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When I first had my surgery I had the same feeling. Things were not going

down well. I was told that it was probably a result of swelling and that as

things healed it would get better. They were right. As time passed things

progressed very nicely. Just take it easy. If your tired of the same old

stuff try a banana milk shake or some of the exotic soups. You will get

there. Just take it easy.

J.C.

Post surgery

> Hi everyone,

>

> I've still been doing OK post myotomy. For the most part feeling

> well, although yesterday was nauseaous and very tired almost all day.

>

> I was supposed to have my post-surgery follow up appointment

> yesterday afternoon but somehow they mis-scheduled it and I have to

> go back for it on Thursday.

>

> I've been eating liquids and very soft foods - mostly things like

> soup and juice and pudding and that kind of stuff. Yesterday though

> I thought I'd try something a little more solid - and had a few bites

> of some Chinese food (it was soft chicken and rice) that my mother

> had brought for her lunch - it just smelled and looked so good after

> days and days of liquids. Anyway, it didn't go down well at all -

> and that made me very panicky and very depressed like the surgery

> maybe won't make much difference.

>

> My surgery was Monday the 18th, so maybe its too soon to know. I

> can't tell how well the liquids are going down because they are

> harder to feel and I'm not eating much volume at one time. I know

> they are eventually getting down but how quick I don't know.

>

> Anyway, I was really bummed about it yesterday (plus with feeling

> sick all day) and wanted to ask those of you who have had myotomies -

> when did you first start to eat more solid foods? Did you have times

> early on when the food didn't go down but later on it did? Perhaps

> I'm jumping the gun. Although the doctor did say that my esophagus

> is very damaged. I'm not sure what to expect. Did I go through this

> whole thing to come out of it with the same problems? I guess it is

> at least somewhat better because before even liquids wouldn't go down

> without drinking a ton of water to force them down and that isn't the

> case now.

>

> I've lost about 10 pounds since having the surgery - which for me is

> a good thing, so I'm not terribly worried about that.

>

> Thanks-

>

>

>

>

>

>

>

>

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, I had my surgery March 7th (myotomy)and while I could tell

a difference right away when I swallowed liquids and soft foods, I

still had some difficulty swallowing. It continually improves

though. I had my post op exam yesterday and told the doctor about a

piece of soft meatloaf getting stuck the night before. (it is scary

and I can relate to everything you say) He said it's only been three

weeks and there is still some swelling from the surgery. I think we

are so scared that it won't work (the surgery)that we tend to make

ourselves feel worse. Anyway, that's what I think I do! I'm back to

work as of this Monday but I do still feel tired. It's going to take

time to get our energy back. I was really run down prior to

surgery. I lost 30 pounds this past year but I was over weight so

that's not a concern for me. Although, this isn't the best way to

lose weight. I'm now at a healthy weight and I feel 100% better than

I did four weeks ago. I sleep all night (no choking on slime) and I

don't throw up anymore!!! If having patience with swallowing food is

all I have to tend with, I'm still much better off. You know what, I

don't think I'll ever be the same as I was before A. I'm content

though. You're in my prayers. Keep in touch.

Judy

> When I first had my surgery I had the same feeling. Things were

not going

> down well. I was told that it was probably a result of swelling

and that as

> things healed it would get better. They were right. As time passed

things

> progressed very nicely. Just take it easy. If your tired of the

same old

> stuff try a banana milk shake or some of the exotic soups. You

will get

> there. Just take it easy.

>

> J.C.

> Post surgery

>

>

> > Hi everyone,

> >

> > I've still been doing OK post myotomy. For the most part feeling

> > well, although yesterday was nauseaous and very tired almost all

day.

> >

> > I was supposed to have my post-surgery follow up appointment

> > yesterday afternoon but somehow they mis-scheduled it and I have

to

> > go back for it on Thursday.

> >

> > I've been eating liquids and very soft foods - mostly things like

> > soup and juice and pudding and that kind of stuff. Yesterday

though

> > I thought I'd try something a little more solid - and had a few

bites

> > of some Chinese food (it was soft chicken and rice) that my mother

> > had brought for her lunch - it just smelled and looked so good

after

> > days and days of liquids. Anyway, it didn't go down well at all -

> > and that made me very panicky and very depressed like the surgery

> > maybe won't make much difference.

> >

> > My surgery was Monday the 18th, so maybe its too soon to know. I

> > can't tell how well the liquids are going down because they are

> > harder to feel and I'm not eating much volume at one time. I know

> > they are eventually getting down but how quick I don't know.

> >

> > Anyway, I was really bummed about it yesterday (plus with feeling

> > sick all day) and wanted to ask those of you who have had

myotomies -

> > when did you first start to eat more solid foods? Did you have

times

> > early on when the food didn't go down but later on it did?

Perhaps

> > I'm jumping the gun. Although the doctor did say that my

esophagus

> > is very damaged. I'm not sure what to expect. Did I go through

this

> > whole thing to come out of it with the same problems? I guess it

is

> > at least somewhat better because before even liquids wouldn't go

down

> > without drinking a ton of water to force them down and that isn't

the

> > case now.

> >

> > I've lost about 10 pounds since having the surgery - which for me

is

> > a good thing, so I'm not terribly worried about that.

> >

> > Thanks-

> >

> >

> >

> >

> >

> >

> >

> >

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Guest guest

Thanks Judy and J.C.

I'm sure you are both right - I'm telling myself not to panic and

just to relax and see how things progress.

Saw my surgeon today for my follow up and she said it takes time and

she can always take the wrap down if necessary (great, another

surgery - don't want to think about that at all). She's encouraging

me to eat some soft foods and see how it goes. She said definitely

don't use water to force it down though as it may cause esophageal

dilation or may prevent the esophagus from reducing its dilation,

which it should be doing (hopefully) since the procedure.

I feel a bit better about the whole thing. If I have to eat liquids

and soft foods for months, it will be worth it if my esophagus gets

better. Heck I'd be willing to be on a feeding tube if necessary!

I have to also say that I am sleeping just great at night and am

slowly reducing the elevation that I sleep at. So things are at

least better in that area so far. No coughing, choking, or gurgling

any more so far.

Thanks everyone for all the support!

> > When I first had my surgery I had the same feeling. Things were

> not going

> > down well. I was told that it was probably a result of swelling

> and that as

> > things healed it would get better. They were right. As time

passed

> things

> > progressed very nicely. Just take it easy. If your tired of the

> same old

> > stuff try a banana milk shake or some of the exotic soups. You

> will get

> > there. Just take it easy.

> >

> > J.C.

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  • 1 year later...
Guest guest

Hello Maggie,

Everyone's recovery experience differs, but it can range from very

mild to severe symptoms of dizziness, incision pain, numbness in the

incision site and maybe some facial numbness, sore throat (from the

breathing tube), nausea, neck pain and various other aches and pains.

Some sail through recovery feeling as if they could run a 100 yard

dash and others feel like death warmed over.

My sister required exactly one pain pill after she got home and she

only took that to assure herself a good nights sleep the first night

home. I on the other hand had pain in my ear, swollen glands and kind

of sense of being detached.. as if I was talking from a distance and

others were too. This lasted me about a week, but I didn't have any

nausea.

You can ask everyone on the forum for their first couple of days

after surgery experience, and I'd bet that over half would have

entirely different answers.

I know this wasn't a lot of help, but that's the way it goes

sometimes...There's no specific answer..LOL

Hugs,

Silly

In , maggielhs@a... wrote:

> After you have the surgery, how do you feel for the next few days?

Lots of

> pain? Dizziness? Do you feel lots better by day 3?

> Thank you

>

> " Happy hearts and happy faces, Happy play in grassy places -- That

was

> how, in ancient ages, Children grew to kings and sages. " -

Louis

> son

>

>

>

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Guest guest

Maggie,

I had a longer recovery than most it seems. I needed 4 days mostly in bed

but after that I was a bit slow but ok. I had no nausea except from the

strong antibiotics I had to take and no other post surgical symptoms worth

mentioning. After 10 days I felt completely like my old self again.

In a message dated 7/20/2003 11:52:54 AM Eastern Standard Time,

maggielhs@... writes:

> After you have the surgery, how do you feel for the next few days? Lots of

> pain? Dizziness? Do you feel lots better by day 3?

> Thank you

>

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  • 5 months later...

I don't have any words of wisdom but I sure would like to know who your

doc is, as i am scheduled for the 19th with Dr Farcy!

denisev569 wrote:

> I am three months post revision surgery. I kind of went into this

> not knowing what to expect and I think I am disappointed with the

> results to date. I just saw the doctor who did my revision surgery

> on Friday and he really didn't offer me much hope in things getting

> better. I am in extreme pain in my lower spine and it hurts terribly

> to walk, I am still walking with a cane and I can't stand up straight

> when I am standing or walking. Instead of my pre op symptoms being

> relieved I seem to have added to the problems by having this

> surgery. I had asked my doctor to sign papers allowing me to go on

> Long Term Disability for a couple of months from work and he told me

> that " I was giving up to easliy. " Since this is my fourth surgery

> and I have never given up and don't plan to give up now, I don't feel

> that this was a fair statement coming from him. I know that part of

> the problem is I am one of his younger patients that he has done

> revision surgery on and I think he expects more from me because of

> that. I hate to bring out any negative regarding this surgery

> because I have tried to remain very positive throughout it all, but I

> am starting to get very frustrated with the results. Does anyone

> have any words of wisdom to help me feel less frustrated?

>

>

>

>

> 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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Carol, I agree w/you 100%! This was the case w/my revision surgery! It was

supposed to take care of all of my problems, but as in many cases it was a

" mixed blessing. " Yes, it stopped the degeneration of my spine (I hope) in the

area

of the " break " and the pain radiating down my left leg, but that pain was

replaced by increased muscle and nerve pain that is in the mid back that is

chronic and intense that nothing relieves. Dr. LaGrone did not try to play " god "

and block my application for SSD. It is incredible that on top of the ordeal of

surgery and the grief and loss of one's career, the impact of this whole

process on ones life, health and family, that doctors and insurance companies

would

literally add to the pain.

I don't think it is a disgrace of any kind to be on disability and I don't

consider myself dis-abled in the sense of being " less than " anybody else on this

earth, not even a high powered doctor or his office manager or some insurance

company hack or social security worker. Labels are just labels, period.

People should not be put through any more suffering than is humanly necessary in

a

situation like this kind of surgery. Not by doctors, their staff, the

insurance companies, and not by social security. We worked so we have paid our

dues. I

didn't want to stop working and in some sense I haven't, certainly not by

choice. I still volunteer so I'm working for free! It is absolutely insane for

some doctor to judge another's pain, particularly when he is supposed to be the

very person who best understands your pain. And he least understands it. It is

incredible how we have to be our own advocates w/every doctor, the insurance

company, social security, you name it, it's up to us...sometimes I feel like

I'm doing their job for them and should be paid!

I'll get off my soapbox now. , I know you won't give up! You have all

of us behind you...Jennie (w/her boxing gloves on in Texas)

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, I'm really sorry to hear of your outcome. I haven't been through

revision surgery, but 3 months isn't very long, and I don't see how you could be

completely healed so soon. I'm sure others have said that they improved after

the 3 month mark. I do agree that your doctor's comment that you're giving up

too easily was inappropriate under the circumstances. I also suspect he

misunderstood that you only intended to go on disability for a couple of months.

I think you might want to try spelling this out and re-submitting your request

by mail (on the assumption that he was too rushed during the appointment to

listen attentively).

My best advice to you is to get under the care of a pain control specialist (if

you are not already). And PLEASE tell us the name of your revision surgeon.

Those of us who haven't yet had revision need to know!

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Post Surgery

I am three months post revision surgery. I kind of went into this

not knowing what to expect and I think I am disappointed with the

results to date. I just saw the doctor who did my revision surgery

on Friday and he really didn't offer me much hope in things getting

better. I am in extreme pain in my lower spine and it hurts terribly

to walk, I am still walking with a cane and I can't stand up straight

when I am standing or walking. Instead of my pre op symptoms being

relieved I seem to have added to the problems by having this

surgery. I had asked my doctor to sign papers allowing me to go on

Long Term Disability for a couple of months from work and he told me

that " I was giving up to easliy. " Since this is my fourth surgery

and I have never given up and don't plan to give up now, I don't feel

that this was a fair statement coming from him. I know that part of

the problem is I am one of his younger patients that he has done

revision surgery on and I think he expects more from me because of

that. I hate to bring out any negative regarding this surgery

because I have tried to remain very positive throughout it all, but I

am starting to get very frustrated with the results. Does anyone

have any words of wisdom to help me feel less frustrated?

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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Hi ,I agree with Sharon, 3 months is not that long. Please tell us more

about your situation. After my first few surgeries, my surgeon cut me off from

pain meds very early and told me " to rough with over-the-counter " , and I did. He

was always discouraging about staying on disability and even Home Care and a

hospital bed when I was discharged. As a result, I healed faster and returned to

work for another 6 yrs. When I had a problem again, he judged how bad it was by

how many times I came back telling him the severity of the problem. This time

when there was a problem, he referred me to a revision specialist that could

handle the problem according to what I was able to describe to him. No Doctor

wants to admit that it didn't work, he will help you get through it if he can. I

found too, it also helps to put requests in writing or at least send a written

fax, so you can say it the way you want and edit it and have proof of when it

was requested. Jan

From: Sharon Green [mailto: sharon.green18@...]To:

@...: Mon, 5 Jan 2004 15:28:57

-0500Subject: Re: Post Surgery, I'm really sorry to hear

of your outcome. I haven't been through revision surgery, but 3 months isn't

very long, and I don't see how you could be completely healed so soon. I'm sure

others have said that they improved after the 3 month mark. I do agree that your

doctor's comment that you're giving up too easily was inappropriate under the

circumstances. I also suspect he misunderstood that you only intended to go on

disability for a couple of months. I think you might want to try spelling this

out and re-submitting your request by mail (on the assumption that he was too

rushed during the appointment to listen attentively).My best advice to you is to

get under the care of a pain control specialist (if you are not already). And

PLEASE tell us the name of your revision surgeon. Those of us who haven't yet

had revision need to know!Sharon in Southern New HampshireCongenital scoliosis

w/ spina bifida and other vertebral anomalies1971 Harrington rod fusion, T5-L4,

flatback, L5-S1 degeneration, etc. Post SurgeryI am three months post revision surgery.

I kind of went into this not knowing what to expect and I think I am

disappointed with the results to date. I just saw the doctor who did my revision

surgery on Friday and he really didn't offer me much hope in things getting

better. I am in extreme pain in my lower spine and it hurts terribly to walk, I

am still walking with a cane and I can't stand up straight when I am standing or

walking. Instead of my pre op symptoms being relieved I seem to have added to

the problems by having this surgery. I had asked my doctor to sign papers

allowing me to go on Long Term Disability for a couple of months from work and

he told me that " I was giving up to easliy. " Since this is my fourth surgery and

I have never given up and don't plan to give up now, I don't feel that this was

a fair statement coming from him. I know that part of the problem is I am one of

his younger patients that he has done revision surgery on and I think he expects

more from me because of that. I hate to bring out any negative regarding this

surgery because I have tried to remain very positive throughout it all, but I am

starting to get very frustrated with the results. Does anyone have any words of

wisdom to help me feel less frustrated? 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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Hi, :

I'm about a year post-revision, and my own experience is that at

three months, I was still wrecked. It wasn't as bad as the first

eight weeks, when the non-stop pain drove me to distraction, but it

was still impossible for me to contemplate doing much of anything at

all. I was able to return to work part-time because I work out of my

home, but I am lucky to be in that unique situation. If I had a

different kind of job, I would certainly have had to remain on

disability.

To deal with the post-op pain at three months (as well as now), I

went to a pain management clinic. My orthopedist is an amazing

surgeon (Serena Hu) but trying to get pain help through her office

was really a matter of her nurse coordinator getting recommendations

from the overworked, inaccessible post-op pain doc at the hospital,

and phoning it into my pharmacy under the surgeon's name. I doubt

the surgeon had anything to do with it, and I really wanted someone

to take the pain issue seriously.

If it's at all possible for you to get into a pain management

clinic, I strongly recommend it, as " how to get pain under control "

is the only thing that they think about.

Also, as noted previously, three months is still really, really

early. I barely felt human then, although others report that they

went back to work and dropped their drugs by then. At a year, I'm

still medicated, though my life is significantly more normal than it

was three and four months post-op. For me, the major flatback

symptom--inability to lay flat on my back or stomach without

screeching pain--was relieved immediately after surgery, and I'm not

blowing out my unfused disks anymore, but it certainly hasn't fixed

the muscle pain, and it introduced some new kinds of skeletal pain

whose causes I haven't yet fully investigated in hopes that it'll

just go away.

Would you mind sharing with us who performed your surgery? (Sorry if

you already did but I've lost track.)

Best wishes,

Elissa

> I am three months post revision surgery. I kind of went into this

> not knowing what to expect and I think I am disappointed with the

> results to date. I just saw the doctor who did my revision

surgery

> on Friday and he really didn't offer me much hope in things

getting

> better. I am in extreme pain in my lower spine and it hurts

terribly

> to walk, I am still walking with a cane and I can't stand up

straight

> when I am standing or walking. Instead of my pre op symptoms

being

> relieved I seem to have added to the problems by having this

> surgery. I had asked my doctor to sign papers allowing me to go

on

> Long Term Disability for a couple of months from work and he told

me

> that " I was giving up to easliy. " Since this is my fourth surgery

> and I have never given up and don't plan to give up now, I don't

feel

> that this was a fair statement coming from him. I know that part

of

> the problem is I am one of his younger patients that he has done

> revision surgery on and I think he expects more from me because of

> that. I hate to bring out any negative regarding this surgery

> because I have tried to remain very positive throughout it all,

but I

> am starting to get very frustrated with the results. Does anyone

> have any words of wisdom to help me feel less frustrated?

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Letter from ... " Instead of my pre op symptoms being

> relieved I seem to have added to the problems by having this

> surgery. I had asked my doctor to sign papers allowing me to go on

> Long Term Disability for a couple of months from work and he told me

> that " I was giving up to easliy. "

Excuse me for venting but...????? THIS just makes me crazy that the Doc

is reluctant to sign her papers for disability. Is he stark raving

mad???? This is a terrible condition.,.that NEVER goes away, and a kick

butt surgery that is not only difficult to recuperate from, but often

causes new or different pain and disability than you went in with. We all

have gone through Hell and High Water with this horrendous condition.

Scoliosis/revision/ pain/ disability and multiple surgeries. And this

will go on throughout our life. How could a Doctor dare to not to

consider signing disability papers for this. ????? I just can't help

being amazed and angered at the medical community/and the courts

regarding the pain levels and disability that we deal with every day. I

am amazed at their ignorance. Argh!!!! Even people with minor anxiety

problems get to go on disability. Often they have no where near the

issues that we go through.....Psychological, chronic pain and disability

wise. For Gods sake why can't they cut us a break. Our Government takes

better care of the illegal alien population here in the U.S. than they do

for citizens who desperately need the help. ! AHHHH. It just makes me

want to scream sometimes.............Carol

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Don't worry, it wasn't with Dr. Farcy. I was in Minneapolis for my

surgery.

>

> > I am three months post revision surgery. I kind of went into this

> > not knowing what to expect and I think I am disappointed with the

> > results to date. I just saw the doctor who did my revision

surgery

> > on Friday and he really didn't offer me much hope in things

getting

> > better. I am in extreme pain in my lower spine and it hurts

terribly

> > to walk, I am still walking with a cane and I can't stand up

straight

> > when I am standing or walking. Instead of my pre op symptoms

being

> > relieved I seem to have added to the problems by having this

> > surgery. I had asked my doctor to sign papers allowing me to go

on

> > Long Term Disability for a couple of months from work and he told

me

> > that " I was giving up to easliy. " Since this is my fourth surgery

> > and I have never given up and don't plan to give up now, I don't

feel

> > that this was a fair statement coming from him. I know that part

of

> > the problem is I am one of his younger patients that he has done

> > revision surgery on and I think he expects more from me because of

> > that. I hate to bring out any negative regarding this surgery

> > because I have tried to remain very positive throughout it all,

but I

> > am starting to get very frustrated with the results. Does anyone

> > have any words of wisdom to help me feel less frustrated?

> >

> >

> >

> >

> > 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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I had my revision surgery with Dr. Perra at the Twin Cities Spine

Center. Since this is my fourth surgery maybe I am just expecting to

much to soon. A body can only take so much before it gets wore out.

> , I'm really sorry to hear of your outcome. I haven't been

through revision surgery, but 3 months isn't very long, and I don't

see how you could be completely healed so soon. I'm sure others have

said that they improved after the 3 month mark. I do agree that your

doctor's comment that you're giving up too easily was inappropriate

under the circumstances. I also suspect he misunderstood that you

only intended to go on disability for a couple of months. I think

you might want to try spelling this out and re-submitting your

request by mail (on the assumption that he was too rushed during the

appointment to listen attentively).

>

> My best advice to you is to get under the care of a pain control

specialist (if you are not already). And PLEASE tell us the name of

your revision surgeon. Those of us who haven't yet had revision need

to know!

>

>

> Sharon in Southern New Hampshire

>

> Congenital scoliosis w/ spina bifida and other vertebral anomalies

>

> 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration,

etc.

> Post Surgery

>

>

> I am three months post revision surgery. I kind of went into

this

> not knowing what to expect and I think I am disappointed with the

> results to date. I just saw the doctor who did my revision

surgery

> on Friday and he really didn't offer me much hope in things

getting

> better. I am in extreme pain in my lower spine and it hurts

terribly

> to walk, I am still walking with a cane and I can't stand up

straight

> when I am standing or walking. Instead of my pre op symptoms

being

> relieved I seem to have added to the problems by having this

> surgery. I had asked my doctor to sign papers allowing me to go

on

> Long Term Disability for a couple of months from work and he told

me

> that " I was giving up to easliy. " Since this is my fourth

surgery

> and I have never given up and don't plan to give up now, I don't

feel

> that this was a fair statement coming from him. I know that part

of

> the problem is I am one of his younger patients that he has done

> revision surgery on and I think he expects more from me because

of

> that. I hate to bring out any negative regarding this surgery

> because I have tried to remain very positive throughout it all,

but I

> am starting to get very frustrated with the results. Does anyone

> have any words of wisdom to help me feel less frustrated?

>

>

>

>

> 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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I really don't know much about my first surgery, I was 2 1/2 when

they did it. I don't think my mom knows much about it either, what

she has told me is when I was born the pediatrician who examined me

noted some abnormal growths along my spine and tail bone, they didn't

do any x-rays until I was older and at that time found the scoliosis

but were not sure what they were going to do about it. The surgery

they did when I was 2 1/2 was to remove the growths but no fusion

took place at that time. When I was 10 they put me in a milwaukee

brace for 5 1/2 years and then did surgery with harrington rods and

fusion from T1 to L3, a couple of years later the harrington rod

broke loose from my left hip and had to be removed. Six months to

the day after that surgery I had a car accident that was pretty

traumatic, hip fractures, facial fractures and wrist fractures but I

was assured my back and spine was fine. Two years later my daughter

was born and I was having a lot of problems with my back. I saw a

surgeon when she was three months old and he immediately wanted to do

some kind of surgery, since my daughter was so young I was afraid to

have any kind of surgery at that time and kept putting it off until

this past September, my daugther just turned 9. During this past

surgery it was found that my orginal fusions either did not heal

correctly or had wore away, it appeard as though L3 and L2 had never

been fused. During this last surgery they fused/refused T12 to S1.

This was supposed to help with the leg length issue I was having, my

left leg slowly lost 1/8 " every six months to a year and I was at

5/8 " difference between my left and right leg. Right out of surgery

the problem was corrected but now we have found I have a 1/4 "

difference again. Not that I hold it against the doctor in any way,

he had told me that he wasn't sure if he could fix that problem, it

just concerns me that it was resolved and now it is coming back so

quickly.

I'm sorry but I don't even know what osteotomies are, so I am

thinking I probably haven't had any done. I did work right up until

I had surgery, I am a single mom and have no other income, if I did

have help I would have probably not worked as much as I did. I did

have my medical insurance blessed 18 visits with a Physical Therapist

after surgery. My insurance only allows 18 visits within the first

six months after surgery and I used them all up with six weeks. The

insurance wont cover any more. I can do the exercises at home but it

is nice to have someone there to work the sore spots and measure how

well you are doing. My Physical Therapist has been a huge advocate

towards me spending more time at home resting, he is really a great

guy and very understanding towards my situation. I did return to

work six weeks after surgery but that was because I was out of PTO

and Short Term Disability and wouldn't be getting a paycheck if I

didn't. I really didn't feel like I should have been working but

with the medical bills coming in and the thought of no paycheck I had

to give it a try.

This is the first surgery this doctor has performed on me. The

doctor who did my last three lost his license to practice shortly

after my daughter was born and no other doctor in the area would come

near me out of fear that I was looking to file a law suit. That was

a pretty aggravating time for me, that is why I ended up having to go

to Minneapolis for surgery.

I hope I answered all of your questions. Thank you for your input,

it has helped me to feel better.

> > I am three months post revision surgery. I kind of went into

this

> > not knowing what to expect and I think I am disappointed with the

> > results to date. I just saw the doctor who did my revision

surgery

> > on Friday and he really didn't offer me much hope in things

getting

> > better. I am in extreme pain in my lower spine and it hurts

> terribly

> > to walk, I am still walking with a cane and I can't stand up

> straight

> > when I am standing or walking. Instead of my pre op symptoms

being

> > relieved I seem to have added to the problems by having this

> > surgery. I had asked my doctor to sign papers allowing me to go

on

> > Long Term Disability for a couple of months from work and he told

> me

> > that " I was giving up to easliy. " Since this is my fourth

surgery

> > and I have never given up and don't plan to give up now, I don't

> feel

> > that this was a fair statement coming from him. I know that part

> of

> > the problem is I am one of his younger patients that he has done

> > revision surgery on and I think he expects more from me because

of

> > that. I hate to bring out any negative regarding this surgery

> > because I have tried to remain very positive throughout it all,

but

> I

> > am starting to get very frustrated with the results. Does anyone

> > have any words of wisdom to help me feel less frustrated?

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You gals are simply the greatest! Can I take you with me to my next

appointment with this doctor?? If I could get him to understand what

is going on as well as all of you do I think I wouldn't have anything

to worry about.

Thank you all for your feedback, I am feeling stronger and better and

less insecure about my situation. I was starting to feel a little

guilty that maybe I was making more out of my situation than it was,

but hearing from all of you just lets me know that it is OK to feel

the way I feel and I appreciate that more than you will ever know.

> And I'm here in Chicago putting on my own boxing gloves to jump in

the fray.

>

> Right on, Jennie.

>

> I am so glad you said it.

>

> , I can't sit so long right now --wow, seems a bunch of us

are saying that lately! -- but please know from these brief words

that my thoughts are with you, as is my outrage, and I second

everything Jennie said 100 percent.

>

>

> Re: Post Surgery

>

>

> Carol, I agree w/you 100%! This was the case w/my revision

surgery! It was

> supposed to take care of all of my problems, but as in many cases

it was a

> " mixed blessing. " Yes, it stopped the degeneration of my spine (I

hope) in the area

> of the " break " and the pain radiating down my left leg, but that

pain was

> replaced by increased muscle and nerve pain that is in the mid

back that is

> chronic and intense that nothing relieves. Dr. LaGrone did not

try to play " god "

> and block my application for SSD. It is incredible that on top of

the ordeal of

> surgery and the grief and loss of one's career, the impact of

this whole

> process on ones life, health and family, that doctors and

insurance companies would

> literally add to the pain.

>

> I don't think it is a disgrace of any kind to be on disability

and I don't

> consider myself dis-abled in the sense of being " less than "

anybody else on this

> earth, not even a high powered doctor or his office manager or

some insurance

> company hack or social security worker. Labels are just labels,

period.

> People should not be put through any more suffering than is

humanly necessary in a

> situation like this kind of surgery. Not by doctors, their staff,

the

> insurance companies, and not by social security. We worked so we

have paid our dues. I

> didn't want to stop working and in some sense I haven't,

certainly not by

> choice. I still volunteer so I'm working for free! It is

absolutely insane for

> some doctor to judge another's pain, particularly when he is

supposed to be the

> very person who best understands your pain. And he least

understands it. It is

> incredible how we have to be our own advocates w/every doctor,

the insurance

> company, social security, you name it, it's up to us...sometimes

I feel like

> I'm doing their job for them and should be paid!

>

> I'll get off my soapbox now. , I know you won't give up!

You have all

> of us behind you...Jennie (w/her boxing gloves on in Texas)

>

>

>

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You know, , I wonder if we have something in common. I am definitely

much older than you. However, I wonder if that makes any difference here. I

have always maintained that my scoliosis is from trauma, when I surely broke my

back. But, when I read your post, it brought back so many memories of my

early days! First of all, I had abnormalities around the base of my spine.

When

I was about 4, I clearly remember being held down on a table while a hot rod

was applied to the base of my spine. I did learn that that was to " get rid

of " extra pieces of flesh (?) etc. All of the time I was growing up, I had a

problem with a " cyst " on the base of my spine, which was awfully painful. For

my 19th birthday I had the pleasure of undergoing surgery which was charted as

a " pilonidal cyst " , plus hemorrhoidectomy. Was I a mess! In the meantime, I

had suffered an accident at about 12 years of age which I later learned was a

fracture of my spine. What I am so curious about is whether there is some way

in which all of these events relate to one another. What do you think? Is

this in any way similar to your recollections?

Thanks!

Carole (the older one)

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You know, , I wonder if we have something in common. I am definitely

much older than you. However, I wonder if that makes any difference here. I

have always maintained that my scoliosis is from trauma, when I surely broke my

back. But, when I read your post, it brought back so many memories of my

early days! First of all, I had abnormalities around the base of my spine.

When

I was about 4, I clearly remember being held down on a table while a hot rod

was applied to the base of my spine. I did learn that that was to " get rid

of " extra pieces of flesh (?) etc. All of the time I was growing up, I had a

problem with a " cyst " on the base of my spine, which was awfully painful. For

my 19th birthday I had the pleasure of undergoing surgery which was charted as

a " pilonidal cyst " , plus hemorrhoidectomy. Was I a mess! In the meantime, I

had suffered an accident at about 12 years of age which I later learned was a

fracture of my spine. What I am so curious about is whether there is some way

in which all of these events relate to one another. What do you think? Is

this in any way similar to your recollections?

Thanks!

Carole (the older one)

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You know, , I wonder if we have something in common. I am definitely

much older than you. However, I wonder if that makes any difference here. I

have always maintained that my scoliosis is from trauma, when I surely broke my

back. But, when I read your post, it brought back so many memories of my

early days! First of all, I had abnormalities around the base of my spine.

When

I was about 4, I clearly remember being held down on a table while a hot rod

was applied to the base of my spine. I did learn that that was to " get rid

of " extra pieces of flesh (?) etc. All of the time I was growing up, I had a

problem with a " cyst " on the base of my spine, which was awfully painful. For

my 19th birthday I had the pleasure of undergoing surgery which was charted as

a " pilonidal cyst " , plus hemorrhoidectomy. Was I a mess! In the meantime, I

had suffered an accident at about 12 years of age which I later learned was a

fracture of my spine. What I am so curious about is whether there is some way

in which all of these events relate to one another. What do you think? Is

this in any way similar to your recollections?

Thanks!

Carole (the older one)

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You know, , I wonder of we have something in common. Although I have

failed every test that would have made my scoliosis " idiopathic " , and I do

believe it is not, I do have some weird memories of my early days! When I was

about 4 I remember being held down on a table while a hot rod was applied to the

base of my spine. I learned that was done to get rid of " extra pieces of

flesh " ?. I always had problems with a " cyst " on my spine. It was so painful

that

I can still remember it. For my 19th birthday, I had the pleasure of

undergoing surgery which was called " pilonidal cyst plus hemorrhoidectomy " . Was

I a

mess! In the meantime, I had suffered an accident at about 12 years of age

which I later learned was a fracture of my spine. What I am so curious about is

whether there is some way that these events relate to one another. What do

you think?

Thanks!

Carole (the older one)

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You know, , I wonder of we have something in common. Although I have

failed every test that would have made my scoliosis " idiopathic " , and I do

believe it is not, I do have some weird memories of my early days! When I was

about 4 I remember being held down on a table while a hot rod was applied to the

base of my spine. I learned that was done to get rid of " extra pieces of

flesh " ?. I always had problems with a " cyst " on my spine. It was so painful

that

I can still remember it. For my 19th birthday, I had the pleasure of

undergoing surgery which was called " pilonidal cyst plus hemorrhoidectomy " . Was

I a

mess! In the meantime, I had suffered an accident at about 12 years of age

which I later learned was a fracture of my spine. What I am so curious about is

whether there is some way that these events relate to one another. What do

you think?

Thanks!

Carole (the older one)

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Thank you for sharing that, . Just curious; has your scoliosis ever been

described as congenital? (literally " born with " , the term describes an abnormal

side-to-side curvature which is caused by abnormally developed vertebrae.

That's what I have.) At any rate, it certainly sounds like a complicated,

unusual case.

Sharon

Re: Post Surgery

I really don't know much about my first surgery, I was 2 1/2 when

they did it. I don't think my mom knows much about it either, what

she has told me is when I was born the pediatrician who examined me

noted some abnormal growths along my spine and tail bone, they didn't

do any x-rays until I was older and at that time found the scoliosis

but were not sure what they were going to do about it. The surgery

they did when I was 2 1/2 was to remove the growths but no fusion

took place at that time. When I was 10 they put me in a milwaukee

brace for 5 1/2 years and then did surgery with harrington rods and

fusion from T1 to L3, a couple of years later the harrington rod

broke loose from my left hip and had to be removed. Six months to

the day after that surgery I had a car accident that was pretty

traumatic, hip fractures, facial fractures and wrist fractures but I

was assured my back and spine was fine. Two years later my daughter

was born and I was having a lot of problems with my back. I saw a

surgeon when she was three months old and he immediately wanted to do

some kind of surgery, since my daughter was so young I was afraid to

have any kind of surgery at that time and kept putting it off until

this past September, my daugther just turned 9. During this past

surgery it was found that my orginal fusions either did not heal

correctly or had wore away, it appeard as though L3 and L2 had never

been fused. During this last surgery they fused/refused T12 to S1.

This was supposed to help with the leg length issue I was having, my

left leg slowly lost 1/8 " every six months to a year and I was at

5/8 " difference between my left and right leg. Right out of surgery

the problem was corrected but now we have found I have a 1/4 "

difference again. Not that I hold it against the doctor in any way,

he had told me that he wasn't sure if he could fix that problem, it

just concerns me that it was resolved and now it is coming back so

quickly.

I'm sorry but I don't even know what osteotomies are, so I am

thinking I probably haven't had any done. I did work right up until

I had surgery, I am a single mom and have no other income, if I did

have help I would have probably not worked as much as I did. I did

have my medical insurance blessed 18 visits with a Physical Therapist

after surgery. My insurance only allows 18 visits within the first

six months after surgery and I used them all up with six weeks. The

insurance wont cover any more. I can do the exercises at home but it

is nice to have someone there to work the sore spots and measure how

well you are doing. My Physical Therapist has been a huge advocate

towards me spending more time at home resting, he is really a great

guy and very understanding towards my situation. I did return to

work six weeks after surgery but that was because I was out of PTO

and Short Term Disability and wouldn't be getting a paycheck if I

didn't. I really didn't feel like I should have been working but

with the medical bills coming in and the thought of no paycheck I had

to give it a try.

This is the first surgery this doctor has performed on me. The

doctor who did my last three lost his license to practice shortly

after my daughter was born and no other doctor in the area would come

near me out of fear that I was looking to file a law suit. That was

a pretty aggravating time for me, that is why I ended up having to go

to Minneapolis for surgery.

I hope I answered all of your questions. Thank you for your input,

it has helped me to feel better.

> > I am three months post revision surgery. I kind of went into

this

> > not knowing what to expect and I think I am disappointed with the

> > results to date. I just saw the doctor who did my revision

surgery

> > on Friday and he really didn't offer me much hope in things

getting

> > better. I am in extreme pain in my lower spine and it hurts

> terribly

> > to walk, I am still walking with a cane and I can't stand up

> straight

> > when I am standing or walking. Instead of my pre op symptoms

being

> > relieved I seem to have added to the problems by having this

> > surgery. I had asked my doctor to sign papers allowing me to go

on

> > Long Term Disability for a couple of months from work and he told

> me

> > that " I was giving up to easliy. " Since this is my fourth

surgery

> > and I have never given up and don't plan to give up now, I don't

> feel

> > that this was a fair statement coming from him. I know that part

> of

> > the problem is I am one of his younger patients that he has done

> > revision surgery on and I think he expects more from me because

of

> > that. I hate to bring out any negative regarding this surgery

> > because I have tried to remain very positive throughout it all,

but

> I

> > am starting to get very frustrated with the results. Does anyone

> > have any words of wisdom to help me feel less frustrated?

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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Very interesting! I never knew the spelling of " pilonidal " , and was unable to

look it up, but I just did.

I have a " sinus " just below my tailbone, which was referred o as a " pilonidal

sinus " , and is part of my birth defect, which includes an apparent occult spina

bifida and a lipoma (fatty lump) over my messed-up thoraco-lumbar junction.

Also a red birthmark in the sacral area.

http://www.emedicine.com/emerg/topic771.htm

After reading the above-sited article, I do wonder about the accuracy of the

" pilonidal " adjective, as I have read that dimples or sinuses in the skin

covering the spine are common markers for spina bifida, and mine has always been

asymptomatic (though I was told as a child I should always be careful to keep it

clean.)

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Re: Re: Post Surgery

You know, , I wonder if we have something in common. I am definitely

much older than you. However, I wonder if that makes any difference here. I

have always maintained that my scoliosis is from trauma, when I surely broke

my

back. But, when I read your post, it brought back so many memories of my

early days! First of all, I had abnormalities around the base of my spine.

When

I was about 4, I clearly remember being held down on a table while a hot rod

was applied to the base of my spine. I did learn that that was to " get rid

of " extra pieces of flesh (?) etc. All of the time I was growing up, I had a

problem with a " cyst " on the base of my spine, which was awfully painful. For

my 19th birthday I had the pleasure of undergoing surgery which was charted as

a " pilonidal cyst " , plus hemorrhoidectomy. Was I a mess! In the meantime, I

had suffered an accident at about 12 years of age which I later learned was a

fracture of my spine. What I am so curious about is whether there is some way

in which all of these events relate to one another. What do you think? Is

this in any way similar to your recollections?

Thanks!

Carole (the older one)

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Hi Sharon. My Dad had a Pilonidal cyst too. He had surgery for it and was

layed up for a while.. It kept him out of some parts of World War 2

Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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Maybe that cyst kept your dad alive. You never know. Mine was kept out of the

war because of his scoliosis. Survival of the unfittest!

Re: Re: Post Surgery

Hi Sharon. My Dad had a Pilonidal cyst too. He had surgery for it and was

layed up for a while.. It kept him out of some parts of World War 2

Carol

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

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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Sharon,

That is so weird! Of course, the fact that I was born in the dark ages

probably has something to do with my diagnosis! But, I've always been

" different " !

Had diseases my siblings didn't have, etc. It all is awfully interesting,

though! Thanks for your comments. And, did I really spell it right? WOW!

Sincerely,

Carole

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