Post from

[Guest guest]

is new and from Canada. She is still trying to figure out how to post, but she had this to say for Charlene:

hi patty ........still can't seem to get signed in to post things ..... i had my explantdone by a dr. in vancouver, he did a complete capsulectomy,,,,,,,, would this help> or is it too far from toronto ....one thing itis completely covered by medical, didn't have to pay a cent, and he hasdone lots of explants ......love, rachel

[Guest guest]

She wrote me and I forwarded it to Charlene also, looks like we have

lots of help for her in Canada....I am so happy to help people, I

will never stop fighting for this cause, it is so important.

I love this site, thanks Patty for all the work you do!

Hugs

In @y..., " Patty " <fdp@l...> wrote:

> is new and from Canada. She is still trying to figure out

how to post, but she had this to say for Charlene:

>

> hi patty ........

>

> still can't seem to get signed in to post things ..... i had my

explant

> done by a dr. in vancouver, he did a complete capsulectomy

> ,,,,,,,, would this help> or is it too far from toronto ....one

thing it

> is completely covered by medical, didn't have to pay a cent, and he

has

> done lots of explants ......

>

> love, rachel

[Guest guest]

Hi ,

I, so love, your attitude, it helps me remember how I was in '96, until this

past year. I need to get back some of 'that attitude' from you, and help

you spread it around!

Blessings,

Martha M.

NSIF

[Guest guest]

Loriann --

Thanks so much for coming to the rescue!

It's good to hear from you again.

Hope you will update us one of these days ...

Best,

>

> Hi all,

>

> Below is the text of what looked to be a short post from Leger that I

found in my inbox. Is this the one that went missing? - loriann

>

> FROM: legerpj@...

> DATE: Sat, 26 Dec 2009 13:00:03 -0400

> SUBJECT: RE: severe flatback

>

> Probably knows my ex wife. She couldn't handle my being

> disabled either. She left one day without even telling me

> why. So you'd be surprised how many relationships break

> apart when someone gets sick or disabled in his or her

> family.

>

>

>

[Guest guest]

Well, that sounds like the best you can do, and probably the healthiest

course of action -- unless your wife should magically reappear and be

open to discussing what went wrong.

After reading several of your posts, I am struck by your report of her

just kind of vanishing -- no apparent words between you, no apparent

communication. This certainly shoots the stereotype that it's women who

usually want to talk about things interminably!

Am I right that you are mostly or often in a wheel chair? You said in

your other post that you must manage all by yourself. This sounds

extremely difficult for anyone in a chair. I imagine you are an

exceptionally independent and resourceful person after being on your own

like this for so long. During my most disabled times, it seemed I was

generally able to scare up some kind of " outside help " when I most

needed it -- but not always, so I have some sense of how challenging

this kind of life must be for you.

I think the isolation gets to many of us. This is the worst in the

winter, when travel is most difficult and the days are darker and people

are huddling inside. (Am I right in thinking you are quite a bit farther

north than I am here on the western shore of Lake Michigan in Chicago? I

have been trying to locate you on a map that would show your latitude,

but I unfortunately can not remember exactly where you live -

Newfoundland Island or Newfoundland and Labrador Province or somewhere

else entirely?.

I think one of the greatest blessings of my life, after I got derailed

by flatback syndrome, turned out to be the Internet. No matter what, I

can stay in touch with friends via my online connection. I imagine your

own long involvement with the Web has eased at least some of the

loneliness for you as it has for me.

, are you currently moderating an online group? If so, I imagine

some of our members would like the url do they could visit your group or

groups. (I know I would) . I've always enjoyed participating in your

groups but have kind of lost touch in recent years.

I wish someone could do something for your spinal condition. On the

other hand, the only viable treatment always turns out to be surgery,

and it sounds as if that has been ruled out in your case. I believe you

and I have discussed this previously, so forgive me if I'm bringing up

stale old subject matter. But at the risk of repeating myself, are you

sure that skilled revision surgery will never be an option for you? Here

in Chicago, Dr. Ondra -- before he left for Washington at the request of

President Obama -- was operating on a number of elderly and also

so-called high-risk patients. In fact, he was in the process of starting

a whole multidisciplinary program at Northwestern University Medical

Center for monitoring the highest-risk patients and seeing them safely

through major spinal surgery. Admittedly he is an unusually gifted

surgeon with a terrific can-do attitude.

I do hope we'll be hearing from you more often. I always perk up when I

see your name on a post.

Best,

> >

> > Hi all,

> >

> > Below is the text of what looked to be a short post from Leger

that I found in my inbox. Is this the one that went missing? - loriann

> >

> > FROM: legerpj@

> > DATE: Sat, 26 Dec 2009 13:00:03 -0400

> > SUBJECT: RE: severe flatback

> >

> > Probably knows my ex wife. She couldn't handle my being

> > disabled either. She left one day without even telling me

> > why. So you'd be surprised how many relationships break

> > apart when someone gets sick or disabled in his or her

> > family.

> >

> >

> >

>

[Guest guest]

So many questions so little time hehe... Just kidding.

You posted the address of my scoliosis group. Originally there was a scoliosis

group started at one of the Universities in the US during the early part of the

nineties. It was an email group. That group was transferred to the

group. So basically its been continuously running since about

1992. The reason it's a " medical " group is that we, the moderators in the early

group, found it impossible to keep chiropractors, snake oil salesmen, and other

types from preying on those unfortunate enough to be having serious problems.

They promised cures that were impossible to prove at really outrageous prices.

The problem was that every time these guys got a hold of a group trouble

followed in quick order. You had to have witnessed the damage these guys caused

to the original groups to understand what I am talking about and I could

probably write a book on the subject. So the decision was made very early on to

ban all discussion of alternative treatments of any kind. The only exceptions

were exercise and physiotherapy. Since then the group has been very quiet and

sociable.

As I said before the wife left me without any warning or discussion. She let

some family members know but basically kept everything from me. So I never knew.

(She told my sister, who told my parents... they didn't told me.) No fighting,

no arguments, no sitting down to discuss things, no reconciliation... just

goodbye I am leaving you later today. No discussion afterward either except to

tell me that she wanted everything I had. I didn't even know she was unhappy. In

retrospect yes I saw some things that I should have clued in on but I didn't

connect the dots. At the time I was in severe pain and trying to deal with that

so I unfortunately didn't notice what she was up to. I blame myself for that.

As for the wheelchair I do use one. I am not in it that often though anymore. I

was in it more earlier on but I found a combination of rest and medication that

keeps me out of it most of the time. I have to use it if I am on my feet for

more than 20 minutes. Otherwise I walk with a cane.

I live in New Brunswick which is about as far north as say Montreal. However it

is a very wet environment. It's always raining or snowing or a combination of

both. The cold and damp really makes me worse.

I think I have to be fairly resourceful as I don't really have that many people

that I can call on. I found that it's difficult to find even in a small rural

area. (People think that small communities help each other but around no one

seems to have got the memo.)

Now as to my spinal condition. I had the original surgery when I was 12. I was

operated on again at 18 because of damaged caused by a car accident in England.

At 30 I had another revision surgery. I still have a metal rod in my back. The

rod is embedded in the bone and can't be removed without considerable work. The

surgeons in this part of the country aren't the greatest. However they say it's

too risky to try and get the rod out because of the way it's embedded. I was

told that in Toronto as well. No one will actually touch me around here. I am

not that interested in them trying either. I realize that I could go elsewhere

but I haven't got the money to do it. I doubt very much that anyone in Canada is

going to attempt the rod removal and then surgery on top of that to revise the

fusion. It's just too risky. So even if there was a surgeon in the US that would

do it I couldn't afford it. And the system in this province wouldn't pay for it.

I live in the poorest province in Canada and they are not overly generous when

it comes to medical treatment.

One of the other problems is that they refuse to administer a CAT scan or MRI

because the metal in my back is old and magnetic. They say that they wouldn't

get a picture of what they wanted because of the magnetic field even if they

felt safe enough to put me in a machine, which they don't. So they rely solely

on X-rays which doesn't really tell them what is wrong in there.

Honestly... I don't want surgery again. I had an awful time recovery from the

last two. Every time they operated on me it just got worse. I can still walk. I

can still do things. If and when it gets to the point where I simply can't walk

anymore then I will look at it again. Until they they have written me off and

basically told me to live with the pain. Mind you if someone said they could fix

it and everything would be better I might reconsider it fast enough.

> > >

> > > Hi all,

> > >

> > > Below is the text of what looked to be a short post from Leger

> that I found in my inbox. Is this the one that went missing? - loriann

> > >

> > > FROM: legerpj@

> > > DATE: Sat, 26 Dec 2009 13:00:03 -0400

> > > SUBJECT: RE: severe flatback

> > >

> > > Probably knows my ex wife. She couldn't handle my being

> > > disabled either. She left one day without even telling me

> > > why. So you'd be surprised how many relationships break

> > > apart when someone gets sick or disabled in his or her

> > > family.

> > >

> > >

> > >

> >

>

[Guest guest]

Thanks for filling us in on your history, .

I remember those older groups. I think the first one I ever joined was the MIT

group. You might not remember, but you and I went through several subsequent

dramas and reorganizational things with one or two of those groups. Fortunately

I came in a little too late to witness any of the snake-oil-salesmen's takeovers

-- what a ghastly thing to have happen to a group! I was in on some of the

earlier schisms between group members, though. But enough nostalgia . . .

Excuse this question if it is too nosey, but do you know why your parents didn't

tell you your wife was cutting out? Were they trying to protect you in some way?

I can certainly empathize with your opposition to more surgery. And like you, I

don't think I would want to get it in your neck of the woods. We are forever

trying to come up with the names of experienced and qualified revision surgeons

anywhere in Canada. I don't know if there really are so few, or if we just

haven't found them.

I had my first revision in Boston with Dr. Rand. He did not want to remove my

rod because of all the bony overgrowth -- something like your situation, maybe?

He did the P/A/P, two -part revision without removing the rod, just " hanging the

new hardware off the old. " WenI needed additional revision a few years later, my

Chicago neurosurgeon, Ondra, was keen to remove any old or dysfunctional

hardware, and he took the rod right out. So I guess much depends on the

individual surgeon.

As you may have noticed, we get bogged down at this group periodically with The

Great MRI Debate. The new machines can handle the implants, and it is really no

problem at all. I have had inumerable MRIs -- in fact, Dr. Ondra insists on a

pre-op MRI. He uses it to map out exactly what he willdo in the OR, appling a

trigonometric formula he devised. I have also had my share of CT scans -- was

not aware that these posed any particular problem for people like us.

But if you have made peace, more or less, with your condition, and it is not

worsening appreciably, I can certainly understand why you would want to avoid

surgery. I believe some of your previous surgery was pretty badly botched, but

even for those of us who did not get overtly messed with or messed up by past

fusions or revisions, additional surgery can certainly make things worse. People

can end up with adhesions or pseudarthrosis or any number of complications and

side effects and can ultimately regret that last operation they had hoped would

make things better. Best to hold off until or unless you feel sure a particular

procedure is going to help you substantially. Better to be cautious and

skeptical than to jump into any reconstructive spinal procedure! -- especially

after what you have already endured.

Best,

> > > >

> > > > Hi all,

> > > >

> > > > Below is the text of what looked to be a short post from Leger

> > that I found in my inbox. Is this the one that went missing? - loriann

> > > >

> > > > FROM: legerpj@

> > > > DATE: Sat, 26 Dec 2009 13:00:03 -0400

> > > > SUBJECT: RE: severe flatback

> > > >

> > > > Probably knows my ex wife. She couldn't handle my being

> > > > disabled either. She left one day without even telling me

> > > > why. So you'd be surprised how many relationships break

> > > > apart when someone gets sick or disabled in his or her

> > > > family.

> > > >

> > > >

> > > >

> > >

> >

>