Here we go again?

[Guest guest]

In a message dated 4/1/00 4:49:33 PM Eastern Standard Time, LDRS AAC SRAJUDY

writes:

<< LDRS AAC SRAJUDY >>

send any lyme info to Ldrsaacsrajudy@....

[Guest guest]

,

Did you check the profile of this person on AOL?

Marta

From: m2hmghb@... <m2hmghb@...>

>In a message dated 4/1/00 4:49:33 PM Eastern Standard Time, LDRS AAC

SRAJUDY

>writes:

>

><< LDRS AAC SRAJUDY >>

>

>send any lyme info to Ldrsaacsrajudy@....

[Guest guest]

Titch,

I hope all goes the way you wish with your follow-up and that you get

some promising answers. I'll be thinkin' about you.

kam

[Guest guest]

Titch, I'm really sorry you're having a problem with your revision. I'm glad you're insisting on seeing Mr. Webb, and if he doesn't show for your appointment, perhaps you can get him to phone you. He really needs to know about this.

Sharon

[ ] Here we go again?

Hubby and I are off to the Download music festival this coming weekend, and I realised I've nothing suitable to wear for it so I went out clothes shopping on Sunday. Its been a few months since I went shopping for tops, but I didn't expect to have any problems - since the revision in 2002 I've been able to pick up normal tops and know that the waist will be in the right place, and they'll come to where they should over my hips.

Sunday's trip confirmed my fears that I've lost height, and revealed how. Practically all the tops were too long, the waist falling somewhere toward my belly button, and because I tried on a lot of cotton tops rather than either sweaters or lightweight jersey tops (either of which are quite forgiving) it was very clear that they don't sit straight any more. I've keeled off significantly to the right, and am rotating rather a lot, with my left shoulder forward, the right back.

I've been increasingly worried since January that things were changing, but put it down to paranoia. I suspect the sudden recent deterioration may be partly related to the fact I had a caudal epidural steroid injection on 12th May (at QMC thankfully, I'm so glad I told my local hospital what they could do with their plans of doing it under general anaesthetic!) - the local with that was so lovely, to be able to move again and not to hurt - as I've got a lot less spasming across the back of my waist now and can't help but wonder how much of that was actually holding me upright/a consequence of me unconsciously fighting the forces twisting me.

I've got a follow up on 21st June, and have asked them to try to make sure I get to see Mr Webb this time. I really don't think this is good at all.

titch-- "The older I grow the more I distrust the familiar doctrine that age brings wisdom." - H. L. Mencken

[Guest guest]

I am so sorry to hear that you are having problems, Titch, but after

reading that you had unfused vertebrae below your long fusion, I am

not terribly surprised.

It seems that most of the US revision surgeons fuse to S1 because

they know the discs will eventually go out if they don't.

At least, that is what I have gathered from reading the forums.

I hope you have a satisfactory outcome and don't have to wait too

long for it. It must really suck to be thinking about more surgery

when you had been doing so well.

>

> The funny thing is the revision is fine - the lordosis is still

well

> engineered and lovely, the curves are the same as they ever were,

it's just

> the unfused two discs and L5 at the bottom that have decided to go

astray.

[Guest guest]

Hi Titch...

I'm also fused to L3, and have developed a curve below my fusion.

From what I read, I'm thinking that the only way to even have a chance

at avoiding problems below a long fusion, is to pick the distal level

perfectly. If the last fused vertebrae isn't level, I think there's a

good chance one will have problems. :-( That fact, in and of itself,

is to me, the reason to pick a surgeon with excellent training and a

lot of experience.

Regards,

>

> The funny thing is the revision is fine - the lordosis is still well

> engineered and lovely, the curves are the same as they ever were,

it's just

> the unfused two discs and L5 at the bottom that have decided to go

astray.

>

> I pretty much always knew there would be a number 3, but I assumed

it would

> be for disc degeneration or stenosis in later years, not because the

tiny

> unfused bit would take a sudden mind of it's own. It's odd just how

> determined my back seems to curve to the maximum possible -

especially when

> you consider the residual curve which L4-S1 is part of is less than 40

> degrees (well, it was, I don't think it is any more) which is

supposed to be

> the cut off for progression potential as an adult. But then again,

it did

> this before - when I first saw Mr Webb in May 2001, I was fused

T10-L2, and

> auto-fused to L3 and the only problems I had were the disc pain and

the fact

> I was leaning forward several inches, coronally I was fine and in good

> balance. By September I'd abruptly decompensated to the left with the

> unfused L4 & L5, so I had significant trunk shift - they were pretty

> surprised it could happen at all and certainly that fast. Now I've

got one

> less vert free, and after 3 years of stability off it's gone again (this

> time to the right because the way the long fusion is set up, I

couldn't get

> the trunk shift again) - I just wonder what the heck is driving it,

because

> this just isn't normal curve behaviour.

[Guest guest]

Dear Titch and ,

I'm very interested in both of you developing curves below your fused spines at L-3. Would be very interesting to see either of your x-rays to see just what that looks like. Do you both have vertebrae that have stepped off? I went a year on my decompression, and had auto fused lower than my original L-3 fusion, so I find this curving you guys did very interesting. Might be another reason not to consider a decompression/lami, and go for full revision, if you have the possibility of developing a small very low curve, sure would like to see just what that looks like. I looked you up in the member stories, didn't seem to find your story, maybe I just missed it.. Are you still waiting on revision, or have you had it done? Sorry, about not knowing your details, I just assumed you had gone through revision since you are SO knowledgeable.The more I listen to stories here the more I learn, and both of your cases are very interesting.

[ ] Re: Here we go again?

Hi Titch...I'm also fused to L3, and have developed a curve below my fusion. From what I read, I'm thinking that the only way to even have a chanceat avoiding problems below a long fusion, is to pick the distal levelperfectly. If the last fused vertebrae isn't level, I think there's agood chance one will have problems. :-( That fact, in and of itself,is to me, the reason to pick a surgeon with excellent training and alot of experience.Regards,>> The funny thing is the revision is fine - the lordosis is still well> engineered and lovely, the curves are the same as they ever were,it's just> the unfused two discs and L5 at the bottom that have decided to goastray.> > I pretty much always knew there would be a number 3, but I assumedit would> be for disc degeneration or stenosis in later years, not because thetiny> unfused bit would take a sudden mind of it's own. It's odd just how> determined my back seems to curve to the maximum possible -especially when> you consider the residual curve which L4-S1 is part of is less than 40> degrees (well, it was, I don't think it is any more) which issupposed to be> the cut off for progression potential as an adult. But then again,it did> this before - when I first saw Mr Webb in May 2001, I was fusedT10-L2, and> auto-fused to L3 and the only problems I had were the disc pain andthe fact> I was leaning forward several inches, coronally I was fine and in good> balance. By September I'd abruptly decompensated to the left with the> unfused L4 & L5, so I had significant trunk shift - they were pretty> surprised it could happen at all and certainly that fast. Now I'vegot one> less vert free, and after 3 years of stability off it's gone again (this> time to the right because the way the long fusion is set up, Icouldn't get> the trunk shift again) - I just wonder what the heck is driving it,because> this just isn't normal curve behaviour.

[Guest guest]

Hi ...

I'm sorry, I don't have any current xray pictures.

I don't have flatback, and have never had revision surgery. I'm not

even sure why I'm here. ;-) You can read my story (very uninteresting

compared to most of you) here:

http://www.scoliosislinks.com/AboutMe.htm

Regards,

>

> Dear Titch and ,

>

> I'm very interested in both of you developing curves below your

fused spines at L-3. Would be very interesting to see either of your

x-rays to see just what that looks like. Do you both have vertebrae

that have stepped off? I went a year on my decompression, and had auto

fused lower than my original L-3 fusion, so I find this curving you

guys did very interesting. Might be another reason not to consider a

decompression/lami, and go for full revision, if you have the

possibility of developing a small very low curve, sure would like to

see just what that looks like. I looked you up in the member

stories, didn't seem to find your story, maybe I just missed it.. Are

you still waiting on revision, or have you had it done? Sorry, about

not knowing your details, I just assumed you had gone through revision

since you are SO knowledgeable.The more I listen to stories here the

more I learn, and both of your cases are very interesting.

>

>

[Guest guest]

Dear Kelley,

Saw you were from Cloverdale, my Aunt and Uncle and Kids are long timers there, boy it's a small world. My husband was born in Castro Valley, and lived mostly in Hayward. I had my surgery in 1973 at UCSF, and we lived in Santa when I had surgery. There seems to quite a few of us from that area when we had our Harrington Rod surgeries. My husbands Father and Step Mother are in Napa, he just had hand surgery with Kaiser there, I sure was concerned since it was with his dominate hand, a really bad break. Hard to be of help when family is so far away, we've been gone from California for 11 years, hit three states since then, and we've landed in Colorado. We make it out there once a year, I still miss the ocean, and the family and friends still there.

RE: [ ] Re: Here we go again?

,

I was on Rich Lethin’s list for a short time prior to having my revision surgery in Sept ’99 – I thought I recognized your name on the NSF forum, which was where I found the link to this list (I think you posted it). I’m originally from the SF Bay Area myself – born in Cloverdale and grew up in Castro Valley. My husband and I both have family there. My brother lives in Sonoma and as it turns out his 13 year old daughter has scoliosis and she will be having her corrective surgery on June 20th by a surgeon in Napa (long story). Anyway, I go there to visit from time to time – perhaps we can get together sometime since our paths keep crossing. ;o)

Kelley

From: [mailto: ] On Behalf Of RacineSent: Thursday, June 08, 2006 4:37 PM Subject: [ ] Re: Here we go again?

Hi ...I'm sorry, I don't have any current xray pictures.I don't have flatback, and have never had revision surgery. I'm noteven sure why I'm here. ;-) You can read my story (very uninterestingcompared to most of you) here:http://www.scoliosislinks.com/AboutMe.htmRegards,

[Guest guest]

I think we have to remember that any surgery is just a " best fix

possible " , considering that WHATEVER makes OUR backs choose to curve,

is still inside us... winning the game in the long run, I am afraid.

(not considering scoliosis cases that are a " byproduct " or " side

effect " from some other medical conditions) That's why I like to

believe that research will one day find what causes us to curve and

rotate so something preventative can be done instead. -Marty

--- " Kirkaldie " wrote: Dear Titch and ,

I'm very interested in both of you developing curves below your fused

spines at L-3. Would be very interesting to see either of your x-rays

to see just what that looks like. Do you both have vertebrae that have

stepped off? I went a year on my decompression, and had auto fused

lower than my original L-3 fusion, so I find this curving you guys did

very interesting.

[Guest guest]

Well, for idiopathic curves that are caught early enough there is stapling.

http://www.spineuniverse.com/displayarticle.php/article1895.html

[ ] Re: Here we go again?

I think we have to remember that any surgery is just a "best fix possible", considering that WHATEVER makes OUR backs choose to curve, is still inside us... winning the game in the long run, I am afraid. (not considering scoliosis cases that are a "byproduct" or "side effect" from some other medical conditions) That's why I like to believe that research will one day find what causes us to curve and rotate so something preventative can be done instead. -Marty --- " Kirkaldie" wrote: Dear Titch and ,I'm very interested in both of you developing curves below your fused spines at L-3. Would be very interesting to see either of your x-rays to see just what that looks like. Do you both have vertebrae that have stepped off? I went a year on my decompression, and had auto fused lower than my original L-3 fusion, so I find this curving you guys did very interesting.

[Guest guest]

Hi Kelley, I am ashamed to admit that I have never read any of the

scoli books that can be found on Amazon... tho' would like

recommendations. (? I know you know...) I tho't I had read

possible link to bone weakness... which is why I asked group when I

first joined if any of the docs suggested supplements (calcium?or?). I

did get TERRIBLE car sick when I was a kid, willing myself to sleep

rather than feel the effects, even for short rides. How is that

relavant (sp?-arggh)? -Marty

--- " Pungo Ridge Designs " <kmoore@...> wrote: Oh, Marty. wouldn't

that be lovely? ) Do you remember that book " Stopping Scoliosis " by

Schommer? The last chapter that covered some of the research

that was going on at the time was interesting. What ever happened to

investigating more about the central nervous system? I think that Dr.

Herman was on to something there - more precisely the vestibular

nerve. Did y'all get car sick as a kid?... Kelley

[Guest guest]

Hi Marty...

My recommendations would be The Scoliosis Sourcebook by

Neuwirth and Scoliosis Surgery The Definitive Patient Reference by

Dave Wolpert.

I think researchers are getting closer and closer each day, to having

a blood test to predict scoliosis:

http://www.canada.com/montrealgazette/news/story.html?id=2bddc848-3b17-4262-b40c\

-203ba4efe98a & k=66521

Once that's done, the next step will hopefully be gene therapy to

avoid scoliosis altogether.

Regards,

>

> Hi Kelley, I am ashamed to admit that I have never read any of the

> scoli books that can be found on Amazon... tho' would like

> recommendations. (? I know you know...) I tho't I had read

> possible link to bone weakness... which is why I asked group when I

> first joined if any of the docs suggested supplements (calcium?or?). I

> did get TERRIBLE car sick when I was a kid, willing myself to sleep

> rather than feel the effects, even for short rides. How is that

> relavant (sp?-arggh)? -Marty

[Guest guest]

Supposedly there's a gene, probably on the X chromosome, which explains why more girls get it than boys. Mothers can give the X to either a boy or a girl, fathers can only give it to daughters. My family fits that pattern. My dad got it from his mother, and 4 of his 5 daughters have scoliosis (though mine is congenital and therefore it is not known if I have the idiopathic scoli gene). And one of my dad's 2 sons has a mild case, but he would have gotten that from my mother, who also has a mild curve. My dad's ex-wife also has a curvature, which helps explain how he won the scoli lottery.

Sharon

[ ] Re: Here we go again?

smiles... I am dreaming bigger than that. I mean an immunization, a vacination! How 'bout an in-womb determination, for josh sakes!? They got all kinds of tests nowadays. There has to be something in our chemical makeup that makes us this way. Why can't someone figure it out instead of fixing us!? --- "Sharon Green" wrote: Well, for idiopathic curves that are caught early enough there is stapling.

[Guest guest]

Sounds interesting; too bad that article gave next to no information.

Got anything with a little meat on it?

;^)

Sharon

[ ] Re: Here we go again?

Hi Marty...My recommendations would be The Scoliosis Sourcebook by Neuwirth and Scoliosis Surgery The Definitive Patient Reference byDave Wolpert.I think researchers are getting closer and closer each day, to havinga blood test to predict scoliosis:http://www.canada.com/montrealgazette/news/story.html?id=2bddc848-3b17-4262-b40c-203ba4efe98a & k=66521Once that's done, the next step will hopefully be gene therapy toavoid scoliosis altogether.Regards,>> Hi Kelley, I am ashamed to admit that I have never read any of the > scoli books that can be found on Amazon... tho' would like > recommendations. (? I know you know...) I tho't I had read > possible link to bone weakness... which is why I asked group when I > first joined if any of the docs suggested supplements (calcium?or?). I > did get TERRIBLE car sick when I was a kid, willing myself to sleep > rather than feel the effects, even for short rides. How is that > relavant (sp?-arggh)? -Marty

[Guest guest]

Ok, here's a little something:

Moreau's team has established a link between adolescent scoliosis and a deficiency in melatonin, a hormone that is involved in regulating bone metabolism.

http://www.tbsource.com/Localnews/index.asp?cid=83533

I'll look forward to seeing more details on this. I've used melatonin as a sleep aid for several years. I've always had some difficulties sleeping. I don't have the common idiopathic scoliosis, but may very well carry the gene.

Sharon

[ ] Re: Here we go again?

Hi Marty...My recommendations would be The Scoliosis Sourcebook by Neuwirth and Scoliosis Surgery The Definitive Patient Reference byDave Wolpert.I think researchers are getting closer and closer each day, to havinga blood test to predict scoliosis:http://www.canada.com/montrealgazette/news/story.html?id=2bddc848-3b17-4262-b40c-203ba4efe98a & k=66521Once that's done, the next step will hopefully be gene therapy toavoid scoliosis altogether.Regards,>> Hi Kelley, I am ashamed to admit that I have never read any of the > scoli books that can be found on Amazon... tho' would like > recommendations. (? I know you know...) I tho't I had read > possible link to bone weakness... which is why I asked group when I > first joined if any of the docs suggested supplements (calcium?or?). I > did get TERRIBLE car sick when I was a kid, willing myself to sleep > rather than feel the effects, even for short rides. How is that > relavant (sp?-arggh)? -Marty

[Guest guest]

Hmmm... wonder where they got that info. Nothing has hit PubMed yet.

There have been many scientists working on a link between scoliosis

and melatonin deficiency for years.

--

>

> Ok, here's a little something:

>

> Moreau's team has established a link between

adolescent scoliosis and a deficiency in melatonin, a hormone that is

involved in regulating bone metabolism.

>

>

>

> http://www.tbsource.com/Localnews/index.asp?cid=83533

>

> I'll look forward to seeing more details on this. I've used

melatonin as a sleep aid for several years. I've always had some

difficulties sleeping. I don't have the common idiopathic scoliosis,

but may very well carry the gene.

[Guest guest]

If the media got it all skewed it wouldn't be the first time.

So, do you know any other details, ?

Sharon

[ ] Re: Here we go again?

Hmmm... wonder where they got that info. Nothing has hit PubMed yet.There have been many scientists working on a link between scoliosisand melatonin deficiency for years.-->> Ok, here's a little something:> > Moreau's team has established a link betweenadolescent scoliosis and a deficiency in melatonin, a hormone that isinvolved in regulating bone metabolism.> > > > http://www.tbsource.com/Localnews/index.asp?cid=83533> > I'll look forward to seeing more details on this. I've usedmelatonin as a sleep aid for several years. I've always had somedifficulties sleeping. I don't have the common idiopathic scoliosis,but may very well carry the gene.

[Guest guest]

Dear Kelley,

I'm sorry to hear that bracing didn't work for your niece, my daughter just finished a sucessful bracing period, thankfully no progression while she was braced, actually a reduction in her " C" type curve. My doc, Anant Kumar, made her wear it 18 hours a day, he said that wearing it less than 12 hours a day has shown not to be as sucessful as 18, and since Ceili wanted to avoid surgery at all costs( she has been through 3 surgeries with me) she was dedicated to wearing it.

Passing this mess along to our kids is probably the hardest part of scoliosis for me. I have three children, two who are fine, and one who's affected. I now have a 14 month old granddaughter, and we'll be watching her like a hawk. Just something you have to come to terms with, just like asthma runs in my husbands family, and very bad eye sight. You can't beat yourself up about it, but my daughter Ceili has decided she will adopt, cause she doesn't want to pass it on, and I understand her decision. Since I'm adopted, I didn't know this was coming till I hit puberty, but I'm sure if i found my birth family Scoliosis would be there.

I wish your niece tons of good luck with her surgery!

[ ] Re: Here we go again?

smiles... I am dreaming bigger than that. I mean an immunization, a vacination! How 'bout an in-womb determination, for josh sakes!? They got all kinds of tests nowadays. There has to be something in our chemical makeup that makes us this way. Why can't someone figure it out instead of fixing us!? --- "Sharon Green" wrote: Well, for idiopathic curves that are caught early enough there is stapling.

[Guest guest]

Nope, but I'll let you know as soon as I hear anything.

--

>

> If the media got it all skewed it wouldn't be the first time.

>

> So, do you know any other details, ?

>

> Sharon

[Guest guest]

,

I was the first person in my family history to show up with

scoliosis, so none of us knew what was to come. Thanks so much for

your kind words regarding my niece's surgery - it's this next

Tuesday and I'm a nervous nellie!

Kelley

>

> Dear Kelley,

>

> I'm sorry to hear that bracing didn't work for your niece, my

daughter just finished a sucessful bracing period, thankfully no

progression while she was braced, actually a reduction in her " C "

type curve. My doc, Anant Kumar, made her wear it 18 hours a day, he

said that wearing it less than 12 hours a day has shown not to be as

sucessful as 18, and since Ceili wanted to avoid surgery at all costs

( she has been through 3 surgeries with me) she was dedicated to

wearing it.

>

> Passing this mess along to our kids is probably the hardest part

of scoliosis for me. I have three children, two who are fine, and

one who's affected. I now have a 14 month old granddaughter, and

we'll be watching her like a hawk. Just something you have to come

to terms with, just like asthma runs in my husbands family, and very

bad eye sight. You can't beat yourself up about it, but my daughter

Ceili has decided she will adopt, cause she doesn't want to pass it

on, and I understand her decision. Since I'm adopted, I didn't know

this was coming till I hit puberty, but I'm sure if i found my birth

family Scoliosis would be there.

>

> I wish your niece tons of good luck with her surgery!

>

>

[Guest guest]

I don't actually think I could have done better than Mr Webb ;o) I know they feared that they'd be unable to fully address the left lean and trunk shift I had before the revision, so perhaps there was an element of over-correction, but I wouldn't have chosen it any other way than it is - they can't undo what is done, so it was a good gamble to take.

When I was trying to find someone across here who might know what the heck they were doing (one of the GPs I saw wanted to send me back to the original surgeon, despite that he was 200 miles away and had discharged me from his care complete with kyphosis and already significant disc degeneration 4 years previously), I scoured the web for public/semi-public email addresses for as many of the top US surgeons as I could find, and emailed them all asking if they had any suggestions of hospitals which might specialise, or even better, surgeons I should look for. I got one reply, which was from Dr Hu, who very kindly wrote back to me to tell me that she'd recently done a visiting fellowship in the UK, and that I should do well with anyone at RNOH Stanmore [which was where I was currently seeing someone], but that 2 surgeons particularly well known were Mr Morley at RNOH and Mr Webb at QMC - after an eeny-meeny-miny-mo sort of process, I decided to see Mr Webb not least because he was at a different hospital and so it would perhaps be less problematic getting him as a second opinion.

Unfortunately I lost Dr Hu's email address after that - I had intended contact her once more to let her know it had been a great success, and I was so grateful for her taking the time to reply, as I'm sure I'd never have found Mr Webb otherwise - perhaps you could pass the message on at some point (not that she's likely to remember me, but hey, it's the thought that counts)? I do still class it as a great success - the stenosis is really a separate issue, and even if further work is required, it is onto a good base of a well balanced fusion )

titch

On 6/8/06, Racine <linda@...

> wrote:

Hi Titch...I'm also fused to L3, and have developed a curve below my fusion. From what I read, I'm thinking that the only way to even have a chanceat avoiding problems below a long fusion, is to pick the distal level perfectly. If the last fused vertebrae isn't level, I think there's agood chance one will have problems. :-( That fact, in and of itself,is to me, the reason to pick a surgeon with excellent training and a

lot of experience.Regards,

[Guest guest]

Hi ,

I don't actually have any useful xrays at the moment - I *know* the curve has increased, because I can't stand up straight any more, and my pelvis has taken a major tilt, plus I saw 2 friends from my forums over the weekend and they both agree that I look significantly different than I did at new year, but the last xray I have is from February 9th last year: http://www.puddleduck.info/titch/9-feb-2005.jpg

You can see an idea of the difference between this and pre-revision for coronal balance here:

http://www.puddleduck.info/titch/overlay.jpg (although the pre-revision one they had me standing very oddly because otherwise I leaned so far I was off the film, so I was stood with my right knee more bent to drop my pelvis and bring me back a bit more upright)

As far as I am aware though, I don't have any stepping off, and assuming it is essentially similar to spondylolisthesis, just in the coronal plan rather than sagittal, my understanding of that is that I wouldn't have because my discs are still good and it doesn't happen in the absence of disc degeneration (of course that could be a red herring, as it seems logical that the kind of problem that would lead to slippage would accelerate disc degeneration, but I have read several sources regarding spondylolisthesis saying the slippage cannot occur with good discs). There is an appearance on the 9th Feb xray image that there may be a spondylolisthesis at L5-S1, but this turned out to be a compression artifact - when the full size xray is viewed, it's quite clear that it's just a moderately large bone spur.

Sorry that's not a lot of use to your question!

titch

ps - as to interesting, I'm apparently a teaching case ;o)

On 6/8/06, Kirkaldie <.Kirkaldie@...> wrote:

Dear Titch and ,

I'm very interested in both of you developing curves below your fused spines at L-3. Would be very interesting to see either of your x-rays to see just what that looks like. Do you both have vertebrae that have stepped off? I went a year on my decompression, and had auto fused lower than my original L-3 fusion, so I find this curving you guys did very interesting. Might be another reason not to consider a decompression/lami, and go for full revision, if you have the possibility of developing a small very low curve, sure would like to see just what that looks like. I looked you up in the member stories, didn't seem to find your story, maybe I just missed it.. Are you still waiting on revision, or have you had it done? Sorry, about not knowing your details, I just assumed you had gone through revision since you are SO knowledgeable.The more I listen to stories here the more I learn, and both of your cases are very interesting.

.._,___ -- " The older I grow the more I distrust the familiar doctrine that age brings wisdom. " - H. L. Mencken

[Guest guest]

Dear Titch,

Very interesting! Can you explain to me the screw placement that looks to be from the side, maybe it's just a very bad angle, I believe there were three. We all look so different by x-ray. How you hold yourself during x-rays can show different thing, I know Carla has a lightbulb moment while getting pre surgery shot, that she did a compensation move to look more level but was also doing it during films, so when she stopped her balance was very much different. Has this been addressed by your doc, seems to be concerning. When I fell over to the right following my first revision it was because my Harrington Rod fusion mass had cracked, above my revision area, so a second revision was necessary to address that since I didn't want to go around with my ribs abbutting my hip. It sucked that I had to have a second go around, but all worked out good and I'm doing well 3 years out.

Re: [ ] Re: Here we go again?

Hi ,

I don't actually have any useful xrays at the moment - I *know* the curve has increased, because I can't stand up straight any more, and my pelvis has taken a major tilt, plus I saw 2 friends from my forums over the weekend and they both agree that I look significantly different than I did at new year, but the last xray I have is from February 9th last year: http://www.puddleduck.info/titch/9-feb-2005.jpg

You can see an idea of the difference between this and pre-revision for coronal balance here:

http://www.puddleduck.info/titch/overlay.jpg (although the pre-revision one they had me standing very oddly because otherwise I leaned so far I was off the film, so I was stood with my right knee more bent to drop my pelvis and bring me back a bit more upright)

As far as I am aware though, I don't have any stepping off, and assuming it is essentially similar to spondylolisthesis, just in the coronal plan rather than sagittal, my understanding of that is that I wouldn't have because my discs are still good and it doesn't happen in the absence of disc degeneration (of course that could be a red herring, as it seems logical that the kind of problem that would lead to slippage would accelerate disc degeneration, but I have read several sources regarding spondylolisthesis saying the slippage cannot occur with good discs). There is an appearance on the 9th Feb xray image that there may be a spondylolisthesis at L5-S1, but this turned out to be a compression artifact - when the full size xray is viewed, it's quite clear that it's just a moderately large bone spur.

Sorry that's not a lot of use to your question!

titch

ps - as to interesting, I'm apparently a teaching case ;o)

On 6/8/06, Kirkaldie <.Kirkaldie@...> wrote:

Dear Titch and ,

I'm very interested in both of you developing curves below your fused spines at L-3. Would be very interesting to see either of your x-rays to see just what that looks like. Do you both have vertebrae that have stepped off? I went a year on my decompression, and had auto fused lower than my original L-3 fusion, so I find this curving you guys did very interesting. Might be another reason not to consider a decompression/lami, and go for full revision, if you have the possibility of developing a small very low curve, sure would like to see just what that looks like. I looked you up in the member stories, didn't seem to find your story, maybe I just missed it.. Are you still waiting on revision, or have you had it done? Sorry, about not knowing your details, I just assumed you had gone through revision since you are SO knowledgeable.The more I listen to stories here the more I learn, and both of your cases are very interesting.

.._,___ -- "The older I grow the more I distrust the familiar doctrine that age brings wisdom." - H. L. Mencken

[Guest guest]

The set of 3 screws and rod on the side is from my original surgery - I had discectomy, fusion and anterior instrumentation at T12-L2, and posterior fusion with a Hartshill rectangle from T10-L2. It was the anterior rod that made revision a more tricky proposition than it is in most cases - with the fact I was fused in a kyphosis, the osteotomy/ies needed to be done right where the anterior rod was, and it was felt to be a bad idea to remove it (neither surgeon I saw wanted to, although the first one did want to do another anterior to remove the collapsed L2-3 disc).

What was done instead was a posterior only approach, and they reached around to smash up the fusion and loosen everything around the anterior hardware, so that the osteotomy (which was done at L2) could be taken with the hardware still in situ. I think it's a relatively unusual thing to have been done!

I have no idea what " brand " the anterior hardware is - before the surgery, the surgeon told me that he would be using Dwyer instrumentation for the anterior and Hartshill for the posterior. The latter he stuck with, but although it's in my notes that I have Dwyer hardware, it's very clearly not. QMC couldn't say what sort it was, as they'd never seen that exact type before, which may be another reason that they elected not to remove it - I was told it can be trickier than ideal with anterior hardware if you don't have the right tools for the exact type (given that it's one of the largest teaching centres in Europe, if they haven't seen it before, it must be something a bit peculiar!)

The ribs on hips thing is horrible ( That's another thing that gives away the change - I've got a fold on the right of my waist that wasn't there before, and it's worse when I'm tired. If I get xrayed next week, I'll be making very certain that I stand with my knees straight, no matter how much the tech may want me to fit their idea of normal! It worked out ok last time, but then the trunk shift was flexible - this time it's an out and out lean and feels very different. I don't think in my case anything can have cracked, because I'm guessing that if both rods had gone, I'd know about it ;o) It's good to know that even though it's a pain in all senses to have to think about going through it again, that it's worked for others like you to reach their good result )

titch

On 6/14/06, Kirkaldie <.Kirkaldie@...> wrote:

Dear Titch,

Very interesting! Can you explain to me the screw placement that looks to be from the side, maybe it's just a very bad angle, I believe there were three. We all look so different by x-ray. How you hold yourself during x-rays can show different thing, I know Carla has a lightbulb moment while getting pre surgery shot, that she did a compensation move to look more level but was also doing it during films, so when she stopped her balance was very much different. Has this been addressed by your doc, seems to be concerning. When I fell over to the right following my first revision it was because my Harrington Rod fusion mass had cracked, above my revision area, so a second revision was necessary to address that since I didn't want to go around with my ribs abbutting my hip. It sucked that I had to have a second go around, but all worked out good and I'm doing well 3 years out.