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pregnancy and flat back syndrome

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Hi,

I'm new to any forum, so please bear with me if I do something

strange. I had harrington rods " installed " down to L4 in 1986. For

the past six years I have been having bad pain, stiffness, etc. Went

to doctors galore to be sent to PT. Two years ago, the pain started to

be sharp and go down my leg. Back to doc, told I have a herniated

disc, back to PT. Still dealing with pain more now, decided to just

have some sort of surgergy for a slipped disk amd went back to the doc

who did my surgery, well, find out that is not what I have at all but

that it is flat back syndrome with degenerated discs at L4 and L5.

Plus some other things that I truthfully can't remember because I was

in shock to hear I needed another major back surgery. I do intend to

get a third opinion, however, my husband and I were in the process of

trying to start a family and now I am told that I need a surgery. I

was told that we could have a child first but, as you can imagine,

that brings its problems. Having the surgery first brings another set

of problems. Can anyone help me in this? Has anyone had this surgery

(sorry am not sure what it is called yet. They would have to take out

the lowest rod and do some fusing. Supposedly will give me some

natural curve and relieve the pain) Anything anybody can tell me will

be appreciated. Thanks, Debbie

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Hi Debbie,

Welcome to the forum. I am sorry to hear about your news.

There is plenty of reading to do here that can educate yourself.

Look under files and links on this website for some light reading.

Flatback is corrected by revision surgery and is limited to the

expertise of only a few scoliosis revisionist surgeons.

Where are you located? I am sure someone here can send you

in the right direction. Be sure to get at least two or three opinions.

Anyway, as far as pregnancy goes, I had my child at 40 while I

still had the harrington rod in place.

Though I made it through the pregnancy and had a C section delivery, it

also brought on the onset of my lumbar collapse which progressed

the flatback a lot faster than it would have happened. (No regrets mind

you). My son was six when I finally had surgery. My surgeon,

Glazer, in Boston, was quick to determine I was wheel chair

bound within 6 months. Revision for me consisted of additional fusion

lumbar to sacrum, with spacer inserts. Removal of the harrington rod.

A new rod in place with a natural lordosis in place, with the insertion of

8 pedical screws. The surgery was done this past April. My post operative

journal is posted under files if you want to read it. You are in the right

place, the people here can help direct you, educate you and support you.

There are people here from all walks of the flatback life. Emotionally, I

am sorry for what you are going through and I am sorry you are suffering but

suffering with knowledge is ooohhh so much better! Chin up!

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Hi Debbie,

Welcome to the group. Do not worry about doing anything " right "

or " wrong " here...just jump in...we are a friendly group.

If you have had a chance to go back over old posts and look through

the files you will see that you story is very familair to most of

us. You don't say how old you are...which probably would place some

weight to the answer or advice a doctor or any of us might give on

the question.

For me, I had my one and only child at 40 and wasn't diagnosed with

flatback until 47...surgery at 48, two years ago. By then I was well

past the picking up child/after child stage. In fact...my surgery

probably had a direct effect on helping my son master some life

skills that many defer simply because it is easier as mothers to " do

it ourselves " than deal with the messes little kids have while on

the learning curve.

It is hard to know what to suggest...on the one hand...if you are

limited in your mobility and in agony now, I can not imagine what

the later stages of your pregnany will be like with the weight of a

baby pressing on nerves and low back. And course you will be limited

in your ability to take pain meds too.

On the other hand...even at two years post-op I would not want to

have to repeatedly lift a young child...off the floor, into a

carseat...but I am fused to the sacrum...you maybe will not be fused

that far down?

I know we have members who care for their young grandkids, so they

may have more insight...and Lorrie had her surgery when her daughter

was still very young...so I know she will have much to add on the

challenges of parenting a baby while recovering from this big of a

surgery(ies).

Where in the country are you? I do hope you get another opinion or

two and I would definitly put this on the question list for any

surgeon you consult...they will no doubt have an opinion on this

subject of timing. This surgery is a biggie, and you will want to

fully investigate the credentials of anyone you are considering for

surgery. It is lucky that you did not go ahead with the

decompression/laminectomy until you determine the final course of

action that is best for you. I wasn't clear on this point: Is the

doctor that diagnosed the flatback the same one who has been putting

you through the " you have a herniated disc...go to PT " routine?

Also...I would recommend you carefully question your doctors on the

fact that you will be painfree after surgery. So far, I am...and my

doctor said that he has more luck with patients where he is only

dealing with nerve compression type issues. Still. Painfree is

probably best thougt of as a goal in this surgery ....but never a

promise. If that is a promise you are getting...I am afraid you

could be disappointed.

I want to also say that because my childbearing attempts didn't

start until later in life I knew that there was a chance we would

not be able to bear our own child...and I came to realize there were

many paths to parenthood. No matter what comes, if you choose to be

a parent, I know it will happen for you to...one way or the other.

As we are fond of saying, remember that this isn't emergency

surgery...you have plenty of time to figure out what to do...so take

your time and consider everything!

Take Care, Cam

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Dear Debbie,

Welcome to the group, and I'm sorry that you are in the midst of dealing with your scoliosis/flatback.We are here to be a support while you are traveling through Flatback, I myself am three and 3/4 out from my last revision( the surgery is called revision/ fusion to the sacrum) and I'm doing very well. I know all this can be scary, but if you bite off one piece at a time it's doable to get through it.

Starting a family with diagnosised Flatback is something you should talk to your doctor about. I know I had it following the birth of my first child, and went undiagnosised, and though I had pain and was limited in ability to walk for any distance, went on to have two more children. I don't know if it's better to wait to have kids till after the surgery or to have them before, something to disguse with a doctor. A lot of us who are having the surgery are in our forties, and seem to be done having kids, so it would be good to talk to your doc and get his/her opinion. I haven't meet in the groups anyone who has had children after revision, but I believe said she's heard of some, and maybe she can put you in touch with some of them.

Where are you located, and who did your orginal surgery, and you are still seeing him? Flatback surgery is very complicated, and it's good to get the opinion of a very qualified doc. Unfortunately there is only a couple of handfuls of these types of doc's across the country, so getting second and third opinions sometimes means travel. I had my surgery in Denver with Dr. Anant Kumar and Dr. O'Brien ( he's now in Florida). I have had my Harrington Rod removed, and a decompression done for severe steniosis, fusion to the sacrum, and an extention of my fusion up higher in my thorasic spine to t-1. I have two long rods, one short rod, twenty some screws, cages and bolts. My story is in the files section of the site under member stories, I'm from Colorado, and my post-revision X-rays are under pictures, in the misc file. Good place to start in the group is the member stories, you will see so much of yourself in the stories, I know I did, and got to know the members that posted there so much better.

I feel the surgery gave me a better quality of life, the pain for me is gone, I'm upright, level and feeling good. Before surgery I couldn't walk much before I had to sit down and wait for the pain to resolve, same with standing. It's so good to be able to walk as much as I want and to stand in line anywhere. Best is having the pain gone. I'm lucky, I only went into the surgery looking for the pain to be reduced to a level I could tolerate. I was lucky and got more. Most doc's that do this surgery will never guarntee that you'll be painfree afterwards, but even if all I got was a reduction in pain by half, my life would have been so much more livable, and I would have been a lot less disabled.

So standing at the beginning of this, I'd say be seen by good doc's, get more than one opinion, and take the time to weigh what they say. As Cam our leader says, it isn't an emergency, you have time to weigh it all out and make a decision that works for you. Anything we can do to support you just let us know! We aren't doc's, but we have been through it, or are going through it, and can lend an ear and support.

Colorado Springs

[ ] pregnancy and flat back syndrome

Hi,I'm new to any forum, so please bear with me if I do somethingstrange. I had harrington rods "installed" down to L4 in 1986. Forthe past six years I have been having bad pain, stiffness, etc. Wentto doctors galore to be sent to PT. Two years ago, the pain started tobe sharp and go down my leg. Back to doc, told I have a herniateddisc, back to PT. Still dealing with pain more now, decided to justhave some sort of surgergy for a slipped disk amd went back to the docwho did my surgery, well, find out that is not what I have at all butthat it is flat back syndrome with degenerated discs at L4 and L5. Plus some other things that I truthfully can't remember because I wasin shock to hear I needed another major back surgery. I do intend toget a third opinion, however, my husband and I were in the process oftrying to start a family and now I am told that I need a surgery. Iwas told that we could have a child first but, as you can imagine,that brings its problems. Having the surgery first brings another setof problems. Can anyone help me in this? Has anyone had this surgery(sorry am not sure what it is called yet. They would have to take outthe lowest rod and do some fusing. Supposedly will give me somenatural curve and relieve the pain) Anything anybody can tell me willbe appreciated. Thanks, Debbie

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I had my revision done in October 2002, when I was 29. At the time, I was absolutely clear that for me there was no other choice, regardless that I might want children at some point. I just was not in any physical condition to even consider it with the amount of pain that I was in and how incapable I was becoming.

As it happens, in the end I didn't need to be fused to the sacrum, although they thought it was pretty likely, because they were able to get adequate correction only going to L4. My surgeon asked me if I had children already, but that was all. No one has ever said anything to indicate that I should not try once healed. I have gone on to have other problems, as I have developed stenosis (narrowing of the spinal canal) below the fusion, and will probably need another surgery to take the fusion all the way to the sacrum with the stenosed levels decompressed. Still, with the new problems these issues have brought, again no doctor has suggested to me that I should not have children if I want to.

So, we're seeing how it goes - if it happens, it happens. There are other problems that are more likely to prevent it than my back, and that scare me more than the back (I was pregnant back at the end of 1997/start of 1998, except that I was so ill no one knew that was what was wrong, the doctor thought I had leukaemia because of all things that were going on - *not* something I want a repeat of if it's avoidable). There aren't any other routes to parenthood for me. Adoption just isn't going to happen because of the degree of disability I still have combined with my age - unless you're perfect, oh so perfect, it's very unlikely you'll get a child and the wait is long - of course, the longer you wait, the older you are and the less likely that you'll be chosen. And fostering is not something my husband would cope with and quite frankly I don't feel physically up to the task of dealing with the kind of disturbed children that many foster homes have to deal with. So really, for us, if we are to have children it's the old fashioned way or not at all.

As to pregnancy when fused to the sacrum, it's certainly possible. I guess it's relatively uncommon simply because there aren't that many women of child bearing age who are fused that far, but among others Suzanne/SB was fused to the sacrum in her teens and has children as detailed in another recent discussion on the board. I've definitely heard of other people as well.

Regarding having children when disabled to a greater or lesser extent, it seems to me that the most important thing is putting in the effort that you can. I used to be really cross as a child that my mother would not let us go down to the park unsupervised, or play outside the very small back yard unsupervised, and yet would not be willing to take us 1/4 mile to the park where she could sit on a bench and read just as well as she could sit on her sofa at home and read. My aunt on the other hand was severely disabled, but did the most with her children that she was able - in practice little or no more than my mother with us, but my cousin remembers it with happiness that she did stuff with them, rather than my irritation that there were a lot of restrictions which we could well have done without with just a tiny bit of effort made. I hope that makes sense rather than just reading as an excuse for a load of arbitrary bitterness!

I'll stop waffling now anyway - better get some loose ends tied up before I leave work.

titch

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Hi, I'm new to this group but wanted to chime in on this topic. I

was fused from T4-L4 in 1989 with Harrington/Luque rods at age 13.

My curves went from the 65-70 ranges to settle at 50-55 degrees.

I'm not diagnosed with flatback (is it even possible with the Luque-

style rods??), but I've had some problems that seem consistent with

it. I've had a lot of back pain, and had problems standing straight

up unless my knees were bent. I had a few back x-rays done, and

they were looked at by " regular " orthopedists who said " Wow, that's

quite a back you have " and they said the fusion looks solid to

them. No other comments on anything regarding why my lower back

hurts so much. Then I started having problems walking (would limp,

legs would get very heavy and not lift), and had tingling/numbness

in the legs. It has spread to other parts of the body, but my legs

are still the most severely affected. I was married at age 24, then

at age 26, I was diagnosed with multiple sclerosis. I had two kids

afterwards (Kylie is 15mo and Mariela is 2.5yr). I didn't carry

either one fullterm, because my abdomen couldn't fit any more in

it! They were both about a month early and were 5lb 10oz and 5lb

3oz but healthy. The pregnancies were hard on my back as far as

pain goes, but they can be hard on a " normal " woman, so it's hard

for me to compare myself. Some of my problems seem like they could

be caused by either flatback or by MS, so I am trying to research

the flatback stuff a little more.

Since the second baby, my MS has gone out of control. I currently

use a walker and a wheelchair. In addition to mobility problems, I

also have bladder & bowel issues. I've started chemo treatments for

the MS, and as of the last couple of months, things seem to have

stabilized. There's no treatment for it, just things that try to

slow it down. Through a state program I get 5hr/day of in-home help

with laundry, driving to dr appt, cleaning, grocery shopping, etc.

I am also getting an electric wheelchair soon, which should help me

get around easier than the manual chair.

Anyways, I guess I just wanted to comment on how much I agree with

your statement of being a parent with whatever level of disability

you may have. I can't take my kids to a park, or even outside to

play. But I try to do as much as possible inside with them. Even

though I can't be physically active with them, the way I had always

imagined I would be, I still try to do other things to make good

memories with them. I hope I can continue this as they get older

too.

>

> I had my revision done in October 2002, when I was 29. At the

time, I was

> absolutely clear that for me there was no other choice, regardless

that I

> might want children at some point. I just was not in any physical

condition

> to even consider it with the amount of pain that I was in and how

incapable

> I was becoming.

>

> As it happens, in the end I didn't need to be fused to the sacrum,

although

> they thought it was pretty likely, because they were able to get

adequate

> correction only going to L4. My surgeon asked me if I had

children already,

> but that was all. No one has ever said anything to indicate that

I should

> not try once healed. I have gone on to have other problems, as I

have

> developed stenosis (narrowing of the spinal canal) below the

fusion, and

> will probably need another surgery to take the fusion all the way

to the

> sacrum with the stenosed levels decompressed. Still, with the new

problems

> these issues have brought, again no doctor has suggested to me

that I should

> not have children if I want to.

>

> So, we're seeing how it goes - if it happens, it happens. There

are other

> problems that are more likely to prevent it than my back, and that

scare me

> more than the back (I was pregnant back at the end of 1997/start

of 1998,

> except that I was so ill no one knew that was what was wrong, the

doctor

> thought I had leukaemia because of all things that were going on -

*not*

> something I want a repeat of if it's avoidable). There aren't any

other

> routes to parenthood for me. Adoption just isn't going to happen

because of

> the degree of disability I still have combined with my age -

unless you're

> perfect, oh so perfect, it's very unlikely you'll get a child and

the wait

> is long - of course, the longer you wait, the older you are and

the less

> likely that you'll be chosen. And fostering is not something my

husband

> would cope with and quite frankly I don't feel physically up to

the task of

> dealing with the kind of disturbed children that many foster homes

have to

> deal with. So really, for us, if we are to have children it's the

old

> fashioned way or not at all.

>

> As to pregnancy when fused to the sacrum, it's certainly

possible. I guess

> it's relatively uncommon simply because there aren't that many

women of

> child bearing age who are fused that far, but among others

Suzanne/SB was

> fused to the sacrum in her teens and has children as detailed in

another

> recent discussion on the board. I've definitely heard of other

people as

> well.

>

> Regarding having children when disabled to a greater or lesser

extent, it

> seems to me that the most important thing is putting in the effort

that you

> can. I used to be really cross as a child that my mother would

not let us

> go down to the park unsupervised, or play outside the very small

back yard

> unsupervised, and yet would not be willing to take us 1/4 mile to

the park

> where she could sit on a bench and read just as well as she could

sit on her

> sofa at home and read. My aunt on the other hand was severely

disabled, but

> did the most with her children that she was able - in practice

little or no

> more than my mother with us, but my cousin remembers it with

happiness that

> she did stuff with them, rather than my irritation that there were

a lot of

> restrictions which we could well have done without with just a

tiny bit of

> effort made. I hope that makes sense rather than just reading as

an excuse

> for a load of arbitrary bitterness!

>

> I'll stop waffling now anyway - better get some loose ends tied up

before I

> leave work.

>

> titch

>

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Debbie,

I had harrington rod surgery in 1976 and then had an osteotomy to

restore the lost lordosis in 1990. I was 30. I got pregnant a year and

a half later and had no problems carrying my daughter. The disks below

my fusion did deteriorate and I ended up going in for additional

surgery but I had a good 13 year run. When I was pregnant I never felt

better probably because I was very happy. I think pregnancy is hard on

all backs. For me, I felt I needed to take care of my flat-back before

getting pregnant.

Welcome to the group!

Ann

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Hi,

I would like to thank everyone for their responses, insight, and

understanding. To answer some of your questions...I am 34 and had my

original surgery with Dr. Neuwirth at the Spine Institute of NY. This

new diagnonsis of Flat back, etc. was with his partner Dr. Casden. I

went to him rather than Dr. Neuwirth because I read that Casden did

surgeries for herniated disks (which is what I thought I had). I

spoke today with my OB, as I have recovered from a complicated

myomectomy (removal of a whopping fibroid). Had this done a little

over a year ago. I needed her input as far as what is best for me.

She basically said it was a hard decision but that time isn't on my

side. If I were to have this surgery now, I was told I'd have to wait

6-9 months before trying to conceive. Once we try that could take

more time...We have been trying for the past four months, so I know

how it could take time. All that said, if I wait to have a child, I

could be around 37 or older. She advised me that there are pain meds

out there that don't affect a baby, and that continuing to exercise is

fine with her. Exercise helps the stiffness soooo much. Not the pain

though...I have been reading a lot of the posts on this site and am

getting a more formed idea of what I have and that it isn't uncommon

among people with Harrington rods. I am worried that if I wait to

have the surgery until a year or so after my child is born that I will

have pain in all aspects of the beginning of this child's life.

Right now, the pain is in my right hip and when I walk at sporatic

times the pain turns sharp and makes my leg numb. Stiffness is

anytime I am sitting or sleeping. My husband and i are going to talk

with my pastor tomorrow for another take on this. I guess, if I had

the surgery now, my concern is would i actually get rid of the pain

and be able to have a normal pregnancy. thanks again for your input,

I feel soooo much better being able to discuss this.

>

> Debbie,

> I had harrington rod surgery in 1976 and then had an osteotomy to

> restore the lost lordosis in 1990. I was 30. I got pregnant a year and

> a half later and had no problems carrying my daughter. The disks below

> my fusion did deteriorate and I ended up going in for additional

> surgery but I had a good 13 year run. When I was pregnant I never felt

> better probably because I was very happy. I think pregnancy is hard on

> all backs. For me, I felt I needed to take care of my flat-back before

> getting pregnant.

>

> Welcome to the group!

> Ann

>

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I had forgotten these conversations with Dr. Bleck until I was reading

the thread.

When I had my long HR removed in 1974, I remember Dr. Bleck and his

team being concerned about what pregnancy would do my back. It was

unclear to me whether or not I should have children. I don't think

they knew what would happen. I only had one son, seven years later,

and had my first onset of sciatica in the late stages of pregnancy.

When the weight was dropped, the pain was gone.

Dr. Bleck also stressed that I should not ever get " fat " . He said

that every time he saw me. I was actually fairly thin for my height

at that time. It is interesting today, that the doctors I have seen

recently do not say that loosing weight will help the pains etc. Maybe

when DDD sets in the damage is done. I currently weigh about 25

pounds more than I did in 1974. I actually thought that loosing weight

might help me, and I recently dropped about 5 pounds through swimming

and cutting out the ice cream at night :). As women we tend to carry

our excess weight in the front, and that does put a strain on our

spine, much the same as pregnancy did - but hopefully we never get

that large again. However, I do know that if you hurt really bad, and

I have had some of those weeks, that it is impossible to exercise.

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Hi Debbie, The surgery is called revision and an orthopedic spine

specialist that does revision surgeries on flat back can probably

give you some options on what to do about having a family now or

after revision. I think theres a list of Dr's in the file section.

My revision surgery was 17 months ago I am 46 so I already had 2

kids by the age of 31 I dont plan on having more. there are many here

that can help you who post often. Good luck to you and welcome.

>

> Hi,

> I'm new to any forum, so please bear with me if I do something

> strange. I had harrington rods " installed " down to L4 in 1986.

For

> the past six years I have been having bad pain, stiffness, etc.

Went

> to doctors galore to be sent to PT. Two years ago, the pain started

to

> be sharp and go down my leg. Back to doc, told I have a herniated

> disc, back to PT. Still dealing with pain more now, decided to just

> have some sort of surgergy for a slipped disk amd went back to the

doc

> who did my surgery, well, find out that is not what I have at all

but

> that it is flat back syndrome with degenerated discs at L4 and L5.

> Plus some other things that I truthfully can't remember because I

was

> in shock to hear I needed another major back surgery. I do intend

to

> get a third opinion, however, my husband and I were in the process

of

> trying to start a family and now I am told that I need a surgery. I

> was told that we could have a child first but, as you can imagine,

> that brings its problems. Having the surgery first brings another

set

> of problems. Can anyone help me in this? Has anyone had this

surgery

> (sorry am not sure what it is called yet. They would have to take

out

> the lowest rod and do some fusing. Supposedly will give me some

> natural curve and relieve the pain) Anything anybody can tell me

will

> be appreciated. Thanks, Debbie

>

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Having your surgery 17 months ago, how do you feel now? HOw long

until you felt like your normal self? Are you glad you had the

revision and do you still have any pain?

> >

> > Hi,

> > I'm new to any forum, so please bear with me if I do something

> > strange. I had harrington rods " installed " down to L4 in 1986.

> For

> > the past six years I have been having bad pain, stiffness, etc.

> Went

> > to doctors galore to be sent to PT. Two years ago, the pain started

> to

> > be sharp and go down my leg. Back to doc, told I have a herniated

> > disc, back to PT. Still dealing with pain more now, decided to just

> > have some sort of surgergy for a slipped disk amd went back to the

> doc

> > who did my surgery, well, find out that is not what I have at all

> but

> > that it is flat back syndrome with degenerated discs at L4 and L5.

> > Plus some other things that I truthfully can't remember because I

> was

> > in shock to hear I needed another major back surgery. I do intend

> to

> > get a third opinion, however, my husband and I were in the process

> of

> > trying to start a family and now I am told that I need a surgery. I

> > was told that we could have a child first but, as you can imagine,

> > that brings its problems. Having the surgery first brings another

> set

> > of problems. Can anyone help me in this? Has anyone had this

> surgery

> > (sorry am not sure what it is called yet. They would have to take

> out

> > the lowest rod and do some fusing. Supposedly will give me some

> > natural curve and relieve the pain) Anything anybody can tell me

> will

> > be appreciated. Thanks, Debbie

> >

>

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Yes I'm glad I had the revision, and yes I have pain but not the

same as before the revision There is no garantee of pain free

although many are. But where I was before revision surgery I knew I

was not going to get better with every thing else I tried. I would

continued to stoop still, as I was noticing I was getting worse by

the year I couldn't walk long distencess or stand for a long time

without needing to sit. And if I sat too long I would need to get up

and stretch. I had DDD and moderate to severe stenosis, and of course

flatback. Now my clothes look better, I stand straighter,I don't

get tired and I can walk long distancess so yes I am glad to have had

the surgery. the pain I have now is controled with tramadol.

> > >

> > > Hi,

> > > I'm new to any forum, so please bear with me if I do something

> > > strange. I had harrington rods " installed " down to L4 in

1986.

> > For

> > > the past six years I have been having bad pain, stiffness,

etc.

> > Went

> > > to doctors galore to be sent to PT. Two years ago, the pain

started

> > to

> > > be sharp and go down my leg. Back to doc, told I have a

herniated

> > > disc, back to PT. Still dealing with pain more now, decided to

just

> > > have some sort of surgergy for a slipped disk amd went back to

the

> > doc

> > > who did my surgery, well, find out that is not what I have at

all

> > but

> > > that it is flat back syndrome with degenerated discs at L4 and

L5.

> > > Plus some other things that I truthfully can't remember because

I

> > was

> > > in shock to hear I needed another major back surgery. I do

intend

> > to

> > > get a third opinion, however, my husband and I were in the

process

> > of

> > > trying to start a family and now I am told that I need a

surgery. I

> > > was told that we could have a child first but, as you can

imagine,

> > > that brings its problems. Having the surgery first brings

another

> > set

> > > of problems. Can anyone help me in this? Has anyone had this

> > surgery

> > > (sorry am not sure what it is called yet. They would have to

take

> > out

> > > the lowest rod and do some fusing. Supposedly will give me some

> > > natural curve and relieve the pain) Anything anybody can tell

me

> > will

> > > be appreciated. Thanks, Debbie

> > >

> >

>

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