upset with me for that. At least I asked you nicely though and I can hold my head high around here.

It seems you just enjoy being nasty. I wonder why? Aren't you embarrassed when you go back and read how your posts sound?

[Pooka1]

Sharon,

On another thread I suggested that if Pam's posts upset you so much that perhaps you should not read them and you seemed to get very upset with me for that. At least I asked you nicely though and I can hold my head high around here.

If you'll notice, I stopped responding to her for a while until she posted the bogus quote. Then I admit all hell broke loose. I am still angry about that type of reckless behavior. I am still angry at her constant implications that I am an incompetent parent. (Why yes, Pam, I ran out and got an adult ankle specialist who has done no other type of surgery for my child with AIS. Geez.) Then I felt I had to respond.


It seems you just enjoy being nasty. I wonder why? Aren't you embarrassed when you go back and read how your posts sound?

This is actually not the first forum on which I have participated. On another one, on another topic, there is/was another person who was similar to Pam in many ways. There, the moderators pull the entire thread when it gets nasty. Two threads have been pulled so far because of exchanges between her and me. She stopped posted after each pulled thread, likely because she got a warning and possibly a temporary ban after the second time. She doesn't post there any more as far as I can tell. I have ZERO warnings and ZERO bannings for responses similar to, or much more pointed than, what I have posted here. Imagine that.

There's a data point.

Maybe you don't realize I am not alone in my reaction to Pam. Or maybe you don't care. I wouldn't blame you if you didn't care. But you shouldn't post things assuming it isn't the case like you have done here.

I post here because there are several other parents who are going through this with their children. They have orthopods and surgeons who say various things. I want to hear about that. I post what my orthopod and surgeon say. I want to see data rich posts. I don't want to see nonsense like radiologists can't measure Cobb angles, only orthopods can, another Pam "gem."

What I don't want to see is claims that if a surgeon deviates of what one surgeon in Houston does, they are incorrect. I also don't want to see misquoting as sport.

Enough posts have been taken up by this nonsense.

sharon

[Snoopy]

Okay, ENOUGH ALREADY! I've been coming to this forum for several years and have never experienced anything like this! I am sick of all the childish behavior!

Pam,
I am one of those 4 people who sent Sharon a pm about you. I originally told her I wouldn't reply to her posts when you were replying. But because I felt I had helpful information to share, I did and have continued to do so. I mean no offense to you. I have learned a lot from you and I truly hope you don't go away. Again, I mean no offense to you but some times the way you word things makes them sound mean.

Terri,
Wow, you've posted what, maybe 6 times and that makes you an expert on Sharon? Again, no offense, but Sharon doesn't need another person attaching her.

Sharon,
I'm sorry you are having such a hard time on this forum. I've always found this forum very helpful and have made some great friends on here. I spent the day with one of them this past weekend and the first thing she said to me was "what's up with the forum?" It doesn't have to be this way!!!! I understand why some people react to your posts the way they do--it sometimes seems like you are withholding information or just not willing to share. You've explained why you won't say the doctor's name on the forum for fear of what people will say. That's your right.

To a few others,
Why are you fueling the fire? I understand defending a friend--what kind of a friend would you be if you didn't--but some of you are very new to the forum and don't truly understand everything that's taken place.

I'm sure I'm not the only person feeling this way. Maybe others just don't want to say anything because of the responses I'll be getting. At this point I don't care, i just want this forum back to what it is supposed to be....a place to come for information, friendship and support.

I'll step down now without checking my spelling, grammar and editing, so please don't correct me on any of that. Sharon and Pam, can you two possibly agree to disagree and NOT respond to any thread that the other one starts? The down side to doing so would be that you'd miss out on very useful information, but I guess you'll just have to accept that.

Mary Lou

[Pooka1]

Mary Lou,

You are a brave woman. Braver than I.

Thank you.

I will do as you suggest.

Best regards,
sharon

[terri watkins]

Yes I have only a few posts ... because when I did try to post in the past AKA POOKA WAS A BUTTHOLE ... always jumping in with crap and not allowing anyone to focus on the topics and questions asked....I do read everything I can on here daily to gain all the knowledge I can but I have learned nothing from Sharon aka pooka except that she already knows everything and that it's all black and white and that she is foolish

[Susie*Bee]

Mary Lou-- Thank you. I've had company Easter weekend, and it's taken forever to read up on what I missed on the forum-- and it has left me feeling so stressed out just now. You summed up my own thoughts so well.

Sharon-- I'll be praying for S tomorrow. Please let us know how the surgery goes when you get a chance "after"...

Everyone else-- you know that I think of you as family. I try to check for birthdays, keep tabs on surgeries, etc., and I really care about you all. It hurts like **** to see all this fighting. And sometimes I think of all the non-members who log on and read our posts-- and wonder if we are truly doing damage.

I prefer to think of "Aunty Del" and her request for a group hug...

Ooops-- daughter and her husband just drove up, so I've gotta go. Hugs to all...

[mariaf]

Mary Lou,

I think it's safe to say that you and I have been around a while and I have nothing but respect for you - and I'll go out on a limb and guess (at least I hope) that you feel the same way.

Now, even if some folks seem like "newbies" because of number of posts, etc. that doesn't mean they haven't been reading or following or that they don't have just as much to share (I know you weren't saying that BTW). My point is that perhaps they are the type that feels the need to speak up only occasionally.

I understand what you are saying in your post but I KNOW most of the people that have "clashed" with Sharon. BTW, Terri's posts were not random attacks on Sharon just to chime in and join the gang. Terri had posted previously and felt that Sharon responded rudely. I don't wish to get into that - just to point out that she wasn't just jumping on the bandwagon - in fact, she exercised great restraint waiting as long as she did to chime in IMHO.

My point is, these folks are NORMALLY nice, calm folks that are eager to help ANYONE (and I mean to go above and beyond to help - I have SEEN it). Even at the beginning of all of this, they had Sharon's daughter's best interests at heart and voiced their honest concerns that perhaps returning to school full time after 3 weeks was a bit too optimistic and Sharon seemed unable to accept what they were saying even though some of them, or their kids, have LIVED it. So I guess what I am saying is that for some reason Sharon seems to bring out the worst in these people. My guess is the reason is her sarcasm (seems when anyone questions her she can't control her tongue - or fingers in this case, I guess) and she also seems to know everything about everything - from scoliosis, to parenting, etc. - her way is best - and she assumes things about other people that are not true (i.e., their intent) and I just can't convince myself that it's all of these OTHER people, including ME that are just picking on her WITHOUT reason.

And as far as Sharon bringing up Private Messages - I'm sure that we have ALL gotten PM's about others saying "you're right and so-and-so is wrong". I know I have - but I never posted about it! I think it's a bit seventh grade to bring it up actually. Just fuels things even more. And she's bothered by Pam's "quote" marks - I mean c'mmon!

I agree with you, Mary Lou, in that I hope the bickering stops and we can get back to business.

But I ask EVERYONE that if someone else posts something that you don't agree with, try to respond CIVILLY and think before you type something that sounds like it came from a teenager having a hissy fit!

Again, Mary Lou, I respect you enormously and I have never known you to be anything but a very valuable asset to the forum. I hope you, in turn, respect my style of calling it like I see it - because unfortunately (or fortunately, depends how you look at it) I don't know how to be any other way.

Best regards - and I hope your family is well.

[Singer]

You know, as (mostly) women on this forum, I think we naturally seek to establish relationships with each other. We are perhaps people who ordinarily wouldn't be mixing together, but our common problem brings us together. In that way we are sort of like family -- we are thrown together rather than choosing each other. In that context, it's natural that the stronger personalities within our group are going to clash.

My wish is that everyone keep in mind that we don't want to scare off anyone who's logging onto this forum for the first time.

[cherylplinder]

Pooka,

I think we have an ignore button. I will see if I can remember how it works.

If you go to your private messaging system, look to the lists on the left of the screen. There is a buddy, ignore list system. I think if you enter the name on the ignore lists, you won't see their posts.

Best wishes in your upcoming surgery for your daughter! Don't let all the hoopla keep you from getting the support you need.

I think that if you started a thread to update your support system, and if you ask someone to refrain from posting on that thread because you find their posts inflammatory, that they should refrain from posting.

I don't think anyone owns a thread, but the point of this forum is support and information. Without support, the information is useless. We all need the support to get through our crisises with scoliosis.

Best wishes!

[Pooka1]

Pooka,

I think we have an ignore button. I will see if I can remember how it works.

If you go to your private messaging system, look to the lists on the left of the screen. There is a buddy, ignore list system. I think if you enter the name on the ignore lists, you won't see their posts.

Indeed you are correct!

I am now going to apologize to all for not finding that button earlier. That was a bad error on my part. So much nonsense.



Best wishes in your upcoming surgery for your daughter! Don't let all the hoopla keep you from getting the support you need.

I think that if you started a thread to update your support system, and if you ask someone to refrain from posting on that thread because you find their posts inflammatory, that they should refrain from posting.

I don't think anyone owns a thread, but the point of this forum is support and information. Without support, the information is useless. We all need the support to get through our crisises with scoliosis.

Best wishes!

Thanks so much for the good wishes.

One thing... I am not looking for daily affirmation. Almost the entire point of being here is to post what my orthopod and surgeon say and to hear what other orthopods/Surgeons say.

If it differs, then I do further research to figure out why they differ. An example is the difference between when other kids have returned to school and what my orthopod and surgeon and hospital material say. I will report back on our data point when it happens for anyone who cares at that point.

What I am NOT here for is to have some self-styled expert think she knows more than an orthopod/surgeon and or suggest that if anything differs from what her surgeon does then the other surgeon is automatically not a scoliosis specialist or is otherwise an idiot. Since our surgeon is in fact an expert in this area, the mere fact that she concludes that in her mind is evidence of her inexperience. It's comical.

Still, I don't mind Pam posting in my threads if she has actual DATA and if she refrains from her "logical" conclusions. There is a reason why some folks have a problem with her, whether certain other folks acknowledge it or not.

Last, Maria, I guess labeling my reference to the PMs as middle school antics at least lets you avoid addressing yourself to the actual point that at least five people are willing to note a problem with Pam. Is it really surprising news? I'll bet she has behaved that way all along and has driven away others.

Chris... I agree.

sharon

[Pooka1]

Yes I have only a few posts ... because when I did try to post in the past AKA POOKA WAS A BUTTHOLE ... always jumping in with crap and not allowing anyone to focus on the topics and questions asked....I do read everything I can on here daily to gain all the knowledge I can but I have learned nothing from Sharon aka pooka except that she already knows everything and that it's all black and white and that she is foolish

I agreed the horse stuff was off topic. I won't do that again or at least I won't devote a post to off-topic material again. That was wrong.

Love,
The foolish BUTTHOLE BOT

[Pooka1]

Mary Lou-- Thank you. I've had company Easter weekend, and it's taken forever to read up on what I missed on the forum-- and it has left me feeling so stressed out just now. You summed up my own thoughts so well.

Sharon-- I'll be praying for S tomorrow. Please let us know how the surgery goes when you get a chance "after"...

In re Mary Lou... it's rare to see such brave posting. It is valuable because it is entirely constructive. She is to be commended and admired.

Thanks Susie for your good wishes. We are confident going in.

Best regards,
sharon

[Snoopy]

Susie Bee,
You're welcome, I felt someone had to say it and now that I did, I feel much better. :)

Maria,
No need to go out on a limb---I respect you completely. I value you as a friend (NY accent and all ;) ), I trust your judgement, I feel comfortable asking you anything, you are one of the people who has helped me the most on this forum, shall I go on? I truly value you and our friendship. Please DO NOT change. I'm glad you call it like you see it.....I tend to do that myself sometimes (maybe that's why we get along so well).

There are a lot of things on this forum that I don't agree with--whether it is a person, a treatment plan, or whatever. We are all different and we will never all agree on everything. I just want our forum back to what it is meant to be--a place to share information and support.

Sharon,
Best of luck tomorrow. Although the surgery will finally be over, you still have a long journey ahead of you. Stay strong.

Mary Lou

[RugbyLaura]

Sharon,

Wishing your daughter, you & the rest of your family all the best for tomorrow. I'm so glad her Risser puts her out of danger of Crankshaft and that the lumbar curve is compensatory.

I found your initial post on this thread extremely informative - keep up the good work & join me in ignoring the negative elements on this forum. (Today's resolution, am intending to keep it but who knows?)

Will be thinking of you tomorrow.... I'm sure it'll be fine.

xx

[mariaf]

keep up the good work & join me in ignoring the negative elements on this forum.

Boy, for people who are ignoring the "negative elements" you and Sharon sure do bring them up in every single post.

I think Mary Lou's plea was ENOUGH ALREADY!!!!

Grow up, please and stop bringing up old arguments so we can all move forward.

PLEASE!! (sorry I don't have time to do the big red letter thing).

[scoliboymom]

Just wanted to send my good wishes your way for tomorrow. Will be thinking about you. Let us know when you can how things are going. Cyberhugs to you and your family.
Ramona

[Pooka1]

Sharon,
Best of luck tomorrow. Although the surgery will finally be over, you still have a long journey ahead of you. Stay strong.


Let's all stay strong. Thanks for everything.

sharon

[Pooka1]

Sharon,

Wishing your daughter, you & the rest of your family all the best for tomorrow. I'm so glad her Risser puts her out of danger of Crankshaft and that the lumbar curve is compensatory.

Thanks, Laura (is that right?). I just want to add that folks who have this surgery at lower Risser's aren't necessarily at high risk for crankshaft per what my surgeon said. I think it's important to add that he said that. I got the impression it isn't that common no matter the Risser but I don't know what he meant really.



I found your initial post on this thread extremely informative - keep up the good work & join me in ignoring the negative elements on this forum. (Today's resolution, am intending to keep it but who knows?)

Will be thinking of you tomorrow.... I'm sure it'll be fine.

xx

Thanks. I just post the most high quality information I have. That means what the orthopod, surgeon, and hospital material say as best as I can relate it. Just by chance, because this isn't my field, I am bound to mis-report something or another. That might be the source of some issues that have come up on the forum. I will say I have been surprised and, at times, fascinated, by the variance in experience with this surgery. Truly every case appears different.

In re negative elements, I post to certain unmoderated groups and thought I have overcome the "form versus substance" issue. That is, if the information is good, the form it is delivered in shouldn't matter. But I am ashamed to admit I haven't overcome it enough. I guess when someone implies I'm an incompetent parent for an imagined lack of picking an appropriate expert for my child's surgery, it's over my personal limit because it involves someone other than myself. Still, I'm ashamed that anything is over my limit at this point... it's ridiculous. Folks on the other groups wouldn't recognize me reacting like this.

Sorry for going on and on. Thanks again so much for the kind thoughts for S.

Best regards,
sharon

[Pooka1]

Just wanted to send my good wishes your way for tomorrow. Will be thinking about you. Let us know when you can how things are going. Cyberhugs to you and your family.
Ramona

Thank you very much, Ramona. I'll try to check in as soon as S is through the hardest part.

Best regards,
sharon

[laurieg6]

I hope S's surgery goes really well and will look forward to reading about it.

[Pooka1]

I hope S's surgery goes really well and will look forward to reading about it.

Thanks, Laurie. I'll post when I can.

Here we go...

sharon