Re: Can anyone help this poor person??

[Guest guest]

Andy, I'm so glad to hear that you're doing so well. I trust you're

taking it easy in NY if you have not yet flown home.

Did you get an email from this mother? It's the kind of letter we

all dread, since she really has to find a decent spinal specialist

(who is covered by her insurance and close to home, unless she has

lots of bucks). Is the 25-year-old daughter so psychiatrically

impaired as to be incapable, herself, of seeking her own care? Is

the mother more interested in getting help for her daughter or in

blaming, possibly suing?

I never heard of " PEN " (except as an authors' organization -- not a

spinal implant) and am wondering if the problem is actually flatback

syndrome. I would think that if this young woman has a hardware-

induced deformity, any one of the revision surgeons we normally

recommend could make a useful diagnosis and perhaps recommend

further surgery. It sounds as if this mom has had the bad luck to

get her daughter examined by know-nothing or dubious docs. As for

ministers or the government, well, uh . . . .

I would think you could steer this woman right in a nice way,

relying on your professional expertise (as well as your knowlege of

spinal problems). I am kind of at a loss, knowing so little about

what is actually going on here. Did you query the other

scoliosis/flatback sites as well?

Best,

>

> Posted by: " laura_rosda "

> <mailto:laura_rosda@...?Subject=%20Re%3AFurther%20surgery%3F>

> laura_rosda@... <laura_rosda>

laura_rosda

>

>

> Tue Dec 25, 2007 6:01 am (PST)

>

> I have a daughter, Sellywan Caroline, and she is 25 years old. In

1999, she

> had a surgical operation because of scoliosis. Three months later,

her

> backbone was more bent than before. In 2007, her doctor said that

one of the

> PEN (rods to maintain the bone) is loose and it is causing the

backbone to

> get worse. Now she only can lie in her bed (because it is

compatible with

> her backbone), she eats too little, and she suffers from a

psychiatric

> syndrome.

>

>

>

> I have been complaining to the doctor, minister and government to

ask who is

> responsible. No one (doctors) wants to handle my problem (do some

surgery

> again); they say that's the optimal result and no one is brave

enough to say

> that the doctor made a mistake.

>

>

>

> From the beginning, the doctors said that Scoliosis comes from a

virus, but

> one of the minister's staff said that scoliosis is hereditary. Is

it true?

> And do you know where there is a doctor who could do surgery

again? Thank

> you for reading my problem and your help determining my daughter's

future.

>

[Guest guest]

Hi

,

Thanks for responding to Marty’s

email after my procedure – that was so sweet of you.

I think he may have gone a little

overboard with his enthusiasm – I wasn’t dancing in the corridors! –

but I’m guessing his happy remarks reflected his relief. The revision in ‘03

was so much of a bigger deal – scary for both of us – that this

smaller procedure and quick recovery really seemed like ‘nothing’

in comparison.

I stayed an extra two days after being

discharged on Saturday (the procedure was Wednesday) and we came home on Monday,

Christmas Eve. We both slept all of Christmas day!

Thanks, too, for your ideas about the post

I forwarded to Feisty from the mother of a young woman suffering from post-op instrumentation

failure. It was hard to know how to respond to her – or even if she’s

living in the US or elsewhere. I’ve written her with questions – and forwarded

all the great Feisty replies posted for her – but I have not heard from

her since. I wonder what happened.

Anyway, I hope you and your son are doing

well and I wish you a wonderful – as-little-pain-as-possible – New Year!

Yours,

Andy

Re: Can

anyone help this poor person??

Andy, I'm so glad to hear

that you're doing so well. I trust you're

taking it easy in NY if you have not yet flown home.

Did you get an email from this mother? It's the kind of letter we

all dread, since she really has to find a decent spinal specialist

(who is covered by her insurance and close to home, unless she has

lots of bucks). Is the 25-year-old daughter so psychiatrically

impaired as to be incapable, herself, of seeking her own care? Is

the mother more interested in getting help for her daughter or in

blaming, possibly suing?

I never heard of " PEN " (except as an authors' organization -- not a

spinal implant) and am wondering if the problem is actually flatback

syndrome. I would think that if this young woman has a hardware-

induced deformity, any one of the revision surgeons we normally

recommend could make a useful diagnosis and perhaps recommend

further surgery. It sounds as if this mom has had the bad luck to

get her daughter examined by know-nothing or dubious docs. As for

ministers or the government, well, uh . . . .

I would think you could steer this woman right in a nice way,

relying on your professional expertise (as well as your knowlege of

spinal problems). I am kind of at a loss, knowing so little about

what is actually going on here. Did you query the other

scoliosis/flatback sites as well?

Best,

>

> Posted by: " laura_rosda "

> <mailto:laura_rosda@...?Subject=%20Re%3AFurther%20surgery%3F>

> laura_rosda@... <laura_rosda>

laura_rosda

>

>

> Tue Dec 25, 2007 6:01 am (PST)

>

> I have a daughter, Sellywan Caroline, and she is 25 years old. In

1999, she

> had a surgical operation because of scoliosis. Three months later,

her

> backbone was more bent than before. In 2007, her doctor said that

one of the

> PEN (rods to maintain the bone) is loose and it is causing the

backbone to

> get worse. Now she only can lie in her bed (because it is

compatible with

> her backbone), she eats too little, and she suffers from a

psychiatric

> syndrome.

>

>

>

> I have been complaining to the doctor, minister and government to

ask who is

> responsible. No one (doctors) wants to handle my problem (do some

surgery

> again); they say that's the optimal result and no one is brave

enough to say

> that the doctor made a mistake.

>

>

>

> From the beginning, the doctors said that Scoliosis comes from a

virus, but

> one of the minister's staff said that scoliosis is hereditary. Is

it true?

> And do you know where there is a doctor who could do surgery

again? Thank

> you for reading my problem and your help determining my daughter's

future.

>

[Guest guest]

I really enjoyed this post, Andy. It was great to have more details

about your recovery -- also to learn that you are safe and sound at

home. Will you be going to NYC for follow-up? I remember I could not

find anyone in Chicago to follow me after my Boston revision . . .

(WARNING The next paragraph, which may be skimmed or skipped, is a

total digression. In comparing the latest revision procedure to your

previous surgery, you got me strollintg/bumbling down my own memory

lane . . . )

.. . . don't ask me why. Ideally the docs in your vicinity are a bit

more enlightened. I tried to get post-op follow-up by calling the

office of the spine surgeon (in my HMO) who had initially told me my

problem was beyond his own surgical expertise. All I got back was

the message (delivered in huffy tones by his receptionist) that

since I had failed to have my surgery here in Chicago, I could not

expect him to follow up with me. No one, including my HMO, seemed to

understand why anyone would have had to go to Boston for flatback

revision surgery. At the time I knew of no one in Chicago who could

do it, and neither did they -- they kept referring me to doctors who

could not do it, ranging from a cervical spine specialist they must

have found in the phone book to the surgeon who initialy installed

my Harrington rod and who was just beginning to try his hand at

flatback revision surgery. I had to switch to their PPO for a few

months to get my treatment reimbursed at all, after exhausting the

HMO appeals procedure and receiving a preposterous rejection letter

from their so-called " Independent Medical Examiners. " Ultimately

this insurance carrier got billed for my six (6) complex revision

and instrumentation-replacement procedures, the sixth of which

involved a spontaneous fracture and carried a 50/50 chance of

paralysis. And then they got billed for several years of extensive

pain-specialty workups and regimens culminating in multiple

surgeries to install, replace, and tune up the little pump implanted

in my intrathecal space which keeps me halfway mobile by infusing

Dilaudid into my spinal canal 'round the clock. And then, to top it

all, about one month ago they sent me one of those glossy, health-

promoting mailings -- geared to the patient's particular demographic

and specific medical condition -- notifying me that I had been

selected to participate in their newest educational program. They

promised to teach me all about simple exercises and changes in my

daily living practices which would greatly reduce my " low back pain. "

Well, enough nostalgia. I'm glad your hubby received my thank-you

email. As for " going overboard, " I am somewhat afraid the mom who

wrote to you has not responded because of how I went overboard in my

post responding to her post. I still have to remind myself almost

daily of my dad's advice -- long predating the advent of email --

not to write anything in a letter I would not want the world to

read. Anyway, I hope she is reflecting on your questions to her and

is perhaps finding herself headed in a better direction.

Take care of yourself, Andy, and keep feeling better . . . .

> >

> > Posted by: " laura_rosda "

> > <mailto:laura_rosda@?Subject=%20Re%3AFurther%20surgery%3F>

> > laura_rosda@ <http://profiles.

<laura_rosda>

> /laura_rosda>

> laura_rosda

> >

> >

> > Tue Dec 25, 2007 6:01 am (PST)

> >

> > I have a daughter, Sellywan Caroline, and she is 25 years old.

In

> 1999, she

> > had a surgical operation because of scoliosis. Three months

later,

> her

> > backbone was more bent than before. In 2007, her doctor said

that

> one of the

> > PEN (rods to maintain the bone) is loose and it is causing the

> backbone to

> > get worse. Now she only can lie in her bed (because it is

> compatible with

> > her backbone), she eats too little, and she suffers from a

> psychiatric

> > syndrome.

> >

> >

> >

> > I have been complaining to the doctor, minister and government

to

> ask who is

> > responsible. No one (doctors) wants to handle my problem (do

some

> surgery

> > again); they say that's the optimal result and no one is brave

> enough to say

> > that the doctor made a mistake.

> >

> >

> >

> > From the beginning, the doctors said that Scoliosis comes from a

> virus, but

> > one of the minister's staff said that scoliosis is hereditary.

Is

> it true?

> > And do you know where there is a doctor who could do surgery

> again? Thank

> > you for reading my problem and your help determining my

daughter's

> future.

> >

>