Newbie from the UK

August 24, 2006

Hi Kat,

Did you have some kind of accident that caused your rod to break? If

not, it is probably due to your original fusion not being solid. That

would cause movement in your spine that adds stress to the rod that can

eventually cause it to break.

When they do your surgery to remove the broken rod they will also

explore your spine for non-unions in your fusion (medical term:

pseudarthrosis). If the surgeon finds any pseudarthrosis they will fuse

it again and most likely implant another rod to stabilize the " new "

fusion. Also, if you do have flatback they might have to do a revision

of your lumbar spine to correct that. If that's the case, you will have

to wear another brace following surgery.

Revision surgery to correct Flatback Syndrome is what most of the folks

in this forum have experienced or are preparing for, so you'll have a

lot of support and answers to your questions in that regard. As for

your pain comparison: I guess it depends on how things go and what your

personal pain threshold is. You might want to just expect what you went

through the first time around and then if it's not so bad you'll be glad

but I can't imagine that it would be worse (you've had two children and

in my opinion, it's not worse than childbirth! ;o)). You should

definitely be in less pain after this surgery, as it sounds like you are

really hurting right now. You'll of course have to go through the

initial healing period following the surgery but then you should be much

better.

I guess I have to ask: why has it taken 3-4 years for you to do

something to correct your broken rod? Have you been in pain that long

or has it onset recently? Also, if you are scheduled for surgery, what

has your surgeon told you to expect? He/she should have some sort of

plan going into surgery and shared that with you. Have you had any

tests i.e., MRI, CT scans, etc. to determine what's going on?

Good luck and welcome to the group! )

Kelley

>

> Hi,

> I found this group while trying to find other people with similar

> problems to myself, I hope you don't mind me joining this group.

>

> I am 31, a Mum of 2 and had single Harrington Rod surgery in 1991 at

> the age of 15 for a double major curve, top 39 deg bottom 49 deg,

> rod and fusion from T2 to L2.

>

> I found out 3 or 4 years ago that my rod had snapped in the middle

> and just recently found out it was due to Flatback Syndrome and lack

> of Sagittal alignment. I am in so much pain now its ridiculous, I

> have kind of collapsed to the left, as if I have a single curve in

> the middle, I guess due to my rod being broken.

>

> I am due for my Second surgery in 11 weeks time and am scared out of

> my skin. I know this is due to not really knowing what to expect.

>

> Can anyone out there enlighten me please?

>

> Is the pain better or worse on second surgery?

> Will I be in less pain after the surgery?

> Will I have to wear a brace again?

>

> Hoping for a swift answer,

>

> Kat

>

August 24, 2006

Dear Kat,

Welcome here to the group, sorry you are going through what you are, that surgery is coming up again. We are glad to have another member from the UK, and while your medical system differs from ours, we have the commonality of Flatback we are dealing with. My best friend is from just outside London, she's so much fun, she's currently in Oregon, and she and I hope to take a trip to her homeland someday. Here goes, I'll try to answer as much as I can.

It might help us if you gave us more details about the surgery you are having. Will you have your fusion extended to the sacrum? Have they mentioned that you might have non-unions in your previous fusion mass? What do they say broke your rod?

I have had two revision surgeries, currently fused T-1 to S-1. I had my Harrington Rod surgery in 1973, in San Francisco, and back then the pain control following surgery was awful. Since your surgery was in the 90's, I'm sure it was better then, but alas this is a big painful surgery, but I never had out of control pain like I did back then.

My first revision was an anterior/posterior surgery, 10 plus hours. I was on a vent for a day and in ICU following surgery for a day, then went up to a regular ortho room. They had me up walking the next day, a little scary but I did fine. Painful yes, but the med's are much better. I did wear a brace, but some doc's don't require them, mine loves them, and I wore it for three months following surgery. After my last revision, and the healing recovery period was over I was painfree, and still am almost four years later. I was looking for the surgery to reduce my pain level, even if it reduced it by fifty percent I would be so much better off, but when I came out pain free no one could have been happier. Most here have had a reduction in pain after surgery, some are pain free like me, and a couple who still have considerable pain. I think almost everyone is glad they did have the surgery. I just looked at it like I wasn't going to get any better without it, so why not take the shot.

Glad to have you among us, and look forward to hearing more from you!

Colorado Springs

[ ] Re: Newbie from the UK

Hi Kat,Did you have some kind of accident that caused your rod to break? Ifnot, it is probably due to your original fusion not being solid. Thatwould cause movement in your spine that adds stress to the rod that caneventually cause it to break.When they do your surgery to remove the broken rod they will alsoexplore your spine for non-unions in your fusion (medical term:pseudarthrosis). If the surgeon finds any pseudarthrosis they will fuseit again and most likely implant another rod to stabilize the "new"fusion. Also, if you do have flatback they might have to do a revisionof your lumbar spine to correct that. If that's the case, you will haveto wear another brace following surgery.Revision surgery to correct Flatback Syndrome is what most of the folksin this forum have experienced or are preparing for, so you'll have alot of support and answers to your questions in that regard. As foryour pain comparison: I guess it depends on how things go and what yourpersonal pain threshold is. You might want to just expect what you wentthrough the first time around and then if it's not so bad you'll be gladbut I can't imagine that it would be worse (you've had two children andin my opinion, it's not worse than childbirth! ;o)). You shoulddefinitely be in less pain after this surgery, as it sounds like you arereally hurting right now. You'll of course have to go through theinitial healing period following the surgery but then you should be muchbetter.I guess I have to ask: why has it taken 3-4 years for you to dosomething to correct your broken rod? Have you been in pain that longor has it onset recently? Also, if you are scheduled for surgery, whathas your surgeon told you to expect? He/she should have some sort ofplan going into surgery and shared that with you. Have you had anytests i.e., MRI, CT scans, etc. to determine what's going on?Good luck and welcome to the group! )Kelley>> Hi,> I found this group while trying to find other people with similar> problems to myself, I hope you don't mind me joining this group.>> I am 31, a Mum of 2 and had single Harrington Rod surgery in 1991 at> the age of 15 for a double major curve, top 39 deg bottom 49 deg,> rod and fusion from T2 to L2.>> I found out 3 or 4 years ago that my rod had snapped in the middle> and just recently found out it was due to Flatback Syndrome and lack> of Sagittal alignment. I am in so much pain now its ridiculous, I> have kind of collapsed to the left, as if I have a single curve in> the middle, I guess due to my rod being broken.>> I am due for my Second surgery in 11 weeks time and am scared out of> my skin. I know this is due to not really knowing what to expect.>> Can anyone out there enlighten me please?>> Is the pain better or worse on second surgery?> Will I be in less pain after the surgery?> Will I have to wear a brace again?>> Hoping for a swift answer,>> Kat>

August 24, 2006

Hi Kat,

Just a quick reply to say that I'm another UK member. I had my original surgery in 1994, down in Cornwall. Unfortunately, the surgeon who did it made a bit of a mess of it, although I didn't realise that at the time. I discovered that I had sagittal imbalance, actually a kyphosis in my case, in 2000. I was also only fused to L2 - my understanding is it's actually fairly unusual to develop sagittal imbalance without the fusion extending to at least L3, but looks like we've both managed it!

I first saw a doctor at The Royal National Orthopaedic Hospital in London (Stanmore), and then saw Mr Webb, who did my revision surgery, at Queens Medical Centre in Nottingham. Unlike most people, I only had a single stage revision surgery - as I had previously had anterior surgery right where they would have needed to go in, it was considered too risky in my case - instead they did the anterior work from a posterior incision. I'm also only fused to L4, as my remaining 2 discs were still good, so the gamble was taken to hope they'd last well once I was balanced again. I had the surgery in October 2002, so I'm just coming up toward 4 years since.

Regarding pain, my surgery in 1994 left me pretty scared of pain control - or rather the lack of it. I had next to no pain relief until they put me on weak oral meds, because the PCA machine was not set up properly, but they thought I just wasn't pressing it. However, the experience with the second surgery was totally different - they seemed to understand the amount of pain that this sort of surgery causes, and were willing to treat it, which was a great relief. Also, these days, there is less insistence on there only being one or two painkillers that can possibly be used - they are willing to try a variety if you have problems with the first ones they give you.

As to braces, it varies from doc to doc. I didn't have to wear one, because it was considered strong enough as it was - and I had no problems with it. Other people have had to wear them however, and it is possible that your doc won't have decided until you've actually had your surgery - you'll have to ask him/her I think, to get some idea.

I'm sorry for what's brought you here, but I'm glad that you found us )

titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone

August 24, 2006

Hi All,

Thank you so much for your swift replies!

I'll try and answer everyones questions as best I can but let me

know if you want any more info. Warning - this is gonna be Loooong -

sorry!

I first requested a re-referral to the Ortho Hospital because I was

experiencing new pain, that was about 4 years ago, after seeing a

new surgeon - Mr H (because the one who did the original op had

since retired) he ordered some x-rays which is how I found my rod

was broken, I knew something was wrong, but I never in a million

years thought my rod could break!

Mr H said he thought my pain was NOT due to the rod breaking as

there was not (and still isn't) much pain at the breakage site, most

of my pain is in my lower spine. I also have a scar on my illiac

crest from bone grafts taken in 1991 and it was discovered by Mr H I

have a Neuroma (benign tumor of the nerves) in the middle of that

scar. He sent me for an MRI scan and to see a pain specialist - Mr S.

I never had a review of my MRI so assumed it was normal, however I

do posess a letter stating that its suspected that my rod broke due

to 'non-union' but theres no pseudoarthritis????

Mr S spent 2 years trying every different pain relief on me

including Electronic Pulse injections and Acupuncture before

admitting defeat and referring me back to Mr H for sugery.

Mr H re-reviewed my MRI results and decided that the hospital

had 'failed' me in 1991, and that they 'owed' me an operation to

remove the old broken rod, fix the flatback problem, insert 2 new

rods and find and remove the neuroma in my hip. I have no idea if Mr

H is planning on fusing more f my spine i.e lower than L2 - I guess

that is soething else I will have to ask him.

My flatback is at the top of my back, I have no curve forward at the

top so my neck sticks forward and my chin juts out no matter

how 'straight' I try to stand. I look as though I have awful posture.

I have an appointment with Mr H for 21st Sept when I will ask him

some questions, but theres no substitute for the info that people

who have actually been through something like this.

Thank you all for your warm welcome, its comforting to know I am not

alone with my problems and reassuring to know that there is

possibilty of getting out of this pain,

Kat x

>

> Hi,

> I found this group while trying to find other people with similar

> problems to myself, I hope you don't mind me joining this group.

>

> I am 31, a Mum of 2 and had single Harrington Rod surgery in 1991

at

> the age of 15 for a double major curve, top 39 deg bottom 49 deg,

> rod and fusion from T2 to L2.

>

> I found out 3 or 4 years ago that my rod had snapped in the middle

> and just recently found out it was due to Flatback Syndrome and

lack

> of Sagittal alignment. I am in so much pain now its ridiculous, I

> have kind of collapsed to the left, as if I have a single curve in

> the middle, I guess due to my rod being broken.

>

> I am due for my Second surgery in 11 weeks time and am scared out

of

> my skin. I know this is due to not really knowing what to expect.

>

> Can anyone out there enlighten me please?

>

> Is the pain better or worse on second surgery?

> Will I be in less pain after the surgery?

> Will I have to wear a brace again?

>

> Hoping for a swift answer,

>

> Kat

>

August 24, 2006

Hi Kat...

Non-union is the same as pseudarthrosis.

I’m confused about you saying that you have no curve forward in your upper back (kyphosis). Didn’t you state that the rod had come away from the spine at the top? If that’s correct, I’m trying to envision how there would be no curve there. Also, you say that your neck sticks forward and your chin juts out. That sounds to me like you have too much of a curve at the top, not too little.

Regards,

On 8/24/06 10:51 AM, " kat_black2 " <kat_black2@...> wrote: