Re: (unknown)

June 18, 2004

Hi y,

Sounds like you are well on your way to recovery. Good advice about

the CPM and ankle pumps. I also was instructed to squeeze my butt

muscles.

I was put on the CPM machine in the recovery room. I was on it 24/7

for the first 4 days, except when I had to use the bathroom, etc.

When I was in rehab, I was on it for about 4 hours every night. I

actually found it soothing. I had almost full extentsion after two

days. I'm sure it was because of the CPM.

I wish you a smooth and speedy recovery.

Marley

June 18, 2004

Hi y,

Well your doing good I never tried e-mailing on a laptop.LOL LOL

Well I'm glad your doing ok I don't remember those machines I guess in two years you forget. Well you take care.

Susie or juneflower60scottyzpt@... wrote:

hAD MY knee done on Mon, a nd a friend brought in a laptop.....but I can't get used to the keyboard, so pardon the mistakes, yet all. Can fully straighten the knee, straight leg raise, no swelling to slpeak of, walking when i WANT TO and am on rehab for a cxouple of days.No pain meds cuz they drop my pressure.....terrible IV access, so off those. A couple of words of advice.....do three things as soon as you;re out of recovery room.......begin moving your leg in and out, pumping your ankle, and doing quad sets....even if its just when the CPM machine is at full extension. this is what keeps the swelling down. The cuff they use at your thigh from the CPM machine make an excellent exercise device.....you can hook it under your foot and move your leg anywhere.

can't talk any longer as the guy who lent me the laptop needs to get online.....y

June 19, 2004

Jupiter,FL

Regards,

Betty

June 20, 2004

Mom said that some drs. use CPMs for THR patients as

well. She used one when she broke her knee to keep it

from fusing again.

Donna

--- Doris Provost <dorisprovost2003@...> wrote:

> Thanks, I had 2 hip replacements. I didn't realize

> that you guys who used these CPM's were knee

> replacements patients.

> Doris

>

> Marley <marley333@...> wrote:

> Hello Doris,

>

> A CPM is a Constant Passive Motion machine. After

> tkr, legs are put

> into these " fur " lined devices. They move the leg

> kind of like a

> biking motion. It stretches out the leg and then

> bends the knee over

> and over again. In the hospital, the type they had

> were like little

> cradles on the bed, in which my legs were

> positioned. In the rehab,

> they had a kind that are suspended from the top of

> the bed. My legs

> were raised and positioned into them. They also can

> be set on a

> gentle speed or a high speed which stretches and

> bends much further

> and in a quicker cycle.

>

> Selene

>

June 21, 2004

Agression is the # 1 problem for my family. Holds CB back...and we are constanly looking for better tools for him.

CB's Granny

ps. we have been on a waiting list for ABA.....the school he attends doesnt use it

June 21, 2004

Well, aggression is Karac's number one problem too. If you find the answer, please share with us. Pat K

June 22, 2004

Hi Bee, I just saw this and right off the bat I need to say that I am a fast

metabolizer. I need to eat early and often and metabolize food very

quickly... This goes back to our blood type discussion. Remember it's said

the type O's generally ten to have high stomach acid and type A's may tend

to have low acid? Maybe others can weigh in? ~Robin

_____

From: Bee [mailto:beewilder@...]

Sent: Tuesday, June 22, 2004 5:17 AM

Subject: [ ] (unknown)

This is from an article at:

http://www.drlwilson.com/Articles/candida.htm

While I don't agree with everything Dr. writes this makes a

lot of sense regarding candida sufferers resulting in slow metabolism

and their inability to create the proper acid environment.

" CAUSES - SLOW METABOLISM

In their order of importance, causes include slow metabolism, copper

imbalance, alkaline intestines and tissues, medications, high

carbohydrate diets and other toxins.

Most people with candida are slow metabolizers. While their cells are

more acidic, their intercellular spaces are too alkaline. Their

bodies do not generate enough acid end products of metabolism such as

lactic acid.

Calcium, an alkaline-forming element, also builds up adding to the

alkalinity. Candida thrives in an alkaline environment and becomes

able to invade tissues and cause serious illness.

Slow metabolizers are also often deficient in hydrochloric acid.

Stomach acid normally kills candida. This is one reason acidophilus,

an acid-forming organism, often helps alleviate candida. "

From Bee

June 23, 2004

Re: (unknown)

> Hi Anita,

>

> When people have been talking about PT on here that is

> generally what the PT is for, to strengthen the medial

> muscles so that they are more balanced and keep the

> kneecap in proper position.

In my case, the kneecap attachments were just tight, period. After the LR I

can feel my kneecap being pulled to the inside.

As you probably have

> noticed from most of the postings, the people that

> have a problem with the kneecap being pulled laterally

> tend not to put in the effort on the muscle building

> that they should and instead go for the quick fix of a

> lateral release.

In my case, by the time my knees were properly diagnosed, they were too

painful and inflammed to even do PT. Every doctor and therpist I saw agreed

to that. They tried cortisone shots on both knees twice to try and cut the

pain and inflammation, but the shots only lasted 3-4 days. I wish the first

doctors I saw over a year ago would have recommended PT. It may have helped

then. Don't just sell everyone short. I'm sure there are a lot of people

on this group with CP much worse than yours.

Mike

MT

June 23, 2004

I just read about it the other day. Makes sense to me too. Although I think I

would have just an LR and wait to see if it worked. You can get into trouble if

the kneecap is moved too far medially.

Ann

(unknown)

Hi team,

I met my doctor today. He said that in

addition to lateral release, its better to tighten the

muscle on the other side also so that it pulls the

knee cap medially. I have been a member of this group

for about a month and no one has ever mentioned about

this. Has anyone done this before? If your doctor has

not mentioned about this, pls ask him. It might help

us all.

By the way, many pastors are gathering in Ohio this

independence day to pray for independence from

problems. I have asked them to place a prayer cloth

for all the members in our team.

If you believe in miracles, pls pray for this on July

4th. For more info pls visit www.breakthrough.net.

Thanks,

Anita.

June 23, 2004

I guess I need to clarify here too. I wasn't responding to you. I was

responding to . Sorry for any mix up.

Mike

MT

Re: (unknown)

>

> > Hi Anita,

> >

> > When people have been talking about PT on here that

> is

> > generally what the PT is for, to strengthen the

> medial

> > muscles so that they are more balanced and keep the

> > kneecap in proper position.

>

> In my case, the kneecap attachments were just tight,

> period. After the LR I

> can feel my kneecap being pulled to the inside.

>

> As you probably have

> > noticed from most of the postings, the people that

> > have a problem with the kneecap being pulled

> laterally

> > tend not to put in the effort on the muscle building

> > that they should and instead go for the quick fix of

> a

> > lateral release.

>

> In my case, by the time my knees were properly

> diagnosed, they were too

> painful and inflammed to even do PT. Every doctor and

> therpist I saw agreed

> to that. They tried cortisone shots on both knees

> twice to try and cut the

> pain and inflammation, but the shots only lasted 3-4

> days. I wish the first

> doctors I saw over a year ago would have recommended

> PT. It may have helped

> then. Don't just sell everyone short. I'm sure there

> are a lot of people

> on this group with CP much worse than yours.

>

> Mike

> MT

>

June 24, 2004

Sorry Mike, didn't mean to slam ya. I should have read closer

Mike Bernhardt <mlbernhardt@...> wrote:Sorry Mark, I should have split

up my reply to another post. That wasn't me

who made the accusation. I didn't like the accusation either. You are

quite correct.

Mike

Re: (unknown)

>

> > Hi Anita,

> >

> > When people have been talking about PT on here that is

> > generally what the PT is for, to strengthen the medial

> > muscles so that they are more balanced and keep the

> > kneecap in proper position.

>

> In my case, the kneecap attachments were just tight, period. After the LR

I

> can feel my kneecap being pulled to the inside.

>

> As you probably have

> > noticed from most of the postings, the people that

> > have a problem with the kneecap being pulled laterally

> > tend not to put in the effort on the muscle building

> > that they should and instead go for the quick fix of a

> > lateral release.

>

> In my case, by the time my knees were properly diagnosed, they were too

> painful and inflammed to even do PT. Every doctor and therpist I saw

agreed

> to that. They tried cortisone shots on both knees twice to try and cut

the

> pain and inflammation, but the shots only lasted 3-4 days. I wish the

first

> doctors I saw over a year ago would have recommended PT. It may have

helped

> then. Don't just sell everyone short. I'm sure there are a lot of people

> on this group with CP much worse than yours.

>

> Mike

> MT

>

June 24, 2004

Tlkeel,

Wow! What a great introduction! You really hit on many topics of our

group! I hope you find this sight very useful for information! Remember we

are

all in the same situation!

June 24, 2004

Just wanted to say - I know there is a big northeast group here, but I

am also from B'ham. There are 2 others on this site I know of from near

here. I went to NYC for my surgery and I believe the other 2 ladies are

using Lenke and Bridwell in St louis. (One is for initial scoliosis

surgery; maybe both are). Anyway - you are not alone here in the heat

and humidity!

terrasculptor wrote:

>I am grateful for having found this group. I have delayed writing to

>introduce myself for several reasons, which include time

>constraints, the need to make decisions regarding how much to say in

>a public forum and the need to decide how much is actually relevant

>or meaningful to others. The issues are similar to those of creative

>writing: Do I start with the present or the beginning? Do I describe

>things that have significantly influenced my experience of life with

>scoliosis, or only the scoliosis - the most common thread in our

>lives? I simply have not taken the time to decide these things.

>However, this letter has been on my mind.

>

>I used computers before there was public access to the Internet,

>when people shared information via bulletin boards. There was not

>really a simple way to access medical research or information. I

>certainly did not know, then, how to access a medical library. The

>first, single article I found about scoliosis, years ago, described

>the natural history of untreated scoliosis. It stated that people

>with scoliosis died from having their internal organs crushed by the

>collapse of their bodies by the age of 30. I am now 47. I couldn't

>find more information for years. When I did, it typically referred

>to what I - in my condition - would consider to be an unrecognizable

>curvature (i.e., very minor in comparison to my own). Now, I read

>current research. I am much more educated about this condition. I

>have tried to find information about others with similar health

>issues. Everyone seemed to: (a) have a less severe form of

>scoliosis, ( be considering their first surgery, or © have had

>surgery that used newer generations of instrumentation which

>provided them with better cosmetic results. Nothing seemed relevant

>to my experience.

>

>In the past few months, I have read more about this than I had seen

>in my entire lifetime. I had even come across the Feisty Flatbackers

>website a couple of times. Although I have first generation

>Harrington distraction rods on both sides of my spine, I had not

>followed the link, because I did not think that the condition -

> `flatback' or Harrington Rod Mal-alignment Syndrome (HARMS) - was

>relevant to my situation. Then I did a search on the

>terms `scoliosis' and `emotional impact' and discovered the articles

>by beth Mina. Wow! I wanted to cry. Actually, I did, several

>times over the next few days. I made a checklist of the items she

>included in Scoliosis Overcompensation Syndrome... I demonstrate every

>single symptom. I am sad that she has removed links to her work. I

>have seen the comments that have been made regarding her combination

>of factual research, anonymous statements, anecdotal data, and

>emotional reaction. I know the difference between peer-reviewed

>scientific research and opinion... I am in the process of completing

>a dissertation in health services research. What I am saying is that

>her work is significant and that it is relevant to me! She collected

>tremendous volumes of meaningful information into organized

>documents that have become classic references for people with

>scoliosis. And, with regards to the accuracy of the

>spellings `pseudarthrosis' versus `pseudoarthrosis', I have found

>multiple articles in medical research databases that do include the

>letter `o'. Therefore, while the former may be more correct, the

>latter can certainly be found in sources that are considered formal

>and reliable. I also found that whatever spelling variant she used

>for any word, she used it consistently.

>

>After I read Ms. Mina's articles, I continued my search and found

>postings of several individuals who have experienced post traumatic

>stress and anxiety disorders as a result of the experiences that

>occur because of having scoliosis. Eventually, I decided to access

>the `Fiesty' postings. I had thought that I did not suffer from

>flatback syndrome. At this site, I read messages that ranged from

>discussions of minor disagreements among members to postings that

>described things that I had never heard from anyone but myself. I

>began to recognize names of people who wrote about things I had

>experienced or who wrote to encourage others or to provide

>explanations or helpful suggestions to them. I decided to attempt to

>read the messages from the first posting. I quickly learned that my

>time constraints will not allow me to do this at present. There are

>now 7,000 messages! I have not found a way to search all messages on

>this particular site based on message content.

>

>I have found the postings on the site to be valuable. I sincerely

>thank everyone who has contributed. There are brief notes that are

>very helpful and carefully constructed letters that are meaningful

>to me. I have found the stories of other people's experiences to be

>helpful in coming to terms with my own situation. The experience of

>finding writings by people with life events in common with my own

>has encouraged me - as I attempt to answer questions for myself

>regarding how much to say - to be more open in what information I

>share. I will attempt to describe my own path here.

>

>When I first began to research scoliosis, I read everything - all

>topics: information about congenital, idiopathic, and degenerative

>scoliosis and every syndrome with any connection to scoliosis. Then,

>I began to search for information that related only to my own

>experience: idiopathic, early onset, untreated until adulthood. I

>wanted to narrow my search to provide information about myself by

>excluding any diagnosis I had not experienced, such as particular

>anomalies of the spine. In reviewing the research and reading the

>first-hand experiences of others, I began to find symptoms I had

>experienced. From my own discovery of and navigation through the

>information, I understand that people want to read about diagnoses

>and conditions similar to their own. Otherwise, there is always a

>question of whether the information is relevant to one's own life.

>

>So, for anyone who is disappointed to have to filter through

>conditions irrelevant to their personal journey, I am sorry. I have

>felt the discouragement of not knowing anyone like me. However, my

>experiences are nearly identical to the `average' experiences of

>people with Harrington rods. The primary differences are that I have

>a condition that masked my scoliosis much of my life and that the

>rods were intended to prevent progression not to attain correction.

>Aside from these problems, I have never even had more common

>maladies such as tonsillitis or appendicitis. I have S-type double

>major scoliosis, excessive kyphosis, C-shaped lumbar lordosis, and

>spondylolisthesis. I have also discovered - through my own research -

> that the other condition, which I have had since I was a month old,

>is now referred to as Multiple Familial Lipomatosis (MFL). Until a

>physician dictated the term `MFL' into my medical record this week,

>no physician had used the phrase in talking with me or in any

>medical records that I have seen. My numerous hospital discharge

>summaries refer to `multiple massive benign infiltrating lipomas'.

>The lipomas, which cover my ribcage front and back, hid

>kyphoscoliosis as the cause of the deformities of my spine and ribs.

>I have also learned that the S-shaped curves often hide the

>deformity. Unfortunately, both conditions have served to make me

>appear to others as simply being short and overweight, regardless of

>the actual status of my weight.

>

>Undergoing numerous surgical operations for MFL (12 by the age of

>21) allowed me to believe throughout childhood that the tumors would

>all be removed and I would appear physically and

>cosmetically `normal'. However, at the age of 23, I became paralyzed

>and was told I would never walk again. I had fusion surgery, got the

>rod implants, and, fortunately, did regain the ability to walk. The

>year I turned 40, I gained access to some of my medical records

>(because they were requested for a genetics study) and learned that

>I had been diagnosed with kyphoscoliosis before the age of 8. I feel

>that I grew going to hospitals on and off for years, but, still,

>neither I nor my parents were told about the scoliosis. I find it

>that incomprehensible.

>

>I hope that people can recognize some similarities between my life

>and their own. I found descriptions of the actual emotional and

>physical experiences of others - as opposed to disease descriptions -

> to be very helpful. I can get the facts from the research. From

>people like myself, I gain things that neither the doctors nor the

>research can state. Finding that is what made me feel that people

>actually do exist who have felt what I feel. Please realize that,

>while I am describing some negative events in my life, these do not

>define my entire life. I am happy and positive and successful and

>productive. I am not totally defined by my health or my collective

>positive and negative interactions with healthcare or the medical

>industry. My health, aside from the conditions I describe, has been

>excellent to the present. Also, I do not blame physicians for

>shortcomings in knowledge or techniques. I do find fault with the

>way they have interacted with me as a person and specific ways that

>I have been failed by individuals... I am not referring to medical

>knowledge or capabilities, but to failures in human interactions in

>the process of providing/receiving healthcare services. After a

>lifetime of dealing with physical and appearance related issues on a

>social level, I feel extremely frustrated when I am forced to deal

>with ignorance and lack of caring from so many in the health care

>industry.

>

>I have written many more pages describing my specific experiences in

>healthcare. Some are unbelievable. It is far too much to post here.

>At first, I did not want to be at all identifiable online. However,

>I will state that I am 47 years old. I had 12 operations between the

>ages of 16 months and 21 years old. At 23 I became paralyzed, but

>spent ten months still trying to walk as every physician I consulted

>stated that nothing was wrong. Finally, one physician said that I

>had to get to a hospital and would be completely paralyzed within 24

>hours. When I arrived, I could not tell the doctors which leg was

>being pinpricked. I was hospitalized 29 days and fused from T3 to

>L3. I have two Harrington rods each the full length of the fusion,

>one on each side. I was not `straightened'. My curves WITH RODS are

>at least 53 degrees thoracic and 61 lumbar, with the classic `S'. My

>lumbar lordosis forms a complete `C' front to back. I do not know

>the measurement of the kyphosis, but, it forms a `C' and the bottom

>of the `C' begins right above the lordosis and the top is near the

>top of the rods. Bone had to be built outward to hold the bottom

>ends of the rods, even after they were curved for my body.

>Amazingly, most people do not see any deformity, but believe I am

>very overweight. When hearing discussions about planning future

>surgeries, I have been asked if I was referring to gastric bypass

>surgery. For me, throughout my life, being viewed as being

>overweight has been far worse than any reactions to other

>abnormalities. I am viewed as being responsible for that. People

>assume that I overeat and that I am sedentary regardless of what I

>eat or my level of activity. I find that extremely annoying.

>

>I believe that there is a great likelihood that I will have to

>undergo revision surgery. I have been told that my only option is

>fusion to the sacrum, which I have avoided for years. I was fused in

>1980 in another state and have no idea where any of the original

>neuro- or ortho- surgeons are. I consulted an orthopedic surgeon

>this month who looked at me and stated, verbatim, " Oh, it's too late

>for you! " I hate knowing that I need medical services but have to

>cope with being treated that way to ever find anyone and obtain

>care. I had typed ten additional pages about those types of

>experiences. Some of them are actual medical experiences. I waited

>to post this until I could edit those out.

>

>With reference to prior postings, I am female and near Birmingham,

>Alabama. At the time when I was stripped to 3 items of clothing in

>the airport, I could not were a bra over certain scars. I wore

>blouses made to hide that fact (i.e., heavier fabric, pockets on

>each side, etc.). I had to remove jacket, belt, shoes, etc. Even

>using the wand they tried to tell me that implants could not be

>detected. They finally just gave up. Regarding bras: People with

>kyphosis need a larger size on back than on front. If bras go around

>us, the cups are too far apart and the straps are too far apart in

>the back. If you get the smaller size and use extenders, the straps

>are even further out. Disproportion? I have right thoracic, left

>lumbar `S', with a rib hump (Who standardized the use of that term?

>It is even in the research!) on the front left. The hump has

>supported the left breast which allowed it to remain smaller (at

>least due to gravity, I guess!). Wearing bras more consistently,

>even though I was told not to have them over my many scars, has made

>me more symmetrical in that regard than I have been all my life.

>

>I would not wish this disease on anyone, but I am very glad to find

>all of you!

>

>Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

>

June 24, 2004

Hi ,

My name is also . I am 19 years old and have Polyarticular JRA and

Spondyloarthropathy (that means that I am the HTL-7 or whatever it is negative

of ankylosing spondilitis.. basically though it is the same thing) I have been

fighting this disease for 13 years. Methotrexate is a once a week

medication, low dose form of chemotherapy. Some of the most common side effects

are

mouth sores, nauseous, diarrhea, and vomiting.. but usually after a few days its

fine. For some methotrexate is great for others not so much.. didn't do

really anything for me. I'm on Enbrel now and its a pretty good medication..

its a

twice a week shot that is given sub-q (in the fat). There really aren't side

effects aside from a bit of a weakened immune system (not noticeable in some)

and sometimes a small reaction at the injection site but that's typically

all. I'm sorry to hear about this new diagnosis.. Hopefully she responds to

treatment early and goes straight into remission. Luckily the doctor is

treating

her aggressively which gives her a great possibility to finding remission.

This is the best place to come for answers.

(Poly JRA and Spondy, 19)

June 24, 2004

Hi ,

Sorry to hear your little niece has Poly JRA but you are such a wonderful

aunt to become involved.

Methotrexate has been commonly used for JRA for a very long time.The most

common side effects is on the GI tract followed by flu like symptoms,fatigue and

mouth ulcers.The use of supplemental folic acid can help ease some symptoms

but the best way to avoid GI effects is to go sub-que.Added perk is it is proven

to be absorbed better.

Enbrel was aproved for JRA in early 1999 but they are still doing studies to

find out long term effects.So far serious side effects are those seen within

the general population.A TB test is recommended before hand.

My son has systemic JRA diagnosed 3yrs and 2 days ago.He started Enbrel along

with his other drugs in 10-02 and has been in complete control since 12-02.

It's hard to say if he gets sick more or worse.He was placed in day care at 2

and started getting all the infections and the last one triggered the JRA 2

months before his 3rd b-day.

has taken MTX for almost 3 yrs and has never had any side effects until

switching from injections to pills about 6 months ago,while tapering.He has

been on GERD medicine ever since.

You find a great ped rheumy that is willing to talk about things and do the

appropriate labs and don't be scared of the drugs.The drugs are potent and

every child may react differantly but a good ped rheumy knows what to look

for.Sounds like your niece has an aggressive one,which is great.The more

aggressive

therapy, the quicker and better

outcome is possible.

Hugs

Becki and 5systemic

June 24, 2004

Thank you for sharing your amazing story. I found your letter very thoughtful

and valuable in focusing some of the issues that many others have faced. I hope

you will continue to write to us. You may also want to consider posting some of

your additional material, with appropriate subtitles, in the " Files " section of

the website. Regarding searches, as you probably know, does provide at

least a primitive key-word search function which you might want to try for

plowing through the archives a bit more selectively.

Best,

(unknown)

I am grateful for having found this group. I have delayed writing to

introduce myself for several reasons, which include time

constraints, the need to make decisions regarding how much to say in

a public forum and the need to decide how much is actually relevant

or meaningful to others. The issues are similar to those of creative

writing: Do I start with the present or the beginning? Do I describe

things that have significantly influenced my experience of life with

scoliosis, or only the scoliosis - the most common thread in our

lives? I simply have not taken the time to decide these things.

However, this letter has been on my mind.

I used computers before there was public access to the Internet,

when people shared information via bulletin boards. There was not

really a simple way to access medical research or information. I

certainly did not know, then, how to access a medical library. The

first, single article I found about scoliosis, years ago, described

the natural history of untreated scoliosis. It stated that people

with scoliosis died from having their internal organs crushed by the

collapse of their bodies by the age of 30. I am now 47. I couldn't

find more information for years. When I did, it typically referred

to what I - in my condition - would consider to be an unrecognizable

curvature (i.e., very minor in comparison to my own). Now, I read

current research. I am much more educated about this condition. I

have tried to find information about others with similar health

issues. Everyone seemed to: (a) have a less severe form of

scoliosis, ( be considering their first surgery, or © have had

surgery that used newer generations of instrumentation which

provided them with better cosmetic results. Nothing seemed relevant

to my experience.

In the past few months, I have read more about this than I had seen

in my entire lifetime. I had even come across the Feisty Flatbackers

website a couple of times. Although I have first generation

Harrington distraction rods on both sides of my spine, I had not

followed the link, because I did not think that the condition -

`flatback' or Harrington Rod Mal-alignment Syndrome (HARMS) - was

relevant to my situation. Then I did a search on the

terms `scoliosis' and `emotional impact' and discovered the articles

by beth Mina. Wow! I wanted to cry. Actually, I did, several

times over the next few days. I made a checklist of the items she

included in Scoliosis Overcompensation Syndrome. I demonstrate every

single symptom. I am sad that she has removed links to her work. I

have seen the comments that have been made regarding her combination

of factual research, anonymous statements, anecdotal data, and

emotional reaction. I know the difference between peer-reviewed

scientific research and opinion... I am in the process of completing

a dissertation in health services research. What I am saying is that

her work is significant and that it is relevant to me! She collected

tremendous volumes of meaningful information into organized

documents that have become classic references for people with

scoliosis. And, with regards to the accuracy of the

spellings `pseudarthrosis' versus `pseudoarthrosis', I have found

multiple articles in medical research databases that do include the

letter `o'. Therefore, while the former may be more correct, the

latter can certainly be found in sources that are considered formal

and reliable. I also found that whatever spelling variant she used

for any word, she used it consistently.

After I read Ms. Mina's articles, I continued my search and found

postings of several individuals who have experienced post traumatic

stress and anxiety disorders as a result of the experiences that

occur because of having scoliosis. Eventually, I decided to access

the `Fiesty' postings. I had thought that I did not suffer from

flatback syndrome. At this site, I read messages that ranged from

discussions of minor disagreements among members to postings that

described things that I had never heard from anyone but myself. I

began to recognize names of people who wrote about things I had

experienced or who wrote to encourage others or to provide

explanations or helpful suggestions to them. I decided to attempt to

read the messages from the first posting. I quickly learned that my

time constraints will not allow me to do this at present. There are

now 7,000 messages! I have not found a way to search all messages on

this particular site based on message content.

I have found the postings on the site to be valuable. I sincerely

thank everyone who has contributed. There are brief notes that are

very helpful and carefully constructed letters that are meaningful

to me. I have found the stories of other people's experiences to be

helpful in coming to terms with my own situation. The experience of

finding writings by people with life events in common with my own

has encouraged me - as I attempt to answer questions for myself

regarding how much to say - to be more open in what information I

share. I will attempt to describe my own path here.

When I first began to research scoliosis, I read everything - all

topics: information about congenital, idiopathic, and degenerative

scoliosis and every syndrome with any connection to scoliosis. Then,

I began to search for information that related only to my own

experience: idiopathic, early onset, untreated until adulthood. I

wanted to narrow my search to provide information about myself by

excluding any diagnosis I had not experienced, such as particular

anomalies of the spine. In reviewing the research and reading the

first-hand experiences of others, I began to find symptoms I had

experienced. From my own discovery of and navigation through the

information, I understand that people want to read about diagnoses

and conditions similar to their own. Otherwise, there is always a

question of whether the information is relevant to one's own life.

So, for anyone who is disappointed to have to filter through

conditions irrelevant to their personal journey, I am sorry. I have

felt the discouragement of not knowing anyone like me. However, my

experiences are nearly identical to the `average' experiences of

people with Harrington rods. The primary differences are that I have

a condition that masked my scoliosis much of my life and that the

rods were intended to prevent progression not to attain correction.

Aside from these problems, I have never even had more common

maladies such as tonsillitis or appendicitis. I have S-type double

major scoliosis, excessive kyphosis, C-shaped lumbar lordosis, and

spondylolisthesis. I have also discovered - through my own research -

that the other condition, which I have had since I was a month old,

is now referred to as Multiple Familial Lipomatosis (MFL). Until a

physician dictated the term `MFL' into my medical record this week,

no physician had used the phrase in talking with me or in any

medical records that I have seen. My numerous hospital discharge

summaries refer to `multiple massive benign infiltrating lipomas'.

The lipomas, which cover my ribcage front and back, hid

kyphoscoliosis as the cause of the deformities of my spine and ribs.

I have also learned that the S-shaped curves often hide the

deformity. Unfortunately, both conditions have served to make me

appear to others as simply being short and overweight, regardless of

the actual status of my weight.

Undergoing numerous surgical operations for MFL (12 by the age of

21) allowed me to believe throughout childhood that the tumors would

all be removed and I would appear physically and

cosmetically `normal'. However, at the age of 23, I became paralyzed

and was told I would never walk again. I had fusion surgery, got the

rod implants, and, fortunately, did regain the ability to walk. The

year I turned 40, I gained access to some of my medical records

(because they were requested for a genetics study) and learned that

I had been diagnosed with kyphoscoliosis before the age of 8. I feel

that I grew going to hospitals on and off for years, but, still,

neither I nor my parents were told about the scoliosis. I find it

that incomprehensible.

I hope that people can recognize some similarities between my life

and their own. I found descriptions of the actual emotional and

physical experiences of others - as opposed to disease descriptions -

to be very helpful. I can get the facts from the research. From

people like myself, I gain things that neither the doctors nor the

research can state. Finding that is what made me feel that people

actually do exist who have felt what I feel. Please realize that,

while I am describing some negative events in my life, these do not

define my entire life. I am happy and positive and successful and

productive. I am not totally defined by my health or my collective

positive and negative interactions with healthcare or the medical

industry. My health, aside from the conditions I describe, has been

excellent to the present. Also, I do not blame physicians for

shortcomings in knowledge or techniques. I do find fault with the

way they have interacted with me as a person and specific ways that

I have been failed by individuals. I am not referring to medical

knowledge or capabilities, but to failures in human interactions in

the process of providing/receiving healthcare services. After a

lifetime of dealing with physical and appearance related issues on a

social level, I feel extremely frustrated when I am forced to deal

with ignorance and lack of caring from so many in the health care

industry.

I have written many more pages describing my specific experiences in

healthcare. Some are unbelievable. It is far too much to post here.

At first, I did not want to be at all identifiable online. However,

I will state that I am 47 years old. I had 12 operations between the

ages of 16 months and 21 years old. At 23 I became paralyzed, but

spent ten months still trying to walk as every physician I consulted

stated that nothing was wrong. Finally, one physician said that I

had to get to a hospital and would be completely paralyzed within 24

hours. When I arrived, I could not tell the doctors which leg was

being pinpricked. I was hospitalized 29 days and fused from T3 to

L3. I have two Harrington rods each the full length of the fusion,

one on each side. I was not `straightened'. My curves WITH RODS are

at least 53 degrees thoracic and 61 lumbar, with the classic `S'. My

lumbar lordosis forms a complete `C' front to back. I do not know

the measurement of the kyphosis, but, it forms a `C' and the bottom

of the `C' begins right above the lordosis and the top is near the

top of the rods. Bone had to be built outward to hold the bottom

ends of the rods, even after they were curved for my body.

Amazingly, most people do not see any deformity, but believe I am

very overweight. When hearing discussions about planning future

surgeries, I have been asked if I was referring to gastric bypass

surgery. For me, throughout my life, being viewed as being

overweight has been far worse than any reactions to other

abnormalities. I am viewed as being responsible for that. People

assume that I overeat and that I am sedentary regardless of what I

eat or my level of activity. I find that extremely annoying.

I believe that there is a great likelihood that I will have to

undergo revision surgery. I have been told that my only option is

fusion to the sacrum, which I have avoided for years. I was fused in

1980 in another state and have no idea where any of the original

neuro- or ortho- surgeons are. I consulted an orthopedic surgeon

this month who looked at me and stated, verbatim, " Oh, it's too late

for you! " I hate knowing that I need medical services but have to

cope with being treated that way to ever find anyone and obtain

care. I had typed ten additional pages about those types of

experiences. Some of them are actual medical experiences. I waited

to post this until I could edit those out.

With reference to prior postings, I am female and near Birmingham,

Alabama. At the time when I was stripped to 3 items of clothing in

the airport, I could not were a bra over certain scars. I wore

blouses made to hide that fact (i.e., heavier fabric, pockets on

each side, etc.). I had to remove jacket, belt, shoes, etc. Even

using the wand they tried to tell me that implants could not be

detected. They finally just gave up. Regarding bras: People with

kyphosis need a larger size on back than on front. If bras go around

us, the cups are too far apart and the straps are too far apart in

the back. If you get the smaller size and use extenders, the straps

are even further out. Disproportion? I have right thoracic, left

lumbar `S', with a rib hump (Who standardized the use of that term?

It is even in the research!) on the front left. The hump has

supported the left breast which allowed it to remain smaller (at

least due to gravity, I guess!). Wearing bras more consistently,

even though I was told not to have them over my many scars, has made

me more symmetrical in that regard than I have been all my life.

I would not wish this disease on anyone, but I am very glad to find

all of you!

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

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

advertised products.

June 24, 2004

Hi ,

Thanks for clarifying. I agree with your opinion

that we should avoid surgery and try exercises. My

doctor wanted me to go for an LR in 2 weeks. But I

have asked for a month's time. Still having hope. I

was taught leg raises. Can you tell me if it will help

build the medial retinaculum or should I try any other

exercises?

Thanks in advance,

Anita.

--- Wendt <freiburgerpdx@...> wrote:

> Anita,

>

> Mike was responding to my reply to you. His

> comments

> were directed at me. I hope this clears it up.

>

June 24, 2004

What a riveting tale!

To diagnose your kyphoscoliosis at age 8, and not to tell you or your parents

about it or to make any effort to get you into treatment was nothing short of

medical malpractice. Do I understand you correctly, that your spinal deformity

progressed to the point that you were permanently paralyzed?! That is

outrageous.

I do relate to a couple of things you have shared. I have a single lipoma, in

the region of my lumbo-sacral junction, which is the location of the vertebral

deformities which caused my congenital scoliosis. I am thankful that the

doctors treating me were not diverted by the lipoma from treating my truly

dangerous deformity. I learned at the age of 42 that I was also considered to

have a " widespread spina bifida occulta " . This diagnosis was never actually

shared with my parents or me. Since I have no paralysis or other symptoms of

the more common type of spina bifida, the doctors were apparently opting for the

use of lay language ( " We're not sure all her spinal cord nerves are enclosed by

the spinal column. " ), instead of the official diagnosis. I was irate when I

learned of the withholding of this important bit of information. But my

situation is nothing compared to yours!

Thank you for sharing some of your story with us, and I hope you will stay and

continue to participate in the group.

Sharon