Re: specialist #2

[Guest guest]

> One thing that struck me was he felt that people who have fusion

to the sacrum really don't have a great deal less mobility than

those who are fused to L4, like I am - can you guys who are fused

please let me know the real life version of that? I know Elaina was

talking about not being able to reach her toenails anymore - now

that's the kind of down and dirty I'm talking about!

Dannelle, is the following what you want? I'm not really organized

for the following couple of paragraphs, but...

Depends on what the doc is imagining you doing when he uses the

word " mobility " and what he means by " great deal of. " I've been

fused to S1 like many on this list. My particulars are probably

different from others. I think that you'll be surprised in the

everyday stuff you do that requires L4-S1 bending.

I've found that I have problems reaching my rear from the back in

the shower and, ahem, other places. This is solved by going through

the front side (hope this isn't " too much information " ). I've found

that my walking gait is different, more awkward. I feel more strain

in the hips when walking. Anything requiring bending backward

(something as simple as looking up) or side-to-side is somewhere

between difficult and impossible. Making a simple basketball layup

is very difficult. Taking walks over a couple of miles is tiring,

as is being upright for a long time.

I'm not exactly sure where I'm going on this paragraph, but on the

plus side, I can reach anywhere on my legs, toes included. I don't

play sports anymore but most of what's remaining in my life is

possible. I've been told not to lift more than 40 lbs. As a

practical matter, I max out at less than that. But I don't need to

do more than that to live a reasonable life. I can bump a

volleyball back and forth with the kids if their passing is somewhat

accurate. I was able to get on a ladder the other day to install a

section of rain gutter. In spite of what I wrote earlier, walking

is both possible and enjoyable.

I'm sure that others will give more examples of what you can and

can't do.

[Guest guest]

Thanks, . This was an excellent description of life with a fusion to S-1. I have had more or less the same experience.

I was very concerned when I heard that a special long-handled "tongs" might be necessary for certain types of, ahem, hygiene. Then I learned from Dr. Rand that in his own experience as a surgeon, only one person fused to S-1 had actually needed to use such a tongs. You do what you have to do, but I was not looking forward to that one! Fortunately I managed to escape it.

I did find it very hard to put on socks and shoes for some months after surgery. I still like to wear elastic laces in my gym shoes, mainly because it is such a pain to retie a loose shoelace with this lengthy fusion. Something like a year post-op, however, I realized that I had more flexibility than I ever thought I would, and could actually consider wearing pantyhose again!

I must admit that for the first few months post op, despite the nursery-school aspect of the following, I generally ended up feeling quite relieved when someone would volunteer to put my shoes on my feet.

At New England Baptist, they issue you a whole spinal packet of handy gadgets for use post op. These include special devices for shoes and socks respectively. At one time, I did not think I would be able to finish dressing myself without such a device, but now I can. In fact, I can even put on pantyhose, which was initially out of the question. But all of this took a good long while, like maybe a year.

Yes, that twisting stuff, turning your head to look behind you, is a thing of the past. And the way I feel when walking is very similar to what you described. But now that I've read your post, I feel better about my tendency to lug around stuff I should probably not be carrying. I thought the weight limit was a lot lower than 40 pounds!--so maybe I have been "better behaved" than I thought. I somehow got "5 pounds" in my head, but maybe that was just during the first few months after surgery (with no TLSO or brace of any kind, in my case).

Eliana

Original Message -----

From: scott_blackledge

Sent: Tuesday, April 29, 2003 9:11 PM

Subject: Re: specialist #2

> One thing that struck me was he felt that people who have fusion to the sacrum really don't have a great deal less mobility than those who are fused to L4, like I am - can you guys who are fused please let me know the real life version of that? I know Elaina was talking about not being able to reach her toenails anymore - now that's the kind of down and dirty I'm talking about!Dannelle, is the following what you want? I'm not really organized for the following couple of paragraphs, but...Depends on what the doc is imagining you doing when he uses the word "mobility" and what he means by "great deal of." I've been fused to S1 like many on this list. My particulars are probably different from others. I think that you'll be surprised in the everyday stuff you do that requires L4-S1 bending.I've found that I have problems reaching my rear from the back in the shower and, ahem, other places. This is solved by going through the front side (hope this isn't "too much information"). I've found that my walking gait is different, more awkward. I feel more strain in the hips when walking. Anything requiring bending backward (something as simple as looking up) or side-to-side is somewhere between difficult and impossible. Making a simple basketball layup is very difficult. Taking walks over a couple of miles is tiring, as is being upright for a long time.I'm not exactly sure where I'm going on this paragraph, but on the plus side, I can reach anywhere on my legs, toes included. I don't play sports anymore but most of what's remaining in my life is possible. I've been told not to lift more than 40 lbs. As a practical matter, I max out at less than that. But I don't need to do more than that to live a reasonable life. I can bump a volleyball back and forth with the kids if their passing is somewhat accurate. I was able to get on a ladder the other day to install a section of rain gutter. In spite of what I wrote earlier, walking is both possible and enjoyable.I'm sure that others will give more examples of what you can and can't do.Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

Dear Dannelle,

I can only speak for myself - in 2000 I had flatback revision surgery and

my fusion to L4 was extended to the sacrum. There IS as difference, no

matter what doctor B said. Like Eliana, I cannot reach my toenails. I have

big trouble shaving my legs, so they usually look like the hairy jungle

(luckily I'm blonde but it can still get pretty gross till I'm ready to

face to shaving ordeal). Also... you wanted to full mounty.... I have

difficulty wiping my bottom after doing my bathroom business. I also can

barely tie my shoes - so I use the stretchy laces and tie them once every

once-in-awhile (I like to wear running shoes because they're so

comfortable) and then slip in and out of them with the help of a shoe-horn.

I don't want to discourage you - these are all surmountable difficulties,

but they do make daily life a bit more irritating at times. Keep in mind

that this is what happened to me: perhaps others haven't noticed such a

difference. I was pretty surprised by how much a couple of vertebrae could

change my mobility. Good luck with your decision and all the best.

from Italy

[Guest guest]

, I can relate to allot of what you just said. I don't know where I am

fused to. I haven't been to the Dr. in a while and I haven't ever had a

scan or MRI. I am 43 by/of. I had rods and fusion done in 1977. (Same year

Elvis died). I have the same trouble wiping. I have even more trouble in

the morning when I'm very stiff. If I walk for a while I start feeling a

strain or burning in my lateral hips. I don't enjoy walking, however. I

have a job where I sometimes do allot of walking and after about 6H I'm

exhausted. When I'm pushing a wheelchair it's allot easier. I should

probably start using a cane. When I go camping I use a walking stick. It

makes a big difference. I know in the past year I have really started

walking allot more bent over. People comment all the time. I seem to look

at the ground allot more than I used to. In order to look sideways or

behind me, I have to turn my whole body. I don't have very good range of

motion at the waist. I don't take narcotics. I take alive and stuff like

that for discomfort . I don't have real pain on a daily basis, but I do

think that I have a high tolerance for pain. My philosophy is that I have to

keep going. I have 4 elementary school age children and 2 incomes worth of

bills. I would not conceder revision surgery at this time, although I

haven't talked to a Dr. about it. I still enjoy life, however hard work is

getting allot harder.

Keep on keepen on!!!

(FROMTHEGROVES)

Re: specialist #2

>

> > One thing that struck me was he felt that people who have fusion

> to the sacrum really don't have a great deal less mobility than

> those who are fused to L4, like I am - can you guys who are fused

> please let me know the real life version of that? I know Elaina was

> talking about not being able to reach her toenails anymore - now

> that's the kind of down and dirty I'm talking about!

>

> Dannelle, is the following what you want? I'm not really organized

> for the following couple of paragraphs, but...

>

> Depends on what the doc is imagining you doing when he uses the

> word " mobility " and what he means by " great deal of. " I've been

> fused to S1 like many on this list. My particulars are probably

> different from others. I think that you'll be surprised in the

> everyday stuff you do that requires L4-S1 bending.

>

> I've found that I have problems reaching my rear from the back in

> the shower and, ahem, other places. This is solved by going through

> the front side (hope this isn't " too much information " ). I've found

> that my walking gait is different, more awkward. I feel more strain

> in the hips when walking. Anything requiring bending backward

> (something as simple as looking up) or side-to-side is somewhere

> between difficult and impossible. Making a simple basketball layup

> is very difficult. Taking walks over a couple of miles is tiring,

> as is being upright for a long time.

>

> I'm not exactly sure where I'm going on this paragraph, but on the

> plus side, I can reach anywhere on my legs, toes included. I don't

> play sports anymore but most of what's remaining in my life is

> possible. I've been told not to lift more than 40 lbs. As a

> practical matter, I max out at less than that. But I don't need to

> do more than that to live a reasonable life. I can bump a

> volleyball back and forth with the kids if their passing is somewhat

> accurate. I was able to get on a ladder the other day to install a

> section of rain gutter. In spite of what I wrote earlier, walking

> is both possible and enjoyable.

>

> I'm sure that others will give more examples of what you can and

> can't do.

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

>

[Guest guest]

,

You're right, it is really amazing how people with the " same " problems and

surgery can have such different outcomes. I am approx 1 1/2 months post-op

revision surgery at s Hopkins and they fused down to S1 from my L4- L5.

I managed to shave my legs(the calves) last week while sitting on a shower

chair (unlike you I am not blessed with blonde hair but have black hair and

am very fair - lovely looking if I don't shave my legs! ) I have been

surprised how far I can bend when I have to. I actually have not tried to

tie any shoes as I hate wearing shoes and live in my slide on shoes all the

time anyway. Am so glad they are back in fashion! My biggest problem has

been incredibly tight hamstrings which greatly affects my ability to bend

over. My physical therapist tortures me 3 times a week with stretches and

exercises and it is getting better.

My biggest annoyance is getting a weird sensation in my left hip. It is not

painful but irritating enough that I often have difficulty getting

comfortable. (I am going to have to get a firmer mattress if it doesn't

improve). I'm sure it is from all the hardware so I'm hoping that as I get

stronger I will get used to it or it will go away.

I've read many of your posts but can't remember when you had your surgery.

Was it last fall or winter?

Banner-Lach, RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

Re: specialist #2

> Dear Dannelle,

>

> I can only speak for myself - in 2000 I had flatback revision surgery and

> my fusion to L4 was extended to the sacrum. There IS as difference, no

> matter what doctor B said. Like Eliana, I cannot reach my toenails. I have

> big trouble shaving my legs, so they usually look like the hairy jungle

> (luckily I'm blonde but it can still get pretty gross till I'm ready to

> face to shaving ordeal). Also... you wanted to full mounty.... I have

> difficulty wiping my bottom after doing my bathroom business. I also can

> barely tie my shoes - so I use the stretchy laces and tie them once every

> once-in-awhile (I like to wear running shoes because they're so

> comfortable) and then slip in and out of them with the help of a

shoe-horn.

> I don't want to discourage you - these are all surmountable difficulties,

> but they do make daily life a bit more irritating at times. Keep in mind

> that this is what happened to me: perhaps others haven't noticed such a

> difference. I was pretty surprised by how much a couple of vertebrae could

> change my mobility. Good luck with your decision and all the best.

> from Italy

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

>

[Guest guest]

Dear ,

I was operated on in October 2000 by Drs. Guillaumat and Tassin at the

Hopital St. ph in Paris - was there for three weeks and then sent to a

rehab hospital at Vesinet (I really can't remember how to spell it) in a

suburb of Paris. The French system is quite different from the American -

they kept me lying down for several days after surgery (9 days sticks in my

mind but it might have been less) - then got me up with one of those tables

that gradually " pull " you into a standing position. Even though I had

flatback revision, osteotomy and the whole business plus removal of the old

Harrington instrumentation, they were able to do it entirely posteriorly -

somehow they managed to " reach around " to the front and stick in whatever

they had to. If that hadn't worked I was warned that I would need another,

anterior op. This technique is fairly new - I was around the 91st person to

have it done that way. I can't speak highly enough of the French medical

system - you get what you need and everyone is treated as an individual.

Thus in the hospital I had a private room and didn't pay a franc extra for

it. When I was in rehab and feeling better I had a roommate - but I could

put up with that by then.

Enough driveling. I've probably told you more than you wanted to know.

from Italy

[Guest guest]

Dear Dannelle,

At least in Italy, the sex life is just fine - (though you're probably not

going to want to be wildly jumping around the bed or able to twist into

kinky positions) but the fusion shouldn't affect the pleasure part!

[Guest guest]

,

No I find it all very interesting! You are lucky they didn't do the

anterior approach, I have a very ugly scar at my waist that goes halfway

waournd my body! And around here they make you get up the next day on your

own steam! Of course it was worse for me due to the screw sticking in my

hip but still, my God, could they not let me rest a couple of days?! I

understand the philosphy as I am a nurse but when you are the patient, Good

Grief.

Glad to hear some new approaches are coming out for people.

Good luck!

denise

Banner-Lach, RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

Re: specialist #2

> Dear ,

>

> I was operated on in October 2000 by Drs. Guillaumat and Tassin at the

> Hopital St. ph in Paris - was there for three weeks and then sent to

a

> rehab hospital at Vesinet (I really can't remember how to spell it) in a

> suburb of Paris. The French system is quite different from the American -

> they kept me lying down for several days after surgery (9 days sticks in

my

> mind but it might have been less) - then got me up with one of those

tables

> that gradually " pull " you into a standing position. Even though I had

> flatback revision, osteotomy and the whole business plus removal of the

old

> Harrington instrumentation, they were able to do it entirely posteriorly -

> somehow they managed to " reach around " to the front and stick in whatever

> they had to. If that hadn't worked I was warned that I would need another,

> anterior op. This technique is fairly new - I was around the 91st person

to

> have it done that way. I can't speak highly enough of the French medical

> system - you get what you need and everyone is treated as an individual.

> Thus in the hospital I had a private room and didn't pay a franc extra for

> it. When I was in rehab and feeling better I had a roommate - but I could

> put up with that by then.

> Enough driveling. I've probably told you more than you wanted to

know.

> from Italy

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

>

[Guest guest]

Dear ,

I have always read your posts with great interest - you are very knowledgeable and quite sympathetic to other's who have posted here!

I am very envious of your completely posterior surgical approach! I have had two anterior/posterior procedures. They have both changed the shape of my body forever. I intend to write about this issue of body image in another post. And mind you, I am not talking about the scars! I do not care about the scars - in time, they fade quite well. I am talking about other awful things that can happen after anterior surgery. I am very glad that you did not have to face these potential problems!

Carol from Chicago

[Guest guest]

,

The scar that winds half way around your waist - was it from your revision surgery that you just had in March, or from your prior surgery? And by the way, I am very glad that this surgery was not as painful as you expected (except for the hip screw!). My revision surgery was a year ago February, and also not very painful at all. I was off all meds by three weeks! Oops, everyone - please don't use that as a rate of comparison! Everyone is different - I'm just reporting my own response!

Carol from Chicago

[Guest guest]

Dear Carol,

If it's too painful to talk about it don't - but I was surprised to hear

that anterior surgery can change one's body image. When you feel like

describing it, I'm sure many of us would like to know what can happen - but

again, if it's too upsetting, forget it.

A sort of funny thing DID happen to a friend of mine who had anterior

surgery at another hospital in France. She got through it and went home - a

few years later, her cousin was diagnosed with some rare disorder of his

liver or spleen... anyway, some internal organ. So his doctor asked if he

could examine all his relatives - for free. She went to be palpated or

whatever, and the doctor got all upset as her organs were all in the wrong

places - apparently they had just sort of dumped them back in any-old-way.

She is none the worse off for it, but it sure suprised everybody! On that

cheerful note (i.e., I hope I haven't grossed anyone out) I'll say good-bye.

from Italy

[Guest guest]

Carol,

I'd be interested in hearing your stories as I had an anterior posterior

approach two years ago and still wrestle with the body changing effects. I

try to put it away, since the surgery itself accomplished what I had hoped

for, but still it bothers me.

Donna, also in Chicago (well, the suburbs anyway)

>From: carolkurt@...

>Reply-

>

>Subject: Re: specialist #2

>Date: Thu, 1 May 2003 18:16:32 EDT

>

>Dear ,

>

>I have always read your posts with great interest - you are very

>knowledgeable and quite sympathetic to other's who have posted here!

>

>I am very envious of your completely posterior surgical approach! I have

>had

>two anterior/posterior procedures. They have both changed the shape of my

>body forever. I intend to write about this issue of body image in another

>post. And mind you, I am not talking about the scars! I do not care about

>the

>scars - in time, they fade quite well. I am talking about other awful

>things

>that can happen after anterior surgery. I am very glad that you did not

>have

>to face these potential problems!

>

>Carol from Chicago

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

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[Guest guest]

Carol,

Yes, the scar at my waist is from my March surgery. I know some docs who do a cesarean like approach but my surgeion doesn't. I also found out today that the screw that gave me so much pain was there because my pelvic bone had cracked and it just stuck right on through. I would imagine that any of us that have had prior scoliosis surgery would have extra thin bone there due to the prior grafting.

Banner-Lach, RN, CCM, RN-WCCMNurse Case ManagerFirst Rehabilitation Resources, Inc.

Re: specialist #2

,The scar that winds half way around your waist - was it from your revision surgery that you just had in March, or from your prior surgery? And by the way, I am very glad that this surgery was not as painful as you expected (except for the hip screw!). My revision surgery was a year ago February, and also not very painful at all. I was off all meds by three weeks! Oops, everyone - please don't use that as a rate of comparison! Everyone is different - I'm just reporting my own response!Carol from ChicagoSupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

,

That's ironic as I was just joking with the x-ray tech this morning about

the very same thing! They put this little lead triangle over where your

uterus, etc is supposed to be and I said I hoped they had put everything

back in the right place so that little triangle would cover it!

Banner-Lach, RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

Re: specialist #2

> Dear Carol,

>

> If it's too painful to talk about it don't - but I was surprised to hear

> that anterior surgery can change one's body image. When you feel like

> describing it, I'm sure many of us would like to know what can happen -

but

> again, if it's too upsetting, forget it.

> A sort of funny thing DID happen to a friend of mine who had anterior

> surgery at another hospital in France. She got through it and went home -

a

> few years later, her cousin was diagnosed with some rare disorder of his

> liver or spleen... anyway, some internal organ. So his doctor asked if he

> could examine all his relatives - for free. She went to be palpated or

> whatever, and the doctor got all upset as her organs were all in the wrong

> places - apparently they had just sort of dumped them back in any-old-way.

> She is none the worse off for it, but it sure suprised everybody! On that

> cheerful note (i.e., I hope I haven't grossed anyone out) I'll say

good-bye.

> from Italy

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

>

[Guest guest]

Donna,

My dear, you and I have much to chat about! (By the way, I am really Carol from the suburbs of Chicago, too!)

I have about a 14 inch lateral scar from my first surgery in 1999 that runs from the middle of my belly up and around my waist, and several inches around my back. I don't have a medical background, so it's hard to describe the areas, exactly. About 3-4 months after the surgery, I commented to a doctor about the swelling around the side to the back, and asked how long it would take to subside. To my horror, the doctor told me that it was not swelling, it was a bulge from the muscles being cut, and it was permanent. Now keep in mind that I am a small-boned, thin woman - I weigh the same 115 pounds at age 50 that I weighed as a teen. I have never carried any extra weight, except when pregnant. And I have never had to work at keeping my weight level; I just have a lucky metabolism! For the first time in my life, I had what most resembled a "love handle"! FOR THOSE OF YOU WHO DO NOT WANT TO LISTEN TO ME MOAN & COMPLAIN ABOUT A COSMETIC ISSUE, READ NO FURTHER!

I cannot begin to tell you how traumatic this "love handle" was to me! I had to go out and buy a new wardrobe because nothing fit me. I could not button my pants or skirts, I couldn't fit into my dresses, and I could not wear some tops that were too clingy. Then I found out that bulges of this nature were a probability after anterior surgery like mine, as opposed to a possibility. My surgeons never told me before the surgery that this would happen. Do they not tell you before-hand because they think you may decide not to have the surgery, or are they oblivious to anything but the surgical outcome? Whichever the case may be, I feel they have an obligation to tell a patient about this probability. Are they so insensitive that they cannot recognize the trauma a small built woman might feel?

Now we skip forward to February, 2002. Revision surgery, also A/P. Another cut on the other side of the belly, but not through the muscles this time. No bulge from this cut, but the belly is no longer flat. Now the entire belly on that side is curving in a way it did not before. Two months after this surgery, lots and lots of alarming activity, strange feelings around the original scar, but this time in the front part of the scar! By the end of two weeks, entire front side of original scar is bulging! New wardrobe no longer fits, have to buy all new clothes again! For the first time in my life, I went into a depression that lasted longer than 48 hours. Not even in my desperate six year search to find a doctor to diagnose me, had I become depressed. But the loss of my figure, once again, really got to me - hard. I complained very bitterly to the surgeon the next time I saw him. No answers there. I even went to a plastic surgeon who was not at all encouraging; he even said he could do nothing for the front bulge.

Then, about a week ago, in conversation with someone from another scoliosis site, the term "incisional hernia" was used. I did a search on the term, and to my horror, I had each and every one of the symptoms! I requested a copy of my medical records, and to add to my shock and horror, there was the term "incisional hernia!"

Now I am researching surgeons who specialize in hernia repair. Had a consultation with a renowned plastic surgeon who said he could do nothing to help me. Both plastic surgeons said the original bulge, the "love handle," is muscle. Neither said anything about an incisional hernia. I do know it is getting worse, as these things do.

I don't know how many of you out there have had similar experiences with anterior surgery. It's taken me a long time to get up the courage to write about this subject. It may seem trivial - it may seem frivolous. But I suspect there may be others who feel as I do - grateful to be able to walk again, while hating the look of their body. This is a subject directly caused by scoliosis surgery, and as such, worthy to brought out into the open. The benefit of opening this subject to all of you is that there is a wealth of knowledge in this group, and who knows what we all might learn?

Carol from (the suburbs of) Chicago

[Guest guest]

,

Ouch, your description of that hip screw makes me shudder! You are so right about prior areas of grafting being extra thin - I just received a copy of my medical records and it does make mention of that with my revision surgery. About your scar - as a nurse, I know that you know this, but your scar will fade and become almost imperceptible. (Sometimes it helps just to hear that, even though you know it!)

Carol from (the suburbs of) Chicago

[Guest guest]

> Hi - , , , Elaina, and - Thank you all for

your candid info - it's exactly what I'm looking for! (Who ever

thought you'd be glad to share and hear this sort of stuff with

people you've never met??) Since we're being frank, a new thought

occurred to me today.....would any of you feel comfortable talking

about how the fusion affected your sex life? Obviously there's less

movement possible, but....I really hope I'm not overstepping....

I've been struggling with whether I should reply to this one, not to

mention *how* to reply. I'll leave it to the other ladies to talk

gender-specific experiences, but I can remind that if you're on (or

have to go back on) any pain meds, it may be rough getting in the

mood. This is really obvious to all who've had the oxycodone,

vicodin, etc. Also, staying in the mood may be a challenge because

turning over or otherwise changing position may (sometimes?) be

difficult.

[Guest guest]

Yikes, Carol, there's nothing trivial about your concerns, and it is plain

unconscienable of surgeons not only not to warn you about such side effects

of anterior surgery, but not to even inform you of them once you have them!

I haven't had anterior surgery, and now I have one more reason to make

every possible effort to avoid it!

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 10:48 PM 5/2/03 EDT, you wrote:

> Donna,

>

> My dear, you and I have much to chat about! (By the way, I am really

Carol from the suburbs of Chicago, too!)

I have about a 14 inch lateral scar from my first surgery in 1999 that runs

from the middle of my belly up and around my waist, and several inches

around my back. I don't have a medical background, so it's hard to describe

the areas, exactly. About 3-4 months after the surgery, I commented to a

doctor about the swelling around the side to the back, and asked how long

it would take to subside. To my horror, the doctor told me that it was not

swelling, it was a bulge from the muscles being cut, and it was permanent.

Now keep in mind that I am a small-boned, thin woman - I weigh the same 115

pounds at age 50 that I weighed as a teen. I have never carried any extra

weight, except when pregnant. And I have never had to work at keeping my

weight level; I just have a lucky metabolism! For the first time in my

life, I had what most resembled a " love handle " ! FOR THOSE OF YOU WHO DO

NOT WANT TO LISTEN TO ME MOAN & COMPLAIN ABOUT A COSMETIC ISSUE, READ NO

FURTHER!

I cannot begin to tell you how traumatic this " love handle " was to me! I

had to go out and buy a new wardrobe because nothing fit me. I could not

button my pants or skirts, I couldn't fit into my dresses, and I could not

wear some tops that were too clingy. Then I found out that bulges of this

nature were a probability after anterior surgery like mine, as opposed to a

possibility. My surgeons never told me before the surgery that this would

happen. Do they not tell you before-hand because they think you may decide

not to have the surgery, or are they oblivious to anything but the surgical

outcome? Whichever the case may be, I feel they have an obligation to tell

a patient about this probability. Are they so insensitive that they cannot

recognize the trauma a small built woman might feel?

Now we skip forward to February, 2002. Revision surgery, also A/P. Another

cut on the other side of the belly, but not through the muscles this time.

No bulge from this cut, but the belly is no longer flat. Now the entire

belly on that side is curving in a way it did not before. Two months after

this surgery, lots and lots of alarming activity, strange feelings around

the original scar, but this time in the front part of the scar! By the end

of two weeks, entire front side of original scar is bulging! New wardrobe

no longer fits, have to buy all new clothes again! For the first time in my

life, I went into a depression that lasted longer than 48 hours. Not even

in my desperate six year search to find a doctor to diagnose me, had I

become depressed. But the loss of my figure, once again, really got to me -

hard. I complained very bitterly to the surgeon the next time I saw him. No

answers there. I even went to a plastic surgeon who was not at all

encouraging; he even said he could do nothing for the front bulge.

Then, about a week ago, in conversation with someone from another scoliosis

site, the term " incisional hernia " was used. I did a search on the term,

and to my horror, I had each and every one of the symptoms! I requested a

copy of my medical records, and to add to my shock and horror, there was

the term " incisional hernia! "

Now I am researching surgeons who specialize in hernia repair. Had a

consultation with a renowned plastic surgeon who said he could do nothing

to help me. Both plastic surgeons said the original bulge, the " love

handle, " is muscle. Neither said anything about an incisional hernia. I do

know it is getting worse, as these things do.

I don't know how many of you out there have had similar experiences with

anterior surgery. It's taken me a long time to get up the courage to write

about this subject. It may seem trivial - it may seem frivolous. But I

suspect there may be others who feel as I do - grateful to be able to walk

again, while hating the look of their body. This is a subject directly

caused by scoliosis surgery, and as such, worthy to brought out into the

open. The benefit of opening this subject to all of you is that there is a

wealth of knowledge in this group, and who knows what we all might learn?

Carol from (the suburbs of) Chicago

[Guest guest]

Carol,

What a terrible experience! Hang in there and keep researching doctors and being examined, etc. Not much more you can do but know you're not alone. We're all behind you!

joyce in Atlanta

[Guest guest]

Hi Carol & ,

I was just curious as to why the surgery is done through the front and

side as opposed to the back. I had my scoliosis/harrington rod

surgery and have a scar all the way down my back... Actually, it is

two scars w/an inch in the middle between them. One down below was to

take hip bone out to fuse with my spine. I have just learned about my

flatback syndrome, just learned about all of the problems w/harrington

rod. Started physical therapy and the physical therapist did not know

that there were even any problems with the harrington rod - so now I

am searching for a new physical therapist. I am on an HMO only for

one more month and then I can go where my neurosurgeon wants me to

go. My family dr. is sending me within his network to people who

don't know what they are doing. Very frustrating! I am not sure

exactly what they hope to accomplish with the physical therapy, but I

am sure at my next dr. appt I will know more. I am looking for some

insight from any of you as to where I am heading and what will happen

next. I am new need insight!!! Doing all of the research I can right

now. SOrry, I realize I went way off the subject in hand, but

desperatly seeking info! Thanks for listening!

Re: specialist #2

>

>

> ,

>

> The scar that winds half way around your waist - was it from

> your revision surgery that you just had in March, or from your

> prior surgery? And by the way, I am very glad that this surgery

> was not as painful as you expected (except for the hip screw!). My

> revision surgery was a year ago February, and also not very

> painful at all. I was off all meds by three weeks! Oops, everyone -

> please don't use that as a rate of comparison! Everyone is

> different - I'm just reporting my own response!

>

> Carol from Chicago

>

>

>

[Guest guest]

Hi -

First of all, I want to emphasize that there are a number of reasons for anterior surgery - the following is an account of the reasons for mine. My flatback condition was caused by very different reasons that most (all?) people on this site.

Both of my surgeries entailed a combined anterior/posterior approach. At the time of my 1st surgery, I had degenerative scoliosis of the lumbar spine with lateral listhesis. This means there was great instability and lots of movement in the spine. I had virtually no lumbar lordosis, and was flatback due to the degenerative disc disease. With degenerative scoliosis, a combined A/P approach is needed for several reasons. My fusion would not have been strong enough with just a posterior approach. The anterior fusion was needed to provide maximum strength to prevent further movement of the spine. Without the anterior fusion, I would have risked pseudoarthrosis. Also, because of the loss of lordosis was caused by loss of disc height anteriorly, it was necessary to do a diskectomy and insert cages from the front to help maintain disc height. I begged my surgeon to do only a posterior approach for my revision surgery. He said he would if he could, without compromising the outcome. But when I woke up, there was another anterior scar!

Regarding your physical therapy, it won't cure your flatback, but it might help to strengthen weak muscles if you've been sedentary due to pain. And if surgery is your eventual decision, you want to be as strong as possible. Keep on doing that research!

Carol from sub.Chicago

[Guest guest]

Sharon & Joyce - Thank you both so much for your kind words of support! I admit to feeling a little anxiety after baring my soul the way I did. But hey, if we can be open and frank about our sex lives, what's a few "bulges" amongst friends?

Carol from sub.Chicago

[Guest guest]

,

I took the story about your friend who had anterior surgery in France very seriously. I have so much internal activity around my anterior scar that I honestly wondered if my intestines were put back incorrectly!

Carol from sub.Chicago

[Guest guest]

, one of the factors that contributes to flatback is the fact that we

with Harrington rods only have the posterior portions of our vertebrae

fused. The anterior sides were left unfused, and over the years the

remaining segments of intervertebral discs have become compressed. Discs

naturally compress as people age, but in the unfused spine it can happen

more evenly. Only our front portions can compress, and the distraction

force of the Harrington rod encourages this to happen.

Modern fusions usually fuse the anterior portion as well, making for a more

solid fusion and reducing the risk of flatback.

Sharon in southern New Hampshire :^)

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 fusion T5 to L4 w/ single Harrington rod

Flatback, congenital thoracolumbar kyphosis, L5-S1 degeneration, etc.

At 09:06 AM 5/3/03 -0400, you wrote:

> & ,

>

> I was just curious as to why the surgery is done through the front and

> I had my scoliosis/harrington rod

> Actually, it is

> One down below was to

> I have just learned about my

> flatback syndrome, just learned about all of the problems w/harrington

> Started physical therapy and the physical therapist did not know

> that there were even any problems with the harrington rod - so now I

> I am on an HMO only for

> one more month and then I can go where my neurosurgeon wants me to

> My family dr. is sending me within his network to people who

> I am not sure

> exactly what they hope to accomplish with the physical therapy, but I

> I am looking for some

> insight from any of you as to where I am heading and what will happen

> Doing all of the research I can right

> SOrry, I realize I went way off the subject in hand, but

> Thanks for listening!

>

>

> Re: specialist #2

>>

>>

>> ,

>>

>> The scar that winds half way around your waist - was it from

>> your revision surgery that you just had in March, or from your

>> prior surgery? And by the way, I am very glad that this surgery

>> was not as painful as you expected (except for the hip screw!). My

>> revision surgery was a year ago February, and also not very

>> painful at all. I was off all meds by three weeks! Oops, everyone -

>> please don't use that as a rate of comparison! Everyone is

>> different - I'm just reporting my own response!

>>

>> Carol from Chicago

>>

>>

>>

[Guest guest]

,

My surgery was done from the front AND the back. In front they did the

osteotomies and replaced 6 discs with titanium cages filled with ground bone

(from the 2 ribs they removed) in order to stabilize the spine better.

Posteriorly, then, they finished the osteotomies, the instrumentation and

bone grafting.

Donna

>From: Huckleberry <lhuckleberry@...>

>Reply-

>

>Subject: Re: specialist #2

>Date: Sat, 03 May 2003 09:06:43 -0400

>

>Hi Carol & ,

>

>I was just curious as to why the surgery is done through the front and

>side as opposed to the back. I had my scoliosis/harrington rod

>surgery and have a scar all the way down my back... Actually, it is

>two scars w/an inch in the middle between them. One down below was to

>take hip bone out to fuse with my spine. I have just learned about my

>flatback syndrome, just learned about all of the problems w/harrington

>rod. Started physical therapy and the physical therapist did not know

>that there were even any problems with the harrington rod - so now I

>am searching for a new physical therapist. I am on an HMO only for

>one more month and then I can go where my neurosurgeon wants me to

>go. My family dr. is sending me within his network to people who

>don't know what they are doing. Very frustrating! I am not sure

>exactly what they hope to accomplish with the physical therapy, but I

>am sure at my next dr. appt I will know more. I am looking for some

>insight from any of you as to where I am heading and what will happen

>next. I am new need insight!!! Doing all of the research I can right

>now. SOrry, I realize I went way off the subject in hand, but

>desperatly seeking info! Thanks for listening!

>

>

> Re: specialist #2

> >

> >

> > ,

> >

> > The scar that winds half way around your waist - was it from

> > your revision surgery that you just had in March, or from your

> > prior surgery? And by the way, I am very glad that this surgery

> > was not as painful as you expected (except for the hip screw!). My

> > revision surgery was a year ago February, and also not very

> > painful at all. I was off all meds by three weeks! Oops, everyone -

> > please don't use that as a rate of comparison! Everyone is

> > different - I'm just reporting my own response!

> >

> > Carol from Chicago

> >

> >

> >