Re: such a mix

[Guest guest]

Hi ,

Like you I mostly just read the e-mails and only respond when I think I can

be of help.

You and I are about the same age. I am 44. I have to commend you for

having the guts to have the surgery at 14. I absolutely refused back then and

then eventually had to have the surgery in my late 30's. I am not going to

bore

you with details but at age 40 needed full revision surgery. Like you I was

petrified about going through such an invasive surgery again. I agree with

you that on this forum there are so many horror stories, it can be daunting.

But I am writing you to tell you that 4 years later, I am doing great. I

live relatively pain free. I don't know many 40 years old that don't have

aches and pains. Yes maybe down the road I will have degenerative disc

disease,

etc. but I can't worry about that. Right now I feel good. My daughter was

diagnosed and is currently wearing a brace which can be difficult at times.

She is going to be 14 in October. Need I say more. I try to instill in her

that if this is what we were given to deal with, then be thankful. There are

so many worst diseases out there. No one in this world goes untouched.

So I just felt I should write to you to let you know not everyone has

such difficulties. My heart goes out to anyone out there who are

experiencing such difficulties. This is an important forum because it lets all

of us

know that we are not alone.

I hope this helped.

Kathy,

PS: I also have one breast larger than the other. Didn't have that before

my revision surgery. Don't know why and don't care.

[Guest guest]

--- teresa borden <teretree@...> wrote:

> I just figured the 'problem' was fixed. When

> I finally went to see a specialist about 7-8 yrs

> ago, Dr. Serena Hu in S. F., she recommended surgery

> before I turned 50.

- I was also 14 (in 1969) when I had scoliosis

surgery (T6-L3 w/H-rod) and was in the body cast for

almost a year. My family and I were under the

impression I was " cured " . I had no problems for the

last 35 years until excruciating pain forced me to my

doctor and we discovered my slipping spine (L5/S1). I

turned 49 in June and am having surgery in November.

Initially, I was fighting against having another

fusion but the thought of not doing now and having to

do it later - when I am older - changed my mind. I

just kept thinking I don't want my 'golden years' to

be marred by disability. So now I have a date for

surgery and another dilemma. The doctor wants to just

fuse the slipping spine at L5/S1. My discogram proved

the discs below my original fusion and the one I am

having are healthy so far. My dilemma is: what if

those 2 discs (L3/L4 and L4/L5) give out down the

road? I would then be looking at another surgery.

Should I have those levels fused now too, in order to

avoid that? I want to turn 50 next June with all of

this behind me. I am having a difficult time with this

decision. On one hand I think modern medicine is

growing rapidly -- they can separate conjoined twins

who share a brain! On the other hand, the spine poses

a much greater challenge -- or so it seems. I agree

that it is often discouraging reading the difficult

stories and heartwarming how many people care enough

to help others - no matter what their own problems

are. Everyone decides for themselves what to do, which

doctor to see, etc. but it really helps to have a

support group that understands what you go through.

Keep posting on how you are doing and congratulations

on your I recent marriage. And keep up the positive

thinking! Yesterday I bought a new suit for work on

sale and I have no idea when (or if) I will be able to

return to work. It just felt so good! - Kathi in NJ

__________________________________________________

[Guest guest]

--- teresa borden <teretree@...> wrote:

> I just figured the 'problem' was fixed. When

> I finally went to see a specialist about 7-8 yrs

> ago, Dr. Serena Hu in S. F., she recommended surgery

> before I turned 50.

- I was also 14 (in 1969) when I had scoliosis

surgery (T6-L3 w/H-rod) and was in the body cast for

almost a year. My family and I were under the

impression I was " cured " . I had no problems for the

last 35 years until excruciating pain forced me to my

doctor and we discovered my slipping spine (L5/S1). I

turned 49 in June and am having surgery in November.

Initially, I was fighting against having another

fusion but the thought of not doing now and having to

do it later - when I am older - changed my mind. I

just kept thinking I don't want my 'golden years' to

be marred by disability. So now I have a date for

surgery and another dilemma. The doctor wants to just

fuse the slipping spine at L5/S1. My discogram proved

the discs below my original fusion and the one I am

having are healthy so far. My dilemma is: what if

those 2 discs (L3/L4 and L4/L5) give out down the

road? I would then be looking at another surgery.

Should I have those levels fused now too, in order to

avoid that? I want to turn 50 next June with all of

this behind me. I am having a difficult time with this

decision. On one hand I think modern medicine is

growing rapidly -- they can separate conjoined twins

who share a brain! On the other hand, the spine poses

a much greater challenge -- or so it seems. I agree

that it is often discouraging reading the difficult

stories and heartwarming how many people care enough

to help others - no matter what their own problems

are. Everyone decides for themselves what to do, which

doctor to see, etc. but it really helps to have a

support group that understands what you go through.

Keep posting on how you are doing and congratulations

on your I recent marriage. And keep up the positive

thinking! Yesterday I bought a new suit for work on

sale and I have no idea when (or if) I will be able to

return to work. It just felt so good! - Kathi in NJ

__________________________________________________

[Guest guest]

Hi Kathi...

It's a big dilemma that a lot of people are facing. I'm not sure I

can be of much help, but I can tell you that the patients I know who

had to have one level fusions usually tell me that the one level

fusion is a piece of cake in comparison to the long fusions. (I hope

they're right, since I'll be facing that sometime within the next few

years.)

Regards,

> My dilemma is: what if

> those 2 discs (L3/L4 and L4/L5) give out down the

> road? I would then be looking at another surgery.

> Should I have those levels fused now too, in order to

> avoid that? I want to turn 50 next June with all of

> this behind me.

[Guest guest]

The discs below my fusion L4 and L5 are also deteriorating. I am looking

into having disc replacement instead of a fusion. You might want to check with

your doctor and see if this may be something he can do.

[Guest guest]

Hi, Kathy

I was really touched by your response to my posting. It made me think about how

important it is to feel that someone cares and how that is such a vital function

of this forum.

The truth is that back when I was 14, I wasn't offered a choice about having

surgery or not. I lived in the midwest, don't know if that was a factor, hah,

and my parents presented the situation to me as a given. I had no choice. It

was the only option to 'fix' my curved back (which nobody even knew was curved

until a taunting classmate behind me on the stairs at the high school said

something and I repeated it to my dad who took a close look) I suppose I didn't

live in a very 'Democratic' family. But they cared about me tremendously and

found a doctor with the best reputation they could in Kansas City. So what if

he was an old fart with a horrible bedside manner who made me cry? He was

supposed to be the best surgeon in the area. Of course, as Dr. Hu in S.F. said

to me several years ago (around your age) they didn't know back then what they

know now, they hadn't developed certain techniques yet.

After reading about so many problems with the rods and things that were later

put into people's backs......in a sense I am glad that I only had a bone fusion.

Though it's now obvious that it was not a life-long solution as my back

continued to curve. I have successfully avoided knowing the progression of the

curve for about six years now....and while I know it's foolish.....I seem to

have a sort of superstitious feeling about it. It's hard to explain. But I will

get it checked out this year, or next. I know it's important, as much as I

dread it.

Kathy, you mentioned your daughter wearing a brace. My sister who is 2 1/2

years younger than I am was also diagnosed with scoliosis and, since they caught

it at a younger age, they said, she wore a brace for several years instead of

having surgery. The problem was that we had working parents who left early in

the morning.....and she would often take her brace off to go to

school.....putting it back on before they got home in the evening. So, as could

be expected, it didn't work. Her curve progressed. I know she had a lot of

pain for a while, but she hasn't been in touch for several years. At one point

she said she'd seen a doctor and he recommended exercise. She refused to

believe she needed any further check-ups.

I guess what scares me the most is the possibility of becoming truly 'crippled'.

Not being able to walk. Or, worse, not being able to breath. But I still can't

reconcile myself to the idea of being cut open and having my inner self messed

with in such a profound way, not at my age. I know I need to get myself to the

doctor and be assessed, now rather than later when I'm really old.

Another thing, Kathy. It is so true that there are so many people in this world

who have such worse things to deal with. I am thankful that I can live the way

I do, in the forest, with a man I love who loves me, that my daughter who will

be 21 next month is healthy and happy and my two grandchildren are so amazing.

I am thankful that I can walk and do most things on my feet if I rest now and

then. I am really thankful that I have an inquiring mind and that I'm a great

teacher.

Thank you for your wonderful email.

[Guest guest]

Hi Cjd1097 - One type of the ADR has been approved by

the FDA and my surgeon said he is/was (?) involved in

some of the trials. He mentioned to me that either it

has not been tested on multiple levels yet, or it

hasn't been approved for multiple levels yet. Can't

remember which. Be sure to ask your doctor about that.

Hope all goes well for you. - Kathi in NJ

- Thanks for your note. Yeah, even my surgeon

said a one-level fusion is a much shorter recuperation

and less traumatic surgery. I just wish I knew that if

I take the 'easier' way out now, I won't pay for it

years from now by then having to do the remaining two

levels. I know there's no way to actually 'know'. I am

hoping my upcoming discussion with the surgeon will

help give me a better idea of the pros, cons, and

risks. - Kathi in NJ

__________________________________________________

[Guest guest]

Hi K Sutton .... this is Harb,

I have heard you talk about ADR?? What is ADR??? Is it a new procedure??/ A new

kind of instrumentation???

K Sutton <suttoncgnj@...> wrote:

Hi Cjd1097 - One type of the ADR has been approved by

the FDA and my surgeon said he is/was (?) involved in

some of the trials. He mentioned to me that either it

has not been tested on multiple levels yet, or it

hasn't been approved for multiple levels yet. Can't

remember which. Be sure to ask your doctor about that.

Hope all goes well for you. - Kathi in NJ

- Thanks for your note. Yeah, even my surgeon

said a one-level fusion is a much shorter recuperation

and less traumatic surgery. I just wish I knew that if

I take the 'easier' way out now, I won't pay for it

years from now by then having to do the remaining two

levels. I know there's no way to actually 'know'. I am

hoping my upcoming discussion with the surgeon will

help give me a better idea of the pros, cons, and

risks. - Kathi in NJ

__________________________________________________

[Guest guest]

Kathi,

My doctor in Boston has done the disc replacement at one level. He is

expecting to get approval in the US for multiple level soon. Just waiting

for that to happen. He said they have been doing it in Europe for years. So

far it seems that the disc replacement is having much success.