Let me introduce myself

[Guest guest]

, adult onset asthma is another common effect of having CFIDS/ME. If

you manage to overcome the CFIDS/ME, it will say goodbye along with it. Of

course, if that's possible right now, nobody's let us in on the secret!!!

Gail

[Guest guest]

Hi, !

My daughter, , who is 9, is also epileptic. She started having seizures

when she was six months (petit mal, then grand mal at seven months). I always

believed it was from her vaccinations, but the doctors would always say, " Oh, we

don't know that. " Jerks.

I just recently found out she has long-term chronic Mercury poisoning from her

vaccinations. I did not want to vaccinate her any more, but was pushed into it

by a new pediatrician when she was five. Within two weeks she began having

seizures twenty four hour per day, a week at a time, recovering for maybe a

week, and then starting all over again. This went on for a year and a half.

She barely made it to school at all that year. Only in the last two years has

she not been having seizures (only when sick for a while, now only when I

tapered her seizure meds too quickly). I have absolutely refused to allow my

children to be vaccinated since then, and I can honestly say that they are only

better because of my refusal.

There is no such thing as a safe vaccine. Period.

Welcome to the group!

let me introduce myself

Dear group:

I've just joined the group and haven't even had a chance to browse the

archive yet (I only just read my approval email and it said I should

introduce myself). So I will....

My son is 12 and has had epilepsy since he was 6. He started having

seizures shortly after receiving a Measles booster vaccine, but I only just

connected the 2 events a few months ago. I'm looking for information to

decide whether to vaccinate him anymore...he's due for the Hep B soon, and

I'm really swaying away from it after reading a bunch of stuff, but I'm

still looking for more.

I don't know if there's a way to tell whether it was the measles booster

that started this whole thing or if it was just something that would have

happened anyway. Any information you folks can provide for me would be

appreciated.

Thanks,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi, Kathy, and welcome.

For me, swimming helps a lot. Because I have tight, sore muscles pretty much

all over, I always stretch all major muscle groups in a hot shower or Jacuzzi

before swimming. This way I can warm up the muscles without exercise. My

stretches are pretty straight-forward, and you can probably invent some of your

own. The one where I lift each knee up to my head is really good for lower

back, buttocks. I also stretch the hip muscles in front by putting each leg as

far back as possible. I have " hip flexion contractures " , according to one doc

I've seen. This is common among those of us with flatback; our hips and knees

are always bent to compensate for the forward-tilting, and we can't swing our

legs back behind us. I guess the hip muscles get tight in the front from this

constant maladaptive position (not to mention that our pelvises are permanently

tilted from the loss of lumbar lordosis).

I've also had a physical therapist instruct me to try to pull my shoulder blades

back, and strengthen those muscles. I tried, but this was long before I knew I

had flatback. As far as I can tell, any posture training I force on myself is

essentially cosmetic, and it makes more sense to me to focus on staying strong

and minimizing pain.

I'd like to have a better body image, but frankly, I find the best way to mask

the deformity is to wear loose-fitting clothing. Ironic, too. If you're like

me you probably remember people commenting on your good posture when you were in

your teens/early twenties. Oh, well. I'm surely no worse off than I would have

been without the fusion, probably better.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Let me introduce myself

Hi,

My name is Kathy. I was one of the first 12 patients to receive

Harrington Rods in my back at the age of 12 in Oklahoma City. I'm

now 50 and have been battling back pain, flatback and arthritus in

my back for years. I've found the most relief by keeping my weight

down and exercising (as much as possible) my lower back and abs.

Also, lots of stretching seems to help. I'd appreciate any

suggestions for exercises and stretching to reduce back pain. Also,

any suggestions to improve posture. I get so tired of explaining to

people why I don't stand up straight.

Thanks, Kathy

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]

Wow! That is some distinction, Kathy.

I am sure this group will be interested in any information you might want to

share about Dr. Harrington and the early history of the Harrington rod.

Let me introduce myself

Hi,

My name is Kathy. I was one of the first 12 patients to receive

Harrington Rods in my back at the age of 12 in Oklahoma City. I'm

now 50 and have been battling back pain, flatback and arthritus in

my back for years. I've found the most relief by keeping my weight

down and exercising (as much as possible) my lower back and abs.

Also, lots of stretching seems to help. I'd appreciate any

suggestions for exercises and stretching to reduce back pain. Also,

any suggestions to improve posture. I get so tired of explaining to

people why I don't stand up straight.

Thanks, Kathy

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]

Kathy, I am wondering if your scoliosis is idiopathic, or if it was secondary to

some other condition.

I was 13 in 1961 and had my first fusion that year (in Washington, DC -- Walter

). They told me about the Harrington rod at that time, but explained that

it was not yet being used for patients with adolescent idiopathic scoliosis --

only for those with scoliosis secondary to poliomyelitis. In fact, Dr.

Harrington developed the hardware initially, as I understand it, in an effort to

make fusions possible for those with a history of polio.

Best,

Let me introduce myself

Hi,

My name is Kathy. I was one of the first 12 patients to receive

Harrington Rods in my back at the age of 12 in Oklahoma City. I'm

now 50 and have been battling back pain, flatback and arthritus in

my back for years. I've found the most relief by keeping my weight

down and exercising (as much as possible) my lower back and abs.

Also, lots of stretching seems to help. I'd appreciate any

suggestions for exercises and stretching to reduce back pain. Also,

any suggestions to improve posture. I get so tired of explaining to

people why I don't stand up straight.

Thanks, Kathy

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]

Hi Kathy, Welcome and glad to have you here w/us. Are people actually that

rude? Amazing...I find that walking is the best exercise for me. I do ab

crunches w/o the actual situps and I use light weights - 2lbs and sometimes a

walking

video (2 miles) if it's raining.

I think it's great that you are keeping up the exercise! Several others do

water exercise and I'm sure they'll share how that works for them...I would love

to find a good class close by.

Jennie (fusion 94 revision 99)

[Guest guest]

Hi, Kathy

I also had my Harrington Rod surgery in OKC, but a few years after

you. I had my 18th birthday in the body cast from neck to knees in

1973. My cousin also had scoliosis surgery in OKC, a few years

before I did. Her surgeon was Dr. Maier, who scared me off when he

said he had never seen curves as low as mine, but was quite willing

to operate anyway. My surgeon was S. Fulton Tompkins at Baptist

Hospital.

I was injured at work in November when the chair I was sitting in

broke and I landed hard on my back on a concrete floor. I have been

seeing a chiroprator, courtesy of workman's comp. He was pretty

appalled at the hardware in my back. He said he has seen quite a

few Harrington Rod patients, but never anything like mine. On my

last visit, he was quite vocal in saying he didn't know what they

were thinking--were they ignorant of biomechanics or did they not

know what they were doing. When I suggested that most doctors won't

admit how bad an idea the rods were and wondered if it was because

of malpractice fears, he said the time limit for that is 2 years, so

there is no good reason for them to cover up the problems.

He said he couldn't do much for my back, but that he had been

working to increase the mobility of my SI joints. I was actually

surprised that a chiropractor would have anything to do with my

back. I do feel better, but I think that is the etodolac. It has

worked wonders with the chronic pain in my left heel, and has helped

with the pain in my left hip, too.

The chiropractor thought I might want to consider getting the

vertical rods taken out at some point, but he was puzzled about the

sacral bar and didn't know how it was attached or whether it would

be possible to remove it. He seemed to think it might be causing

the pain in my hip, but as long as I can take some non-brain-numbing

meds that help the pain, I would prefer not to have surgery.

I told him that most everything I had learned about my condition was

from this group. He did not scoff at all.

I sent some information from the microconn site to my family care

physician when I first found this site. My doctor wrote a letter so

I can register with the office of disabled students at OU--so

hopefully my professor who doesn't accept health excuses will have

to back off a bit. I told my chiropractor some of the problems I

had been having at school, and he thought I should file a formal

letter of complaint with the dean (but I think that might be better

done AFTER I finish my degree--IF I can finish).

> Hi,

>

> My name is Kathy. I was one of the first 12 patients to receive

> Harrington Rods in my back at the age of 12 in Oklahoma City. I'm

> now 50 and have been battling back pain, flatback and arthritus in

> my back for years. I've found the most relief by keeping my

weight

> down and exercising (as much as possible) my lower back and abs.

> Also, lots of stretching seems to help. I'd appreciate any

> suggestions for exercises and stretching to reduce back pain.

Also,

> any suggestions to improve posture. I get so tired of explaining

to

> people why I don't stand up straight.

>

> Thanks, Kathy

[Guest guest]

I think your school would want to know if disabled students are being

intimidated by attitudes like those of your professor. Surely this is a

violation of applicable laws such as the ADA.

Re filing a lawsuit within two years, the chiropractor was probably referring to

your own jurisdiction. In general, the statute of limitations is a matter of

state law and may vary from one place to another.

I am curious as to how your Harrington rod differs from others that the

practitioner may have seen. I am also intrigued by his comment on biomechanics.

Do you know if he was talking about inattention to the sagittal plane, which was

widespread during the Harrington rod era, or if he found your hardware

problematic in some novel way? I wonder if your instrumentation really is

unusually bad in some way, as his remarks might imply, or if he simply lacks

experience with a large number of scoliosis surgery veterans?

I continue to marvel at how little many health care people seem to know about

our conditions. And I would have to include MDs, DOs, et al. My former

internist told me I was the first person she had ever seen with scoliosis. I

suspect she was just not " seeing " all the people she saw. Also, following a

minor car accident that jarred my back, I went to an ER as a precaution. The

doctor who examined me looked almost bored in response to my verbal history of

scoliosis and spinal fusion. But when she slipped an x-ray of my spine into a

light box and got her first glimpse of the Harrington rod, her nonchalance

turned to shock, amazement, and horror.

Re: Let me introduce myself

Hi, Kathy

I also had my Harrington Rod surgery in OKC, but a few years after

you. I had my 18th birthday in the body cast from neck to knees in

1973. My cousin also had scoliosis surgery in OKC, a few years

before I did. Her surgeon was Dr. Maier, who scared me off when he

said he had never seen curves as low as mine, but was quite willing

to operate anyway. My surgeon was S. Fulton Tompkins at Baptist

Hospital.

I was injured at work in November when the chair I was sitting in

broke and I landed hard on my back on a concrete floor. I have been

seeing a chiroprator, courtesy of workman's comp. He was pretty

appalled at the hardware in my back. He said he has seen quite a

few Harrington Rod patients, but never anything like mine. On my

last visit, he was quite vocal in saying he didn't know what they

were thinking--were they ignorant of biomechanics or did they not

know what they were doing. When I suggested that most doctors won't

admit how bad an idea the rods were and wondered if it was because

of malpractice fears, he said the time limit for that is 2 years, so

there is no good reason for them to cover up the problems.

He said he couldn't do much for my back, but that he had been

working to increase the mobility of my SI joints. I was actually

surprised that a chiropractor would have anything to do with my

back. I do feel better, but I think that is the etodolac. It has

worked wonders with the chronic pain in my left heel, and has helped

with the pain in my left hip, too.

The chiropractor thought I might want to consider getting the

vertical rods taken out at some point, but he was puzzled about the

sacral bar and didn't know how it was attached or whether it would

be possible to remove it. He seemed to think it might be causing

the pain in my hip, but as long as I can take some non-brain-numbing

meds that help the pain, I would prefer not to have surgery.

I told him that most everything I had learned about my condition was

from this group. He did not scoff at all.

I sent some information from the microconn site to my family care

physician when I first found this site. My doctor wrote a letter so

I can register with the office of disabled students at OU--so

hopefully my professor who doesn't accept health excuses will have

to back off a bit. I told my chiropractor some of the problems I

had been having at school, and he thought I should file a formal

letter of complaint with the dean (but I think that might be better

done AFTER I finish my degree--IF I can finish).

> Hi,

>

> My name is Kathy. I was one of the first 12 patients to receive

> Harrington Rods in my back at the age of 12 in Oklahoma City. I'm

> now 50 and have been battling back pain, flatback and arthritus in

> my back for years. I've found the most relief by keeping my

weight

> down and exercising (as much as possible) my lower back and abs.

> Also, lots of stretching seems to help. I'd appreciate any

> suggestions for exercises and stretching to reduce back pain.

Also,

> any suggestions to improve posture. I get so tired of explaining

to

> people why I don't stand up straight.

>

> Thanks, Kathy

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]

From what I understand, most people have harrington rods that are

more or less vertical along their spine--I have 2 of those.

However, I was fused to S1 the first time around, and so have a sort

of horizontal bar across my pelvis.

My chiropractor said they only should have done corrective surgery

on people who had such severe scoliosis that one or more of the

internal organs were compromised. I do think he was referring to

the sagittal plane problems in general when he said the old

scoliosis surgeons were either ignorant and didn't know what they

were doing or criminal in their experimentation. He compared them

with the surgeons who did experiments for Hitler. I was pretty

surprised he was so vehement--but it was my last workman's comp

visit and he had known a special petite woman who had a not-so-

severe case of scoliosis and was killed on the operating table

during her corrective surgery when the surgeon accidentally made a

bad cut.

You can see photos of my xrays at

http://members.cox.net/bahadreama/scoliosis

Most of the times I had seen the chiropractor, I was not in a lot of

pain, because I had been taking the etodolac. However, after being

off work for 2 weeks and having had a very busy, stressful day at

work, my back was hurting. Plus, I hadn't taken the medication

since I was doing a course of steroids after an asthma attack (and

having difficulty taking enough of them since they said to take with

food--I am really horrible about taking pills). So this last time I

saw him, I was all bent over, had a hard time standing up after

laying down, and could barely walk from the room where they put the

ice pack and electrical stimulation on to the room with the spiffy

table.

As far as my problems at school, I found out that I need to be

registered with the office of disability services if I really want

to push the issue. That really doesn't make sense to me, since I

have fit the legal definition of disabled since 1973 when vocational

rehab committed to paying for my undergraduate education. When I

tried to sign up with their office, they said they needed a detailed

letter describing my disability and my limitations. I called the

scoliosis specialist, and was told it might cost as much as $300 for

such a letter depending on how much detail was needed. I faxed them

the information from the school website, and never heard back from

them. I got a letter from my PCP yesterday and have an intake

appointment for next week. I am really hoping to be able to be

certified as a full time student for less than full time enrollment

since I have difficulty sitting at the computer long enough to do

full time course work (I have had a few papers that I had to turn in

a little late).

> > Hi,

> >

> > My name is Kathy. I was one of the first 12 patients to

receive

> > Harrington Rods in my back at the age of 12 in Oklahoma City.

I'm

> > now 50 and have been battling back pain, flatback and

arthritus in

> > my back for years. I've found the most relief by keeping my

> weight

> > down and exercising (as much as possible) my lower back and

abs.

> > Also, lots of stretching seems to help. I'd appreciate any

> > suggestions for exercises and stretching to reduce back pain.

> Also,

> > any suggestions to improve posture. I get so tired of

explaining

> to

> > people why I don't stand up straight.

> >

> > Thanks, Kathy

>

>

>

> 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]

SB, I shudder every time I see that pic of you in the body cast. What the

H-E-DOUBLE-TOOTHPICKS was your surgeon thinking?!! You must have come out of

that cast with full-blown flatback.

Your chiropractor has a point. It really is scary. They knew this little 20-30

years ago; what great truths are they overlooking now?! (Besides the fact that

fusing a spine is a DRASTIC measure with serious biomechanical consequences

which should ONLY be done in cases of severe and potentially crippling or

life-threatening deformity.)

Re: Let me introduce myself

From what I understand, most people have harrington rods that are

more or less vertical along their spine--I have 2 of those.

However, I was fused to S1 the first time around, and so have a sort

of horizontal bar across my pelvis.

My chiropractor said they only should have done corrective surgery

on people who had such severe scoliosis that one or more of the

internal organs were compromised. I do think he was referring to

the sagittal plane problems in general when he said the old

scoliosis surgeons were either ignorant and didn't know what they

were doing or criminal in their experimentation. He compared them

with the surgeons who did experiments for Hitler. I was pretty

surprised he was so vehement--but it was my last workman's comp

visit and he had known a special petite woman who had a not-so-

severe case of scoliosis and was killed on the operating table

during her corrective surgery when the surgeon accidentally made a

bad cut.

You can see photos of my xrays at

http://members.cox.net/bahadreama/scoliosis

Most of the times I had seen the chiropractor, I was not in a lot of

pain, because I had been taking the etodolac. However, after being

off work for 2 weeks and having had a very busy, stressful day at

work, my back was hurting. Plus, I hadn't taken the medication

since I was doing a course of steroids after an asthma attack (and

having difficulty taking enough of them since they said to take with

food--I am really horrible about taking pills). So this last time I

saw him, I was all bent over, had a hard time standing up after

laying down, and could barely walk from the room where they put the

ice pack and electrical stimulation on to the room with the spiffy

table.

As far as my problems at school, I found out that I need to be

registered with the office of disability services if I really want

to push the issue. That really doesn't make sense to me, since I

have fit the legal definition of disabled since 1973 when vocational

rehab committed to paying for my undergraduate education. When I

tried to sign up with their office, they said they needed a detailed

letter describing my disability and my limitations. I called the

scoliosis specialist, and was told it might cost as much as $300 for

such a letter depending on how much detail was needed. I faxed them

the information from the school website, and never heard back from

them. I got a letter from my PCP yesterday and have an intake

appointment for next week. I am really hoping to be able to be

certified as a full time student for less than full time enrollment

since I have difficulty sitting at the computer long enough to do

full time course work (I have had a few papers that I had to turn in

a little late).

> > Hi,

> >

> > My name is Kathy. I was one of the first 12 patients to

receive

> > Harrington Rods in my back at the age of 12 in Oklahoma City.

I'm

> > now 50 and have been battling back pain, flatback and

arthritus in

> > my back for years. I've found the most relief by keeping my

> weight

> > down and exercising (as much as possible) my lower back and

abs.

> > Also, lots of stretching seems to help. I'd appreciate any

> > suggestions for exercises and stretching to reduce back pain.

> Also,

> > any suggestions to improve posture. I get so tired of

explaining

> to

> > people why I don't stand up straight.

> >

> > Thanks, Kathy

>

>

>

> 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]

yes, Sharon, as a matter of fact, I was never able to stand up

straight again. My chiropractor said the braces and casts were

another stupid idea because they helped the muscles atrophy. He's a

big proponent of excercise, but I haven't really taken the time to

exercise on a regular basis since going back to school (If I had

some extra time, I would really like to spend it sleeping!!)

Ever since getting out of the cast, I have no tolerance for standing

up. The forward lean has gotten really bad (but I tend to agree

with the local scoli specialist that it would probably be better to

try to avoid more surgery). Complete strangers would sometimes

approach me when I was still quite young and tell me that I should

stand up straight. Other (older) strangers with back problems would

ask if I had had back surgery and mutter, " you poor thing "

When the scoli specialist sent me for physical therapy, I checked to

see what the PT wrote as the diagnosis. It was surgically induced

kyphosis.

Walking is painful. My favorite exercise is bike riding. It does a

terrific job of toning my lower back, buttocks and legs and is not

painful as long as I ride a real bicycle. Stationary bikes hurt.

Unfortunately, I go to work while it is still dark and there is no

way I feel like a bike ride AFTER work!! I used to ride 6 miles a

day and do free weights with the Body Electric show on PBS, but I

actually got larger all over when I started exercising every day (my

stomach got huge--I think I must not have been doing the stomach

crunches correctly--but my scoli doc says that as I lean forward,

the belly has got to go somewhere. I sure would like to get rid of

it.

The rod in my back was broken by the time I got out of the cast,

too. I don't think the fusion really worked. I have had a

handicapped parking permit since I was 19!!

[Guest guest]

Wow, that must have been awful. Did you have a bad curvature to begin with?

I just realized that my father, who got his spine fused 2 years after me, had a

cast very much like yours. While he was laid up (on his back without turning

for 3 months!) he kept 2 pillows under his head. His thinking was that, since

he was a draftsman, it wouldn't do to have his spine in " a strict military

posture " , because he wouldn't be able to bend over a drafting table to do his

work.

So he came out of the cast in a fixed kyphosis, thinking he had given it to

himself, when in fact the new deformity was courtesy of his much-admired

surgeon! Probably the 2 pillows simply made the bent-in-the-cast position

tolerable during his convalescence. Gosh, I could spit! The surgeon was such a

nice old fellow, too. I'm sure he thought he was doing a great job on my dad.

He was in pain prior to the procedure, but says that it only partially

alleviated it. What a trade-off. The surgeon's young associate had iven my dad

a second opinion before the surgery, saying if it were his spine he wouldn't do

it. But my dad thought a spinal fusion was the best thing since sliced bread,

and, gosh, he wished he could have had it done when he was a kid!

Oh, well. Hindsight is 20/20.

Sharon

Re: Let me introduce myself

yes, Sharon, as a matter of fact, I was never able to stand up

straight again. My chiropractor said the braces and casts were

another stupid idea because they helped the muscles atrophy. He's a

big proponent of excercise, but I haven't really taken the time to

exercise on a regular basis since going back to school (If I had

some extra time, I would really like to spend it sleeping!!)

Ever since getting out of the cast, I have no tolerance for standing

up. The forward lean has gotten really bad (but I tend to agree

with the local scoli specialist that it would probably be better to

try to avoid more surgery). Complete strangers would sometimes

approach me when I was still quite young and tell me that I should

stand up straight. Other (older) strangers with back problems would

ask if I had had back surgery and mutter, " you poor thing "

When the scoli specialist sent me for physical therapy, I checked to

see what the PT wrote as the diagnosis. It was surgically induced

kyphosis.

Walking is painful. My favorite exercise is bike riding. It does a

terrific job of toning my lower back, buttocks and legs and is not

painful as long as I ride a real bicycle. Stationary bikes hurt.

Unfortunately, I go to work while it is still dark and there is no

way I feel like a bike ride AFTER work!! I used to ride 6 miles a

day and do free weights with the Body Electric show on PBS, but I

actually got larger all over when I started exercising every day (my

stomach got huge--I think I must not have been doing the stomach

crunches correctly--but my scoli doc says that as I lean forward,

the belly has got to go somewhere. I sure would like to get rid of

it.

The rod in my back was broken by the time I got out of the cast,

too. I don't think the fusion really worked. I have had a

handicapped parking permit since I was 19!!

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]

When I went back to school to get my teaching certificate, I called

Vocational Rehab. They said they only pay for one degree and that I

was on my own.

> In 1969 Texas Rehab certified me as disabled and paid for my

college training. Now that I'm needing their services again, they

won't even try to look up my records from before. I'm having to

totally re-certify, and I'm not at all sure I'll qualify since I

didn't show up with an arm load of proof. I haven't been to a

spinal doc in 20 years.

[Guest guest]

To my suffering sisters from Texas:

Did any of you receive college tuition assistance from Texas Rehabilitation

following your Harrington rod placement? Has anyone in this group applied

for assistance for TRC recently? I realize that this entry may not be of

interest to those outside of the Lone Star State. Please fill free to Email

me privately, if you wish. God Bless!

(labsol@...)

Harrington Rod 1977

HARMS 2003

Re: Let me introduce myself

>

>

> From what I understand, most people have harrington rods that are

> more or less vertical along their spine--I have 2 of those.

> However, I was fused to S1 the first time around, and so have a sort

> of horizontal bar across my pelvis.

>

> My chiropractor said they only should have done corrective surgery

> on people who had such severe scoliosis that one or more of the

> internal organs were compromised. I do think he was referring to

> the sagittal plane problems in general when he said the old

> scoliosis surgeons were either ignorant and didn't know what they

> were doing or criminal in their experimentation. He compared them

> with the surgeons who did experiments for Hitler. I was pretty

> surprised he was so vehement--but it was my last workman's comp

> visit and he had known a special petite woman who had a not-so-

> severe case of scoliosis and was killed on the operating table

> during her corrective surgery when the surgeon accidentally made a

> bad cut.

>

> You can see photos of my xrays at

> http://members.cox.net/bahadreama/scoliosis

>

> Most of the times I had seen the chiropractor, I was not in a lot of

> pain, because I had been taking the etodolac. However, after being

> off work for 2 weeks and having had a very busy, stressful day at

> work, my back was hurting. Plus, I hadn't taken the medication

> since I was doing a course of steroids after an asthma attack (and

> having difficulty taking enough of them since they said to take with

> food--I am really horrible about taking pills). So this last time I

> saw him, I was all bent over, had a hard time standing up after

> laying down, and could barely walk from the room where they put the

> ice pack and electrical stimulation on to the room with the spiffy

> table.

>

> As far as my problems at school, I found out that I need to be

> registered with the office of disability services if I really want

> to push the issue. That really doesn't make sense to me, since I

> have fit the legal definition of disabled since 1973 when vocational

> rehab committed to paying for my undergraduate education. When I

> tried to sign up with their office, they said they needed a detailed

> letter describing my disability and my limitations. I called the

> scoliosis specialist, and was told it might cost as much as $300 for

> such a letter depending on how much detail was needed. I faxed them

> the information from the school website, and never heard back from

> them. I got a letter from my PCP yesterday and have an intake

> appointment for next week. I am really hoping to be able to be

> certified as a full time student for less than full time enrollment

> since I have difficulty sitting at the computer long enough to do

> full time course work (I have had a few papers that I had to turn in

> a little late).

>

>

> > > Hi,

> > >

> > > My name is Kathy. I was one of the first 12 patients to

> receive

> > > Harrington Rods in my back at the age of 12 in Oklahoma City.

> I'm

> > > now 50 and have been battling back pain, flatback and

> arthritus in

> > > my back for years. I've found the most relief by keeping my

> > weight

> > > down and exercising (as much as possible) my lower back and

> abs.

> > > Also, lots of stretching seems to help. I'd appreciate any

> > > suggestions for exercises and stretching to reduce back pain.

> > Also,

> > > any suggestions to improve posture. I get so tired of

> explaining

> > to

> > > people why I don't stand up straight.

> > >

> > > Thanks, Kathy

> >

> >

> >

> > 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]

Thanks so much for your post, which I am only just reading now. Your situation

sounds rather complex, and I need to take some time to respond. I am so glad

you joined this group and appreciate your contributions. More soon . . . .

Re: Let me introduce myself

From what I understand, most people have harrington rods that are

more or less vertical along their spine--I have 2 of those.

However, I was fused to S1 the first time around, and so have a sort

of horizontal bar across my pelvis.

My chiropractor said they only should have done corrective surgery

on people who had such severe scoliosis that one or more of the

internal organs were compromised. I do think he was referring to

the sagittal plane problems in general when he said the old

scoliosis surgeons were either ignorant and didn't know what they

were doing or criminal in their experimentation. He compared them

with the surgeons who did experiments for Hitler. I was pretty

surprised he was so vehement--but it was my last workman's comp

visit and he had known a special petite woman who had a not-so-

severe case of scoliosis and was killed on the operating table

during her corrective surgery when the surgeon accidentally made a

bad cut.

You can see photos of my xrays at

http://members.cox.net/bahadreama/scoliosis

Most of the times I had seen the chiropractor, I was not in a lot of

pain, because I had been taking the etodolac. However, after being

off work for 2 weeks and having had a very busy, stressful day at

work, my back was hurting. Plus, I hadn't taken the medication

since I was doing a course of steroids after an asthma attack (and

having difficulty taking enough of them since they said to take with

food--I am really horrible about taking pills). So this last time I

saw him, I was all bent over, had a hard time standing up after

laying down, and could barely walk from the room where they put the

ice pack and electrical stimulation on to the room with the spiffy

table.

As far as my problems at school, I found out that I need to be

registered with the office of disability services if I really want

to push the issue. That really doesn't make sense to me, since I

have fit the legal definition of disabled since 1973 when vocational

rehab committed to paying for my undergraduate education. When I

tried to sign up with their office, they said they needed a detailed

letter describing my disability and my limitations. I called the

scoliosis specialist, and was told it might cost as much as $300 for

such a letter depending on how much detail was needed. I faxed them

the information from the school website, and never heard back from

them. I got a letter from my PCP yesterday and have an intake

appointment for next week. I am really hoping to be able to be

certified as a full time student for less than full time enrollment

since I have difficulty sitting at the computer long enough to do

full time course work (I have had a few papers that I had to turn in

a little late).

> > Hi,

> >

> > My name is Kathy. I was one of the first 12 patients to

receive

> > Harrington Rods in my back at the age of 12 in Oklahoma City.

I'm

> > now 50 and have been battling back pain, flatback and

arthritus in

> > my back for years. I've found the most relief by keeping my

> weight

> > down and exercising (as much as possible) my lower back and

abs.

> > Also, lots of stretching seems to help. I'd appreciate any

> > suggestions for exercises and stretching to reduce back pain.

> Also,

> > any suggestions to improve posture. I get so tired of

explaining

> to

> > people why I don't stand up straight.

> >

> > Thanks, Kathy

>

>

>

> 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]

OK, now I am putting it all together . . . You are " bahadreama, " who never did

supply a name that we could call you, and now you have a different " nom de

plume " ! I remember reading your whole, fascinating story some time ago, as well

as seeing your cast in which you made your doctor incorporate some sort of

support for developing areas.

I am so sorry you are having all this trouble with your school. I can't imagine

what they are thinking or why they are making things so difficult for you. That

is certainly not the idea behind the ADA, which was meant to make things EASIER.

Have you considered trying to get some legal counsel?

Re: Let me introduce myself

From what I understand, most people have harrington rods that are

more or less vertical along their spine--I have 2 of those.

However, I was fused to S1 the first time around, and so have a sort

of horizontal bar across my pelvis.

My chiropractor said they only should have done corrective surgery

on people who had such severe scoliosis that one or more of the

internal organs were compromised. I do think he was referring to

the sagittal plane problems in general when he said the old

scoliosis surgeons were either ignorant and didn't know what they

were doing or criminal in their experimentation. He compared them

with the surgeons who did experiments for Hitler. I was pretty

surprised he was so vehement--but it was my last workman's comp

visit and he had known a special petite woman who had a not-so-

severe case of scoliosis and was killed on the operating table

during her corrective surgery when the surgeon accidentally made a

bad cut.

You can see photos of my xrays at

http://members.cox.net/bahadreama/scoliosis

Most of the times I had seen the chiropractor, I was not in a lot of

pain, because I had been taking the etodolac. However, after being

off work for 2 weeks and having had a very busy, stressful day at

work, my back was hurting. Plus, I hadn't taken the medication

since I was doing a course of steroids after an asthma attack (and

having difficulty taking enough of them since they said to take with

food--I am really horrible about taking pills). So this last time I

saw him, I was all bent over, had a hard time standing up after

laying down, and could barely walk from the room where they put the

ice pack and electrical stimulation on to the room with the spiffy

table.

As far as my problems at school, I found out that I need to be

registered with the office of disability services if I really want

to push the issue. That really doesn't make sense to me, since I

have fit the legal definition of disabled since 1973 when vocational

rehab committed to paying for my undergraduate education. When I

tried to sign up with their office, they said they needed a detailed

letter describing my disability and my limitations. I called the

scoliosis specialist, and was told it might cost as much as $300 for

such a letter depending on how much detail was needed. I faxed them

the information from the school website, and never heard back from

them. I got a letter from my PCP yesterday and have an intake

appointment for next week. I am really hoping to be able to be

certified as a full time student for less than full time enrollment

since I have difficulty sitting at the computer long enough to do

full time course work (I have had a few papers that I had to turn in

a little late).

> > Hi,

> >

> > My name is Kathy. I was one of the first 12 patients to

receive

> > Harrington Rods in my back at the age of 12 in Oklahoma City.

I'm

> > now 50 and have been battling back pain, flatback and

arthritus in

> > my back for years. I've found the most relief by keeping my

> weight

> > down and exercising (as much as possible) my lower back and

abs.

> > Also, lots of stretching seems to help. I'd appreciate any

> > suggestions for exercises and stretching to reduce back pain.

> Also,

> > any suggestions to improve posture. I get so tired of

explaining

> to

> > people why I don't stand up straight.

> >

> > Thanks, Kathy

>

>

>

> 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]

Hi, Sharon,

I haven't been able to pull up SB's photo yet but remember seeing it before. It

was very dramatic.

MANY, many of us have been in casts similar to hers! Generally for months on

end, too (with cast changes now and then). You must be one of the " young things "

at this list -- I sometimes forget that we do have some interesting variations

in our group demographic. Thank heavens if you escaped such a cast yourself.

Re: Let me introduce myself

yes, Sharon, as a matter of fact, I was never able to stand up

straight again. My chiropractor said the braces and casts were

another stupid idea because they helped the muscles atrophy. He's a

big proponent of excercise, but I haven't really taken the time to

exercise on a regular basis since going back to school (If I had

some extra time, I would really like to spend it sleeping!!)

Ever since getting out of the cast, I have no tolerance for standing

up. The forward lean has gotten really bad (but I tend to agree

with the local scoli specialist that it would probably be better to

try to avoid more surgery). Complete strangers would sometimes

approach me when I was still quite young and tell me that I should

stand up straight. Other (older) strangers with back problems would

ask if I had had back surgery and mutter, " you poor thing "

When the scoli specialist sent me for physical therapy, I checked to

see what the PT wrote as the diagnosis. It was surgically induced

kyphosis.

Walking is painful. My favorite exercise is bike riding. It does a

terrific job of toning my lower back, buttocks and legs and is not

painful as long as I ride a real bicycle. Stationary bikes hurt.

Unfortunately, I go to work while it is still dark and there is no

way I feel like a bike ride AFTER work!! I used to ride 6 miles a

day and do free weights with the Body Electric show on PBS, but I

actually got larger all over when I started exercising every day (my

stomach got huge--I think I must not have been doing the stomach

crunches correctly--but my scoli doc says that as I lean forward,

the belly has got to go somewhere. I sure would like to get rid of

it.

The rod in my back was broken by the time I got out of the cast,

too. I don't think the fusion really worked. I have had a

handicapped parking permit since I was 19!!

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]

Uh, no, , my surgery was done in 1971, over 32 years ago. I was spared

the cast down to the knees, but got the good-ol' rack & Risser, up to the top of

my head. (We are a big bunch to keep track of, aren't we! :^)

My dad's surgery was in 1974, 2+ years after mine, and being 47 at the time he

wasn't given the glorious rack treatment, but got the gosh-darn plaster

contraption down to the knees, with hips bent, like SB's. There are probably

other factors involved; I know he has 2 Harrington rods, but not in SB's fancy

configuration. But wouldn't you think that cast would be even worse of a

flatback inducer, with the hips and knees bent in one position for 3 months or

so?!

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Re: Let me introduce myself

yes, Sharon, as a matter of fact, I was never able to stand up

straight again. My chiropractor said the braces and casts were

another stupid idea because they helped the muscles atrophy. He's a

big proponent of excercise, but I haven't really taken the time to

exercise on a regular basis since going back to school (If I had

some extra time, I would really like to spend it sleeping!!)

Ever since getting out of the cast, I have no tolerance for standing

up. The forward lean has gotten really bad (but I tend to agree

with the local scoli specialist that it would probably be better to

try to avoid more surgery). Complete strangers would sometimes

approach me when I was still quite young and tell me that I should

stand up straight. Other (older) strangers with back problems would

ask if I had had back surgery and mutter, " you poor thing "

When the scoli specialist sent me for physical therapy, I checked to

see what the PT wrote as the diagnosis. It was surgically induced

kyphosis.

Walking is painful. My favorite exercise is bike riding. It does a

terrific job of toning my lower back, buttocks and legs and is not

painful as long as I ride a real bicycle. Stationary bikes hurt.

Unfortunately, I go to work while it is still dark and there is no

way I feel like a bike ride AFTER work!! I used to ride 6 miles a

day and do free weights with the Body Electric show on PBS, but I

actually got larger all over when I started exercising every day (my

stomach got huge--I think I must not have been doing the stomach

crunches correctly--but my scoli doc says that as I lean forward,

the belly has got to go somewhere. I sure would like to get rid of

it.

The rod in my back was broken by the time I got out of the cast,

too. I don't think the fusion really worked. I have had a

handicapped parking permit since I was 19!!

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]

Oops, sorry, Sharon. This has been a long day, and I am kind of overloaded. I

realized almost immediately when I re-read your letter that you were referring

to some kind of bend in SB's cast, which I do not remember. Meanwhile, despite

having reinstalled Windows out of necessity last week, I am having some weird

problems. My software is literally barking at me when I try to open up some

files. I am tempted to blame a family member who recently reinstalled AOL

Instant Messenger, which is episodically playing musical notes (not at the same

time as the bowwowws) to let me know that his friends are sending him messages

(or someone is doing something).

So, before my anti-virus software kicks in with its regular programmed scan and

probably kicks me offline . . .

Yes, I THOUGHT you had been in one of those godforsaken casts.

Pending successful re-viewing of SBs picture and going on your verbal

description alone, it sounds as if someone definitely programmed poor SB for a

bad sagittal-plane problem.

I may have more to say when I have given the old PC (not to mention the old

brain) a nap. Thanks for setting me straight while reassuring me that at least

I remembered one thing right!

(Oh, goody, a popop -- the software I downloaded is ready to use. Now, what

software would that be, pray tell?)

PS to Jennie -- I did manage to print out the Topamax material and will hope to

get back to you. Of course you may well have contacted a knowledgeable MD by

then and gotten the scoop, in which case maybe you can educate all of us.

For now, suffice it to say that I find the whole area of acid-base metabolism

enormously complex and really need to look at all this info. carefully before I

feel halfway competent to hazard a guess . . . .

Best,

Re: Let me introduce myself

yes, Sharon, as a matter of fact, I was never able to stand up

straight again. My chiropractor said the braces and casts were

another stupid idea because they helped the muscles atrophy. He's a

big proponent of excercise, but I haven't really taken the time to

exercise on a regular basis since going back to school (If I had

some extra time, I would really like to spend it sleeping!!)

Ever since getting out of the cast, I have no tolerance for standing

up. The forward lean has gotten really bad (but I tend to agree

with the local scoli specialist that it would probably be better to

try to avoid more surgery). Complete strangers would sometimes

approach me when I was still quite young and tell me that I should

stand up straight. Other (older) strangers with back problems would

ask if I had had back surgery and mutter, " you poor thing "

When the scoli specialist sent me for physical therapy, I checked to

see what the PT wrote as the diagnosis. It was surgically induced

kyphosis.

Walking is painful. My favorite exercise is bike riding. It does a

terrific job of toning my lower back, buttocks and legs and is not

painful as long as I ride a real bicycle. Stationary bikes hurt.

Unfortunately, I go to work while it is still dark and there is no

way I feel like a bike ride AFTER work!! I used to ride 6 miles a

day and do free weights with the Body Electric show on PBS, but I

actually got larger all over when I started exercising every day (my

stomach got huge--I think I must not have been doing the stomach

crunches correctly--but my scoli doc says that as I lean forward,

the belly has got to go somewhere. I sure would like to get rid of

it.

The rod in my back was broken by the time I got out of the cast,

too. I don't think the fusion really worked. I have had a

handicapped parking permit since I was 19!!

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]

SB,

I was originally fused to the sacrum and have the two vertical rods,

but no horizontal bar across my pelvis.

I am always on the lookout for others who were originally fused to

the sacrum. I think in the year and 1/2 I've been reading this

board, I've only come across two or three. If there are any newbies

reading who were originally fused to the sacrum, I'd love to hear

from you,

Good luck with your school situation, SB. When I worked in

education, I was the one who asked disabled students for a letter

from their medical professional giving evidence of their disability

and what accommodations were needed so that it could be determined if

the accommodations were reasonable for the school to make. No

student one ever told me that it cost a lot of $ to get the

documentation from their doctors, though. Yikes, $300.00 seems

excessive to me!! The only thing I remember is that the testing to

document a learning disability had a reputation for being quite

expensive, but fortunately most students had already been diagnosed

before they got to college age. Is that scoliosis specialist you

mentioned someone you've already seen and received a diagnosis from?

If yes, could it be the accommodations part that is the sticky point?

loriann

[Guest guest]

This is interesting. I get the impression that you are pretty unusual in that

respect. I wonder why they fused you that far down.

Re: Let me introduce myself

SB,

I was originally fused to the sacrum and have the two vertical rods,

but no horizontal bar across my pelvis.

I am always on the lookout for others who were originally fused to

the sacrum. I think in the year and 1/2 I've been reading this

board, I've only come across two or three. If there are any newbies

reading who were originally fused to the sacrum, I'd love to hear

from you,

Good luck with your school situation, SB. When I worked in

education, I was the one who asked disabled students for a letter

from their medical professional giving evidence of their disability

and what accommodations were needed so that it could be determined if

the accommodations were reasonable for the school to make. No

student one ever told me that it cost a lot of $ to get the

documentation from their doctors, though. Yikes, $300.00 seems

excessive to me!! The only thing I remember is that the testing to

document a learning disability had a reputation for being quite

expensive, but fortunately most students had already been diagnosed

before they got to college age. Is that scoliosis specialist you

mentioned someone you've already seen and received a diagnosis from?

If yes, could it be the accommodations part that is the sticky point?

loriann

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]

I don't know, but I'm not that fond of being at all unusual!! I

remember at the time someone told my mom that there were only a

couple of girls in the country like me and I thought they were

talking about S curves. That can't be right, though, can it because

I've heard about a lot of people since with S curves? Maybe it was

something to do with the location of the bends of the curve? T6 - L2

was 29 degrees. T 12 - L4 was 62 degrees and L4 - sacrum was 34

degrees. Maybe they fused to sacrum because the bottom curve only

involved L4 and L5? Actually that kind of makes sense, but I have no

idea how that compares to other people.

Well, this is probably a good place for me to put a plug in asking

more members to post their information to the nice database on this

site, if they are so inclined. It is so interesting to read the

various data. We are quite a group if I do say so myself!! Best

wishes to everyone,

loriann

> This is interesting. I get the impression that you are pretty

unusual in that respect. I wonder why they fused you that far down.

>

>

> Re: Let me introduce myself

>

>

> SB,

>

> I was originally fused to the sacrum and have the two vertical

rods,

> but no horizontal bar across my pelvis.

>

> I am always on the lookout for others who were originally fused

to

> the sacrum. I think in the year and 1/2 I've been reading this

> board, I've only come across two or three. If there are any

newbies

> reading who were originally fused to the sacrum, I'd love to hear

> from you,

>

> Good luck with your school situation, SB. When I worked in

> education, I was the one who asked disabled students for a letter

> from their medical professional giving evidence of their

disability

> and what accommodations were needed so that it could be

determined if

> the accommodations were reasonable for the school to make. No

> student one ever told me that it cost a lot of $ to get the

> documentation from their doctors, though. Yikes, $300.00 seems

> excessive to me!! The only thing I remember is that the testing

to

> document a learning disability had a reputation for being quite

> expensive, but fortunately most students had already been

diagnosed

> before they got to college age. Is that scoliosis specialist you

> mentioned someone you've already seen and received a diagnosis

from?

> If yes, could it be the accommodations part that is the sticky

point?

>

> loriann

[Guest guest]

I enjoy the posts too, Loriann, including this interesting one from you. I

still wish we would get off our coccygeal regions and put more of our data in

the more permanent-appearing regions of this site. Thanks for nicely nudging me

a mite on this point.

I think each one of us is unusual in some way. Though I, too, would probably

rather be more usual.

Best,

Re: Let me introduce myself

>

>

> SB,

>

> I was originally fused to the sacrum and have the two vertical

rods,

> but no horizontal bar across my pelvis.

>

> I am always on the lookout for others who were originally fused

to

> the sacrum. I think in the year and 1/2 I've been reading this

> board, I've only come across two or three. If there are any

newbies

> reading who were originally fused to the sacrum, I'd love to hear

> from you,

>

> Good luck with your school situation, SB. When I worked in

> education, I was the one who asked disabled students for a letter

> from their medical professional giving evidence of their

disability

> and what accommodations were needed so that it could be

determined if

> the accommodations were reasonable for the school to make. No

> student one ever told me that it cost a lot of $ to get the

> documentation from their doctors, though. Yikes, $300.00 seems

> excessive to me!! The only thing I remember is that the testing

to

> document a learning disability had a reputation for being quite

> expensive, but fortunately most students had already been

diagnosed

> before they got to college age. Is that scoliosis specialist you

> mentioned someone you've already seen and received a diagnosis

from?

> If yes, could it be the accommodations part that is the sticky

point?

>

> loriann

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]

Hi Loriann,

I am not sure how to post data to the data base here. I will tell you that

my surgery was a bit like your own. In 1992 I had Harrington/Luque rods placed

with fusion from T6 to L5. I was already 57 years of age at that time, with

very severe curvatures. While I was recovering, my mother (now deceased) was

at my house when a neighbor visited to see how I was. I heard my mother tell

my friend that, " years ago they would have put people like this away " ! This

was in 1992! I do hope that your mother was not on the same wavelength! I

always knew that my mother was embarrassed by my condition, but she REALLY was

brought up in the Dark Ages.

So, how does one get their info into the data base? And, are you OK? I do

hope so! With groups like this one, how can we not be!

Sincerely,

Carole

[Guest guest]

,

Really, how DO we get our data into the data base spoken of? Is there really

like a relational data base? Or is it a given once we chat?

Carole the elder