Re: New Rules Forthcoming for Group

[Guest guest]

Thank You ,

Hi ,

I have not posted in forever, but I continue to appreciate your

efforts! I think this is a great idea!

I will post more soon. I have had hardware removal for some of you

that have asked and it was successful and no more hardware was needed

for that fusion's stability, of course that did nothing for my

degeneration above and below my fusion. Neck pain is one of my two

ills and so reading and posting on the computer is not great for me,

but I do love getting all the correspondence.

I know a while back that you asked for donations in helping you manage

this site. Not having kept very current lately, I wanted to know if

you would still like them and where should I send?

Also, I have had a very bad experience with one doctor (not one of the

biggies mentioned here), but don't want to slander his name. Another

friend of mine, who has luque rods and a daughter with scoliosis had a

ridiculous visit with him also and she will never be back. What is

your opinion of that? I would never want any list members to go to

him, but at the same time don't feel right about using his name???

Okay, enough for now....thanks again,

- Texas

1985 Harrington rod and distraction hooks T4-L2

with Dr. Dickson, Houston

Rod Removal 2003 and cervical fusion c6/7 (unsuccessful)

SI joint severe pain and cervical pain - constant

[Guest guest]

Hi, --

It's wonderful to hear from you again! Thanks so much for posting.

I think that Andy Stanton, in particular, may be especially

interested to hear about your hardware removal. She is facing

something similar.

With the problems you continue to have, are you considering further

surgery? I know this is a highly personal, individual decision, and

no one can make it for you. One thing I remembered, reading your

post, was my skepticism when Dr. Rand told me my neck pain would get

better after revision surgery. I had assumed I would need some kind

of cervical fusion eventually. But he was right -- correcting the

flatback syndrome (thus stopping the chronic strain on my neck from

hyperextending my neck to see ahead of me as I walked) took care of

the neck pain as well. I do not know if this is at all similar to

your situation but offer it only as a possible note of encouragement -

- discard if it does not apply.

Regarding the doctor with whom you and someone else had such a bad

experience: We would really welcome your feedback on this doctor. We

have some comments on a number of revision surgeons in the Database

section of our website, and you are welcome to add your own. If the

other person who had a bad experience would also be willing to add

her information, that would be a bonus. We continue to try very hard

to elicit such information from all of our members. Our central " data

bank " of revision surgeons is far from complete, and people are

always asking about where to go, or posting inquiries as to whether

anyone else has been to Dr. So-and-So. Every once in a while,

a " little doc " emerges onto center stage as a " biggie " -- and it

would be a shame to let this happen to a truly unethical or damaging

doctor. But again, this is a very personal decision, whether to name

your doctor and report your experience with him/her or not. I tend to

be more in the " tell it like it is " camp -- I want people to know

when a particular doctor is wonderful or, conversely, terrible. In

the first year or two we were doing this board, when I felt very

tentative about so many things (before my own flatback revisions), I

think I was more hesitant and discreet about naming names. I have

become increasingly open about specific doctors through the years. I

just take care that everything I report is true, fair, and honest --

or as much so as I can make it. I have known few if any flatbackers

who wanted to " smear " a particular doctor by reporting the truth. I

think we all want most of all to help others in our situation avoid

the less capable or compassionate surgeons and find the " gems. " I

will always be profoundly grateful to older revisionees, very early

on, who steered me away from particular surgeons who might well have

wrecked my spine!

, thank you so much for asking about donations. They are always

welcome. I just took the information off our home page for a while

when I wanted to make space for other items. This group is an

entirely volunteer effort -- and likewise, financial support for the

group is voluntary and optional, but much appreciated. The donation

we originally suggested, which a number of members did donate, was

$25; but donations of any size are always welcome. You can send these

via Paypal-- www.paypal.com -- to elizabethrgonzalez@....

Once again, I'm delighted to hear from you, , and I certainly

look forward to your future posts!

Best,

>

> Thank You ,

>

> Hi ,

>

> I have not posted in forever, but I continue to appreciate your

> efforts! I think this is a great idea!

>

> I will post more soon. I have had hardware removal for some of you

> that have asked and it was successful and no more hardware was

needed

> for that fusion's stability, of course that did nothing for my

> degeneration above and below my fusion. Neck pain is one of my two

> ills and so reading and posting on the computer is not great for

me,

> but I do love getting all the correspondence.

>

> I know a while back that you asked for donations in helping you

manage

> this site. Not having kept very current lately, I wanted to know

if

> you would still like them and where should I send?

>

> Also, I have had a very bad experience with one doctor (not one of

the

> biggies mentioned here), but don't want to slander his name.

Another

> friend of mine, who has luque rods and a daughter with scoliosis

had a

> ridiculous visit with him also and she will never be back. What is

> your opinion of that? I would never want any list members to go to

> him, but at the same time don't feel right about using his name???

>

> Okay, enough for now....thanks again,

> - Texas

> 1985 Harrington rod and distraction hooks T4-L2

> with Dr. Dickson, Houston

> Rod Removal 2003 and cervical fusion c6/7 (unsuccessful)

> SI joint severe pain and cervical pain - constant

>

[Guest guest]

Dear Group,

For those of you who do not recognize my name, my participation in

this group goes way back, with my dates of participation being,

roughly, Sept. 2002 to July 2005, and my friend goes back even

earlier, as does his service as a Feisty moderator. This is easy to

check by quickly perusing the Feisty archives corresponding to those

times, and my scoliosis " credentials " are on record, with the omission

of my Harrington/flatback revision in 2006 by Dr. Rand in Boston. I

moved here from an older flatback group and have since moved to a

newer one, because I did not like the way people were being treated

here, and because most of the people I wanted to support and be

supported by had also moved on. You can check the archives from that

time, July '05, but you won't see the whole story because most of the

dissenting communication was deleted by the forum owner. I do,

however, have on my computer all the digests from this period and can

present them to anyone wishing documentation. I was also aware that

one or more individuals were banned from the forum, and others were

put on moderation so that their posts could be selectively intercepted

before going out to group members.

Recently there has been some discussion regarding the content of a

site run by Simone ( " Nutty " ), who is also a former participant. I

have not seen that site, but I have seen the discussion here, and was

horrified to see that 's son was allowed to launch an attack

against Simone and , who helps with her site, and was posting for

her since she was no longer registered here. And that was that.

Looked like nobody wanted to challenge what had been said, and we

could all breathe a sigh that the disagreement had " died down " .

Fact is, tried to post a rebuttal to Matt's post, but it was

intercepted. He attempted to post a second message, pointing out that

the reason the discussion had " died down " was because further

discussion had not been permitted. This was also intercepted.

I realize that some people may be just fine with this. I think some

people prefer order to truth. Truth can be messy, inconvenient. I

prefer truth, and I prefer letting people speak their minds as long as

they do not threaten, name-call, or use profane and vulgar language.

I believe that the aforementioned discussion would have played out

naturally by now had 's posts gone through. I was going to post

the texts of 's last two messages, but he and I decided that

rather than posting them to everyone at this late date, we will simply

make them available to anyone who wishes to email us privately, at

sharon.green18@..., or scott_blackledge@...

I do want to say that I appreciate all the benefits I once received

from this group, and that I wish only health and happiness.

And that goes for everyone reading this.

Sharon

>

>

> I'm glad the recent disagreements and controversial discussions have

> died down. I regret that I may have initiated some bad feelings myself

> -- I certainly did not mean to. I also want to thank Simone

> ( " ScoliosisNutty " ) publicly for her thoughtful post and her explanation

> of her websites. And with that, let's close that thread and move on.

>

> I have talked in the past about setting up some formal rules for this

> group. I have drafted a set of such rules (or maybe I should call them

> " pointers, " " tips, " " policies " ) I hope these may be helpful to the

> group as a whole once we formalize them and start sending them to new

> members routinely. I also plan to set up an occasional reminder-email

> reiterating the rules, as I have observed some other group moderators to

> do. This helps to keep all of us aware of what we want this group to be

> and how we want to be treated (and to treat others).

>

> Best,

>

>

>

[Guest guest]

If that is the truth - and others trying to defend themselves

or respectfully giving their " side " or " opinion " and it has

gotten " intercepted " or not posted ---well that really frustrates me

and upsets me! I have written to receive these things. I

would hope that this site would not shut people up that way...

Please prove me wrong! I have followed this whole " drama " from the

beginning and have even given my " two cents worth " . I know it has

gotten emotional at some points - but as long as posts are respectful

and not name calling or hateful or mean, then everyone should be

heard - even if it isn't our own opinion. We have yet to see these

rules and I never saw anything from that would not have been in

the confines of the rules.

Maybe some apologies should be in order if this is the case and

being " the bigger person " to keep the peace and to remember - we

really all have a lot in common with past and present back problems

and emotions shouldn't drive wedges between us all. We all have

enough pain as it is....

Debbie

> >

> >

> > I'm glad the recent disagreements and controversial discussions

have

> > died down. I regret that I may have initiated some bad feelings

myself

> > -- I certainly did not mean to. I also want to thank Simone

> > ( " ScoliosisNutty " ) publicly for her thoughtful post and her

explanation

> > of her websites. And with that, let's close that thread and move

on.

> >

> > I have talked in the past about setting up some formal rules for

this

> > group. I have drafted a set of such rules (or maybe I should call

them

> > " pointers, " " tips, " " policies " ) I hope these may be helpful to

the

> > group as a whole once we formalize them and start sending them to

new

> > members routinely. I also plan to set up an occasional reminder-

email

> > reiterating the rules, as I have observed some other group

moderators to

> > do. This helps to keep all of us aware of what we want this group

to be

> > and how we want to be treated (and to treat others).

> >

> > Best,

> >

> >

> >

>

[Guest guest]

Much correspondence has been exchanged privately on this topic.

Sincere efforts have been made to resolve things. The moderators have

sound reasons for their decisions in this regard. We ask that you

respect our previous announcement that this thread is closed.

> > >

> > >

> > > I'm glad the recent disagreements and controversial discussions

> have

> > > died down. I regret that I may have initiated some bad feelings

> myself

> > > -- I certainly did not mean to. I also want to thank Simone

> > > ( " ScoliosisNutty " ) publicly for her thoughtful post and her

> explanation

> > > of her websites. And with that, let's close that thread and

move

> on.

> > >

> > > I have talked in the past about setting up some formal rules

for

> this

> > > group. I have drafted a set of such rules (or maybe I should

call

> them

> > > " pointers, " " tips, " " policies " ) I hope these may be helpful to

> the

> > > group as a whole once we formalize them and start sending them

to

> new

> > > members routinely. I also plan to set up an occasional reminder-

> email

> > > reiterating the rules, as I have observed some other group

> moderators to

> > > do. This helps to keep all of us aware of what we want this

group

> to be

> > > and how we want to be treated (and to treat others).

> > >

> > > Best,

> > >

> > >

> > >

> >

>

[Guest guest]

Hi ,

Thank you so much for writing me! I totally agree with your comments about the neck compensating problems because of the saggital imbalance, and that correction of that problem could take care of the domino effect. I just have not had any revision doctors look at me and even be willing to discuss any kind of revision surgery. The only one was Dr. Shelokov in Dallas who said, "I could take care of your neck with one osteotomy when I take out your hardware, but I could paralyze you and it's happened". I did not go back to him. Also, when I try to discuss my neck and lower back issues with them and the fact they must be tied to the Harrington positioning, they seem to want to always tell me how lucky I am to only be fused to L2 and that my mid-back is flat, but 3 of them said "The general population has degeneration and aging disk problems", UGH. Once I have this mylegram on Wed., you can be sure I'm going to bring this up more with this doctor I've seen once in Austin.

I also feel like I'm just not seeing the right doctor to help me manage this now AND in the future. I swear I feel like my family and friends probably think I have a conspiracy thing going on with my situation because so far no one has really taken me very seriously other than hardware removal and a unnecessary, unsuccessful neck surgery. It also does not help that my husband is a lawyer, it feels like they look at me differently, but of course that is probably me being paranoid again! I've had to find my own pain management and haven't really found anyone to really help me, they do shots here and there and bill, bill, bill the insurance. The most qualified surgeon I saw was Dr. LaGrone in 2003 and he didn't think I had flatback and suggested hardware removal with someone closer to me. I'm thinking I need to pick two doctors to travel and see like Boachie and Rand, get organized with all my test results, and just go see what they say. It is just so exhausting to have those first visits and not feel like I'm expressing myself correctly and of course getting emotional! I wish I could hire you, , to go with me and help me facilitate the appointments!!!! I do have to say that I feel much stronger as a patient after all my bad experiences, but it is still very frustrating to be in such pain and have to be a strong, decision making advocate for myself!

I will write later, my husband's huge yellow lab was in sleeping in the kitchen last night and he is always outside at night. I turned out lights and walked through the kitchen as I always do and in the dark I just fell flat over him and busted my elbow and shoulder. Just what I needed, a fall! Actually, falling has always been my biggest fear of really messing things up more! I'm okay, just in twice as much pain from the muscle soreness and my neck is more of a mess

[Guest guest]

Another surgeon who does a lot of revision surgeries with a good

success rate is Dr Bridwell in St Louis. I believe St Louis is

pretty easy to get to from most places, too.

>

> Hi ,

>

> I'm thinking I need to pick two doctors to travel and see like

Boachie and Rand, get organized with all my test results, and just go

see what they say. It is just so exhausting to have those first

visits and not feel like I'm expressing myself correctly and of

course getting emotional! I wish I could hire you, , to go

with me and help me facilitate the appointments!!!! I do have to

say that I feel much stronger as a patient after all my bad

experiences, but it is still very frustrating to be in such pain and

have to be a strong, decision making advocate for myself!

[Guest guest]

And another place you could look to for an additional opinion is

either Dr Ondra or Koski at Northwestern Memorial Hospital in

Chicago. An upside of them is that if you send (fax or mail) them a

copy of your film report (not even the films themselves) and include

a short history about yourself, they can usually get you in for an

appointment in a month or less. I got my first appointment in only

a week. They do surgeries typically on Mon, Wed, Fri, while Tues &

Thursdays are set aside for appointments. Thursdays are when they

see " regular " people with regular back problems. Tuesdays are set

aside just for people with more complex issues, such as flatback, so

that they can get them in right away. If you just call and ask for

an appointment without sending in stuff to show the complexity of

your case, then your wait time will likely be 6 months with all of

the rest of the " regular " people.

Anyways, so that's another option if you're interested in it. I

just had my revision in July there with Dr. Koski.

> >

> > Hi ,

> >

> > I'm thinking I need to pick two doctors to travel and see like

> Boachie and Rand, get organized with all my test results, and just

go

> see what they say. It is just so exhausting to have those first

> visits and not feel like I'm expressing myself correctly and of

> course getting emotional! I wish I could hire you, , to

go

> with me and help me facilitate the appointments!!!! I do have to

> say that I feel much stronger as a patient after all my bad

> experiences, but it is still very frustrating to be in such pain

and

> have to be a strong, decision making advocate for myself!

>

[Guest guest]

Hi, --

Wow, I sure hope your shoulder and elbow (and neck) are o.k. since

you fell over the lab in the dark. I know how upsetting and

frightening a fall can be in our condition, as I had several nasty

ones myself. I somehow deteriorated after my initial flatback

revisions, to the point where I was just starting to be " bow " forward

again (although Dr. Ondra told me this was impossible -- it must have

been that Dr. Rand, while doing his best in the initial revision, had

left me with the 11 cm deformity measured two years later. Yet

everyone who saw me throughout those two years, and I mean everyone,

exclaimed how perfectly straight I was after Rand.

Anyway, four more surgeries with Ondra fixed me about as optimally as

I am ever going to be fixed, and I am not tending to lurch forward

anymore. But there was a scary period in between the two revision

marathons -- the first in Boston, the second series here in Chicago --

when I felt chronically at risk walking down any kind of uneven

pavement. (My neighborhood seems to have an awful lot of this kind of

pavement -- I should call my alderman.) Twice I lost my footing on

the sidewalk and took a nose dive. With a fusion from T-3 to S-1, I

could not break my fall, and I hit with my face both times. The first

time I gave myself a shiner when my eye hit the sidewalk.

I am wondering: Do YOU think you have flatback? If so, could it have

developed further or become evident for the first time only since you

saw Dr. LaGrone four years ago? Or do you think you could have some

other problem(s) entirely? I agree completely that you need to see

someone you are sure is qualified to deal with a spinal situation

like yours. It sounds like a good idea to get a few more expert

opinions. Drs. Rand and Boachie are obviously tops, and so is Dr.

Ondra here at Northwestern University Medical Center. You

might also consider others available in the Midwest, perhaps the

group at Washington University, St. Louis.

Yes, I wish I could accompany you as your advocate. I always

encourage people to bring a family member or someone they know and

trust outside their family to any big doctor's appointment. This has

helped me so many times, whether my companion was a friend, husband,

son, brother or any combination thereof -- and I think it has helped

reciprocally when I was able to fill that role for someone else, as

when my mother was getting only the most cursory attention from an

arrogant rheumatologist and his dutiful entourage, and I spoke up and

insisted the doctor stick around till he had answered all of our

questions. It lets the doc know he will be accountable to more than

just one person, a lone patient; in addition, sometimes the

person " along for the ride " will think of an important question to

ask which might otherwise not have come up.

Oh boy, so you are now simply part of the general population and its

disk degeneration? ( am always astonised at any spine surgeon who can

see a patient with significant problems following a history of major

spinal surgery for scoliosis and blame everything on aging disks.

Yes, there is bound to be some disk deterioration as we get older,

especially if we have undergone fusion(s), but when is this ever the

whole story? The guy who put in my Harrington rod in 1986 -- but did

not inform me that I had flatback syndrome until I was almost totally

disabled, circa 1998 -- claimed that my flatback syndrome

was " because of your disk disease. " Fortunately every other spine

specialist I consulted told me the truth.

I am so sorry your quest for definitive answers has been so

contradictory and frustrating. I will be eager to hear what you come

up with in terms of a Plan B for obtaining definitive diagnosis and

appropriate treatment. As for the L-2 advantage, I am a little

skeptical. I get the sense that it still is somewhat common to regard

people with shorter fusions -- those terminating above the low lumbar

area -- as less vulnerable to flatback syndrome, but I wonder . . . I

developed very severe flatback with a fusion ending around L-2 or L-3.

In any case, you clearly need and deserve more precise and

encouraging answers than you have been getting. I think you are

absolutely correct to avoid surgery until and unless someone can give

you solid scientific reasons for the surgical approach he proposes.

Best,

- In , " Malesovas "

<lmalesovas@...> wrote:

>

> Hi ,

>

> Thank you so much for writing me! I totally agree with your

comments about the neck compensating problems because of the saggital

imbalance, and that correction of that problem could take care of the

domino effect. I just have not had any revision doctors look at me

and even be willing to discuss any kind of revision surgery. The

only one was Dr. Shelokov in Dallas who said, " I could take care of

your neck with one osteotomy when I take out your hardware, but I

could paralyze you and it's happened " . I did not go back to him.

Also, when I try to discuss my neck and lower back issues with them

and the fact they must be tied to the Harrington positioning, they

seem to want to always tell me how lucky I am to only be fused to L2

and that my mid-back is flat, but 3 of them said " The general

population has degeneration and aging disk problems " , UGH. Once I

have this mylegram on Wed., you can be sure I'm going to bring this

up more with this doctor I've seen once in Austin.

>

> I also feel like I'm just not seeing the right doctor to help me

manage this now AND in the future. I swear I feel like my family and

friends probably think I have a conspiracy thing going on with my

situation because so far no one has really taken me very seriously

other than hardware removal and a unnecessary, unsuccessful neck

surgery. It also does not help that my husband is a lawyer, it feels

like they look at me differently, but of course that is probably me

being paranoid again! I've had to find my own pain management and

haven't really found anyone to really help me, they do shots here and

there and bill, bill, bill the insurance. The most qualified surgeon

I saw was Dr. LaGrone in 2003 and he didn't think I had flatback and

suggested hardware removal with someone closer to me. I'm thinking I

need to pick two doctors to travel and see like Boachie and Rand, get

organized with all my test results, and just go see what they say.

It is just so exhausting to have those first visits and not feel like

I'm expressing myself correctly and of course getting emotional! I

wish I could hire you, , to go with me and help me

facilitate the appointments!!!! I do have to say that I feel much

stronger as a patient after all my bad experiences, but it is still

very frustrating to be in such pain and have to be a strong, decision

making advocate for myself!

>

> I will write later, my husband's huge yellow lab was in sleeping in

the kitchen last night and he is always outside at night. I turned

out lights and walked through the kitchen as I always do and in the

dark I just fell flat over him and busted my elbow and shoulder.

Just what I needed, a fall! Actually, falling has always been my

biggest fear of really messing things up more! I'm okay, just in

twice as much pain from the muscle soreness and my neck is more of a

mess.

>

> Also, I would be happy to talk to Andy about the hardware removal

thing, no surprise I have some opinions about that!

> Take care,

> in Texas

>

[Guest guest]

Thanks! That's the name I always forget (even though he does

collaborative research with my own most recent revision surgeon, Dr.

Ondra). Dr. Bridwell is regarded as an excellent, distinguished

revisin surgeon who has helped many people. His affiliations are

Washington University/ Jewish Hospital in St. Louis.

> >

> > Hi ,

> >

> > I'm thinking I need to pick two doctors to travel and see like

> Boachie and Rand, get organized with all my test results, and just

go

> see what they say. It is just so exhausting to have those first

> visits and not feel like I'm expressing myself correctly and of

> course getting emotional! I wish I could hire you, , to

go

> with me and help me facilitate the appointments!!!! I do have to

> say that I feel much stronger as a patient after all my bad

> experiences, but it is still very frustrating to be in such pain

and

> have to be a strong, decision making advocate for myself!

>

[Guest guest]

Thanks, , for the helpful current info. on scheduling in that

practice. I would likewise give that group the highest recommendation

(although I have not yet had the pleasure of working with Dr. Koski,

as far as I know). Dr. Ondra is so outstanding in every way -- like

so many other patients, I just can not say enough good things about

him as a physician, surgeon, or human being. He would be my #1 choice

for any kind of complex spinal revision surgery. Also, Northwestern

is a first-rate medical center. Lord knows I've been in and out of

that place enough, but they've always treated me well there.

I guess I should add, however, that the food is way better at New

England Baptist, where Dr. Rand peformed my earlier revisions. At

least back in 2001, they had a fantastic chef who sent up vegetarian

entrees prepared to perfection.

Northwestern does have some good if overpriced little restaurant-

cafeteria places on the premises (their Au Bon Pain is quite

popular), plus a bunch of restaurants in the neighborhood. I was

always sending any available family member downstairs for takeout!

Best,

> > >

> > > Hi ,

> > >

> > > I'm thinking I need to pick two doctors to travel and see

like

> > Boachie and Rand, get organized with all my test results, and

just

> go

> > see what they say. It is just so exhausting to have those first

> > visits and not feel like I'm expressing myself correctly and of

> > course getting emotional! I wish I could hire you, , to

> go

> > with me and help me facilitate the appointments!!!! I do have

to

> > say that I feel much stronger as a patient after all my bad

> > experiences, but it is still very frustrating to be in such pain

> and

> > have to be a strong, decision making advocate for myself!

> >

>