surgery

[Guest guest]

I want to thank everyone for your responses. I feel more confident in the

doctor's wishes to just fuse the thoracic portion of her spine and not the

entire spine. I appreciate everyone's input.

Thanks,

Peggy Greene

Osteoporosis - Dx @ 33, Fosamax for 8 years

Fibromyalgia - Zyprexa for sleep, massage therapy for pain

Severe Degenerative Disc Disease - cervical and lumbar spine

Scoliosis - Harrington rod fusion @ age 12 from T3-L3

12-year old daughter with scoliosis wearing Boston brace due to have surgery

June 2004

Flatback Syndrome

Restrictive Lung Disease

Hypothyroidism

Allergies

GERD

MVP

Dear Peggy,

With your health history I can understand why you might think it best to

fuse the entire spine, but I need to agree with the other posters and your

daughter's surgeon.

He is taking a conservative approach and with the low degree of lumbar curve

it is wise-in my non-medically trained opinion. This is one case where more

is not better. Why? Because most of the motion in the spine/hips is in the

lumbar spine-so if possible it should be spared. And at her young age keeping

motion is important for sports, dancing, and (not trying to offend) let's say,

martial bless.

If you look at a sketelon you'll see the ribs coming out at a different angle

in the lumbar because they have so much more ability to move. And there is

something about nerves that make the lumbar area more painful. (Don't know if

there is more of them or nerve endings or nerve roots are there) If the lumbar

degree is compensatory, it may straighten out a lot. And at 38 degrees it may

well straighten out to not be noticeable, never progress, or never be

painful. Certainly that is the surgeon's goal and it is statistically

conceivable.

You wrote: " afraid just fusing the thoracic curve will not gain enough

correction and

certainly won't correct the rib hump and rotation. "

If I get the meaning of your comment, as I understand it having a thorospathy

(sp???) (a rib resection) would greatly correct the rib hump. If that is a

great concern to your daughter or yourself you should discuss it with the

surgeon.

Haven't I heard that many surgeons are doing an anterior as well as a

posterior fusion

now for stability. Did the surgeon mention doing both?

I hope we've helped reassured you on the thoracic fusion only.

Jolene 1960 thoracic fusion with donor bone only, now needing total t-1 to

L-5, but happy it wasn't done in 1960.

[Guest guest]

Have you tried any of the remedies suggested on this group for the chest pains?

Please list the medications/supplements you have tried, so we don't re-recommend things you've already tried.

Debbi in Michigan

I HAD THE SURGERY TWO MONTHS AGO. I have had some problems,,my problems seem to be with pain un my chest,,why? My doctor did this surgery yrs ago, and new alot about this,,,but why the chest pain still??My stomach is little after the surgery,,and have lost weight..Just hate the pain in my chest,,no rice, things like that it hurts to go down..Had a barium swallow and liquid went down but the little marshmellows floated back up>

[Guest guest]

In a message dated 5/13/2004 4:47:45 PM Eastern Daylight Time, arabiankay@... writes:

...Had a barium swallow and liquid went down but the little marshmellows floated back up>

Ummmmmmmm, just wondering, what do you mean by this?

Did they give you a barium hot chocolate with little barium marshmellows?

Just curious-

Jan in Northern KY

[Guest guest]

Arabiankay,

Prehaps you are having spasms - which can be common after surgery, sometimes lasting

a few months and often mimicking chest pain. Or it may be just the after effects of surgery and the body

needs time to heal. Try Nifidepine for the chest pain if your MD ok's it. Make sure it

is in the capsule form with liquid in it - you can cut the tip off the capsule and swallow the liquid.

It usually helps spasms pretty quickly. Because the stomach is smaller initially, you

should eat smaller amounts but more frequently in the first few months. Rice and Breads have always been difficult for me to get down even with surgery. I have to drink lots of water. Try soft for awhile and

see what foods agree with you and which ones don't. As you increase your diet to include more

foods see which foods you tolerate better and stay away from the ones you don't for awhile.

Then try them again and see if you do better as time goes on. This surgery is not a cure but does

help tremendously.

I hope it is just a matter of recovery for you and with patience you should do well. Keep

communicating with your MD and if things are not improving then you should be

letting him know what your symptoms are.

Bobbie

[Guest guest]

Hi, Bettymobile:

I had revision in January/February 2003, while my kids were 2 and 5.

I found the book " How to Help Children Handle a Parent's Serious

Illness " to be very helpful in preparing them for my absence and

disability upon my return. You can find it at Amazon at

http://www.amazon.com/exec/obidos/tg/detail/-/0312146191/002-4282264-

2604024

In fact, I love it so much that this is, like, the 20th time the

group has had to sit through me touting it. That said, it's a year

later, and my kids barely remember last year (though it was difficult

at the time). All those cliches about how resilient kids are appear

to be rooted in actual fact.

Re. pain management. Well, you know, it's not a walk in the park. I'd

suggest discussing pain management (how it works in the hospital, who

you'll contact post-release, etc.) with your doctor in advance.

Another option is to work with a formal pain management center

(they're often less cavalier about pain than ortho surgeons) or your

GP to coordinate your prescriptions.

I know how scary it is to have it coming up, but it IS possible to

come out the other side.

Best,

Elissa

> I am going to have a two stage surgery in early July. My first

> surgery was in 1983 with a long Harrington rod from T3 to L4 and

> below L4 is " gone " , I have chronic pain, the leaning, leg pain etc.

> etc. All I can remember is how horrible the recoperation the first

> surgery was. I pray things have improved since then. Dr. Knirk

was

> the doctor then. Anyone have words to cheer me up? I also have a

> husband and two young kids boys who don't even know how to boil

water.

[Guest guest]

Hi Neta

It sounds like you have had your share of medical problems. I have also had

many health issues and I'm partial paralyzed on my left side due to a stroke

during surgery in 1988.

I am now scheduled for scoliosis deformity surgery on July 9. I have a 110

degree curve. Due to so many adversities in the past, I am scared out of my

wits. I will be 57 the end of this month.

What kind of dog do you have?

Joyce

surgery

I had my fisrt surgery at age 8 for the scoliosis. At age 11 I

had my first open heart done. Between the ages of 12-14 I had a

series of surgeries for the scoliosis thing again. Been through the

hardware and software (no pun intended:). At age 47 I had my second

open heart surgery, couple yrs before that I had congestive heart

failure. Now at age 50 I'm just older and more cranky, due mostly to

severe back and right shoulder pain. The ticker is doing better than

the back-go figure. At any rate, my pain meds are limited because of

the heart meds I take...the good news is I'm happily married and have

a dog and 4 cats. They all take the mind off the pain (sometimes). I

do have an appt. today to see about the shoulder pain tho..it is

getting rather severe at times.

Take care and thank you for this group.

Neta F.

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

[Guest guest]

> I echo what Elissa said re the book. Also, you have a few months to train

them to make a few meals, sweep, etc. When your friends ask what they can do to

help, TELL THEM SOMETHING CONCRETE. Like laundry, dishes, carpooling. People

love to help; it makes them feel needed.

> From: " bettymobile2000 " <bettymobile2000@...>

> Date: 2004/05/21 Fri PM 04:52:51 EDT

>

> Subject: Surgery

>

> I am going to have a two stage surgery in early July. My first

> surgery was in 1983 with a long Harrington rod from T3 to L4 and

> below L4 is " gone " , I have chronic pain, the leaning, leg pain etc.

> etc. All I can remember is how horrible the recoperation the first

> surgery was. I pray things have improved since then. Dr. Knirk was

> the doctor then. Anyone have words to cheer me up? I also have a

> husband and two young kids boys who don't even know how to boil water.

>

>

>

>

>

> 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]

-BETTY:

I had my two part revision done in February. I do not feel half as

bad as I did my other surgeries. I live alone and have managed from

the beginning but I had to ask for help and accept from people when

they offered. I cooked ahead and froze some things and stocked up on

some non-perishables. I think the first surgery was the worst because

it was so long ago and we had no idea at all what to expect. I am

happy so far with the results and I think that affects how you deal

with it.

Jan

-- In , " bettymobile2000 "

<bettymobile2000@y...> wrote:

> I am going to have a two stage surgery in early July. My first

> surgery was in 1983 with a long Harrington rod from T3 to L4 and

> below L4 is " gone " , I have chronic pain, the leaning, leg pain etc.

> etc. All I can remember is how horrible the recoperation the first

> surgery was. I pray things have improved since then. Dr. Knirk

was

> the doctor then. Anyone have words to cheer me up? I also have a

> husband and two young kids boys who don't even know how to boil

water.

[Guest guest]

Joyce,

You know, I am amazed at how many people talk about their hip site hurting.

My bone was taken from there, too, and I have never had any pain from there.

So please do not think that you will automatically have awful pain there, OK?

Carole

[Guest guest]

Carole,

When I had my surgery in '88 they had to fuse my neck at C1-C2 and they used

bone from my left hip. I have had a burning pain ever since. Now they want to

take bone out of the other hip. I hope I have better luck this time.

Joyce

Re: surgery

Joyce,

You know, I am amazed at how many people talk about their hip site hurting.

My bone was taken from there, too, and I have never had any pain from there.

So please do not think that you will automatically have awful pain there, OK?

Carole

[Guest guest]

Maybe I can share a positive experience with you. I live in Cape Town, South

Africa. I had a Harrington instrumentation from T4 to L2 in 1978 at the age of

22 correcting a scoliosis of +/- 66degrees to +/- 35 degrees. There was a good

bit of post-operative pain but within 18 months after the operation I was

playing cricket at a reasonably high level. Subsequently I have played golf with

my best handicap being one. The surgeon (whose name I will give to anyone who is

seriously interested) is very pleased with the result.

I have always had a ceratin level of back pain but accepted that as being part

of the territory. Recently I have experienced more severe pain in my left leg

and hip and went back to the surgeon who performed the original operation and he

has recommended a decompression and fusion of L5 and S1.

Given the fantastic results from the original surgery I am probably going to

follow his advice. Is there anyone out there with a similar history who could

advise me?

n

[Guest guest]

Joyce,

I'm sorry to hear that you are one of the people who has pain in that hip

site. I must have been awfully lucky. I can still see the scar, but no

particular pain -- there.

Would you believe that I met another woman Sat eve (were having dinner

together) who has a Bichon? She was singing its praises, and it is her second

one.

The first lived to be somewhere in his high teens! Her current one weighs 20

pounds.

I'm still rooting for you re your surgery.

Sincerely,

Carole

[Guest guest]

Dear Joyce,

My surgery was 1960 and the right hip crest was used for fusion bone. I also

didn't have hip pain until the last 5 years in the bone donor site so I think

it's from further progression instead of the surgery so long ago. (the

surgery was too short so it continued to progress)

Jolene

[Guest guest]

In a message dated 5/24/04 4:08:54 PM, Buttonjo@... writes:

the surgery was too short so it continued to progress

Is this a common situation - my son's surgery was short and his curves

continue to progress - not to mention the pain he is experiencing requiring an

MRI and CT scan to try and find the source of the pain plus being on pain med

which at 19 years of age seems excessive and unfortunate.

[Guest guest]

Dear n,

Before you undergo further surgery you might want to checkout the term

'flatback'. I'm not saying you have it, but it should be explored. I do not

have

it because I did not get a Harrington Rod in my first surgery. Your doctor may

not be familiar with the condition nor be able to fix it if you have it. It

takes a very specialized practice. Just to be safe look for info on the web

or ask for web site locations from the readers here. Better safe than

sorry.........

Jolene

[Guest guest]

Jolene, I am sure that a lot of the pain in my hip is due to the fact that all

my weight is on that hip. I am so twisted, if I sat on both cheeks I would fall

over. Maybe it will ease up after surgery.

Joyce

Re: surgery

Dear Joyce,

My surgery was 1960 and the right hip crest was used for fusion bone. I also

didn't have hip pain until the last 5 years in the bone donor site so I think

it's from further progression instead of the surgery so long ago. (the

surgery was too short so it continued to progress)

Jolene

[Guest guest]

Hi Betty,

I know Dr. Rand, saw him first 5 years ago. You're in great surgical hands. His

reputation is impeccable.

I know it is difficult to openly speak about your fears and your pain. But we

all do it. In doing so we all learn from one another. I hope you won't be " too "

private.

I'm gearing up for my first revision surgery and I have learned so much from

reading these posts about others' fears, recoveries, avoidance of revision

surgery, family reactions, and many many more things. We're all here to support

one another. I hope one day you'll be comfortable enough to post openly. This is

a very knowledgable support group. We need to stick together to ensure we ask

all pertinent questions and to arm ourselves with knowledge when we are face to

face with our docs.

Good luck with your surgery. I truly believe in your surgeon.

xoxo's

[Guest guest]

Hi Carol,

You are going to have a Bichon yet! My Sota is only 2 years old and weights 14

pounds. I'll have to send you a picture sometime.

Thank you for your concern over my up coming surgery.

Joyce

Re: surgery

Joyce,

I'm sorry to hear that you are one of the people who has pain in that hip

site. I must have been awfully lucky. I can still see the scar, but no

particular pain -- there.

Would you believe that I met another woman Sat eve (were having dinner

together) who has a Bichon? She was singing its praises, and it is her second

one.

The first lived to be somewhere in his high teens! Her current one weighs 20

pounds.

I'm still rooting for you re your surgery.

Sincerely,

Carole

[Guest guest]

Dear Joyce,

Good luck with your surgery. My thoughts and prayers are with you. We all

know how you are feeling these last few days before the surgery. You may be

uncomfortable after the surgery for a while but you will be so relieved its

over. No more worrying and anticipating the surgery.

Once again good luck and we look forward to hearing from you soon.

Kathy

[Guest guest]

I'll be with you all the way, Joyce!

Carole

[Guest guest]

Joyce,

Wishing you the best with your upcoming surgery and will looking for updates

from CaroL!

[Guest guest]

Hi Carole

Hope all goes well with your surgery, was a pleasure to meet you and thanks for

your kind words of support, please come back and let us all know how you got on

and how you are feeling afterwards

Simone

Surgery

We will be leaving for St Louis for my surgery this Wednesday the 7th. I am

signing off the list but wanted to thank everyone for their support over the

past few months. I know this initial scoliosis deformity surgery is like an in

grown toe nail surgery for a lot of you die hards but it is a big deal for me.

I am sure I will do fine.

Carole (the elder) will keep you posted.

Joyce

[Guest guest]

Joyce, if it's not too late, let me wish you all the best! Prayers are with you

for an trouble-free operation, speedy recovery, and excellent outcome!

Sharon

Surgery

We will be leaving for St Louis for my surgery this Wednesday the 7th. I am

signing off the list but wanted to thank everyone for their support over the

past few months. I know this initial scoliosis deformity surgery is like an in

grown toe nail surgery for a lot of you die hards but it is a big deal for me.

I am sure I will do fine.

Carole (the elder) will keep you posted.

Joyce

[Guest guest]

Hi Simone,

Thank you for your kind words. However, I think that Joyce's letter

confused you. She is the one on the way to St. Louis for the surgery. What

she

meant was that her husband will call me and let me know how she is doing so

that

I can tell the rest of the " gang " .

I am very happy to do that. We all worry about one another and that is as

it should be, right? Perhaps, one of these days, it will be my turn. However

right now I am recovering from hand surgery and biding my time until my

other hand can also be done!

My very best to you.

Sincerely,

Carole M. (the elder)

[Guest guest]

> We will be leaving for St Louis for my surgery this Wednesday the 7th. I

am signing off the list but wanted to thank everyone for their support over

the past few months. I know this initial scoliosis deformity surgery is

like an in grown toe nail surgery for a lot of you die hards but it is a big

deal for me. I am sure I will do fine.

>

> Carole (the elder) will keep you posted.

>

> Joyce

Good luck to you, Joyce. Remember we've all been where you are (in some way

or another), and we're all still here! My " initial " surgery was at age 14

in 1968, and I was plenty nervous then. It's a big deal no matter what, and

I think we all appreciate that. Keep us posted as to your progress.

D.