Catch-up posting

[Guest guest]

Grace.... Excellent posts on exercise, so informative!

.... I'd missed a week of postings and so did not see yours

regarding your visit with Rand until I'd read someone's reply to

it. Am so sorry for your frustration and understand it well. My

visit with Rand was about a month before yours. These are my

thoughts based on what he spoke about with me: According to Rand,

for surgery to be an option, at least two of three conditions need

to be present. Deg. Disk Disease. The spinal imbalance that makes it

so hard for us to straighten up. Spinal stenosis. (Sorry, not savvy

with the medical terminology and pain meds have made it that much

more challenging for me!) In my case, the two unfused disks below my

fusion are quite degenerated, especially on the forward side. My

forward pitch, though not excessive, is out of alignment enough to

warrant

correction as well, but Rand thinks this may be accomplished just by

fusing the remaining disks. So I'm guessing that his suggestions to

you were based on those criteria, and in light of the fact that your

disks are still intact and you're not bending forward, he can't but

suggest much else than physical therapy and, I guess the weight

loss. At 5'5 " and 145 pounds you're certainly not overweight. But

personally, losing 10 to 15 pounds made a world of difference in how

mobile I was. I'm 5'4 " , at my heaviest non-pregnancy weight I was

about 145 to 150 pounds and went down to between 118 to 125 pounds,

(gradually, I should add) a weight I've maintained for several years

now. My GP would like to see me gain a few pounds, actually, but I'm

afraid to gain the extra weight because of the difference in how it

makes me feel. By the way, this is just my own personal perspective,

in case that needs to be said. I'm not trying to come off as some

kind of smarty-pants. I understand well that we all have our unique

combination of complications. If anything, I sometimes wonder if I'm

kidding myself about what works and what doesn't. It all seems like

a trial and error mystery at times; what worked a month ago and what

works now... Second-guessing and doubting myself has become a fairly

constant component of my thought process since becoming more

enmeshed in the degenerative and painful aspects of this condition.

Cheryl.... My surgery date is July 15th. Here again, I'm second-

guessing myself about doing this and need to speak with Rand again.

My main concern and maybe people could chime in and tell me their

own thoughts on this... Am I risking the chance of becoming more

pitched forward by losing the mobility I have in those remaining

disks? Should I maintain until it's unbearable? I'm able to function

fairly well right now with physical therapy and medication, but

deteriorate quickly if I attempt to do too much. This does not bode

well towards holding down a full-time job, something that is

becoming more of a necessity as I'm separated from my husband now.

And speaking of that, someone else wanted to know how people were

handling the working/not working issue. I'm 45 years old. I've been

a stay at home parent for the past 18 years. I've worked part time

out of the house, and worked full time in the home. By that I mean

that as a stay at home parent, we lived simply and I did ALL the

work around the home, as well as volunteering in the schools and

church, etc... It was a good fit for me, I was able to make my own

pace (as well as one can when the kids are babies) and the time

needed to keep fit. I started to deteriorate quickly while in school

full-time last year. I'd started leaning prior to that, but it

really snowballed at that point. It was then that I found out about

flatback and started posting to this board, so I won't rehash what's

already been said. I'm applying for disability under the advice of

several trusted people and hope to be able to find some kind of work

that I'll be able to do from home, or what have you. Do I need to

add that my life is in total upheaval, or have you all figured that

out at this point? Don't want to state the obvious here.

Val.... Nice to see you posting again, I DO understand how a break

is necessary from time to time. Am looking forward to lunch on June

6th.

Franca... I wrote an email to you a long time ago thanking you for

an email you'd sent to me that was so nice and so touching. I found

it in my " mail waiting to be sent " area a few days ago and have NO

idea how I managed to screw that up. A belated thank-you and apology

is in order. That letter meant a lot to me.

Lastly, I had to rejoin this group. Not sure what happened with

, but every time I tried to sign in I'd get a message that I

wasn't a member of this group. When I tried to rejoin, I got a

message saying I was already a member. A few times around on that

catch-22 and I just rejoined with a new name. Had to use a

email, but it's not my main email. If you want to contact me

personally, please use Diannnes@.... (note, THREE " n " 's in the

email) Thanks. All my long winded best to all!

Dianne S.

Rhode Island

[Guest guest]

Welcome back Dianne.

So sorry about the seperation of you're husband, I hope you have a

large close nit family for support and freinds as on this site. I

understand about second guesing youreself, wether to have surgery or

not. I have a Dr that does not believe in surgery, I am not stooping

but when I do gardening, laundry, ect I feel like I'm being folded in

half. I have also aplied for disability. best of luck to you.

Franca

See ya june 6th.

> Grace.... Excellent posts on exercise, so informative!

>

> .... I'd missed a week of postings and so did not see yours

> regarding your visit with Rand until I'd read someone's reply to

> it. Am so sorry for your frustration and understand it well. My

> visit with Rand was about a month before yours. These are my

> thoughts based on what he spoke about with me: According to Rand,

> for surgery to be an option, at least two of three conditions need

> to be present. Deg. Disk Disease. The spinal imbalance that makes

it

> so hard for us to straighten up. Spinal stenosis. (Sorry, not savvy

> with the medical terminology and pain meds have made it that much

> more challenging for me!) In my case, the two unfused disks below

my

> fusion are quite degenerated, especially on the forward side. My

> forward pitch, though not excessive, is out of alignment enough to

> warrant

> correction as well, but Rand thinks this may be accomplished just

by

> fusing the remaining disks. So I'm guessing that his suggestions to

> you were based on those criteria, and in light of the fact that

your

> disks are still intact and you're not bending forward, he can't but

> suggest much else than physical therapy and, I guess the weight

> loss. At 5'5 " and 145 pounds you're certainly not overweight. But

> personally, losing 10 to 15 pounds made a world of difference in

how

> mobile I was. I'm 5'4 " , at my heaviest non-pregnancy weight I was

> about 145 to 150 pounds and went down to between 118 to 125 pounds,

> (gradually, I should add) a weight I've maintained for several

years

> now. My GP would like to see me gain a few pounds, actually, but

I'm

> afraid to gain the extra weight because of the difference in how it

> makes me feel. By the way, this is just my own personal

perspective,

> in case that needs to be said. I'm not trying to come off as some

> kind of smarty-pants. I understand well that we all have our unique

> combination of complications. If anything, I sometimes wonder if

I'm

> kidding myself about what works and what doesn't. It all seems like

> a trial and error mystery at times; what worked a month ago and

what

> works now... Second-guessing and doubting myself has become a

fairly

> constant component of my thought process since becoming more

> enmeshed in the degenerative and painful aspects of this condition.

>

> Cheryl.... My surgery date is July 15th. Here again, I'm second-

> guessing myself about doing this and need to speak with Rand again.

> My main concern and maybe people could chime in and tell me their

> own thoughts on this... Am I risking the chance of becoming more

> pitched forward by losing the mobility I have in those remaining

> disks? Should I maintain until it's unbearable? I'm able to

function

> fairly well right now with physical therapy and medication, but

> deteriorate quickly if I attempt to do too much. This does not bode

> well towards holding down a full-time job, something that is

> becoming more of a necessity as I'm separated from my husband now.

>

> And speaking of that, someone else wanted to know how people were

> handling the working/not working issue. I'm 45 years old. I've been

> a stay at home parent for the past 18 years. I've worked part time

> out of the house, and worked full time in the home. By that I mean

> that as a stay at home parent, we lived simply and I did ALL the

> work around the home, as well as volunteering in the schools and

> church, etc... It was a good fit for me, I was able to make my own

> pace (as well as one can when the kids are babies) and the time

> needed to keep fit. I started to deteriorate quickly while in

school

> full-time last year. I'd started leaning prior to that, but it

> really snowballed at that point. It was then that I found out about

> flatback and started posting to this board, so I won't rehash

what's

> already been said. I'm applying for disability under the advice of

> several trusted people and hope to be able to find some kind of

work

> that I'll be able to do from home, or what have you. Do I need to

> add that my life is in total upheaval, or have you all figured that

> out at this point? Don't want to state the obvious here.

>

> Val.... Nice to see you posting again, I DO understand how a break

> is necessary from time to time. Am looking forward to lunch on June

> 6th.

>

> Franca... I wrote an email to you a long time ago thanking you for

> an email you'd sent to me that was so nice and so touching. I found

> it in my " mail waiting to be sent " area a few days ago and have NO

> idea how I managed to screw that up. A belated thank-you and

apology

> is in order. That letter meant a lot to me.

>

> Lastly, I had to rejoin this group. Not sure what happened with

> , but every time I tried to sign in I'd get a message that I

> wasn't a member of this group. When I tried to rejoin, I got a

> message saying I was already a member. A few times around on that

> catch-22 and I just rejoined with a new name. Had to use a

> email, but it's not my main email. If you want to contact me

> personally, please use Diannnes@a... (note, THREE " n " 's in the

> email) Thanks. All my long winded best to all!

> Dianne S.

> Rhode Island

[Guest guest]

Diane,

I just wanted to let you know that my heart goes out to you. You certainly

have, as they say, a lot on your plate! I hope that your disability claim goes

through easily. You sure do need a break! I always glean something from

your posts! Also, I look forward to June 6th! We are going to have quite a

group!

Sincerely,

Carole M. (the elder)

[Guest guest]

Thank you Carole, I always enjoy your posts as well and very much

look forward to meeting you. All my best, Dianne]

[Guest guest]

Thank you Franca,

I do have a close knit family, four brothers and one sister, and two

wonderful sons. We all live in the same small state (the kids, of

course, in the same house) and see each other regulary and enjoy the

heck out of each others company. My husband and I are still close

and work to maintain a good friendship and solid parent base for the

kids, thank God. I know it could be so much worse.

Thanks so much for your thoughts and well wishes. All my best to

you as well, Dianne

[Guest guest]

Hi Ann,

Thank you for your concern. When I mention confusion about the

fusion (oo, I'm a poet!) I guess it's because I'm still sorting

through information I'm reading on this message board, what the

doctors have told me and different articles regarding flatback

syndrome. It's not that I think I'll pitch forward more after having

fusion, I think where the confusion lies is I've been told by three

ortho docs that, while I do have flatback, I've been able to

compensate with the flexibility maintained by not having the last

two disks fused. I don't know if I believe that I only have side to

side fusion, the way the docs say. And wouldn't fusing those disks

mean I would no longer be able to compensate as much anymore? I'm

sure I'll come out of the fusion straighter and hopefully, pain

free, but what about as time progresses? My recent experience with

anti-depressant medication has helped wonderfully with my pain

endurance, so I question if it would be wiser to wait til this

condition is less bearable. How much stiffer will I be fused

further down, what will it be like afterwards? Will that decreased

mobility quicken the symptoms of flatback? I've only seen Rand ONCE

and I'm scheduled for surgery already? It's just a lot to sort

through; I need to ask him more questions. I'm going in for an MRI

and CAT scan in a few weeks and plan on talking all this over with

him then. The local doc I'd been seeing, a very good orthopedist but

not as prolific in revision surgeries, prescribed a similar course

of action as Rand's. He was very keen on building up the muscles

around the deteriorated disks to better support them, first. Failing

that, fusing the remaining disks, osteotomies later to regain some

back curve. Where Rand and my other doctor differ is that Rand feels

I'm not going to get much more relief from physical therapy anymore.

Lucas, my local ortho doc, thinks that I could go on indefinitely

with physical therapy and lead a fairly normal life. What he seems

to fail to grasp and Rand recognizes, is I've BEEN doing those

exercises for years and no longer get the support or relief it once

provided.

Time to wrap up this rant, have I annoyed you as much as I'm

annoying myself with this waffling, couldn't you just smack me now!?

Heh heh.

Height wise, I've only lost about a quarter of an inch. I was

surprised, looking at how squashed my disks appear in x-rays, I

would have thought it would have been more.

I do get pains in my thighs, though they come and go based on how

much activity I'm attempting. My hips bother me, especially over

the area where the graft was taken at original surgery.

I am learning to take things one step at a time, it does help and I

don't feel as overwhelmed as I did when I first started posting.

This group has helped more than I could ever say.

All my best and am really looking

forward to meeting with you at the June lunch. Dianne

[Guest guest]

Dianne,

You are correct, all of this is confusing with all the different

things docs tell us. It's hard to sort through it all and figure out

what's right for you as an individual. I have no back pain but lots

of leg pain. I am fused to S1 and have learned to compensate for the

loss of mobility. It still frustrates me when docs tell me to do

aerobic exercise, abdominal strength training, etc. Don't they know

that my spine is totally immobile? The only one who understand is my

PT. She has been wonderful.

After my first revision in 1988 I almost hugged my doc because

of the change in my appearance. For the first time in 25 years I

didn't have the rib hump. I actually had a bit of a waist too. That

has changed but it just seems like I'm carrying extra flab in that

area and how can I exercise to get rid of it?

, thank for you kind words on my post. You are right on

proofreading. I always have my hubby read any letters before I send

them out. There have been times when I have changed a lot because he

will point out when I get too emotional.

As always, we just have to hang in there and keep fighting for

ourselves. I'm sure we have all had times when we feel like just

giving up; it's so hard to keep going from doc to doc and you feel

like you are talking to a brick wall. Don't know if I posted this

before but I went to the library last week and instead of my library

card I gave the librarian my Blue Cross card. I'm just so used to

throwing it around.

Take care everyone. Barbara

[Guest guest]

In a message dated 5/8/2004 12:21:38 PM Eastern Daylight Time,

ri_dianne@... writes:

> I've only seen Rand ONCE

> and I'm scheduled for surgery already? It's just a lot to sort

> through; I need to ask him more questions. I'm going in for an MRI

> and CAT scan in a few weeks and plan on talking all this

> over with

> him then.

Dianne,

I cut and pasted what you typed because I really wanted to zero in on this.

Rand truly is a great surgeon. I hope your mind can be put at ease on that

thought/fact. He obviously does lots of HARMS cases.

The set up of the office personnel is crummy. If ever you run in to a snag

where you feel as if he is not calling you back in a timely fashion, keep

calling. His secretary, Priscilla, knows how unhappy I was at Rand not calling

me back. Matter of fact, Rand STILL has not called me back. I did hear from

Priscilla Wednesday, May 5 that Rand wanted me to have a discogram. I then told

her I wanted to speak to Rand about that. Still...nothing. And I don't think he

will call me back.

I don't mean to branch off the topic of you. My point is this...I told

Priscilla before May 5 there were other patients of Rand's who also had

difficulty getting replies from him. Be it telephone calls or whatever. Once I

said that, I heard back from her with a message from Rand to have the Discogram

and to stop taking all meds. Yah right! Like I can actually handle life in this

much pain. LOL

I just want to be honest and open with you about getting call backs from Rand.

It's usually through his secretary. Maybe if you bring this topic up with Rand

during your next appt you'll enlighten him. I also don't mind you using my name

or if you're not comfy with that just say a patient of his living in

Connecticut.

Maybe it's all different once a patient is actually scheduled for surgery. Time

is $$$$$ right?

You'll do fine and I truly believe you are in great hands. I look forward to

following your progress.

xoxo's

[Guest guest]

,

I came away from my visit with Rand with a pretty clear idea that he

was not available for phone consults or even email. I'd asked

Priscilla what to do if questions came to mind, as they always do

AFTER the visit, and she told me to email or call her and she would

relay them and get back to me with answers. This seems a bit

arduous, so I'm reading the board and writing things down until I

see him again. I figure I need the MRI and CAT scan anyway, so I'm

not feeling all that pressured. One comment Rand made that I found a

little off-putting... when I mentioned future questions he remarked

that he was SURE I'd find out whatever I needed to know from this

forum. Going by 's posts about his sense of humor, though,

I'm fairly certain he was being wry.

All my best, Dianne

[Guest guest]

Dianne,

I think the offer for you to email questions to his office was pretty

nice. I know some of us would LOVE to get written answers to our

questions via email. But if you can wait until you see him, it's

also nice to check out the doc's body language as they answer

questions..... I would have found his comment about this site off-

putting, too. I probably would have felt the need to give him a

sarcastic come-back, something like " Now now, doctor, surely you

know I value YOUR advice above all others..... "

loriann

> ,

>

> I came away from my visit with Rand with a pretty clear idea that

he

> was not available for phone consults or even email. I'd asked

> Priscilla what to do if questions came to mind, as they always do

> AFTER the visit, and she told me to email or call her and she would

> relay them and get back to me with answers. This seems a bit

> arduous, so I'm reading the board and writing things down until I

> see him again. I figure I need the MRI and CAT scan anyway, so I'm

> not feeling all that pressured. One comment Rand made that I found

a

> little off-putting... when I mentioned future questions he remarked

> that he was SURE I'd find out whatever I needed to know from this

> forum. Going by 's posts about his sense of humor, though,

> I'm fairly certain he was being wry.

>

> All my best, Dianne

[Guest guest]

Dianne,

I am floored! When I mentioned this forum Rand acted surprised, like he hadn't

a clue we existed. Then a couple of things I typed on here under my INTENSE

FRUSTRATION post were actually reiterated by his secretary when I spoke to her

on the telephone subsequently. Man oh man! See that? I knew there were more than

just feisty-flatbacker eyes looking at these posts.

Doesn't that make you feel weird to know he is not available on the telephone?

I mean really, I don't want his secretary knowing all of my business. Shouldn't

we have the right to doctor patient confidences? Oh well...I better stop. I feel

mah blood boiling. Never knew I was capable of being crabby.

xoxo's

[Guest guest]

Loriann,

I wish I'd had the presence of mind to have come back with something

like that at the time!

Dianne

> Dianne,

>

> I think the offer for you to email questions to his office was

pretty

> nice. I know some of us would LOVE to get written answers to our

> questions via email. But if you can wait until you see him, it's

> also nice to check out the doc's body language as they answer

> questions..... I would have found his comment about this site off-

> putting, too. I probably would have felt the need to give him a

> sarcastic come-back, something like " Now now, doctor, surely you

> know I value YOUR advice above all others..... "

>

> loriann

>

[Guest guest]

Hey ,

I think I need to clarify my previous post, I'd hate for you to get

into a crabby trend at this late date! I mentioned this board to

Rand and that he'd come highly recommended by many of the members

and even the x-rays he showed me were of a couple of members whose

posts I'd read on here. He said some patients had mentioned it to

him but that HE'D never actually read it. I'm surprised he acted

clueless, though, he certainly was made aware of its existence when

we spoke. Were you saying that you think his secretary reads this

board? I wasn't sure about that part of your post, though kudos to

her if she does, it could only foster greater understanding for the

patients. I agree about the middleman approach, the doc I see in RI

(Lucas) always calls me back when I have questions and really seems

to respect my quest for answers. I think it's funny when he calls me

back, it's always on his drive home from work at around 8 p.m., he

sounds EXHAUSTED and like he's in dire need of a stiff drink! I also

don't have to go through the hassle of requesting medication via

mail so many days before hand, Rand's material mentions that kind of

procedure. I'm sure the reasoning behind it is sound, but for a

procrastinator like me, what a drag!

All my best, Dianne

- In , USNAWIFE@a... wrote:

> Dianne,

> I am floored! When I mentioned this forum Rand acted surprised,

like he hadn't a clue we existed. Then a couple of things I typed on

here under my INTENSE FRUSTRATION post were actually reiterated by

his secretary when I spoke to her on the telephone subsequently. Man

oh man! See that? I knew there were more than just feisty-flatbacker

eyes looking at these posts.

> Doesn't that make you feel weird to know he is not available on

the telephone? I mean really, I don't want his secretary knowing all

of my business. Shouldn't we have the right to doctor patient

confidences? Oh well...I better stop. I feel mah blood boiling.

Never knew I was capable of being crabby.

> xoxo's

>

[Guest guest]

Dianne,

Yeah... it would be beneficial for HARMS/flatback docs to appoint somebody to

read this board. This spine stuff can take over one's life and really affect one

in more ways than just the spine.

Who knows, maybe Rand doesn't like to call his patients back because he is busy

reading the posts in here. hehehehe

juuuuuuuuuust kidding. Just bein' feisty I s'pose.

Is Dr. Lucas in Newport? I can't recall the docs name I saw in Newport, but he

was direct and to the point. Some might think that to be abrasive, but I like

straight talk from a doc.

PS I'm done bein' crabby.

[Guest guest]

Eeeeewww. , I agree, that seems kind of creepy and invasive. We love them

to take

an interest and offer information, but reading our posts, especially when we're

just trying

to express ourselves and commisserate and get some perspective? Not good. At the

very

least she should know better than to TELL you about it!

But in any case, maybe the fact that you have an audience when you're mistreated

will have

some kind of impact on the service. I don't think anyone here is being

irrepsonsible or

unfairly attacking their doctors or anything, nothing to be embarassed about..

Jean

> Dianne,

> I am floored! When I mentioned this forum Rand acted surprised, like he

hadn't a clue

we existed. Then a couple of things I typed on here under my INTENSE FRUSTRATION

post

were actually reiterated by his secretary when I spoke to her on the telephone

subsequently. Man oh man! See that? I knew there were more than just

feisty-flatbacker

eyes looking at these posts.

> Doesn't that make you feel weird to know he is not available on the

telephone? I mean

really, I don't want his secretary knowing all of my business. Shouldn't we have

the right to

doctor patient confidences? Oh well...I better stop. I feel mah blood boiling.

Never knew I

was capable of being crabby.

> xoxo's

>

[Guest guest]

Hi ,

Dr. Lucas is in Providence. He's got an excellent reputation and his

patient/doctor manner is surprisingly kind and human for an

orthopedist!

All my best, Dianne

> Dianne,

>

> Yeah... it would be beneficial for HARMS/flatback docs to appoint

somebody to read this board. This spine stuff can take over one's

life and really affect one in more ways than just the spine.

> Who knows, maybe Rand doesn't like to call his patients back

because he is busy reading the posts in here. hehehehe

> juuuuuuuuuust kidding. Just bein' feisty I s'pose.

> Is Dr. Lucas in Newport? I can't recall the docs name I saw in

Newport, but he was direct and to the point. Some might think that

to be abrasive, but I like straight talk from a doc.

>

>

> PS I'm done bein' crabby.

[Guest guest]

:

What? You have four children and back problems and YOU NEVER KNEW YOU

COULD BE CRABBY? Well, you get my vote for angel. Or saint. Or

something. Unless you've just been drinking a lot for years.

ly, I'm not sure that I'm capable of NOT being crabby.

Elissa

> Dianne,

> I am floored! When I mentioned this forum Rand acted surprised,

like he hadn't a clue we existed. Then a couple of things I typed on

here under my INTENSE FRUSTRATION post were actually reiterated by

his secretary when I spoke to her on the telephone subsequently. Man

oh man! See that? I knew there were more than just feisty-flatbacker

eyes looking at these posts.

> Doesn't that make you feel weird to know he is not available on

the telephone? I mean really, I don't want his secretary knowing all

of my business. Shouldn't we have the right to doctor patient

confidences? Oh well...I better stop. I feel mah blood boiling.

Never knew I was capable of being crabby.

> xoxo's

>

[Guest guest]

> - Elissa makes a very good point! I raise a glass to you!

> From: " ekm1220 " <elissajunk@...>

> Date: 2004/05/12 Wed PM 09:14:04 EDT

>

> Subject: Re: Catch-up posting

>

> :

>

> What? You have four children and back problems and YOU NEVER KNEW YOU

> COULD BE CRABBY? Well, you get my vote for angel. Or saint. Or

> something. Unless you've just been drinking a lot for years.

>

> ly, I'm not sure that I'm capable of NOT being crabby.

>

> Elissa

>

>

>

> > Dianne,

> > I am floored! When I mentioned this forum Rand acted surprised,

> like he hadn't a clue we existed. Then a couple of things I typed on

> here under my INTENSE FRUSTRATION post were actually reiterated by

> his secretary when I spoke to her on the telephone subsequently. Man

> oh man! See that? I knew there were more than just feisty-flatbacker

> eyes looking at these posts.

> > Doesn't that make you feel weird to know he is not available on

> the telephone? I mean really, I don't want his secretary knowing all

> of my business. Shouldn't we have the right to doctor patient

> confidences? Oh well...I better stop. I feel mah blood boiling.

> Never knew I was capable of being crabby.

> > xoxo's

> >

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

>

[Guest guest]

Well said.

These docs charge our insurance companies hundreds of dollars for just an

office visit. Then they prescribe meds and are unavailable on the tele

afterwards. That is like robbery in my eyes. So I don't feel any shame in

reporting my personal experience. We're all grown ups in here. If somebody wants

to learn from my experience, I consider that enabling. Maybe my conveying my

experience can prevent somebody else from going through it. Some people have

serious reactions to meds. The anti-inflammatory I was prescribed could have

caused stomach bleeding. It was Feldene and it's brutal for me. So I don't mind

being open about how things did or did not work for me. After all, I too learned

a few things from that whole frustrating ordeal. I'll never take prescription

meds from a doc ever again if he will not be available via telephone.

xoxo's

[Guest guest]

LOL Elissa,

I used to send my hubby out to sea for 6 months at a time too. Now that he is a

civilian I've been known to look in the mailbox for them 6 month floating orders

as they're referred to. LOL

I just rely on quilting for my mood swings. It's all in the cloth.

Elissa, have you been revised yet? Were you leaning forward?

xoxo's

[Guest guest]

Thanks ,

I'm thinking lately I should put a glass in my hand. I was really frustrated

and disappointed that past week and a half.

Oh well, things happen for a reason, right?

How 'bout your situation...were you leaned forward?

xoxo's

[Guest guest]

:

Per your question, I had my revision about 15 months ago, in

January/February 2003, at UCSF, with Dr. Serena Hu. I wasn't visibly

leaning forward enough that anyone who wasn't looking for a missing

lordosis would notice, and I was still relatively active, and my

knees and hips were fine, but I had been unable to sleep flat on my

back without wrenching, grinding pain that lasted for the rest of the

day since a few months after my first kid was born in 1998.

My reasons for going ahead with the revision while my kids were

little and I wasn't visibly disabled were as follows:

* It was either live in pain for several years, unable to travel

without those huge bed wedges, and then have a dreadful operation, or

go ahead and get the dreadful operation over with. My philosophy is

to go ahead and get the really dreadful stuff over with, since for

me, it's worse to have it hanging over my head for years than to just

get to the other side of it as quickly as possible. Plus, worrying

about revision made me completely nuts. I didn't want to spend

several years in a state of acute anxiety. It wasn't good for my

complexion.

* In my case, letting the condition progress to the point that I was

leaning over would cause further damage to my unfused disks, and it

seemed silly to intentionally inflict any more damage on L4-L5 and L5-

S1 than I already had. Also, I didn't want to wear out my knees and

hips anymore. For me, putting off the operation until I had no choice

would have done serious damage to joints that were still in

relatively good shape.

* If I'd waited any longer, I'd have had to have the operation while

my oldest was in " real " school instead of preschool, which is a less

supportive environment if a kid is going to act out, and not

concentrating in real school can cause you to actually not learn

something useful. And my youngest would have been old enough to

remember what had happened long after it was over. As it stands, my

son barely remembers how bad the first six months were, and while my

daughter had some problems at the time, she has no recollection at

all of my absence, my frightening state when I returned, the months

of non-stop vomiting (not a typical problem, don't worry), and the

temporary psychosis (bad mix of meds to stop the vomiting caused

disorientation and lunacy). My point? Oh, I guess it's that they were

old enough to walk on their own but young enough that they wouldn't

be carrying around the memory for the rest of their lives.

My outcomes are as follows:

* I can sleep anywhere, on anything, in any position, with no pain.

* During the day, my pain levels are as bad as they were pre-op

(mostly from permanent muscle spasms and the fact that I am unable to

sit and work in an ergonomically appropriate position, no matter how

hard I try) but I'm not doing any more damage to discs, hips, or

knees.

* Even with the daytime pain levels, I have that horrible operation

BEHIND me and I don't have anything big and scary on the horizon, so

I can kinda look forward to having a life for a while without a big

scary obstacle on the road.

[Guest guest]

So THAT'S why my face keeps breaking out!

[Guest guest]

,

That's good info to know. I was wondering how the leaning forward thing

progressed.

I had forgotten you had twins. That is too cute!!! Just think, you'll forever

have that memory of him giving himself his own 'do. (hairdo) LOL Maybe this is a

sign. Maybe he'll grow up to be one of those master landscapers for Disney.

He'll be cutting bushes in to shapes of Micky Mouse.

He was gearin' up for the wedding. LOL

xoxo's

[Guest guest]

:

Well, to tie together all my recent posts (post-revision biking and

pre-revision rationale), I have to say that my surgeon won't actually

let me go bungee jumping, so it's a perfectly great analogy but

probably nothing that we'll ever get to try in real life. Which is

good, because I'm abjectly terrified of bridges. Not so much of

heights, just bridges in particular. I freak out on the lamest

bridges -- the I10/Beltway 8 and 610/59 interchanges in Houston, a

totally wimpy bridge near Port , LA -- you name it, if it's a

bridge, I don't want to be on it. And yet, tall buildings? Mountains?

No sweat.

Anyway, it seems that you're not on the bridge yet -- you're still

thinking about getting on the bridge. Once you decide to jump, you'll

probably just go ahead and do it.

I digress. I shouldn't post after 10 PM.

> Elissa,

> That was excellent. I think I'm in the same boat as you were. I

just really don't want to cause permanent damage. Already, I have

some type of nerve damage in my left pinkie, it's immobile. I can

feel the pain stemming from my upper disc area.

> I, too, am going nuts just thinking about having the revision.

It's like bungie jumping. One climbs the tower, gets strapped in/on,

and then hesitates before jumping. The attendant tells the jumper not

to look down and not to think about it. One has already climbed the

steps and did the thinking prior, so just jump.

> I've never bungie jumped, but I think people who do it are

brave...or stupid. hahahaha Just kidding. It does take guts no matter

if I agree with bungee jumping or not.

> So for now, I'll keep gathering facts and personal experiences

with flatback. I'll think long and hard about it and then jump

later.

> Wheeeeeeeeeeee! Sorry...my humor is odd at times.

> OK, nap time. HOORAY!

> Thanks again for your post.

> xoxo's

>