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Dear ,

I'm so sorry to hear about your current situation! I wish I had some

helpful advice to offer. Your posts have helped me enormously, and

it's distressing to know you're suffering and not have any advice or

insight that might help you in return. I'm not a particularly

religious person, but do believe in the power of prayer, and you are

in mine. I won't presume to speak for the group, but your writings

have helped lessen my own feelings of isolation and fear upon

embarking on this whole experience with complications from

harrington rod fusions, but I think it's safe and pretty obvious to

say I'm not alone in my feelings.

I wish there was SOMETHING I could do. If there is anything, please

know that I'm here for you. With much love and thoughts of

strength, Dianne S. Rhode Island Diannnes@...

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Dear ,

This will have to be short due to the fact that one hand is in a cast. I

just had to stop by after I read your posts. I can offer mostly platitudes,

sadly. But, as far as goes the pain, could it be that your body is still

searching for its new " center " due to its new configuration? I also hope that

you

will quickly receive answers to all of your questions. Also, why wait for your

next appointment? Run, don't walk, back to your surgeon!

I wish far better things for you who have done so much for us!

Sincerely,

Carole (the elder)

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,

So sorry to hear of your ordeal & current situation.

No suggestions but wanted to know I'm thinking of you.

Joyce (Atlanta)

(Noticed a new member also named Joyce appearing recently)

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MY prayers are with you. You will be better, Ondra will help you.

-- In , " Rasche

" <poetryperson@s...> wrote:

> OK, I'll stop being mysterious and try to describe my

> current " complaint. "

>

> As many members know, I had 28 hours of revision surgery in two

> stages in Feb. and March. They got out all my old hardware

including

> some pelvic bolts from a previous revision which had been causing

me

> enormous pain. The re-correction included pedicle subtraction

> osteotomy. Subsequently they had to go back in and remove a

hematoma.

>

> I have been in worsening pain since my release from the hospital at

> the end of March. I can no longer wear my TLSO because my spine

does

> not seem to be shaped the way it was when this was first fitted

> and " built. " I can no longer leave my apartment because of pain

which

> gets worse the longer I am on my feet. I seem to bend more and more

> toward my left (coronal plane) after getting up to walk and walking

> around. The main focus of my posterior pain seems to be on my left

> side over my rib cage, possibly slightly more thoracic than lumbar.

> Sometimes it " circles around " to the front, so that I have a band

of

> pain, roughly 2-3 inches wide, encircling about half my torso. In

> front, it feels like horrible indigestion. In back, it feels like a

> knife sticking in my ribs.

>

> When someone touches my back, the painful area is tender and more

> painful to palpation. I seem to have several little marks in the

> area, possibly from staples I had removed on April 14.

>

> Also on April 14, I had my most recent x-rays and was told that

> everything looked fine. I finally took a good look at these x-rays

> myself (tonight), with a family member. We were shocked to see that

> they show pronounced scoliosis, probably comparable to what I had

as

> a teen-ager. My back looks pretty scoliotic to the " naked eye "

> anyway -- puzzling indeed to everyone close to me who has followed

> this whole sorry saga -- but I guess there was just something

> definitive and upsetting about seeing this " confirmed " so starkly on

a

> black and white film. I am not sure the pain and the curvature are

> related but suspect they must be somewhat related, since I curve

more

> the longer I am in an upright position and since my pain increases

> along with the curvature.

>

> I realize I have made the whole thing sound functional (rather than

> structural). I suspect that it has elements of both and that it

must

> be at least partially structural.

>

> I also do not know if this represents some deterioration since my

> surgery. On the one hand, I feel and look worse (subjectively). On

> the other hand, it is kind of shocking and mystifying that the

doctor

> said nothing about this marked scoliosis on my most recent x-ray. I

> do not currently have access to earlier post-op x-rays.

>

> Since the hardware looks o.k. on the x-ray, I have to assume that

> nothing is broken or markedly displaced.

>

> I am wondering what a CT scan might show that would be helpful. (I

am

> getting rechecked next week and am supposed to get both a CT and

more

> spinal films.)

>

> I am wondering what can be done about any of this, if anything.

>

> My son had to tell me this evening that we talked on the phone

around

> 1 p.m. today. I had, and have, no memory of the conversation. He

said

> I sounded pretty groggy. Clearly I am taking maximum pain meds --

> enough to make me severely dizzy at times as well, yet not enough

to

> do more than take the edge off my relentless left-sided pain. I

have

> to get my body into one particular and very precise position to get

> any relief. At times no position works. I was up all last night

> (then asleep at 1 when my son called).

>

> I almost went to the ER tonight. But I am not bleeding or comatose

> or anything overtly " acute, " so I talked myself out of it.

>

> I am living in my recliner, trying to distract myself with TV and

> reading. I miss my walking terribly. I worry about getting blood

> clots in my legs or otherwise going down the tubes from this

> sedentary life.

>

> I can't believe how crooked I am, especially on the x-ray.

>

> May I be truly frank and open with you, my dear friends and fellow

> sufferers, at the risk of eliciting some head-shaking and eye-

rolling

> and the like? -- At times, these days, I feel I am " walking " (so

to

> speak) that fine line between profound despair and off-the-wall

> hysteria!

>

> Thanks for letting me unload, and please write back with any

helpful

> remarks you may have.

>

>

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Dear ,

First off I am so sorry that you're are having these problems. I

would think that being on max pain meds makes it even more difficult

to try to figure things out. Is it possible the side to side curve

hasn't really changed, but you just didn't notice it as much because

of your front to back imbalance?

This happened in my own limited experience -- my hip replacement and

correction of the severe hip flexion contracture straightened my

sagittal balance up four to eight centimeters, ever since then I and

others have really noticed my side to side curve more, although I

don't think it's actually worsened.

Since the pain meds are affecting your memory, if you have not

already done so, you might start now to make a written list of

questions that you can ask the doc at your appt. next week. Can we

assume a family member will be going with you and taking notes of

what the doc says? I'd include that you want him to put your pre-op

x-rays up on the lightboard next to your post-op ones. There's

nothing like seeing it for yourself to make you trust and have

confidence in the info. he's giving you.

I myself can't remember what my x-rays look like unless I'm staring

at them.

Not that it's any consolation, but I know we've heard from others who

have had revisions that pain for a number of months can be considered

normal. However, if your pain is not bearable to you, I wonder if a

call to your OS might be warranted now to see if there's some

tweaking he can do to what you are taking or if he might suggest some

other course of action. Also, if you are supposed to be wearing your

TLSO and you can't, I think you should mention that to him by phone

now also. And that you haven't been able to walk much and should you

be worried about blood clots in your legs.

Standard disclaimer here: I haven't had revision surgery yet, and I

don't know all that your doc has told you thus far about how he

thinks the surgery went, so I hope you'll take my above words with

the appropriate grain of salt.

Please know we are all fervently wishing that things get better for

you soon.

loriann

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Hi ,

I agree with the others about phoning your doctor asap. The only other thing

that I might mention, having gone through my mother's surgery, is that the

effects are more pronounced from surgery as we get older. Her memory is

failing her, from a stroke in hospital that I wasn't told about, so now she

uses the " day of the week " container to help her remember if she took her

medication when she should. She had a habit of either forgetting entirely or

taking twice. She still lives on her own at 86 so it was a worry but she has

a medical alert alarm system, which helps.

Since you mentioned a memory lapsed with your son's conversation, I thought

I'd mentioned the container in case you accidently over medicated yourself,

in the course of your pain. My thought about your pain, from back to front,

could be muscular both from the surgery and the readjustment to your new

balance.

Good luck and call your doctor immediately. He just might deem it necessary

to see you sooner.

Llweyn

Here goes (gulp)

OK, I'll stop being mysterious and try to describe my

current " complaint. "

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Hi ,

I had not read your latest post when I asked you when your surgery was and if

Ondra did it.

I feel so bad for you. It has to be frustrating not knowing if everything that

you are experiencing is normal for someone who has been through 28 hours of

surgery. Every bone and organ in your body has surely been effected.

I have not had the first surgery yet so I can't help you with my experiences but

I want you to know I am praying for you.

Joyce

Here goes (gulp)

OK, I'll stop being mysterious and try to describe my

current " complaint. "

As many members know, I had 28 hours of revision surgery in two

stages in Feb. and March. They got out all my old hardware including

some pelvic bolts from a previous revision which had been causing me

enormous pain. The re-correction included pedicle subtraction

osteotomy. Subsequently they had to go back in and remove a hematoma.

I have been in worsening pain since my release from the hospital at

the end of March. I can no longer wear my TLSO because my spine does

not seem to be shaped the way it was when this was first fitted

and " built. " I can no longer leave my apartment because of pain which

gets worse the longer I am on my feet. I seem to bend more and more

toward my left (coronal plane) after getting up to walk and walking

around. The main focus of my posterior pain seems to be on my left

side over my rib cage, possibly slightly more thoracic than lumbar.

Sometimes it " circles around " to the front, so that I have a band of

pain, roughly 2-3 inches wide, encircling about half my torso. In

front, it feels like horrible indigestion. In back, it feels like a

knife sticking in my ribs.

When someone touches my back, the painful area is tender and more

painful to palpation. I seem to have several little marks in the

area, possibly from staples I had removed on April 14.

Also on April 14, I had my most recent x-rays and was told that

everything looked fine. I finally took a good look at these x-rays

myself (tonight), with a family member. We were shocked to see that

they show pronounced scoliosis, probably comparable to what I had as

a teen-ager. My back looks pretty scoliotic to the " naked eye "

anyway -- puzzling indeed to everyone close to me who has followed

this whole sorry saga -- but I guess there was just something

definitive and upsetting about seeing this " confirmed " so starkly on a

black and white film. I am not sure the pain and the curvature are

related but suspect they must be somewhat related, since I curve more

the longer I am in an upright position and since my pain increases

along with the curvature.

I realize I have made the whole thing sound functional (rather than

structural). I suspect that it has elements of both and that it must

be at least partially structural.

I also do not know if this represents some deterioration since my

surgery. On the one hand, I feel and look worse (subjectively). On

the other hand, it is kind of shocking and mystifying that the doctor

said nothing about this marked scoliosis on my most recent x-ray. I

do not currently have access to earlier post-op x-rays.

Since the hardware looks o.k. on the x-ray, I have to assume that

nothing is broken or markedly displaced.

I am wondering what a CT scan might show that would be helpful. (I am

getting rechecked next week and am supposed to get both a CT and more

spinal films.)

I am wondering what can be done about any of this, if anything.

My son had to tell me this evening that we talked on the phone around

1 p.m. today. I had, and have, no memory of the conversation. He said

I sounded pretty groggy. Clearly I am taking maximum pain meds --

enough to make me severely dizzy at times as well, yet not enough to

do more than take the edge off my relentless left-sided pain. I have

to get my body into one particular and very precise position to get

any relief. At times no position works. I was up all last night

(then asleep at 1 when my son called).

I almost went to the ER tonight. But I am not bleeding or comatose

or anything overtly " acute, " so I talked myself out of it.

I am living in my recliner, trying to distract myself with TV and

reading. I miss my walking terribly. I worry about getting blood

clots in my legs or otherwise going down the tubes from this

sedentary life.

I can't believe how crooked I am, especially on the x-ray.

May I be truly frank and open with you, my dear friends and fellow

sufferers, at the risk of eliciting some head-shaking and eye-rolling

and the like? -- At times, these days, I feel I am " walking " (so to

speak) that fine line between profound despair and off-the-wall

hysteria!

Thanks for letting me unload, and please write back with any helpful

remarks you may have.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

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Dear ,

I was so sorry to read of your recent difficulties. Here I am

feeling sorry for myself because my legs hurt and that is absolutely

nothing compared to what you are going through.

As far as having memory lapses it could be due to medication and

all the anesthesia you were given (Disclaimer, I am not a doc). I

can only speak from personal experience. I have very little memory

of the first two weeks I was home post-op. I was also having memory

lapses three months later. We had a Christmas party and in the

middle of a conversation I would just go blank. It was a real

milestone for me when I was able to read and work a crossword puzzle.

If you are feeling absolutely horrible do not talk yourself out

of going to the ER. If you are not comfortable with the ER then call

Dr. Ondra and demand to be seen. You have been through hell and

deserve some follow up. Just because the x-rays show the hardware is

in place doesn't mean something else is wrong.

And as far as that " fine line between profound despair and off-

the-wall hysteria " , I've been there. You shouldn't be alone. Are

you able to have someone with you or at least checking on you

frequently? That made all the difference for me. I also wasn't

afraid to call the docs when I felt I was going over the edge.

That's what they are there for.

You will be in my prayers.

Barbara

> OK, I'll stop being mysterious and try to describe my

> current " complaint. "

>

> As many members know, I had 28 hours of revision surgery in two

> stages in Feb. and March. They got out all my old hardware

including

> some pelvic bolts from a previous revision which had been causing

me

> enormous pain. The re-correction included pedicle subtraction

> osteotomy. Subsequently they had to go back in and remove a

hematoma.

>

> I have been in worsening pain since my release from the hospital at

> the end of March. I can no longer wear my TLSO because my spine

does

> not seem to be shaped the way it was when this was first fitted

> and " built. " I can no longer leave my apartment because of pain

which

> gets worse the longer I am on my feet. I seem to bend more and more

> toward my left (coronal plane) after getting up to walk and walking

> around. The main focus of my posterior pain seems to be on my left

> side over my rib cage, possibly slightly more thoracic than lumbar.

> Sometimes it " circles around " to the front, so that I have a band

of

> pain, roughly 2-3 inches wide, encircling about half my torso. In

> front, it feels like horrible indigestion. In back, it feels like a

> knife sticking in my ribs.

>

> When someone touches my back, the painful area is tender and more

> painful to palpation. I seem to have several little marks in the

> area, possibly from staples I had removed on April 14.

>

> Also on April 14, I had my most recent x-rays and was told that

> everything looked fine. I finally took a good look at these x-rays

> myself (tonight), with a family member. We were shocked to see that

> they show pronounced scoliosis, probably comparable to what I had

as

> a teen-ager. My back looks pretty scoliotic to the " naked eye "

> anyway -- puzzling indeed to everyone close to me who has followed

> this whole sorry saga -- but I guess there was just something

> definitive and upsetting about seeing this " confirmed " so starkly on

a

> black and white film. I am not sure the pain and the curvature are

> related but suspect they must be somewhat related, since I curve

more

> the longer I am in an upright position and since my pain increases

> along with the curvature.

>

> I realize I have made the whole thing sound functional (rather than

> structural). I suspect that it has elements of both and that it

must

> be at least partially structural.

>

> I also do not know if this represents some deterioration since my

> surgery. On the one hand, I feel and look worse (subjectively). On

> the other hand, it is kind of shocking and mystifying that the

doctor

> said nothing about this marked scoliosis on my most recent x-ray. I

> do not currently have access to earlier post-op x-rays.

>

> Since the hardware looks o.k. on the x-ray, I have to assume that

> nothing is broken or markedly displaced.

>

> I am wondering what a CT scan might show that would be helpful. (I

am

> getting rechecked next week and am supposed to get both a CT and

more

> spinal films.)

>

> I am wondering what can be done about any of this, if anything.

>

> My son had to tell me this evening that we talked on the phone

around

> 1 p.m. today. I had, and have, no memory of the conversation. He

said

> I sounded pretty groggy. Clearly I am taking maximum pain meds --

> enough to make me severely dizzy at times as well, yet not enough

to

> do more than take the edge off my relentless left-sided pain. I

have

> to get my body into one particular and very precise position to get

> any relief. At times no position works. I was up all last night

> (then asleep at 1 when my son called).

>

> I almost went to the ER tonight. But I am not bleeding or comatose

> or anything overtly " acute, " so I talked myself out of it.

>

> I am living in my recliner, trying to distract myself with TV and

> reading. I miss my walking terribly. I worry about getting blood

> clots in my legs or otherwise going down the tubes from this

> sedentary life.

>

> I can't believe how crooked I am, especially on the x-ray.

>

> May I be truly frank and open with you, my dear friends and fellow

> sufferers, at the risk of eliciting some head-shaking and eye-

rolling

> and the like? -- At times, these days, I feel I am " walking " (so

to

> speak) that fine line between profound despair and off-the-wall

> hysteria!

>

> Thanks for letting me unload, and please write back with any

helpful

> remarks you may have.

>

>

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Thanks, " Elder " (!) Carole.

Yes, I agree -- Dr. Ondra should have seen me about two weeks ago already. Or

someone should have seen me. The way things are set up now, I have been

scheduled to see him Tuesday the 4th, but after undergoing new x-rays and CT

with dye on Saturday, i.e., tomorrow.

Remembering what an ordeal my pre-op CT without dye was (I was much less crooked

and somewhat capable of lying still at that time) I doubt that these tests will

be fun. I keep wondering if I need them. The cause of my whole problem seems

to be staring me in the face with just a glance in my mirror . . . .

This time he wants thoraco-lumbar spine T3-S1 with infusion, lumbar spine with

dye, and pelvis with dye. Good grief, I see I also have multiple phone numbers

to call for preregistration for all this. (I am looking at the orders Ondra's

office faxed to me re the tests.) I also see that my current diagnosis appears

more simplified than I remember -- 737.39 scoliosis, for anyone who may have

memorized the ICD-9. I seem to have come full circle, yes? It's taken me some

42 years to progress from scoliosis to . . . .

hmmm, more and worse scoliosis. 42 years and, what, six bigtime spinal

operations? (Sigh -- glower -- inarticulate muttering, etc.)

The process of medical decision making re these specific assessments is kind of

mysterious from my vantage point, since I have actually not spoken to Dr. Ondra

or heard from him personally. He does have a very capable staff, but no one

there has actually seen me since last month. I had emailed my woes (succinct

version) to Lidia, the nurse-practitioner. I assume she relayed this

subjective report of my current complaint to him.

I might be a little more assertive about all this except that I still have some

hesitancy with Dr. Ondra. He is just so nice. He does not seem particularly

" offendable " but I somehow feel I have to tiptoe a little around him. I am shy

about asking him the hard-nosed questions, which is unlike me. Maybe it is a bit

of military transference or something -- he started his career at West Point,

did his neurosurgery training at Walter , etc. I grew up in the Army and had

my first fusion at Walter , although it was strictly orthopods in those

days. They were not very nice to me, all of them, but I probably called them

" Sir " anyway. It's a whole other culture, you know. I don't know how you answer

the phone at home -- I tend to mutter a trite if earnestly chipper " Hello " --

but back in those days, it was always " Col. Rasche's quarters,

speaking. "

My husband and son have been telling me for years that I am maddeningly

indirect, a trait that hubby refers to as my nice-girl syndrome. I have been

barking back at them with the news that this is a universal gender problem and

it is time for them to read Deborah Tannen on men's and women's differing styles

of communication, blah, blah, blah. But right now, I am no longer so sure. I was

twisted to the left already on the 14th, when I last saw Ondra, and do you think

I said anything about it at all? Nor did he. In retrospect, this gives me that

old heartsick feeling I have had about never mentioning the OBVIOUS new

deformity I acquired after my '86 fusion to dear old Dr. Hammerberg. I was

immediately stooped over in the sagittal plane post-op. Yet neither of us said a

word about it for the next 11 years, by which time I was totally disabled.

I am really hoping my son decides to come to the doc with me on Tuesday, since

he has been following this whole saga very closely, bless his heart -- I am so

proud of this guy, who has been there for me through three operations starting

when he himself was a wee lad of 3, poor babe. He also stayed with me for that

whole month in Boston. He came as often as he could this last time as well,

although there was that one terrible and scarey stretch in the ICU when no one

was allowed in to see me and I wondered if I even had a family anymore, as I was

getting bopped by my nurse and bruised by the restraints on my ankles and

lectured on being a naughty girl for whatever I did while delirious. I guess I

had an excuse for not being very direct and assertive at that particular time,

though, as I believe I was still intubated.

That memory is what's really hanging over me right now, intermingled with the

sickening suspicion that whatever is wrong with me has got to mean more surgery,

right? I just don't know if I can face another stint in that %$#^ & SICU. But I

may have to. I mean, what else are they going to do, get a band of husky young

spinal fellows together to manually manipulate my spine back into its rightful

configuration while I avoid anesthesia and delirium entirely and simply pass out

on the table till someone hands the damsel some smelling salts to bring her

around?

Anyway, my son says he has some very definite questions for Dr. Ondra. Boy, do

I need someone who can ask such questions with ease and without all the hemming

and hawing.

Email is great for avoiding one's interpersonal phobias, and I have almost but

not quite sent Ondra a brief, frank email-S.O.S. this week. I am stuck on the

phraseology, though. Is there a polite way to ask why I am all twisted on the

left, with a big rib hump on the right that I do not believe was there before?

If not, what is the impolite way to communicate and get a straight answer? How

do guys do this, I wonder. I have a suspicion that, in general, guys may not ask

too many questions, actually -- they probably talk about the Cubs or something

safe and guy-friendly while they are signing up for major surgery.

Rand was blunt in a kind of acerbic and sometimes wonderfully sarcastic way --

the irony so subtle you almost missed it if you were not listening closely for

tone, nuance, whatever. HIM I could confront on this situation. When he got

witty and pointed, I gave it right back to him. I really enjoyed our easy

communication. I miss him.

I guess the person I miss even more (in my current regressed condition -- for

heaven's sake, I am just a few years shy of 60, after all! I think " growing up "

may be a genuine myth) is the Colonel. He was always such an impeccably polite,

diplomatic man who raised me to have perfect table manners and quaintly

impeccable grammar and the whole bit. But when they tortured me one time too

many in the cast room, he went striding off for a frank man-to-man chat with the

chief of orthopedics, and my next cast finally got done right (while meanwhile I

got morphine to live through the experience). That's the advocate I need right

now -- the Colonel -- but he has been buried at Arlington since 1984.

Now is the time for me to go back over this whole post and delete all the

shmaltz and embarrassing self-revelation, but what the hell. You gotta tell

SOMEONE, right?

I added a Duragesic patch to my other meds. I've had it on for 24 hours already

with no discernible difference in my pain level. I can not live this way. But

what choice do I have? This is not really living in my book -- dragging your

twisty artifact of a spinal column around your house for a few feet while trying

not to moan and groan too horribly with each few millimeters of motion . . . .

I don't know where " crookeddancer " got her insight that Ondra is going to help

me, but I hope she has a pipeline to the mighty and powerful of the universe,

whoever that may be!

Thanks so much for writing. Especially with your hand in a cast! Poor Carole.

You are definitely a full-fledged member of this group, with Feisty Honors in

all departments. Let's face it, we are the people who write kind and helpful

posts to others like ourselves while confined to casts or devising some sort of

computer-posture-for-the-quadruped . . . . Are we crazy? Simply driven mad

with pain and frustration and disability, till our eccentricity glows in the

dark?

Sorry, time to bite the bullet and go in search of my nice-girl persona once

more. I am so incredibly grateful to whoever invented television despite how

exorbitant cable has turned out to be for someone trying to survive on

disability. I truly do not know what would have become of me by now, were it

not for (1) this group of empathic feisties; (2) " Judging Amy " ; and (3) " King of

the Hill " . . . . .

Re: Here goes (gulp)

Dear ,

This will have to be short due to the fact that one hand is in a cast. I

just had to stop by after I read your posts. I can offer mostly platitudes,

sadly. But, as far as goes the pain, could it be that your body is still

searching for its new " center " due to its new configuration? I also hope

that you

will quickly receive answers to all of your questions. Also, why wait for

your

next appointment? Run, don't walk, back to your surgeon!

I wish far better things for you who have done so much for us!

Sincerely,

Carole (the elder)

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Well, I think I'll try to hang on now that the date is so close for seeing the

guy. But I agree with you. I should have been much more assertive many days

earlier. I find it hard to " bug " anyone unless I am sure that something is

acutely and urgently wrong with my body. (Right, I just bug all of you nice

people instead of bothering my surgeon!)

Thanks,

Rasche , J.D.

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Here goes (gulp)

OK, I'll stop being mysterious and try to describe my

current " complaint. "

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

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Guest guest

I'm speechless, , except to say that I too wish you had " the colonel "

to help you right now. (Did you really call him that or is this a subtle

allusion to Seventh Heaven?)

I too like King of the Hill. It's on too late, and I keep forgetting to set the

VCR for it, but the humor is just about right by me.

I hope your son comes through for you, and gives em h*ll if necessary!

Sharon

Re: Here goes (gulp)

Dear ,

This will have to be short due to the fact that one hand is in a cast. I

just had to stop by after I read your posts. I can offer mostly platitudes,

sadly. But, as far as goes the pain, could it be that your body is still

searching for its new " center " due to its new configuration? I also hope

that you

will quickly receive answers to all of your questions. Also, why wait for

your

next appointment? Run, don't walk, back to your surgeon!

I wish far better things for you who have done so much for us!

Sincerely,

Carole (the elder)

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And thanks again, Sharon. My brother Bill, who has a gift for the comedic, has

always called our father the colonel. but his actual given name was Herbert.

When my bro' was younger, he referred to our mother, whose name was Gertrude, as

" my little mother, " which soon turned into " my little Muller " after he acquired

a Cub Scout leader by the name of Ernie Muller. It was not long before our

parents collectively became known as " Ernie and Bert. " " The Colonel " came

later. After my own son Matt had been hanging out with Uncle Bill for a while as

a toddler, what do you know, I became " my little mommy. "

My son had a friend in high school whose name was . I no longer even

remember her boyfriend's name, since Bill always referred to them as Beeler and

Baldy. He also used to have a very good buddy called Arnold, who laid down the

law, forcing Bill to use his real name, which is Mark. I still have to correct

myself every once in a while when I start asking him how Arnold is doing these

days. And about once a year or so, Matt will hear one of Bill's old stories and

ask me yet again, " Who ARE Beeler and Baldy, by the way? "

I THINK Bill came up with " the Colonel, " but it is possible that this name was

coined by Bill's ex-wife, Margaret -- a.k.a. " Miss Magnolia. "

Rasche , J.D.

Medicolegal Writing & Editorial Services

6541 N. Francisco, #2

Chicago, IL 60645

(773) 508-1507

Harrington rod? Concerns arising from previous scoliosis surgery? For

information, group support, ongoing discussion with others:

/

Re: Here goes (gulp)

Dear ,

This will have to be short due to the fact that one hand is in a cast. I

just had to stop by after I read your posts. I can offer mostly

platitudes,

sadly. But, as far as goes the pain, could it be that your body is still

searching for its new " center " due to its new configuration? I also hope

that you

will quickly receive answers to all of your questions. Also, why wait for

your

next appointment? Run, don't walk, back to your surgeon!

I wish far better things for you who have done so much for us!

Sincerely,

Carole (the elder)

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Guest guest

Oh boy, remember that Janis Ian song " I learned the truth at 17 that

love was meant for beauty queens.... " ? That song always made me cry

because at 17 in a body cast from chin to knees, there was no way I

could even dream about being beautiful. Thank God those days are

over. I'm still no beauty queen, though!! I wonder what she's

writing songs about now that she's older. Will have to do a web

search some day.....

Yes, stay strong, -- use music or memories or Lucy or

whatever will work for you.... I hope they they let you listen to

music during your tests today. Good, good luck and hope you'll let

us know how you made out if you feel up to it tonight!!!

loriann

> Dianne,

>

> Such wise and consoling words. You are kind and insightful, and I

> thank you.

>

> I love Lucy too. (Who wouldn't?)

>

> Also, right now I have some old song lyrics lurching around in my

> befogged brain. Although I like to think of myself as a literary

type

> at times, these do not really fit the image. In fact, in a couple

of

> succinct lines, the unknown songwriter seems to have committed at

> least 2 or 3 infractions, e.g., fudging her tenses/falling short of

> her intended rhyme scheme. Still, some bad lyrics can be good for

> the soul, and I find these oddly helpful. They have that ring of

> authenticity -- the wisdom of the growing person undergoing a

> wrenching and necessary metamorphosis as she finally relinquishes

the

> search for the Colonel/Parent/Portable Mentor and Deity who will

> shelter her from the vicissitudes of adulthood and " make it all

> better. " (Actually, I kinda think these are from a song by Janis

Ian

> or someone else who was about 16 at the time she promulgated all

this

> wisdom . . . )

>

> [to be sung in a kind of mournful Celtic cadence -- sometimes

verging

> on a wail, but at all times falling short of a shriek -- while

> plucking one's distressed and beloved old acoustic guitar,

preferably

> during " Say No to Teen Suicide " Week]:

>

> Well, sometimes I think that I just can't go on

> But then I remember --

> " Kid, you gotta be strong . . . "

>

> With gratitude,

>

>

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,

My local spine doc warned me that sometimes after surgical correction

of flatback, patients do end up very crooked sideways and need

additional surgery to correct it. I don't know that he used the

term " coronal decompensation " but I suspect that that's what he

meant. I wish I could provide you with more information, but I

didn't know enough to ask him how soon following revision surgery one

would be aware of this complication and if there is urgency to go

back in and correct it, and what the surgery would involve to correct

it. If I were you (easy for me to say since I'm not you!) I'd call

your doctor and ask him point blank if it's possible that you have

this complication, and if there is any urgency to get in for an

evaluation sooner than your already scheduled appt.

I'll borrow some of Elissa's disclaimer - I'm not a doctor so don't

listen to me. It's hard to see you burdened with worrying about

things when a phone call might help resolve them more quickly.

Obviously, I'm in the squeaky wheel gets the grease camp.

I keep hoping you'll be like Suzy Habibi - she was desperate in pain

for quite a while after her surgery, and then things seemed to turn

around for her. I haven't heard from her in a while, but hope that

all is still well with her, and that things will be soon for you....

Good luck,

loriann

> Thanks so much, Sharon. I have to keep this short since I am in,

well, frankly, agony.

>

> I am still pining to hear from someone that they have heard of

something like this before. It is such a mystery. I wonder if this is

what the research studies refer to as post-op coronal

decompensation. It's as if one whole side of my back has collapsed.

>

>

>

>

>

>

> Rasche , J.D.

> Medicolegal Writing & Editorial Services

> 6541 N. Francisco, #2

> Chicago, IL 60645

> (773) 508-1507

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Guest guest

Sharon and other King of the Hill fans,

Did you see the one where Peggy got hurt skydiving and was in the

body cast? That one was a bit painful to watch (maybe it brought

back those old horrible feelings of being flat on my back in bed for

three months as as a teen) and I was bawling for some of it and at

the end.

The other day my son was studying the excretory system in school, and

had no trouble identifying the urethra (thank God for Hank's narrow

one!) He's also already been familiar with a lot of history and

geography from watching the Simpsons. Scary, huh?

loriann

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Guest guest

I missed those episodes. I guess I'd better find out the schedule and set the

VCR!

Re: Here goes (gulp)

Sharon and other King of the Hill fans,

Did you see the one where Peggy got hurt skydiving and was in the

body cast? That one was a bit painful to watch (maybe it brought

back those old horrible feelings of being flat on my back in bed for

three months as as a teen) and I was bawling for some of it and at

the end.

The other day my son was studying the excretory system in school, and

had no trouble identifying the urethra (thank God for Hank's narrow

one!) He's also already been familiar with a lot of history and

geography from watching the Simpsons. Scary, huh?

loriann

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

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Guest guest

,

Did you ask me a question about my Chiari? I deleted an email right in the

middle of reading it. I cut you off in the middle of a sentence. How rude!

Joyce

Here goes (gulp)

OK, I'll stop being mysterious and try to describe my

current " complaint. "

As many members know, I had 28 hours of revision surgery in two

stages in Feb. and March. They got out all my old hardware including

some pelvic bolts from a previous revision which had been causing me

enormous pain. The re-correction included pedicle subtraction

osteotomy. Subsequently they had to go back in and remove a hematoma.

I have been in worsening pain since my release from the hospital at

the end of March. I can no longer wear my TLSO because my spine does

not seem to be shaped the way it was when this was first fitted

and " built. " I can no longer leave my apartment because of pain which

gets worse the longer I am on my feet. I seem to bend more and more

toward my left (coronal plane) after getting up to walk and walking

around. The main focus of my posterior pain seems to be on my left

side over my rib cage, possibly slightly more thoracic than lumbar.

Sometimes it " circles around " to the front, so that I have a band of

pain, roughly 2-3 inches wide, encircling about half my torso. In

front, it feels like horrible indigestion. In back, it feels like a

knife sticking in my ribs.

When someone touches my back, the painful area is tender and more

painful to palpation. I seem to have several little marks in the

area, possibly from staples I had removed on April 14.

Also on April 14, I had my most recent x-rays and was told that

everything looked fine. I finally took a good look at these x-rays

myself (tonight), with a family member. We were shocked to see that

they show pronounced scoliosis, probably comparable to what I had as

a teen-ager. My back looks pretty scoliotic to the " naked eye "

anyway -- puzzling indeed to everyone close to me who has followed

this whole sorry saga -- but I guess there was just something

definitive and upsetting about seeing this " confirmed " so starkly on a

black and white film. I am not sure the pain and the curvature are

related but suspect they must be somewhat related, since I curve more

the longer I am in an upright position and since my pain increases

along with the curvature.

I realize I have made the whole thing sound functional (rather than

structural). I suspect that it has elements of both and that it must

be at least partially structural.

I also do not know if this represents some deterioration since my

surgery. On the one hand, I feel and look worse (subjectively). On

the other hand, it is kind of shocking and mystifying that the doctor

said nothing about this marked scoliosis on my most recent x-ray. I

do not currently have access to earlier post-op x-rays.

Since the hardware looks o.k. on the x-ray, I have to assume that

nothing is broken or markedly displaced.

I am wondering what a CT scan might show that would be helpful. (I am

getting rechecked next week and am supposed to get both a CT and more

spinal films.)

I am wondering what can be done about any of this, if anything.

My son had to tell me this evening that we talked on the phone around

1 p.m. today. I had, and have, no memory of the conversation. He said

I sounded pretty groggy. Clearly I am taking maximum pain meds --

enough to make me severely dizzy at times as well, yet not enough to

do more than take the edge off my relentless left-sided pain. I have

to get my body into one particular and very precise position to get

any relief. At times no position works. I was up all last night

(then asleep at 1 when my son called).

I almost went to the ER tonight. But I am not bleeding or comatose

or anything overtly " acute, " so I talked myself out of it.

I am living in my recliner, trying to distract myself with TV and

reading. I miss my walking terribly. I worry about getting blood

clots in my legs or otherwise going down the tubes from this

sedentary life.

I can't believe how crooked I am, especially on the x-ray.

May I be truly frank and open with you, my dear friends and fellow

sufferers, at the risk of eliciting some head-shaking and eye-rolling

and the like? -- At times, these days, I feel I am " walking " (so to

speak) that fine line between profound despair and off-the-wall

hysteria!

Thanks for letting me unload, and please write back with any helpful

remarks you may have.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

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Guest guest

I've hard that some kids now know something about current events simply from

watching " The Daily Show. "

Re our friends who sell propane and teach Spanish in Arlen, I loved the one

about Bobby's gout and recommended it to someone I know who struggles with gout

himself.

Rasche , J.D.

Medicolegal Writing & Editorial Services

6541 N. Francisco, #2

Chicago, IL 60645

(773) 508-1507

Harrington rod? Concerns arising from previous scoliosis surgery? For

information, group support, ongoing discussion with others:

/

Re: Here goes (gulp)

Sharon and other King of the Hill fans,

Did you see the one where Peggy got hurt skydiving and was in the

body cast? That one was a bit painful to watch (maybe it brought

back those old horrible feelings of being flat on my back in bed for

three months as as a teen) and I was bawling for some of it and at

the end.

The other day my son was studying the excretory system in school, and

had no trouble identifying the urethra (thank God for Hank's narrow

one!) He's also already been familiar with a lot of history and

geography from watching the Simpsons. Scary, huh?

loriann

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

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Guest guest

No problem, and you have supplied the answers now. Many thanks.

Rasche , J.D.

Medicolegal Writing & Editorial Services

6541 N. Francisco, #2

Chicago, IL 60645

(773) 508-1507

Harrington rod? Concerns arising from previous scoliosis surgery? For

information, group support, ongoing discussion with others:

/

Here goes (gulp)

OK, I'll stop being mysterious and try to describe my

current " complaint. "

As many members know, I had 28 hours of revision surgery in two

stages in Feb. and March. They got out all my old hardware including

some pelvic bolts from a previous revision which had been causing me

enormous pain. The re-correction included pedicle subtraction

osteotomy. Subsequently they had to go back in and remove a hematoma.

I have been in worsening pain since my release from the hospital at

the end of March. I can no longer wear my TLSO because my spine does

not seem to be shaped the way it was when this was first fitted

and " built. " I can no longer leave my apartment because of pain which

gets worse the longer I am on my feet. I seem to bend more and more

toward my left (coronal plane) after getting up to walk and walking

around. The main focus of my posterior pain seems to be on my left

side over my rib cage, possibly slightly more thoracic than lumbar.

Sometimes it " circles around " to the front, so that I have a band of

pain, roughly 2-3 inches wide, encircling about half my torso. In

front, it feels like horrible indigestion. In back, it feels like a

knife sticking in my ribs.

When someone touches my back, the painful area is tender and more

painful to palpation. I seem to have several little marks in the

area, possibly from staples I had removed on April 14.

Also on April 14, I had my most recent x-rays and was told that

everything looked fine. I finally took a good look at these x-rays

myself (tonight), with a family member. We were shocked to see that

they show pronounced scoliosis, probably comparable to what I had as

a teen-ager. My back looks pretty scoliotic to the " naked eye "

anyway -- puzzling indeed to everyone close to me who has followed

this whole sorry saga -- but I guess there was just something

definitive and upsetting about seeing this " confirmed " so starkly on a

black and white film. I am not sure the pain and the curvature are

related but suspect they must be somewhat related, since I curve more

the longer I am in an upright position and since my pain increases

along with the curvature.

I realize I have made the whole thing sound functional (rather than

structural). I suspect that it has elements of both and that it must

be at least partially structural.

I also do not know if this represents some deterioration since my

surgery. On the one hand, I feel and look worse (subjectively). On

the other hand, it is kind of shocking and mystifying that the doctor

said nothing about this marked scoliosis on my most recent x-ray. I

do not currently have access to earlier post-op x-rays.

Since the hardware looks o.k. on the x-ray, I have to assume that

nothing is broken or markedly displaced.

I am wondering what a CT scan might show that would be helpful. (I am

getting rechecked next week and am supposed to get both a CT and more

spinal films.)

I am wondering what can be done about any of this, if anything.

My son had to tell me this evening that we talked on the phone around

1 p.m. today. I had, and have, no memory of the conversation. He said

I sounded pretty groggy. Clearly I am taking maximum pain meds --

enough to make me severely dizzy at times as well, yet not enough to

do more than take the edge off my relentless left-sided pain. I have

to get my body into one particular and very precise position to get

any relief. At times no position works. I was up all last night

(then asleep at 1 when my son called).

I almost went to the ER tonight. But I am not bleeding or comatose

or anything overtly " acute, " so I talked myself out of it.

I am living in my recliner, trying to distract myself with TV and

reading. I miss my walking terribly. I worry about getting blood

clots in my legs or otherwise going down the tubes from this

sedentary life.

I can't believe how crooked I am, especially on the x-ray.

May I be truly frank and open with you, my dear friends and fellow

sufferers, at the risk of eliciting some head-shaking and eye-rolling

and the like? -- At times, these days, I feel I am " walking " (so to

speak) that fine line between profound despair and off-the-wall

hysteria!

Thanks for letting me unload, and please write back with any helpful

remarks you may have.

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

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Guest guest

, I'm a lurker but I try to keep up on reading and

especially enjoy yours-you are so eloquent and funny, and very

helpful. I feel so terrible for you and hope everything works out. I

came across an extract this weekend while trying to research " post op

coronal decompensation " to see what you were talking about.In

Spine 2000 Oct 1;25(19):2453-60

Drs. Deckey JE, Court C, Bradford DS discuss " loss of sagittal plane

correction after removal of spinal implants " and suggest that even

after a solid fusion, the spine may collapse if implants are removed.

It shocked my as I'm contemplating surgery in the Fall with LaGrone

and had thought about having hardware removed. I don't want to panic

anyone-it's so frustrating to think that if that is indeed the case,

why haven't I heard it before-I've talked to 5 revision specialists!

Although two did not suggest removal of hardware, they didn't tell me

anything about collapse. I haven't read the entire article which I

will do as soon as I have a little time and can find it, but wanted

to pass the info on to you as I know you have an appt. soon. I always

want to know all the worst case scenarios but I hope this has

absolutely nothing to do with you.

(I opened the extract this am on

www.microconn.com/scoliosis/revision_surgery.htm

All the best.Jo

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Guest guest

Hi Jo,

Thanks for coming out of lurk status to give some food for thought.

I believe the article you quoted was concerning people who had their

instrumentation removed, but no newer instrumention put in its place,

and seemed to be concerning sagittal plane loss of correction, rather

than coronal plane loss of correction.

Now you've got me wondering, though, if 's new curve is in

the part of her spine with the new instrumentation or in the part

without any instrumentation, or maybe both? These anatomy and

complication details fascinate me and I also like to know the worse

case scenario, but like you, I sincerely hope they have nothing to do

with , and that things get better for her soon!

Wow, you've seen 5 doctors. I will definitely keep my eye out for

any future times when you come out of lurkdom to post. Good, good

luck to you for your possible fall surgery. Dr. LaGrone is next on

my list of docs to consult with.... So far I like everything I've

heard about him and am pleased with the written info. he's given me.

Best wishes,

loriann

> , I'm a lurker but I try to keep up on reading and

> especially enjoy yours-you are so eloquent and funny, and very

> helpful. I feel so terrible for you and hope everything works out.

I

> came across an extract this weekend while trying to research " post

op

> coronal decompensation " to see what you were talking about.In

> Spine 2000 Oct 1;25(19):2453-60

> Drs. Deckey JE, Court C, Bradford DS discuss " loss of sagittal

plane

> correction after removal of spinal implants " and suggest that even

> after a solid fusion, the spine may collapse if implants are

removed.

> It shocked my as I'm contemplating surgery in the Fall with LaGrone

> and had thought about having hardware removed. I don't want to

panic

> anyone-it's so frustrating to think that if that is indeed the

case,

> why haven't I heard it before-I've talked to 5 revision specialists!

> Although two did not suggest removal of hardware, they didn't tell

me

> anything about collapse. I haven't read the entire article which

I

> will do as soon as I have a little time and can find it, but

wanted

> to pass the info on to you as I know you have an appt. soon. I

always

> want to know all the worst case scenarios but I hope this has

> absolutely nothing to do with you.

>

> (I opened the extract this am on

> www.microconn.com/scoliosis/revision_surgery.htm

>

> All the best.Jo

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Guest guest

Thank you so very much, Jo. You have encouraged me to try and read up

on all this a little more myself. So far my " lay observers " at home

do not notice any loss of sagittal plane correction, thank goodness,

but " collapse " suggests that loss of correction could be lost in an

entirely different plane as well. And I definitely qualify for

having had my hardware removed! Of course Dr. Ondra added some rods

of his own, but I still find it astounding that THE rod -- the one I

silently cussed out so many days of my life, the Harrington -- is

gone, gone, gone! (I do not want it back ever, thank you kindly!)

Of course I had great correction in 1962, without any hardware at

all. I guess the biggest setback was the installation of the

Harrington in my thirties. I figured it would be overgrown with

impossible bony stuff and who knows what by now. Since that and the

original fusion were the first and only innovations aimed at

correcting my scoliosis per se, it is hard for me to imagine why I

have sprouted this whole new scoliotic deformity on one side. But my

biomechanical understanding is primitive at best, and it certainly

seems reasonable that a spine which has been through this much

manipulation, a variety of osteotomy types, whole collections of

hardware moving in and out, might just decide to slump over in

chagrin at some point . . . .

I'm so glad people are still finding Suzy Habibi's micronn site

useful. I read some of this material a while back but need to refresh

my memory. Your lead has been very helpful to me. Also, I deeply

appreciate your comments about my contributions to the site. I rely

on this kind of " feedback " absolutely to know whether I am being

helpful to others in any way. I feel so warmed and encouraged by

posts like yours, especially during this difficult and uncertain time.

Best,

> , I'm a lurker but I try to keep up on reading and

> especially enjoy yours-you are so eloquent and funny, and very

> helpful. I feel so terrible for you and hope everything works out.

I

> came across an extract this weekend while trying to research " post

op

> coronal decompensation " to see what you were talking about.In

> Spine 2000 Oct 1;25(19):2453-60

> Drs. Deckey JE, Court C, Bradford DS discuss " loss of sagittal

plane

> correction after removal of spinal implants " and suggest that even

> after a solid fusion, the spine may collapse if implants are

removed.

> It shocked my as I'm contemplating surgery in the Fall with LaGrone

> and had thought about having hardware removed. I don't want to

panic

> anyone-it's so frustrating to think that if that is indeed the

case,

> why haven't I heard it before-I've talked to 5 revision specialists!

> Although two did not suggest removal of hardware, they didn't tell

me

> anything about collapse. I haven't read the entire article which

I

> will do as soon as I have a little time and can find it, but

wanted

> to pass the info on to you as I know you have an appt. soon. I

always

> want to know all the worst case scenarios but I hope this has

> absolutely nothing to do with you.

>

> (I opened the extract this am on

> www.microconn.com/scoliosis/revision_surgery.htm

>

> All the best.Jo

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Guest guest

,

I am very late answering your post and, for that I apologize. But, your

tests are over, and today is your appointment! You have been on my mind so

much,

and I sincerely hope that today is your day! I am also hoping against hope

that your problems will be solved by time!

Most sincerely,

Carole M. (the elder)

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Guest guest

Thanks, Carole. I'll let you know how it goes today.

I certainly don't ever get to answer all the posts I want to at this

group -- even important and fascinating posts I had hoped to reply

to -- so please don't ever apologize for a late replyu or anything

like that! (One good point about having a group with 250 members,

albeit not all highly participatory -- getting through the mail is

daunting at times, but there's always plenty of mail to get through!

And generally, someone is bound to say something articulate and

helpful, even if you yourself are tied up elsewhere.)

I am grateful for your many wonderful posts to this group and for all

the good wishes you have extended to me.

Well, let's see if I can manage to clip my toenails in the shower.

If not, I'll do my " gait " for Dr. Ondra in my nice clean socks!

Best,

> ,

>

> I am very late answering your post and, for that I apologize. But,

your

> tests are over, and today is your appointment! You have been on my

mind so much,

> and I sincerely hope that today is your day! I am also hoping

against hope

> that your problems will be solved by time!

>

> Most sincerely,

>

> Carole M. (the elder)

>

>

>

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