Re: New to the group and searching for info

[Guest guest]

--- debbie brickley <debbiebrickley@...> wrote:

> what you are saying is that you had a natural progressive fusion

> over the years and that in those areas you are pain free.

Exactly. The physiatrist's explanation as I remember it was that even

though I did not feel it there was some bone on bone contact so my body

basically immobilized that area to prevent it. I still have very good

range of motion. Flexibility has never been a problem.

> ...and two bouts of spontaneous separtion of ribs, one or either side

OW! Gads, that sounds sooo painful.

> ...wondering if the manipulation over the years caused the stress

> and lateral leisthesis at the lower levels?

I don't know. For me, side to side movements of my hips does cause pain.

It isn't immediate but a few hip swishes when my favorite song comes on

can leave me achy & stiff for hours. And more than a few will bring on

an attack of intermittent stabbing pain. So I've just trained myself not

to move that way. Won't win any dance contests but I can do almost

anything else I want.

> ...sounds like you had an anomaly in your lower vertebrae which

> I think I also had as a child...

Your surgeon should be able to tell you that. Have you asked if they

know the cause?

> ...scoliosis, not noticed until I was 11 or 12.

Ditto. Mine was diagnosed when I was 11 yo & I had surgery shortly

after. (That was 33 yrs ago.) Since mine is congenital no bracing would

have helped & progression was a definite as long as I continued to grow.

> How old are you? Do you mind?

Don't mind at all. I just turned 44 yo. At the time of surgery they

stressed that even with surgery I would likely have severe arthritis

starting in my 20's. I was about 13 yo when my surgeon noticed something

on xray & mentioned the possibility of lateral listhesis & a second

fusion. I had no problems until I was 42 yo.

I am so sorry you are having such pain. Mine is well controlled with

exercise, a change in ergonomics & medication. Please let us know what

you decided & when you have surgery. Hopefully something will give you

relief from all this pain.

[Guest guest]

So, , you are 12 years younger than I, and I bet in those 12 years

orthopedic back surgery came along way. I did pretty well when I was in my 20's

and 30's; had one child and worked HARD as a nurse for 24 years. When I was 11

they told me I would have arthritis in my 50's and really that's when it got

bad. I've seen the same therapist for 8 years and that has helped. I never could

find a surgeon I trusted; most of them were so arrogant and wouldn't talk to me

and explain stuff. I'm a nurse, for gosh sakes.I kinda gave up on tradtional

medicine, and then last year I was having so much pain I thought I had an

autoimmune disease because it seems that I ached all over. I can see now that I

had been sucking up my pain and really not dealing with it for so long, that I

was physically ill from the pain. I ran into a really bad dr. that was

recommended to me that merely put me on steroids and told me I had polymyagia

rheumatica which is an autoimmune disease but didn't do any

testing. The steriods really messed with me, it took me most of a year to see

what was going on. Then I came back to a wholistic dr who took one look at me

and put me on strong narcotics to get me out of the black hole I was in, and

told me he thought I really needed surgery. I had tried all the alternative

modalities and it wasn't working. I had always said that I wouldn't have surgery

unless I couldn't walk or the pain got too bad. Soo here I am.

Surgery is scheduled Sept 27 at UCSF with Dr. Serena Hu. She is the

Co-Director of the Spine Clinic at UCSF.(My husband and I met 3 different

surgeons this summer in our search.) I felt good about her, and about all the

ancillary staff that run the clinic. That is very important to me; I think those

staff people are as important as the surgeon to make the whole thing run

smoothly and address your needs.

Now that I have passed the hurdle of accepting the surgery and scheduling it

(and that was a big one) I am starting to do more research and that is what led

me to this chat room. I probably should have come here first; because I really

need this surgery and can't wait or explore options any more. It has been very

hard on my relationship with my husband, as I am stubborn and I have been tough

on him. And he doesn't really understand my pain, nobody does if you haven't

been there. He hates what the narcotics do to me, and I STILL have pain.

Wow, I just spilled my gut. Thanks for listening. It feels good.

Debbie

<laura@...> wrote:

--- debbie brickley <debbiebrickley@...> wrote:

> what you are saying is that you had a natural progressive fusion

> over the years and that in those areas you are pain free.

Exactly. The physiatrist's explanation as I remember it was that even

though I did not feel it there was some bone on bone contact so my body

basically immobilized that area to prevent it. I still have very good

range of motion. Flexibility has never been a problem.

> ...and two bouts of spontaneous separtion of ribs, one or either side

OW! Gads, that sounds sooo painful.

> ...wondering if the manipulation over the years caused the stress

> and lateral leisthesis at the lower levels?

I don't know. For me, side to side movements of my hips does cause pain.

It isn't immediate but a few hip swishes when my favorite song comes on

can leave me achy & stiff for hours. And more than a few will bring on

an attack of intermittent stabbing pain. So I've just trained myself not

to move that way. Won't win any dance contests but I can do almost

anything else I want.

> ...sounds like you had an anomaly in your lower vertebrae which

> I think I also had as a child...

Your surgeon should be able to tell you that. Have you asked if they

know the cause?

> ...scoliosis, not noticed until I was 11 or 12.

Ditto. Mine was diagnosed when I was 11 yo & I had surgery shortly

after. (That was 33 yrs ago.) Since mine is congenital no bracing would

have helped & progression was a definite as long as I continued to grow.

> How old are you? Do you mind?

Don't mind at all. I just turned 44 yo. At the time of surgery they

stressed that even with surgery I would likely have severe arthritis

starting in my 20's. I was about 13 yo when my surgeon noticed something

on xray & mentioned the possibility of lateral listhesis & a second

fusion. I had no problems until I was 42 yo.

I am so sorry you are having such pain. Mine is well controlled with

exercise, a change in ergonomics & medication. Please let us know what

you decided & when you have surgery. Hopefully something will give you

relief from all this pain.

[Guest guest]

Dear Debbie,

You are in great hands with Dr. Hu. She was one of the doctors I considered

last year to do mine. We were very impressed with her. (But we chose

someone closer to home). She was our second choice of 5 specialists. Facing

the

big hurdle of deciding it is time to do something is huge. You've made a

good choice. I am glad I had surgery...just wish I'd had it earlier.

If you haven't read Wolpert's Scoliosis Surgery: The Definitive Patient's

Reference I highly recommended it.

Keep us posted.

Jolene....60, 90/55 S curve, AIS, osteoporosis, surgery 1960, 2006.

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Jolene, thanks so much for your encouragement. Just what I needed today. I just

spoke to a radiologist-friend that insists that (all) back pain is

emotion-anxiety based and that scoliosis doesn't cause pain!!!! and that my

spinal stenosis is moderate and that I shouldn't need surgery. I politely told

him he was full of crap. (Gettin stronger every day) September 27, right around

the corner.

Debbie

Buttonjo@... wrote:

Dear Debbie,

You are in great hands with Dr. Hu. She was one of the doctors I considered

last year to do mine. We were very impressed with her. (But we chose

someone closer to home). She was our second choice of 5 specialists. Facing the

big hurdle of deciding it is time to do something is huge. You've made a

good choice. I am glad I had surgery...just wish I'd had it earlier.

If you haven't read Wolpert's Scoliosis Surgery: The Definitive Patient's

Reference I highly recommended it.

Keep us posted.

Jolene....60, 90/55 S curve, AIS, osteoporosis, surgery 1960, 2006.

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Debbie,

I do not keep in touch with you guys, but I do read what you post and you are

right this guy is FULL of crap!!!

ALABAMA

debbie brickley <debbiebrickley@...> wrote:

Jolene, thanks so much for your encouragement. Just what I needed today. I

just spoke to a radiologist-friend that insists that (all) back pain is

emotion-anxiety based and that scoliosis doesn't cause pain!!!! and that my

spinal stenosis is moderate and that I shouldn't need surgery. I politely told

him he was full of crap. (Gettin stronger every day) September 27, right around

the corner.

Debbie

Buttonjo@... wrote:

Dear Debbie,

You are in great hands with Dr. Hu. She was one of the doctors I considered

last year to do mine. We were very impressed with her. (But we chose

someone closer to home). She was our second choice of 5 specialists. Facing the

big hurdle of deciding it is time to do something is huge. You've made a

good choice. I am glad I had surgery...just wish I'd had it earlier.

If you haven't read Wolpert's Scoliosis Surgery: The Definitive Patient's

Reference I highly recommended it.

Keep us posted.

Jolene....60, 90/55 S curve, AIS, osteoporosis, surgery 1960, 2006.

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Hi Debbi,

I am also 56 yrs old and an RN- are you in Columbia, SC? I ask because I live

in SC, about an hour from Columbia. If you would prefer, please feel free to

email me directly. I had fusion at 45 from T1 to L5 and at thr present time I am

needing more surgery but I am putting it off until it is an absolute have-to. I

was told that I HAD to have the surgery 11 years ago, but I had just started to

have pain at that time. I would not do the same thing I did before, but only

because I feel, or rather know, that I did not do enough research prior to my

surgery. With only my one lumbar vertebra unfused, I have had deterioration

below the fusion and I have a lot of neck pain and have developed arthritis

there. I broke one of the rods and my fusion at waist level (at work). I think

that it you choose to have just the small surgery now, you may have to have more

surgery later. That is just my gut feeling, but the belief that curves don't

progress after puberty is so dangerously

wrong.But I'm sure you already are well aware of that fact! It amazes me that

so many doctors still believe it! My gyno is a little younger than me and she

was shocked that it was not true. The 'average' progression is 1 degree/ year. A

person in their 20's- 30's needs to know that and be realistic about where they

will probably be, with the conservative 'average', when they get to be older. I

have a C-curve and my progression in my 40's was over 4 degress/ year. I was at

68 degrees when I had the fusion. We all know that younger surgery patients heal

better, all other factors being similar. My hard old bones corrected to 35

degress, less than the 28 or so the dr hoped for, but it helped a lot of things.

My ribs got up off my hip bone on the left side and I gained over an inch! Plus

the back rib hump is much better.

But back to your situation (sorry for the veering off the subject- I like to

blame it on the Lyrica, but that just makes it a little worse )....... Have you

gotten at least a couple of opinions? The people who I am aware of in this area

who are sorry that they had surgery did not go to a scoliosis specialist. My

first eval was an ortho whose speciality was spines. The difference in his plan

and projected outcome, and the plan and projections from the dr who did my

surgery were night and day. Apples and oranges. I can't blame you for wanting

the least complicated surgery possible. I am so scared of another surgery and I

KNOW the dr who will do the surgery, if I ever break over and have it, is

absolutely, without question, the A Team. The best possible out there. But I

still don't want surgery. I live on narcotics from the pain clinic and thank God

for them every day. I shudder to remember how things were when I was in school

in the early 70's- terminal patients, with days

to live, writhing in pain, were given their MS04 10mg IV every 4 hrs, and no

sooner. I thought it was horrible then and it helped me to be a good Hospice

nurse when I did that job. If I didn't have the meds I would be either dead, or

in the OR ASAP. Oh well..... I have wandered off topic again so I'll sign off.

Good luck with your decision- let us know what you decide. Bea

debbiebrickley <debbiebrickley@...> wrote:

I am a 56 yo female that has resisted scoliosis surgery all my life.

Also am an Rn and have seen several postop patients sorry that they

have had scoliosis surgery. Now I HAVE to have surgery as I am taking

so much narcotic for spinal stenosis with SEVERE left sciatica that it

is affecting my relationship and me. I have a right 52 degree thoracic

curvature and now a compensating lumbar 40 degree curve. I am to have a

spinal fusion at L4-5, S1 at the end of Sept. I won't let them do my

whole spine but they would like to. I am wondering if anyone has had

this situation and did it help? I am so afraid that I might be trading

one pain for another. My chiro is afraid that the pressure on L2-3 my

cause the same problem there.

Any feedback?

Debbie in Columbia

[Guest guest]

Hi, Beverlee: No, I live in a little town in California called Columbia; a state

park,as a matter of fact right out of the Gold Rush era. Thanks for writing

back. Now to respond to your letter: I have known that curves progress 1 degree

a year for many years. I don't think mine has, or should I say my thoracic curve

has not progressed, but now I see that my lumbar curve has taken over, now to 40

degrees; and causing my spinal stenosis, which is why I need surgery. As I have

told many folks, I can deal with my scoliosis, and have, for many years. It's

this ol' spinal stenosis and leg pain that wants me to go screaming into the

night. Yes, I have gotten three opinions this summer from scoliosis experts. One

in Baltimore, at the Univ. of Md, one at Stanford, and at UCSF. I really liked

the guy in Balitimore, even though my daughter lives there, it was pretty hard

to see how we could make that work. He is the guy that recommended me to the

surgeon at UCSF, Serena Hu. The

Stanford dr. was useless. Pretty much told me, " if the epidural blocks don't

help, surgery won't help, and do you realize how serious your problem is? " But I

have faith in Dr. Hu, and it seems like the universe is falling into place after

I finally got through that wall that was between me and the decision to have my

surgery. I can't tell you all the things that are really coming together for me.

And the Spine Clinic at UCSF: they see so many spines and scoliosis; that was my

aim; even if I didn't have full scoliosis surgery, I wanted to be treated by

dr's who would know how what they did would affect the rest of my spine.There

support staff, especially there office manager Julius is superb, and that is

very important to me. I was like you for the last 6 months: living on narcotics

and not wanting that surgery. But then, I've NEVER had surgery and didn't want

to go there. But the narcs were having a serious affect on me and my

relationship with my husband. We have gone

through some STUFF the last few weeks, but thank God, we found a great

counselor to talk us through and out of the place we were. My husband is

supportive, but noone can know what it's like.

We will be leaving to house sit in the Santa Cruz area on Monday, the 10th,

and I will go straight from there to have my surgery on the 27th. I can't wait

now, after pushing it away for so long. And now that I have come to embrace the

surgery, I hurt more, my walking is more impaired: it's like I finally don't

have to fight against the surgery, so I can feel what this spinal stenosis has

done to me and be there with it. I gave my blood yesterday for the surgery and

am on track, emotionally and mentally to face this monster head on.

I'll still be able to get emails in S. C. the next couple weeks so keep

those letters coming. Thanks for caring.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbi,

I am also 56 yrs old and an RN- are you in Columbia, SC? I ask because I live in

SC, about an hour from Columbia. If you would prefer, please feel free to email

me directly. I had fusion at 45 from T1 to L5 and at thr present time I am

needing more surgery but I am putting it off until it is an absolute have-to. I

was told that I HAD to have the surgery 11 years ago, but I had just started to

have pain at that time. I would not do the same thing I did before, but only

because I feel, or rather know, that I did not do enough research prior to my

surgery. With only my one lumbar vertebra unfused, I have had deterioration

below the fusion and I have a lot of neck pain and have developed arthritis

there. I broke one of the rods and my fusion at waist level (at work). I think

that it you choose to have just the small surgery now, you may have to have more

surgery later. That is just my gut feeling, but the belief that curves don't

progress after puberty is so dangerously

wrong.But I'm sure you already are well aware of that fact! It amazes me that so

many doctors still believe it! My gyno is a little younger than me and she was

shocked that it was not true. The 'average' progression is 1 degree/ year. A

person in their 20's- 30's needs to know that and be realistic about where they

will probably be, with the conservative 'average', when they get to be older. I

have a C-curve and my progression in my 40's was over 4 degress/ year. I was at

68 degrees when I had the fusion. We all know that younger surgery patients heal

better, all other factors being similar. My hard old bones corrected to 35

degress, less than the 28 or so the dr hoped for, but it helped a lot of things.

My ribs got up off my hip bone on the left side and I gained over an inch! Plus

the back rib hump is much better.

But back to your situation (sorry for the veering off the subject- I like to

blame it on the Lyrica, but that just makes it a little worse )....... Have you

gotten at least a couple of opinions? The people who I am aware of in this area

who are sorry that they had surgery did not go to a scoliosis specialist. My

first eval was an ortho whose speciality was spines. The difference in his plan

and projected outcome, and the plan and projections from the dr who did my

surgery were night and day. Apples and oranges. I can't blame you for wanting

the least complicated surgery possible. I am so scared of another surgery and I

KNOW the dr who will do the surgery, if I ever break over and have it, is

absolutely, without question, the A Team. The best possible out there. But I

still don't want surgery. I live on narcotics from the pain clinic and thank God

for them every day. I shudder to remember how things were when I was in school

in the early 70's- terminal patients, with days

to live, writhing in pain, were given their MS04 10mg IV every 4 hrs, and no

sooner. I thought it was horrible then and it helped me to be a good Hospice

nurse when I did that job. If I didn't have the meds I would be either dead, or

in the OR ASAP. Oh well..... I have wandered off topic again so I'll sign off.

Good luck with your decision- let us know what you decide. Bea

debbiebrickley <debbiebrickley@...> wrote:

I am a 56 yo female that has resisted scoliosis surgery all my life.

Also am an Rn and have seen several postop patients sorry that they

have had scoliosis surgery. Now I HAVE to have surgery as I am taking

so much narcotic for spinal stenosis with SEVERE left sciatica that it

is affecting my relationship and me. I have a right 52 degree thoracic

curvature and now a compensating lumbar 40 degree curve. I am to have a

spinal fusion at L4-5, S1 at the end of Sept. I won't let them do my

whole spine but they would like to. I am wondering if anyone has had

this situation and did it help? I am so afraid that I might be trading

one pain for another. My chiro is afraid that the pressure on L2-3 my

cause the same problem there.

Any feedback?

Debbie in Columbia

[Guest guest]

Dear Debbie,

I live fairly close to you (in Stockton). If you or family needs a fairly

close (at the zoo entrance) and reasonable motel (deco style) near the Zoo we

stayed for our visit with Dr. Hu ...Ocean Park Motor Park was very

accommodating.

And there is a great support group in Sacramento that meets 3 or 4 times a

year...get on the emailing _list.. dgummer@..._

(mailto:list..dgummer@...) . Diane Gums, RN is the group leader and is

a fantastic

resource. The members are incredible, too.

You'll have a nice safety net if you want it.

Jolene

************************************** See what's new at http://www.aol.com

[Guest guest]

Debbie wrote:

> The Stanford dr. was useless. Pretty much told me,

> " if the epidural blocks don't help, surgery won't help

Debbie,

Please pay heed to what the Stanford doc told you. When properly

administered epidurals can be diagnostic. If you did not get adequate

relief from the injections then realistically you stand the likelihood

that surgery will not significantly improve the pain. I am not saying

the surgery won't help. Just want you to be realistic. In general,

spinal surgery is not done for pain relief alone. It is usually done to

prevent more damage being done, especially to prevent nerve damage.

Sometimes the pain is so bad that people have to resort to surgery

anyway. Sounds like you are in that situation. I just don't want you to

think the Stanford doc was totally out in left field.

Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

[Guest guest]

, I don't understand that logic. If I have spinal stenosis , and there is

pressure on my sciatica nerve or several nerves in my legs, and the pressure is

taken off those nerves, how can that not help? As a matter of fact, I am

starting to have some motor deficits, I am walking now with a noticable limp.

But, come on, I just don't get that logic. And, once again, that dr. failed to

explain what he meant to me. (And he was the only dr. to have made that

comment.) I have been told that one does not want to wait too long, as nerves

may not repair themselves if there has been impairment for too long. So is that

what you mean? I have asked a couple professionals if I might have waited too

long, and they said, no way. I guess I just don't understand your response.

Debbie

<laura@...> wrote:

Debbie wrote:

> The Stanford dr. was useless. Pretty much told me,

> " if the epidural blocks don't help, surgery won't help

Debbie,

Please pay heed to what the Stanford doc told you. When properly

administered epidurals can be diagnostic. If you did not get adequate

relief from the injections then realistically you stand the likelihood

that surgery will not significantly improve the pain. I am not saying

the surgery won't help. Just want you to be realistic. In general,

spinal surgery is not done for pain relief alone. It is usually done to

prevent more damage being done, especially to prevent nerve damage.

Sometimes the pain is so bad that people have to resort to surgery

anyway. Sounds like you are in that situation. I just don't want you to

think the Stanford doc was totally out in left field.

Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

[Guest guest]

, I'm still thinking about what you wrote. You must have struck a nerve.

THe question is: just because you cannot mask nerve pain with steriods, what

makes one think surgery would not be successful by taking pressure off of that

nerve and eliminating the pain. In other words; steriods only mask the pain, why

not get rid of the pain by eliminating the problem. I have to admit, you really

got me going on this one.

Debbie

<laura@...> wrote:

Debbie wrote:

> The Stanford dr. was useless. Pretty much told me,

> " if the epidural blocks don't help, surgery won't help

Debbie,

Please pay heed to what the Stanford doc told you. When properly

administered epidurals can be diagnostic. If you did not get adequate

relief from the injections then realistically you stand the likelihood

that surgery will not significantly improve the pain. I am not saying

the surgery won't help. Just want you to be realistic. In general,

spinal surgery is not done for pain relief alone. It is usually done to

prevent more damage being done, especially to prevent nerve damage.

Sometimes the pain is so bad that people have to resort to surgery

anyway. Sounds like you are in that situation. I just don't want you to

think the Stanford doc was totally out in left field.

Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

[Guest guest]

Think of nerves as spaghetti... if you push hard enough on them they

flatten out. Over time the change is permanent. Just because you

return the situation to normal doesn't mean the nerves return to their

original state. The same thing happens with the nerves in your back.

Just because you have surgery to relieve the pressure on the nerves

doesn't mean that they return to their original shape nor does it mean

the pain is going to end. The same thing happens as the nerves that

are held in traction by the rotation of the spine. When the rotation

is corrected they nerves still are not returned to their original

length...

> > The Stanford dr. was useless. Pretty much told me,

> > " if the epidural blocks don't help, surgery won't help

>

> Debbie,

>

> Please pay heed to what the Stanford doc told you. When properly

> administered epidurals can be diagnostic. If you did not get adequate

> relief from the injections then realistically you stand the likelihood

> that surgery will not significantly improve the pain. I am not saying

> the surgery won't help. Just want you to be realistic. In general,

> spinal surgery is not done for pain relief alone. It is usually done to

> prevent more damage being done, especially to prevent nerve damage.

> Sometimes the pain is so bad that people have to resort to surgery

> anyway. Sounds like you are in that situation. I just don't want you to

> think the Stanford doc was totally out in left field.

>

> Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks so much , Jolene, I was so lucky that I found a two room suite with full

kitchen and sitting room 3 blocks from the hosp and 2 blocks from the

Park(Moffatt House Bed and Bkfst) ...with parking no less, for only $128. It

had been a cancellation the nite before. So my family is coming up on various

days, I have it for 4, to visit. I have been feeling like the Universe is

falling into place for me and this surgery,lots of things working out really

well; it makes me think that this will all go well.

Debbie

Buttonjo@... wrote:

Dear Debbie,

I live fairly close to you (in Stockton). If you or family needs a fairly

close (at the zoo entrance) and reasonable motel (deco style) near the Zoo we

stayed for our visit with Dr. Hu ...Ocean Park Motor Park was very

accommodating.

And there is a great support group in Sacramento that meets 3 or 4 times a

year...get on the emailing _list.. dgummer@..._

(mailto:list..dgummer@...) . Diane Gums, RN is the group leader and is a

fantastic

resource. The members are incredible, too.

You'll have a nice safety net if you want it.

Jolene

************************************** See what's new at http://www.aol.com

[Guest guest]

Thanks, : it's very confusing, and I know everyone is trying to help. So

many opinions. The dr who said scoliosis doesn't cause pain and I shouldn't need

surgery for this and the pain is all in my head; my professional friend and my

G.P. who said no, it's not too late and I needed all this time to get my

emotional self ready for surgery. And now, I'm told that pain is not really

enough of a reason to have surgery. But, I have to try, I can't live like this.I

really think it's gonna work. I have always said I can live with my scoliosis; I

have for 44 years, or whenever it was first noticed. I've had separated ribs,

spasms all over, my neck goes out, and things ache all over. But I can't live

with the sciatic pain... and now it's starting in my left leg. I've never wanted

my thoracic curvature " fixed " . I just want my legs to stop hurting and hurting

and hurting. So lets hope that the spaghetti regains its shape and the pain goes

away.

Debbie

Leger - C74 <legerpj@...> wrote:

Think of nerves as spaghetti... if you push hard enough on them they

flatten out. Over time the change is permanent. Just because you

return the situation to normal doesn't mean the nerves return to their

original state. The same thing happens with the nerves in your back.

Just because you have surgery to relieve the pressure on the nerves

doesn't mean that they return to their original shape nor does it mean

the pain is going to end. The same thing happens as the nerves that

are held in traction by the rotation of the spine. When the rotation

is corrected they nerves still are not returned to their original

length...

> > The Stanford dr. was useless. Pretty much told me,

> > " if the epidural blocks don't help, surgery won't help

>

> Debbie,

>

> Please pay heed to what the Stanford doc told you. When properly

> administered epidurals can be diagnostic. If you did not get adequate

> relief from the injections then realistically you stand the likelihood

> that surgery will not significantly improve the pain. I am not saying

> the surgery won't help. Just want you to be realistic. In general,

> spinal surgery is not done for pain relief alone. It is usually done to

> prevent more damage being done, especially to prevent nerve damage.

> Sometimes the pain is so bad that people have to resort to surgery

> anyway. Sounds like you are in that situation. I just don't want you to

> think the Stanford doc was totally out in left field.

>

> Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

>

>

>

>

>

>

>

>

>

[Guest guest]

Well Debbie... I have been told about the pain free scoliosis... and

for most people I think it's probably true but there are a lot of

people on this group that beg to differ.

I have pain so bad at the moment that at times I think I am going mad.

My life is upside down. Everything I do seems to be a reaction to the

pain. My quality of life is measured in real small doses at the

moment. I take MS Contin (morphine) but the pain is still out of

control. I just started going to a new physiotherapist. She had my

doctor take new x-rays and what they revealed was pretty depressing.

She looked at the reports and then at me and her jaw dropped. She said

oh my god you must be in agony... Anyway she is going to try and lower

the pain as much as she can without making things worse. That's about

all I can ask for in this case.

I have at least 4 different problems. I have had three separate

surgeries so far and there won't be any more. I simply won't let them

touch my back even if and that's a big if because they told me they

wouldn't operate on my back given the circumstances... but even if

they would I wouldn't let them despite the pain. The risks in my case

outweigh the benefits.

Now in your case I think you have to ask questions, questions and more

questions and then decide what is best for you. In some cases the

throw of the dice goes in your favour. I know that if I didn't have

the surgery when I was 12 I probably wouldn't be here writing this. I

needed it to survive. I have accepted that. The other two surgeries I

believe were a waste of time and probably made the situation worse. I

don't think I got any real relief pain wise from either of them.

However in regards to the pain issue... In my case I told my mother I

was having back pain. She thought I fell or something. That's how they

discovered the scoliosis when I was about 11. I was having pain as a

child directly related to the scoliosis so I have personal experience

that in some cases scoliosis does cause pain. I have always had pain

because of it and it's looking I am pretty much stuck with it.

I know this isn't probably the most positive message you have gotten

lately on this list but I am being honest.

> > > The Stanford dr. was useless. Pretty much told me,

> > > " if the epidural blocks don't help, surgery won't help

> >

> > Debbie,

> >

> > Please pay heed to what the Stanford doc told you. When properly

> > administered epidurals can be diagnostic. If you did not get adequate

> > relief from the injections then realistically you stand the

likelihood

> > that surgery will not significantly improve the pain. I am not saying

> > the surgery won't help. Just want you to be realistic. In general,

> > spinal surgery is not done for pain relief alone. It is usually

done to

> > prevent more damage being done, especially to prevent nerve damage.

> > Sometimes the pain is so bad that people have to resort to surgery

> > anyway. Sounds like you are in that situation. I just don't want

you to

> > think the Stanford doc was totally out in left field.

> >

> > Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, thanks so much for writing. You make me feel that I should just stop

whining. But that was what I was doing last winter , and I got to an awful

place. There are two kinds of pain, you know: the achy, breaky scoliosis spasm

pain and the " someone's sticking a knife in my leg " pain. Muscle vs. nerve. They

both suck. But, I know the first one, I've known it all my life, and now this

new pain is here to cause problems. I just want to get rid of that leg " knife "

pain. And I know that there are many folks out there that are much worse than I.

God bless us all.

When I was a home care nurse, I took care of a patient that was about my age

now,56, and she had just had whole spine correction of her scoliosis. Only after

a few months, her hard bones started to pull away from her hardware and she was

facing the whole thing all over again. And in more pain than before the surgery.

She did a year's worth of research before she did the surgery, and still drew

the short stick. I will never forget her. That is why I said I would never have

surgery. ONLY if the pain got too bad or I couldn't walk. Well, here I am.

I think I will be better off if I take a break from the chat room. My

husband and I are going to the Santa Cruz area to do some housesitting/elder

care; I will leave from there for my surgery. I'll stay in touch.

Debbie

Leger - C74 <legerpj@...> wrote:

Well Debbie... I have been told about the pain free scoliosis... and

for most people I think it's probably true but there are a lot of

people on this group that beg to differ.

I have pain so bad at the moment that at times I think I am going mad.

My life is upside down. Everything I do seems to be a reaction to the

pain. My quality of life is measured in real small doses at the

moment. I take MS Contin (morphine) but the pain is still out of

control. I just started going to a new physiotherapist. She had my

doctor take new x-rays and what they revealed was pretty depressing.

She looked at the reports and then at me and her jaw dropped. She said

oh my god you must be in agony... Anyway she is going to try and lower

the pain as much as she can without making things worse. That's about

all I can ask for in this case.

I have at least 4 different problems. I have had three separate

surgeries so far and there won't be any more. I simply won't let them

touch my back even if and that's a big if because they told me they

wouldn't operate on my back given the circumstances... but even if

they would I wouldn't let them despite the pain. The risks in my case

outweigh the benefits.

Now in your case I think you have to ask questions, questions and more

questions and then decide what is best for you. In some cases the

throw of the dice goes in your favour. I know that if I didn't have

the surgery when I was 12 I probably wouldn't be here writing this. I

needed it to survive. I have accepted that. The other two surgeries I

believe were a waste of time and probably made the situation worse. I

don't think I got any real relief pain wise from either of them.

However in regards to the pain issue... In my case I told my mother I

was having back pain. She thought I fell or something. That's how they

discovered the scoliosis when I was about 11. I was having pain as a

child directly related to the scoliosis so I have personal experience

that in some cases scoliosis does cause pain. I have always had pain

because of it and it's looking I am pretty much stuck with it.

I know this isn't probably the most positive message you have gotten

lately on this list but I am being honest.

> > > The Stanford dr. was useless. Pretty much told me,

> > > " if the epidural blocks don't help, surgery won't help

> >

> > Debbie,

> >

> > Please pay heed to what the Stanford doc told you. When properly

> > administered epidurals can be diagnostic. If you did not get adequate

> > relief from the injections then realistically you stand the

likelihood

> > that surgery will not significantly improve the pain. I am not saying

> > the surgery won't help. Just want you to be realistic. In general,

> > spinal surgery is not done for pain relief alone. It is usually

done to

> > prevent more damage being done, especially to prevent nerve damage.

> > Sometimes the pain is so bad that people have to resort to surgery

> > anyway. Sounds like you are in that situation. I just don't want

you to

> > think the Stanford doc was totally out in left field.

> >

> > Best of luck with your upcoming surgery. May it prove Doc Stan wrong.

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

My son has no pain and a 50 degree thorasic curve.

The doctor recommends surgery to correct it with

fusion. Do you think if he has the surgery he will

then have pain all his life because of having rods and

fusion in his back?

--- Leger - C74 <legerpj@...> wrote:

> Well Debbie... I have been told about the pain free

> scoliosis... and

> for most people I think it's probably true but there

> are a lot of

> people on this group that beg to differ.

>

> I have pain so bad at the moment that at times I

> think I am going mad.

> My life is upside down. Everything I do seems to be

> a reaction to the

> pain. My quality of life is measured in real small

> doses at the

> moment. I take MS Contin (morphine) but the pain is

> still out of

> control. I just started going to a new

> physiotherapist. She had my

> doctor take new x-rays and what they revealed was

> pretty depressing.

> She looked at the reports and then at me and her jaw

> dropped. She said

> oh my god you must be in agony... Anyway she is

> going to try and lower

> the pain as much as she can without making things

> worse. That's about

> all I can ask for in this case.

>

> I have at least 4 different problems. I have had

> three separate

> surgeries so far and there won't be any more. I

> simply won't let them

> touch my back even if and that's a big if because

> they told me they

> wouldn't operate on my back given the

> circumstances... but even if

> they would I wouldn't let them despite the pain. The

> risks in my case

> outweigh the benefits.

>

> Now in your case I think you have to ask questions,

> questions and more

> questions and then decide what is best for you. In

> some cases the

> throw of the dice goes in your favour. I know that

> if I didn't have

> the surgery when I was 12 I probably wouldn't be

> here writing this. I

> needed it to survive. I have accepted that. The

> other two surgeries I

> believe were a waste of time and probably made the

> situation worse. I

> don't think I got any real relief pain wise from

> either of them.

> However in regards to the pain issue... In my case I

> told my mother I

> was having back pain. She thought I fell or

> something. That's how they

> discovered the scoliosis when I was about 11. I was

> having pain as a

> child directly related to the scoliosis so I have

> personal experience

> that in some cases scoliosis does cause pain. I have

> always had pain

> because of it and it's looking I am pretty much

> stuck with it.

>

> I know this isn't probably the most positive message

> you have gotten

> lately on this list but I am being honest.

>

>

>

>

>

>

> > > > The Stanford dr. was useless. Pretty much told

> me,

> > > > " if the epidural blocks don't help, surgery

> won't help

> > >

> > > Debbie,

> > >

> > > Please pay heed to what the Stanford doc told

> you. When properly

> > > administered epidurals can be diagnostic. If you

> did not get adequate

> > > relief from the injections then realistically

> you stand the

> likelihood

> > > that surgery will not significantly improve the

> pain. I am not saying

> > > the surgery won't help. Just want you to be

> realistic. In general,

> > > spinal surgery is not done for pain relief

> alone. It is usually

> done to

> > > prevent more damage being done, especially to

> prevent nerve damage.

> > > Sometimes the pain is so bad that people have to

> resort to surgery

> > > anyway. Sounds like you are in that situation. I

> just don't want

> you to

> > > think the Stanford doc was totally out in left

> field.

> > >

> > > Best of luck with your upcoming surgery. May it

> prove Doc Stan wrong.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> >

> >

> >

> >

> >

>

=== message truncated ===

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Travel.

http://travel./

[Guest guest]

I think part of the problem when surgery does not relieve pain is

because these things are more complicated than they appear.

But to explain what I was saying, which is a repeat of what others on

a different board have gone through & what my own doctor said, if they

believe that say L3/L4 is the problem area, that is where they plan to

fuse. So before you resort to surgery, assuming there is pain without

signs of nerve damage, you have injections done. The goal of the

injections is to treat the same nerves that would be supposedly

treated with the fusion. If the injections work then you have found

the source of the pain & depending on your circumstances you stand a

good chance that surgery would help with pain. If the injections at

that level do not help then you have likely not found the cause of the

pain so surgery for that area is not likely to help the pain either.

Did that make sense? (Sometimes I understand things & am just unable

to communicate it logically.) For me about 1/2 my pain right now is

from my back, the facet joints. If a facet block did not help my back

pain then likely fusing that level would not help either.

There are a lot of people who have surgery to treat pain & end up

without the relief they had hoped. That's why surgery is usually

considered a last resort for treating pain. Of course, you do want

permanent damage to the nerves carrying the motor signals. If I

understand correctly, just because something is pressing on the

sensory nerve root & causing pain does not mean it is damaging the

motor nerve root. I've had pain, including nerve pain running down my

leg, for almost two years without any signs to date of nerve damage.

Guess it will just be a balancing act trying to hold out as long as

possible while still avoiding permanent nerve damage.

This is not to say that surgery would not help you. Only you & the

doctors you've been to can make that decision. We all have to do what

is best for our situation. Just pointing out that as far as pain is

concerned it may be that the Stanford doc wasn't full of baloney. But

just because his logic was not totally askew doesn't mean he is right

about surgery not being a possible help to you.

--- debbie brickley <debbiebrickley@...> wrote:

>

> , I don't understand that logic. If I have spinal stenosis ,

and there is pressure on my sciatica nerve or several nerves in my

legs, and the pressure is taken off those nerves, how can that not

help? As a matter of fact, I am starting to have some motor deficits,

I am walking now with a noticable limp. But, come on, I just don't get

that logic. And, once again, that dr. failed to explain what he meant

to me. (And he was the only dr. to have made that comment.) I have

been told that one does not want to wait too long, as nerves may not

repair themselves if there has been impairment for too long. So is

that what you mean? I have asked a couple professionals if I might

have waited too long, and they said, no way. I guess I just don't

understand your response.

> Debbie

[Guest guest]

--- debbie brickley <debbiebrickley@...> wrote:

> , I'm still thinking about what you wrote. You must have struck

a nerve. THe question is: just because you cannot mask nerve pain with

steriods, what makes one think surgery would not be successful by

taking pressure off of that nerve and eliminating the pain.

I guess the idea is that if the injections did not mask the pain then

the pain may actually be eminating from a different level or perhaps

it did mask the pain from one area but there could be other causes. As

much as the docs rely on the dermatone charts, there are people whose

nerve pain refuses to conform to these. The folks on the Spinal

Disorders board at Brain Talk could explain it much better.

> In other words; steriods only mask the pain, why not get rid of the

pain by eliminating the problem.

If the injections actually do help with the pain then surgery may

eliminate it. However, it seems that sometimes fusing one area can

cause problems at another. So if your motor function isn't suffering &

injections are giving adequate relief then most doctors do not

recommend surgery.

We all know that sometimes pain is as debilitating as loss of motor

function. People do have back surgery solely for pain relief. You just

need to accept going into it that if a block of the nerves the surgery

is aimed at treating did not help then you do stand the chance that

the surgery won't either. Then again, if you are starting to suffer

motor deficits you don't have many choices. And if you are like me,

even a 25% reduction in pain makes a world of difference in your

ability to function. I am not trying to talk you out of surgery. Just

that your Stanford doc's comment sounds plausible to me.

[Guest guest]

Gail,

I don't have rods so cannot address that part but I did have a lumbar

fusion when I was 11 yo. I had no pain prior to my surgery. The pain

from surgery itself was only intense for a week & then painful but

bearable for 2 weeks. After that it was just some discomfort at times

until the healing was done. After that I had no pain for 30 years. My

pain now is related to a vertebrae that has slipped 1.5 cm to the

left. If that had not happened I would only have mild arthritis. My

scoliosis is congenital so correcting the curve was not an option. If

my curve had been corrected then the vertebrae would not have slipped.

The hardware does add a whole different element that I am not well

educated on.

--- Gail Merri <p0etiss@...> wrote:

>

> My son has no pain and a 50 degree thorasic curve.

> The doctor recommends surgery to correct it with

> fusion. Do you think if he has the surgery he will

> then have pain all his life because of having rods and

> fusion in his back?

[Guest guest]

I wish I could answer that. I honestly can't. In my case I had pain

prior to the surgery and it never went away. However I was able to

function for twenty good years with little or no real trouble. I had

manageable pain during that time but I don't think it was related to

the surgery as much as whatever it stemmed from in the first place.

I think the key in my case was that if I didn't have the surgery I

would not have had the twenty good years. So it was necessary. I don't

regret that.

>

[Guest guest]

Thanks, I am clearer now. I appreciate your time.

Debbie

kudzupets <laura@...> wrote:

I think part of the problem when surgery does not relieve pain is

because these things are more complicated than they appear.

But to explain what I was saying, which is a repeat of what others on

a different board have gone through & what my own doctor said, if they

believe that say L3/L4 is the problem area, that is where they plan to

fuse. So before you resort to surgery, assuming there is pain without

signs of nerve damage, you have injections done. The goal of the

injections is to treat the same nerves that would be supposedly

treated with the fusion. If the injections work then you have found

the source of the pain & depending on your circumstances you stand a

good chance that surgery would help with pain. If the injections at

that level do not help then you have likely not found the cause of the

pain so surgery for that area is not likely to help the pain either.

Did that make sense? (Sometimes I understand things & am just unable

to communicate it logically.) For me about 1/2 my pain right now is

from my back, the facet joints. If a facet block did not help my back

pain then likely fusing that level would not help either.

There are a lot of people who have surgery to treat pain & end up

without the relief they had hoped. That's why surgery is usually

considered a last resort for treating pain. Of course, you do want

permanent damage to the nerves carrying the motor signals. If I

understand correctly, just because something is pressing on the

sensory nerve root & causing pain does not mean it is damaging the

motor nerve root. I've had pain, including nerve pain running down my

leg, for almost two years without any signs to date of nerve damage.

Guess it will just be a balancing act trying to hold out as long as

possible while still avoiding permanent nerve damage.

This is not to say that surgery would not help you. Only you & the

doctors you've been to can make that decision. We all have to do what

is best for our situation. Just pointing out that as far as pain is

concerned it may be that the Stanford doc wasn't full of baloney. But

just because his logic was not totally askew doesn't mean he is right

about surgery not being a possible help to you.

--- debbie brickley <debbiebrickley@...> wrote:

>

> , I don't understand that logic. If I have spinal stenosis ,

and there is pressure on my sciatica nerve or several nerves in my

legs, and the pressure is taken off those nerves, how can that not

help? As a matter of fact, I am starting to have some motor deficits,

I am walking now with a noticable limp. But, come on, I just don't get

that logic. And, once again, that dr. failed to explain what he meant

to me. (And he was the only dr. to have made that comment.) I have

been told that one does not want to wait too long, as nerves may not

repair themselves if there has been impairment for too long. So is

that what you mean? I have asked a couple professionals if I might

have waited too long, and they said, no way. I guess I just don't

understand your response.

> Debbie

[Guest guest]

Thanks very much for the information ; it gave me

a better understanding.

--- kudzupets <laura@...> wrote:

> Gail,

>

> I don't have rods so cannot address that part but I

> did have a lumbar

> fusion when I was 11 yo. I had no pain prior to my

> surgery. The pain

> from surgery itself was only intense for a week &

> then painful but

> bearable for 2 weeks. After that it was just some

> discomfort at times

> until the healing was done. After that I had no pain

> for 30 years. My

> pain now is related to a vertebrae that has slipped

> 1.5 cm to the

> left. If that had not happened I would only have

> mild arthritis. My

> scoliosis is congenital so correcting the curve was

> not an option. If

> my curve had been corrected then the vertebrae would

> not have slipped.

> The hardware does add a whole different element that

> I am not well

> educated on.

>

>

>

> --- Gail Merri <p0etiss@...> wrote:

> >

> > My son has no pain and a 50 degree thorasic curve.

>

> > The doctor recommends surgery to correct it with

> > fusion. Do you think if he has the surgery he

> will

> > then have pain all his life because of having rods

> and

> > fusion in his back?

>

>

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Travel.

http://travel./

[Guest guest]

Hi Debbie,.. Your town sounds neat. I would so love to see the entire US. My

husband and I love to travel by RV because I can lie down while we travel, but

right now he can't get away, and we don't have our finances at a place where we

can set out for the trip to the west that we both want to make. But someday we

are going to visit your part of the country.

I am so happy for you, that you have reached a peace about your upcoming

surgery. Have they given you confidence that your pain will be significantly

decreased? I sure hope so. As far as narcotics for me- I have a hyper system. I

can take a ton, dose-wise, and it does not affect my mood or functioning. I get

no " buzz " , no desire or need to increase the dose. No problems at all. When I

have had meds added it has always helped more. Lyrica was the most recent and

has helped so much. My pain specialists have told me that even with surgery they

don't think I would ever be able to get completely off narcotics. There is too

much going on in the lower lumbar and sacrum. I know they are going on the

patients they see who continue to have pain. Just like we know- people who do

well and have no issues are not seeking support groups and pain specialists. I

guess I do well enough often enough that I am afraid to rock the boat. My med dr

told me he would not have surgery unless he

absolutely couldn't stand not to. So I'm in a different situation from yours.

And as I said, I am so happy for you. It is a great feeling to finally stop

fighting a change that is really needed.

I know you're glad you found a counselor. This chronic pain can be a

relationship hardship for sure. My husband has been wonderful but we have had

our difficulties in the past that a wonderful counselor saved us from. Now with

my pain, especially when I haven't used good sense and I have done more than I

should without resting, I feel so guilty that he misses going somewhere because

of my problem. No easy answers at all. I hate feeling like I'm lying around when

there is so much to take care of around here. But I hope that if I ever have to

have another surgery that I feel as good about it as you do. I know you will do

well. I will keep you in my prayers and will be anxious to hear from you after

it is all over. Best of everything. I hope you have a good time house sitting.

Bea

debbie brickley <debbiebrickley@...> wrote:

Hi, Beverlee: No, I live in a little town in California called

Columbia; a state park,as a matter of fact right out of the Gold Rush era.

Thanks for writing back. Now to respond to your letter: I have known that curves

progress 1 degree a year for many years. I don't think mine has, or should I say

my thoracic curve has not progressed, but now I see that my lumbar curve has

taken over, now to 40 degrees; and causing my spinal stenosis, which is why I

need surgery. As I have told many folks, I can deal with my scoliosis, and have,

for many years. It's this ol' spinal stenosis and leg pain that wants me to go

screaming into the night. Yes, I have gotten three opinions this summer from

scoliosis experts. One in Baltimore, at the Univ. of Md, one at Stanford, and at

UCSF. I really liked the guy in Balitimore, even though my daughter lives there,

it was pretty hard to see how we could make that work. He is the guy that

recommended me to the surgeon at UCSF, Serena Hu.

The

Stanford dr. was useless. Pretty much told me, " if the epidural blocks don't

help, surgery won't help, and do you realize how serious your problem is? " But I

have faith in Dr. Hu, and it seems like the universe is falling into place after

I finally got through that wall that was between me and the decision to have my

surgery. I can't tell you all the things that are really coming together for me.

And the Spine Clinic at UCSF: they see so many spines and scoliosis; that was my

aim; even if I didn't have full scoliosis surgery, I wanted to be treated by

dr's who would know how what they did would affect the rest of my spine.There

support staff, especially there office manager Julius is superb, and that is

very important to me. I was like you for the last 6 months: living on narcotics

and not wanting that surgery. But then, I've NEVER had surgery and didn't want

to go there. But the narcs were having a serious affect on me and my

relationship with my husband. We have gone

through some STUFF the last few weeks, but thank God, we found a great counselor

to talk us through and out of the place we were. My husband is supportive, but

noone can know what it's like.

We will be leaving to house sit in the Santa Cruz area on Monday, the 10th, and

I will go straight from there to have my surgery on the 27th. I can't wait now,

after pushing it away for so long. And now that I have come to embrace the

surgery, I hurt more, my walking is more impaired: it's like I finally don't

have to fight against the surgery, so I can feel what this spinal stenosis has

done to me and be there with it. I gave my blood yesterday for the surgery and

am on track, emotionally and mentally to face this monster head on.

I'll still be able to get emails in S. C. the next couple weeks so keep those

letters coming. Thanks for caring.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbi,

I am also 56 yrs old and an RN- are you in Columbia, SC? I ask because I live in

SC, about an hour from Columbia. If you would prefer, please feel free to email

me directly. I had fusion at 45 from T1 to L5 and at thr present time I am

needing more surgery but I am putting it off until it is an absolute have-to. I

was told that I HAD to have the surgery 11 years ago, but I had just started to

have pain at that time. I would not do the same thing I did before, but only

because I feel, or rather know, that I did not do enough research prior to my

surgery. With only my one lumbar vertebra unfused, I have had deterioration

below the fusion and I have a lot of neck pain and have developed arthritis

there. I broke one of the rods and my fusion at waist level (at work). I think

that it you choose to have just the small surgery now, you may have to have more

surgery later. That is just my gut feeling, but the belief that curves don't

progress after puberty is so dangerously

wrong.But I'm sure you already are well aware of that fact! It amazes me that so

many doctors still believe it! My gyno is a little younger than me and she was

shocked that it was not true. The 'average' progression is 1 degree/ year. A

person in their 20's- 30's needs to know that and be realistic about where they

will probably be, with the conservative 'average', when they get to be older. I

have a C-curve and my progression in my 40's was over 4 degress/ year. I was at

68 degrees when I had the fusion. We all know that younger surgery patients heal

better, all other factors being similar. My hard old bones corrected to 35

degress, less than the 28 or so the dr hoped for, but it helped a lot of things.

My ribs got up off my hip bone on the left side and I gained over an inch! Plus

the back rib hump is much better.

But back to your situation (sorry for the veering off the subject- I like to

blame it on the Lyrica, but that just makes it a little worse )....... Have you

gotten at least a couple of opinions? The people who I am aware of in this area

who are sorry that they had surgery did not go to a scoliosis specialist. My

first eval was an ortho whose speciality was spines. The difference in his plan

and projected outcome, and the plan and projections from the dr who did my

surgery were night and day. Apples and oranges. I can't blame you for wanting

the least complicated surgery possible. I am so scared of another surgery and I

KNOW the dr who will do the surgery, if I ever break over and have it, is

absolutely, without question, the A Team. The best possible out there. But I

still don't want surgery. I live on narcotics from the pain clinic and thank God

for them every day. I shudder to remember how things were when I was in school

in the early 70's- terminal patients, with days

to live, writhing in pain, were given their MS04 10mg IV every 4 hrs, and no

sooner. I thought it was horrible then and it helped me to be a good Hospice

nurse when I did that job. If I didn't have the meds I would be either dead, or

in the OR ASAP. Oh well..... I have wandered off topic again so I'll sign off.

Good luck with your decision- let us know what you decide. Bea

debbiebrickley <debbiebrickley@...> wrote:

I am a 56 yo female that has resisted scoliosis surgery all my life.

Also am an Rn and have seen several postop patients sorry that they

have had scoliosis surgery. Now I HAVE to have surgery as I am taking

so much narcotic for spinal stenosis with SEVERE left sciatica that it

is affecting my relationship and me. I have a right 52 degree thoracic

curvature and now a compensating lumbar 40 degree curve. I am to have a

spinal fusion at L4-5, S1 at the end of Sept. I won't let them do my

whole spine but they would like to. I am wondering if anyone has had

this situation and did it help? I am so afraid that I might be trading

one pain for another. My chiro is afraid that the pressure on L2-3 my

cause the same problem there.

Any feedback?

Debbie in Columbia

[Guest guest]

Wow, sometimes I can't believe that I wrote all that.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbie,.. Your town sounds neat. I would so love to see the entire

US. My husband and I love to travel by RV because I can lie down while we

travel, but right now he can't get away, and we don't have our finances at a

place where we can set out for the trip to the west that we both want to make.

But someday we are going to visit your part of the country.

I am so happy for you, that you have reached a peace about your upcoming

surgery. Have they given you confidence that your pain will be significantly

decreased? I sure hope so. As far as narcotics for me- I have a hyper system. I

can take a ton, dose-wise, and it does not affect my mood or functioning. I get

no " buzz " , no desire or need to increase the dose. No problems at all. When I

have had meds added it has always helped more. Lyrica was the most recent and

has helped so much. My pain specialists have told me that even with surgery they

don't think I would ever be able to get completely off narcotics. There is too

much going on in the lower lumbar and sacrum. I know they are going on the

patients they see who continue to have pain. Just like we know- people who do

well and have no issues are not seeking support groups and pain specialists. I

guess I do well enough often enough that I am afraid to rock the boat. My med dr

told me he would not have surgery unless he

absolutely couldn't stand not to. So I'm in a different situation from yours.

And as I said, I am so happy for you. It is a great feeling to finally stop

fighting a change that is really needed.

I know you're glad you found a counselor. This chronic pain can be a

relationship hardship for sure. My husband has been wonderful but we have had

our difficulties in the past that a wonderful counselor saved us from. Now with

my pain, especially when I haven't used good sense and I have done more than I

should without resting, I feel so guilty that he misses going somewhere because

of my problem. No easy answers at all. I hate feeling like I'm lying around when

there is so much to take care of around here. But I hope that if I ever have to

have another surgery that I feel as good about it as you do. I know you will do

well. I will keep you in my prayers and will be anxious to hear from you after

it is all over. Best of everything. I hope you have a good time house sitting.

Bea

debbie brickley <debbiebrickley@...> wrote:

Hi, Beverlee: No, I live in a little town in California called Columbia; a state

park,as a matter of fact right out of the Gold Rush era. Thanks for writing

back. Now to respond to your letter: I have known that curves progress 1 degree

a year for many years. I don't think mine has, or should I say my thoracic curve

has not progressed, but now I see that my lumbar curve has taken over, now to 40

degrees; and causing my spinal stenosis, which is why I need surgery. As I have

told many folks, I can deal with my scoliosis, and have, for many years. It's

this ol' spinal stenosis and leg pain that wants me to go screaming into the

night. Yes, I have gotten three opinions this summer from scoliosis experts. One

in Baltimore, at the Univ. of Md, one at Stanford, and at UCSF. I really liked

the guy in Balitimore, even though my daughter lives there, it was pretty hard

to see how we could make that work. He is the guy that recommended me to the

surgeon at UCSF, Serena Hu.

The

Stanford dr. was useless. Pretty much told me, " if the epidural blocks don't

help, surgery won't help, and do you realize how serious your problem is? " But I

have faith in Dr. Hu, and it seems like the universe is falling into place after

I finally got through that wall that was between me and the decision to have my

surgery. I can't tell you all the things that are really coming together for me.

And the Spine Clinic at UCSF: they see so many spines and scoliosis; that was my

aim; even if I didn't have full scoliosis surgery, I wanted to be treated by

dr's who would know how what they did would affect the rest of my spine.There

support staff, especially there office manager Julius is superb, and that is

very important to me. I was like you for the last 6 months: living on narcotics

and not wanting that surgery. But then, I've NEVER had surgery and didn't want

to go there. But the narcs were having a serious affect on me and my

relationship with my husband. We have gone

through some STUFF the last few weeks, but thank God, we found a great counselor

to talk us through and out of the place we were. My husband is supportive, but

noone can know what it's like.

We will be leaving to house sit in the Santa Cruz area on Monday, the 10th, and

I will go straight from there to have my surgery on the 27th. I can't wait now,

after pushing it away for so long. And now that I have come to embrace the

surgery, I hurt more, my walking is more impaired: it's like I finally don't

have to fight against the surgery, so I can feel what this spinal stenosis has

done to me and be there with it. I gave my blood yesterday for the surgery and

am on track, emotionally and mentally to face this monster head on.

I'll still be able to get emails in S. C. the next couple weeks so keep those

letters coming. Thanks for caring.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Debbi,

I am also 56 yrs old and an RN- are you in Columbia, SC? I ask because I live in

SC, about an hour from Columbia. If you would prefer, please feel free to email

me directly. I had fusion at 45 from T1 to L5 and at thr present time I am

needing more surgery but I am putting it off until it is an absolute have-to. I

was told that I HAD to have the surgery 11 years ago, but I had just started to

have pain at that time. I would not do the same thing I did before, but only

because I feel, or rather know, that I did not do enough research prior to my

surgery. With only my one lumbar vertebra unfused, I have had deterioration

below the fusion and I have a lot of neck pain and have developed arthritis

there. I broke one of the rods and my fusion at waist level (at work). I think

that it you choose to have just the small surgery now, you may have to have more

surgery later. That is just my gut feeling, but the belief that curves don't

progress after puberty is so dangerously

wrong.But I'm sure you already are well aware of that fact! It amazes me that so

many doctors still believe it! My gyno is a little younger than me and she was

shocked that it was not true. The 'average' progression is 1 degree/ year. A

person in their 20's- 30's needs to know that and be realistic about where they

will probably be, with the conservative 'average', when they get to be older. I

have a C-curve and my progression in my 40's was over 4 degress/ year. I was at

68 degrees when I had the fusion. We all know that younger surgery patients heal

better, all other factors being similar. My hard old bones corrected to 35

degress, less than the 28 or so the dr hoped for, but it helped a lot of things.

My ribs got up off my hip bone on the left side and I gained over an inch! Plus

the back rib hump is much better.

But back to your situation (sorry for the veering off the subject- I like to

blame it on the Lyrica, but that just makes it a little worse )....... Have you

gotten at least a couple of opinions? The people who I am aware of in this area

who are sorry that they had surgery did not go to a scoliosis specialist. My

first eval was an ortho whose speciality was spines. The difference in his plan

and projected outcome, and the plan and projections from the dr who did my

surgery were night and day. Apples and oranges. I can't blame you for wanting

the least complicated surgery possible. I am so scared of another surgery and I

KNOW the dr who will do the surgery, if I ever break over and have it, is

absolutely, without question, the A Team. The best possible out there. But I

still don't want surgery. I live on narcotics from the pain clinic and thank God

for them every day. I shudder to remember how things were when I was in school

in the early 70's- terminal patients, with days

to live, writhing in pain, were given their MS04 10mg IV every 4 hrs, and no

sooner. I thought it was horrible then and it helped me to be a good Hospice

nurse when I did that job. If I didn't have the meds I would be either dead, or

in the OR ASAP. Oh well..... I have wandered off topic again so I'll sign off.

Good luck with your decision- let us know what you decide. Bea

debbiebrickley <debbiebrickley@...> wrote:

I am a 56 yo female that has resisted scoliosis surgery all my life.

Also am an Rn and have seen several postop patients sorry that they

have had scoliosis surgery. Now I HAVE to have surgery as I am taking

so much narcotic for spinal stenosis with SEVERE left sciatica that it

is affecting my relationship and me. I have a right 52 degree thoracic

curvature and now a compensating lumbar 40 degree curve. I am to have a

spinal fusion at L4-5, S1 at the end of Sept. I won't let them do my

whole spine but they would like to. I am wondering if anyone has had

this situation and did it help? I am so afraid that I might be trading

one pain for another. My chiro is afraid that the pressure on L2-3 my

cause the same problem there.

Any feedback?

Debbie in Columbia