New here

[Guest guest]

wrote:

> I just got finished taking a round of Diflucan and feel much better

> than I have in a long time. I am taking Acidophilus and Psyllum husk

> and cinnamon everyday. I drink plenty of water and take a good multi

> vitamin, potassium and calcium. I know now I need to start a diet that

> is sugar and yeast free.....I also drink colloidal silver everyday.

> I am just looking for more ideas......

> I have heard the water should be ice water is that true?? I have also

> heard douching with ice water is important???

>

>

>

>------------------------------------------------------------------------

>

>No virus found in this incoming message.

>Checked by AVG Free Edition.

>Version: 7.1.394 / Virus Database: 268.8.3/359 - Release Date: 6/8/2006

>

>

water should be room temp for both.

[Guest guest]

Hi :

Sorry to hear of so many things going on. Have you tried to contact the Social

Services offered in your area with help on the house payments etc..Just a

thought. Don't know any details on your situation, but maybe they can help.

Jeanette

[ ] New Here

I wanted to say hello to everyone as I am new here. Well kinnda new

anyway. I have been lurking around for about a week reading

everyones

posts. So I finally decided it was my time to tell a bit about

myself.

I am 32 years old and live in a small town in east central Iowa. I

work as a Certified Nursing Assistant(CNA) in a nursing home on the

10pm to 6am shift. I have worked as a CNA for 11 yrs now. I was

just

told by my endocrinologist that I need to go see a rheumotologist

(not

sure I have the correct spelling there) I am still waiting to hear

back from my GP about when my first appointment will be. The endo

said I need to see the rheumotologist so they can officially

diagnose

PA. Altho the endo said after asking me a million questions and

looking at my nails that is definately what it is. The way I see it

is that it is something else to add to my growing list of health

problems.

*diabetic since I was 21 which I take several injections a day for

and

test my blood glucose level about 6 times a day

*high blood pressure

*high cholesterol which seems to not improve any when I take meds

for

it

*diabetic neuropothy in my hands and feet/legs

*I have been diagnosed with severe clinical depression at one time

a " shrink " said I am bi-polar so either one I guess; it is hard to

say.

My personal opinion is that a lot of what depresses me is financial

problems. Right now I have insurance through my partner's work but

still the co-pays for meds are a killer. Just in the last 6 weeks I

have paid out 250 bucks in prescription co-pays. Which takes a toll

on our finances cuz we have not been able to pay our house payment

for 4 months and are in foreclosure now. :-( Which obviously does

not help the depression thing either!!

*obsessive compulsive disorder (not sure where the doc got that from

or what my obsession or compulsion would be)

*GERD

*for the last couple years I have had constant cognitive problems

very

much like someone that has posted on here within the last couple

days. I just feel that I am in a fog or " floating " all the time. I

have a hard time figuring things out and can not remember a darn

thing

if my life depended on it. I have a hard time understanding what a

person is talking about and always have the feeling that when I am

holding onto something that I am dropping it.

I am sure there is more I can say but I just can not think of it

right now and I have babbled on long enough plus I have lost my

train of thought.

I hope everyone is having a good day and I hope to hear from some of

you.

[Editor's Note: , it certainly sounds like you and your partner have a

lot on your plate right now. I can't diagnose you, of course, but the nail

ridges and brain fog are a strong indication of PA. You need to see a

rheumatologist (don't worry about spelling) as soon as you can. Some of the

pharmaceutical companies will make arrangements to get you the medications you

need at little to no cost if you financially qualify. Your State Insurance

Commission website might also be able to direct you to sources of low-cost

medication (if available in your state). Not sure what we can do other than give

you a safe place to vent, cry, laugh and learn. Kathy F.]

[Guest guest]

....welcome. You've found a safe harbor. I have PA and a heritary iron

disorder and a daughter with OCD, Aspergers Syndrome (high function autism) and

Mood Disorder (manic depression) so maybe I can help you there. I know the ropes

and have the rope burn to prove it. Well wishes, -Betz

Betsy Jack itsbetsy@...

[ ] New Here

I wanted to say hello to everyone as I am new here. Well kinnda new

anyway. I have been lurking around for about a week reading

everyones

posts. So I finally decided it was my time to tell a bit about

myself.

I am 32 years old and live in a small town in east central Iowa. I

work as a Certified Nursing Assistant(CNA) in a nursing home on the

10pm to 6am shift. I have worked as a CNA for 11 yrs now. I was

just

told by my endocrinologist that I need to go see a rheumotologist

(not

sure I have the correct spelling there) I am still waiting to hear

back from my GP about when my first appointment will be. The endo

said I need to see the rheumotologist so they can officially

diagnose

PA. Altho the endo said after asking me a million questions and

looking at my nails that is definately what it is. The way I see it

is that it is something else to add to my growing list of health

problems.

*diabetic since I was 21 which I take several injections a day for

and

test my blood glucose level about 6 times a day

*high blood pressure

*high cholesterol which seems to not improve any when I take meds

for

it

*diabetic neuropothy in my hands and feet/legs

*I have been diagnosed with severe clinical depression at one time

a " shrink " said I am bi-polar so either one I guess; it is hard to

say.

My personal opinion is that a lot of what depresses me is financial

problems. Right now I have insurance through my partner's work but

still the co-pays for meds are a killer. Just in the last 6 weeks I

have paid out 250 bucks in prescription co-pays. Which takes a toll

on our finances cuz we have not been able to pay our house payment

for 4 months and are in foreclosure now. :-( Which obviously does

not help the depression thing either!!

*obsessive compulsive disorder (not sure where the doc got that from

or what my obsession or compulsion would be)

*GERD

*for the last couple years I have had constant cognitive problems

very

much like someone that has posted on here within the last couple

days. I just feel that I am in a fog or " floating " all the time. I

have a hard time figuring things out and can not remember a darn

thing

if my life depended on it. I have a hard time understanding what a

person is talking about and always have the feeling that when I am

holding onto something that I am dropping it.

I am sure there is more I can say but I just can not think of it

right now and I have babbled on long enough plus I have lost my

train of thought.

I hope everyone is having a good day and I hope to hear from some of

you.

[Editor's Note: , it certainly sounds like you and your partner have a lot

on your plate right now. I can't diagnose you, of course, but the nail ridges

and brain fog are a strong indication of PA. You need to see a rheumatologist

(don't worry about spelling) as soon as you can. Some of the pharmaceutical

companies will make arrangements to get you the medications you need at little

to no cost if you financially qualify. Your State Insurance Commission website

might also be able to direct you to sources of low-cost medication (if available

in your state). Not sure what we can do other than give you a safe place to

vent, cry, laugh and learn. Kathy F.]

[Guest guest]

Can I ask what your sed rate is? I am wondering what is an extremely high one.

Mine has been staying at about 90 and my doctor doesn't seem disturbed by it.

[Guest guest]

Hi Maggy;

Welcome to the gang.I have Scleroderma and have been on AP for over

6 years.Doing just great after a lot of fine tuning.My sister has Lupus

and is in total remission by taking Doxycycline 50mg every other day.She

could not tolorate minocin or high doseage.It seems this is quite common

for poeple with that disease so now you know that could be the case for

you and can be prepared.Sue was in remission after 2 years....much

faster than I was. Lynne

Maggy wrote:

> Hi,

> I just joined the group and am already absorbing lots of helpful

> info from all the posts. I just saw a new Rheumatologist on

> Wednesday and was able to get her to prescribe minocycline. I have

> seen 2 others in the same practice but they both tried to get me on

> Methotrexate and Plaquenil which I refused. (I should add that my

> diagnosis is Lupus/RA 6+ years) This new doctor is fairly young and

> new to the practice and much more open-minded. She actually

> listened to what I was saying! She wants to start me out on 100mg

> once a day. At first she was going for twice a day but then changed

> her mind. She wants to see how I react first. She also wanted me

> to start taking Celebrex once a day. I had not been taking anything

> and the inflammation has been pretty severe for several months now.

> She said the antis would have a difficult time penetrating with the

> inflammation and I did read some stuff online that backs this up.

> Mainly I am glad she was open to the antibiotic therapy, but I think

> this treatment is somewhat new to her. She seems very willing to

> follow it and help improve my health so for now I am sticking with

> her. I am hoping to start on the antibiotic this weekend once I get

> some probiotics and figure out which other supplements to take as

> well. I also take Synthroid once a day. I will probably have lots

> of questions once I get started, but if anyone has advice thay would

> like to share with me beforehand I would appreciate it. Thanks to

> all for sharing!

> Maggy

>

>

[Guest guest]

My sed rate was only 6 this last time. My doctors are usually baffled by my

test results, saying they don't make much sense....

My rheumatoid factor was 277 and ANA 15. I'm still not sure what some of the

tests are. Does anyone know what dsDNA Autoabs is? This was also high for me.

Maggy

Re: rheumatic New Here

Can I ask what your sed rate is? I am wondering what is an extremely high one.

Mine has been staying at about 90 and my doctor doesn't seem disturbed by it.

.

[Guest guest]

Hello Maggy

I would add salmon oil and vitamin B complex to your list. I recommend vit. B as

a back up in case you forget to take your probiotics. I found that out the hard

way. My hair started falling out drastically and my scalp was super super dry

with chunks of flakes everywhere. I did some research and found out that the

antibiotics were inadvertently hindering the absorption of vit B. I started back

on the probiotics and added vit B complex and I was back to normal with my hair

and scalp. It was pretty amazing how these two supplements made such a big

difference.

Yesenia

Maggy <MaggyAlonso@...> wrote: Hi,

I just joined the group and am already absorbing lots of helpful

info from all the posts. I just saw a new Rheumatologist on

Wednesday and was able to get her to prescribe minocycline. I have

seen 2 others in the same practice but they both tried to get me on

Methotrexate and Plaquenil which I refused. (I should add that my

diagnosis is Lupus/RA 6+ years) This new doctor is fairly young and

new to the practice and much more open-minded. She actually

listened to what I was saying! She wants to start me out on 100mg

once a day. At first she was going for twice a day but then changed

her mind. She wants to see how I react first. She also wanted me

to start taking Celebrex once a day. I had not been taking anything

and the inflammation has been pretty severe for several months now.

She said the antis would have a difficult time penetrating with the

inflammation and I did read some stuff online that backs this up.

Mainly I am glad she was open to the antibiotic therapy, but I think

this treatment is somewhat new to her. She seems very willing to

follow it and help improve my health so for now I am sticking with

her. I am hoping to start on the antibiotic this weekend once I get

some probiotics and figure out which other supplements to take as

well. I also take Synthroid once a day. I will probably have lots

of questions once I get started, but if anyone has advice thay would

like to share with me beforehand I would appreciate it. Thanks to

all for sharing!

Maggy

__________________________________________________

[Guest guest]

Hi Maggie,

I had a really bad time with inflammation and pain when I started AP and had

to take Vioxx for quite some time. Thankfully I didn't have any

pre-exisitng problems for the Vioxx to contribute to but keeping

inflammation under control helps the therapy work. My doctor doesn't

promote or educate himself about AP and frequently asks me what I think we

should do. I look at it like this, as long as I am not having any problems

and he is cooperating the relationship works. I started out with 100mg 2x's

a day MWF and after about 3 years went to 100mg MWF which is where I am now.

My labs are darn close to normal.

Regards,

Dee

rheumatic New Here

Hi,

I just joined the group and am already absorbing lots of helpful

info from all the posts. I just saw a new Rheumatologist on

Wednesday and was able to get her to prescribe minocycline. I have

seen 2 others in the same practice but they both tried to get me on

Methotrexate and Plaquenil which I refused. (I should add that my

diagnosis is Lupus/RA 6+ years) This new doctor is fairly young and

new to the practice and much more open-minded. She actually

listened to what I was saying! She wants to start me out on 100mg

once a day. At first she was going for twice a day but then changed

her mind. She wants to see how I react first. She also wanted me

to start taking Celebrex once a day. I had not been taking anything

and the inflammation has been pretty severe for several months now.

She said the antis would have a difficult time penetrating with the

inflammation and I did read some stuff online that backs this up.

Mainly I am glad she was open to the antibiotic therapy, but I think

this treatment is somewhat new to her. She seems very willing to

follow it and help improve my health so for now I am sticking with

her. I am hoping to start on the antibiotic this weekend once I get

some probiotics and figure out which other supplements to take as

well. I also take Synthroid once a day. I will probably have lots

of questions once I get started, but if anyone has advice thay would

like to share with me beforehand I would appreciate it. Thanks to

all for sharing!

Maggy

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

No, I haven't heard of one until recently. Coincidentally I

was just looking them up to see who qualifies etc. I am

thinking a service dog would be great for my boys.

> There is someone on this board that is getting one for

her son. You might ask her about it and how she got it.

>

GA-ChildrensNetwork/message/20646

>

Toni

>

> I am the mother of a just turned 13 yr old Aspie/Nos. We

> have been on this roller coaster since he was 3-4.

> Couldn't get a good diagnosis until he was 7.

>

> He does't mainstream well. He was in mainstream school

> for 2-4th grade, but has been in an alternative school

> since middle of 4th. He almost came back to mainstream

> the beginning of last year, but the school screwed up his

> IEP and didn't follow it so the decided they couldn't

> handle him (he tried to follow procedure) So after only

> one week of what he had worked sooo hard for he was back

> at the alternative school, which threw him off for the

> year. We are still trying to get to the level he was

> before.

>

>

>

> Anyway, my question is has anyone here had experience with

> using a PSD (psychiatric service dog)?

>

>

>

> Thanks so much for letting me join the group.

>

>

>

> Kathy K

> toozie@...

>

>

>

>

> _____

>

> I am using the free version of SPAMfighter for private

> users. It has removed 6399 spam emails to date.

> Paying users do not have this message in their emails.

> Try SPAMfighter <http://www.spamfighter.com/go.asp?t=249>

> for free now!

>

>

>

>

[Guest guest]

Kathy, I haven't had experience using a psychiatric service dog, but

I am a great believer in using dogs for kids with Asperger's. My son

loves our dog. Turns out that he has bipolar disorder, too, and he's

had a miserable year. The dog lets him cuddle up and snuggle for

hours on end. If I'd known service dogs could be used in these

circumstances, I would have given it a go a long time ago. But our

old dog has done a good job.

Liz

On Jun 29, 2006, at 8:19 AM, toozie wrote:

>

>

> I am the mother of a just turned 13 yr old Aspie/Nos. We have been

> on this

> roller coaster since he was 3-4. Couldn't get a good diagnosis

> until he was

> 7.

>

> He does't mainstream well. He was in mainstream school for 2-4th

> grade, but

> has been in an alternative school since middle of 4th. He almost

> came back

> to mainstream the beginning of last year, but the school screwed up

> his IEP

> and didn't follow it so the decided they couldn't handle him (he

> tried to

> follow procedure) So after only one week of what he had worked sooo

> hard for

> he was back at the alternative school, which threw him off for the

> year. We

> are still trying to get to the level he was before.

>

> Anyway, my question is has anyone here had experience with using a PSD

> (psychiatric service dog)?

>

> Thanks so much for letting me join the group.

>

> Kathy K

> toozie@...

>

> _____

>

> I am using the free version of SPAMfighter for private users.

> It has removed 6399 spam emails to date.

> Paying users do not have this message in their emails.

> Try SPAMfighter <http://www.spamfighter.com/go.asp?t=249> for free

> now!

>

>

[Guest guest]

welcome - I hope you enjoy the board and learn a lot.

My sleep apnoea seems to be related to both low thyroid and adrenal - I

find If I take a small amount of cortef before bed I don't have a

problem - I just discovered this so its only my own experience.

Kerry

New Here

Hi Im new here. I have several conditions to start off with I have

hoshimoto's my tsh is 360. I just got out of the hospital they said I

almost died. to all of you that quit taking the meds " dont " ...I quit

because i felt better and i financially couldnt afford them and I

almost lost my life due to that error in judgement. I have had

hoshimotos for over ten years. I also have lupus, sleep apnea,

fibromyalgia and depression. I joined to learn more about this disease

so I can stay alive and have a better quality of life.

[Guest guest]

>

>

> You just need the proper dose of the RIGHT medicine, certainly not

a really

> low dose. LOOK FOR A TOPDOC ASAP Goiter means you need iodine.

> Gracia

>

> > Just wanted to introduce myself and hopefully get some good info

> > from all of you.

> > I have Hypotyroidism, actually my thyoid has completely shut down.

> > A little background.. After I had my son, was diagnose with hypo,

> > put on meds, moved and ended up with a new dr that said that I

was

> > fine. That was 9 years ago. I have had my levels tested and was

> > always high but not high enough to do anything about it. Just

> > recently my goiter became extremely enlarge that I could feel it

> > when I swallowed. Had my levels tested again and this time they

> > came back OVER 150. 150 is as high as their test goes. Does

anyone

> > know what damage this could do to someone? Dr. wouldn't tell me

what

> > she was calling me ever few days to check up on me.. not a good

> > sign. I have had an ultrasound done- no nodules. I was put on a

low

> > dose of meds and had a very bad reaction (migraines,loss of sight,

> > headaches etc), went to the specialist who had to put me on a

lower

> > dose and gradually increase it from there. So that is where I am

now

> > and with all these problems I am still underweight. It has not

> > caused me to gain any weight.. just confused on that one.. I

know, I

> > should be happy about it.

> > Any ideas, tips, would be greatly helpful (hair loss, dry skin.. I

> > looke like a snake shedding, swelling)

> >

> >

> > Dawn

> >

> >

> >

> >

> >

> >

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.323 / Virus Database: 267.8.16/50 - Release Date:

7/15/2005

>

hi dawn

im new too. my name is susan martz. im not sure i have low thryoid

july 25th i have been research thryoid information you sound like i

have it same. i will have another test july 25 to make sure same

amount level or change so to see which im in low or high so thank you

for ur feeling and experience share on post message.

[Guest guest]

Hello and welcome to you !

Stan

>

> Hi I am new here and have several kinds of arthritis that have

riddled

> my spine

> I have 5 spurs in my spine not counting other places, 2 herniated

disk

> and am in constant pain

> I try very hard to grin and bear

>

> I have recently been put on a patch that does help some but the 12

> hours inbetween patches is the worst

>

[Guest guest]

I feel your pain. I just had laminectomy surgery and was supposed to be normal

by end of 3 weeks. They found a bone spur which was kinking a nerve and removed

that, but now I have more pain than before and have been told it could last as

long as a year. They admitted 5% of people do not recover. I use the liboderm

patch too and get nauseous on pain meds so it is rough. I hope you feel better.

Peggy

[Guest guest]

---I am not a doctor but sounds like could be flatback. The burning

sounds like siatica and the buckling sounds like how I felt one year

ago. I was revised almost 6 months ago. I do not have those symtoms

anymore, just some pain/soreness after being on my feet all day. I also

am still getting used to the " new alignment " . I stand so tall and

straight that sometimes I feel as I may tip over backwards!!!,PA

In , " cristl512 " <cristl512@...> wrote:

>

> I wore a Milwalkee brace from 4th grade through 8th grade. My curves

> (S-curve) kept progressing rapidly and I had the spinal fusion

surgery

> done in 1989. I have not had any real problems until the last 3

years

> or so. My right hip is in pain constantly which makes my leg and

foot

> numb. My lower back feels like it is going to " buckle " and hurts so

> bad it has a burning sensation. I can't sit too long without a lot

of

> pain. Are others suffering these same problems??

>

[Guest guest]

I know what you mean by your lower back "buckle", but try to explain it to the doctors is another thing. Even the surgeon didn't seem to believe me, though with his definition of Flatback I don't think he would believe anything I said. I wore my M. brace from Grade 6-10 and still had surgery in 1973. With the knowledge that was available then, I don't regret having surgery but it would have been nice to have that crystal ball to see what I am dealing with today. I'm just doing the best I can with each new day, trying to manage the pain through exercise, hobbies and family caregiving. I'm lucky to have a supportive family and community.

My advise is to learn to pace yourself, since the buckling mainly happens with me when I'm tired. Also get the mobility aids and support that you need to keep going. This is one of the best places for support because we understand, even if our individual circumstances are different. And before I forget, "Welcome aboard".

Llweyn

My right hip is in pain constantly which makes my leg and foot numb. My lower back feels like it is going to "buckle" and hurts so bad it has a burning sensation. I can't sit too long without a lot of pain. Are others suffering these same problems??_,_.___

..

[Guest guest]

Your symptoms sound just like mine did 10 years ago. I hope my

history and account of things that worked will be helpful to you as

you look forward.

Over the next few years, my symptoms progressed to walking pitched

forward, siatica, etc. The final straw for me was a banana boat

ride. Sitting became almost unbearable, as did standing in one spot

for a period of time. My body would crumple and lying down for

awhile was the only thing that allowed me to get up aand start

again. Almost 4 years ago, when I was starting to feel like a

disable person, I started (again) PT - but with someone who was

actually good, listened to me explain my back problems, and adapt

the normal back program to my specific needs. My program focuses on

core stabilization to build up the muscles that are working overtime

to hold us upright and are exhausting with fatigue when we " buckle "

over. Also, tons of stretching, including the hip flexors which

help me to stand upright instead of pitching forward. The PT does

manual therapy, which I find essential - initially to work out the

scar tissue from the fussion and now to work out numerous muscle

spasms and trigger points. I still do it now and will keep it up as

long as it helps. I am now an active person again, can stand

relatively upright, and do much better sitting and standing.

However, no more banana boats or any other jolting or back stressing

activity ever again for me. The docs have explained that my lack of

lumbar curve takes away the ability of my spine to absorb shock and

also the added weight directly up and down compresses my discs

(nothing left of them now). I've also experimented with heel lifts -

with some success (increasing height very slowly) and some failure.

This helped with sciatica and leg numbness to a degree.

>

> I know what you mean by your lower back " buckle " , but try to

explain it to

> the doctors is another thing. Even the surgeon didn't seem to

believe me,

> though with his definition of Flatback I don't think he would

believe

> anything I said. I wore my M. brace from Grade 6-10 and still had

surgery in

> 1973. With the knowledge that was available then, I don't regret

having

> surgery but it would have been nice to have that crystal ball to

see what I

> am dealing with today. I'm just doing the best I can with each new

day,

> trying to manage the pain through exercise, hobbies and family

caregiving.

> I'm lucky to have a supportive family and community.

>

> My advise is to learn to pace yourself, since the buckling mainly

happens

> with me when I'm tired. Also get the mobility aids and support

that you need

> to keep going. This is one of the best places for support because

we

> understand, even if our individual circumstances are different.

And before I

> forget, " Welcome aboard " .

>

> Llweyn

>

>

>

> My right hip is in pain constantly which makes my leg and foot

> numb. My lower back feels like it is going to " buckle " and hurts

so

> bad it has a burning sensation. I can't sit too long without a lot

of

> pain. Are others suffering these same problems??_,_.___

>

> .

>

> <http://geo./serv?

s=97359714 & grpId=15709830 & grpspId=1600094709 & msgI

> d=10195 & stime=1153159395>

>

[Guest guest]

Hi , When people say "revised".... what exactly does this mean? Back surgery to "fix" the fusion?? How long does recovery from this surgery take? I work full time.......sitting at a desk all day......... and am worried about how I will take the time away from work, etc. However, I have to get it fixed. I am still hoping to have children at some point and this is making the worry about that worse as well. The pain is really affecting all areas of my life at this point. I am trying to exercise but that seems to make it worse. It feels better at the time and then I am even more stiff afterwards. I am in alot of pain. I am 35 years old and feel like I am 85. I finally got a dr. appt today but not until August 15th. At least it is on the schedule. I need to get a list of questions together. Thanks for everyone for the responses. I appreciate it!!!!heatherbenjaminnicholas <heatherbenjaminnicholas@...> wrote: ---I am not a doctor but sounds like could be flatback. The burning sounds like siatica and the buckling sounds like how I felt one year ago. I was revised almost 6 months ago. I do not have those symtoms anymore, just some pain/soreness after being on my feet all day. I also am still getting used to the "new alignment". I stand so tall and straight that sometimes I

feel as I may tip over backwards!!!,PAIn , "cristl512" <cristl512@...> wrote:>> I wore a Milwalkee brace from 4th grade through 8th grade. My curves > (S-curve) kept progressing rapidly and I had the spinal fusion surgery > done in 1989. I have not had any real problems until the last 3 years > or so. My right hip is in pain constantly which makes my leg and foot > numb. My lower back feels like it is going to "buckle" and hurts so > bad it has a burning sensation. I can't sit too long without a lot of > pain. Are others suffering these same problems??>

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Hi Cristl...

I don't think there's any official definition of revision. It could

mean anything from replacement of implants, extension of fusion, to

osteotomies that change the shape of the entire spine.

Recovery is different for everyone. I've known people who have had

huge surgeries, who are off of pain meds within a few weeks of

surgery. I've also known people who have had horribly long

recoveries, or who still have significant pain years afterward. There

are plenty of stories in the Member Stories folder in the Files

section of this forum.

/files/Member%20Stories/

I would personally never even consider having children if I was in

chronic pain. It certainly wouldn't have much of a chance of making

the pain better, and I'd worry about the impact the pain would have on

my children's lives. Just my $.02. :-)

Regards,

>

> Hi ,

>

> When people say " revised " .... what exactly does this mean? Back

surgery to " fix " the fusion?? How long does recovery from this

surgery take? I work full time.......sitting at a desk all

day......... and am worried about how I will take the time away from

work, etc. However, I have to get it fixed. I am still hoping to

have children at some point and this is making the worry about that

worse as well. The pain is really affecting all areas of my life at

this point.

>

> I am trying to exercise but that seems to make it worse. It feels

better at the time and then I am even more stiff afterwards.

>

> I am in alot of pain. I am 35 years old and feel like I am 85. I

finally got a dr. appt today but not until August 15th. At least it

is on the schedule. I need to get a list of questions together.

>

> Thanks for everyone for the responses. I appreciate it!!!!

[Guest guest]

-

Cristl,

Revision is fixing what has happened to the back during the flatback

issue. Yes, this was caused by the original scoliosis surgery I had

when I was 12, I am 45 now. On the main page of this site there is a

nice explanation of what most of us are facing today. ALso in the

files section some folks have their stories posted.

I had my surgery Jan 13 and 24 at New England Baptist Hospital in

Boston, I live outside Philadelphia. I found the doctor in Boston,

DR. Rand, via this site, others used him for revision. I really liked

him when I met him and he gave me the confidence I was looking for to

take the next step, revision. Mine was a quality of life issue, I

have 4 kids-8-18 and I just could not walk anymore without horrible

sciatic pain, bent over etc. I am almost 6 months post op, I am back

to work, I went back April 3rd. I am not perfect but far better than

I was this time last year. I hear from others who are further in the

process ,that I can expect more healing to occurr,I want to feel

better faster, I have no patience!!! I hope you sort all of this out

for yourself, this is a good place to ask all questions and try to

make a decision that works best for you and your life. , PA

-- In , Cristl Craig <cristl512@...>

wrote:

>

> Hi ,

>

> When people say " revised " .... what exactly does this mean? Back

surgery to " fix " the fusion?? How long does recovery from this

surgery take? I work full time.......sitting at a desk all

day......... and am worried about how I will take the time away from

work, etc. However, I have to get it fixed. I am still hoping to

have children at some point and this is making the worry about that

worse as well. The pain is really affecting all areas of my life at

this point.

>

> I am trying to exercise but that seems to make it worse. It

feels better at the time and then I am even more stiff afterwards.

>

> I am in alot of pain. I am 35 years old and feel like I am 85.

I finally got a dr. appt today but not until August 15th. At least

it is on the schedule. I need to get a list of questions together.

>

> Thanks for everyone for the responses. I appreciate it!!!!

>

> heatherbenjaminnicholas <heatherbenjaminnicholas@...> wrote:

> ---I am not a doctor but sounds like could be flatback.

The burning

> sounds like siatica and the buckling sounds like how I felt one

year

> ago. I was revised almost 6 months ago. I do not have those symtoms

> anymore, just some pain/soreness after being on my feet all day. I

also

> am still getting used to the " new alignment " . I stand so tall and

> straight that sometimes I feel as I may tip over backwards!!!,PA

>

> In , " cristl512 " <cristl512@> wrote:

> >

> > I wore a Milwalkee brace from 4th grade through 8th grade. My

curves

> > (S-curve) kept progressing rapidly and I had the spinal fusion

> surgery

> > done in 1989. I have not had any real problems until the last 3

> years

> > or so. My right hip is in pain constantly which makes my leg and

> foot

> > numb. My lower back feels like it is going to " buckle " and hurts

so

> > bad it has a burning sensation. I can't sit too long without a

lot

> of

> > pain. Are others suffering these same problems??

> >

>

>

>

>

>

>

> ---------------------------------

> How low will we go? Check out Messenger's low PC-to-Phone

call rates.

>

[Guest guest]

I'm really glad Cristl asked this. 's probably seen more uses

than I have, but from what I've seen, a lot of people use " revision "

to mean fusion extension. Many others seem to use it to mean just

about any spine-related operation past the initial fusion. I've used

it to mean " reworking or fixing an existing fusion " (so fusing

additional vertebrae due to DDD would be an extension but not a

revision), but I've never known if I was correct. Popular usage seems

to say I'm not. (Sigh)

>

> Hi Cristl...

>

> I don't think there's any official definition of revision. It could

> mean anything from replacement of implants, extension of fusion, to

> osteotomies that change the shape of the entire spine.

[Guest guest]

Hi Cristl and welcome.

I think your questions have been well answered but I wanted to point

out that with regard to your question about what

constitutes " revison " , I think most of us in this group use the term

loosly and that may be adding to your confusion a little. Most of us

that have had revision for flatback and are/were repairing a fixed

sagittal imbalance, which requires and osteotomy (removal of a wedge

shaped piece from the vertebrae) as well as dealing with the more

immediate causes of the pain...i.e. decompressing the nerve roots

from the degenerating discs below the fusion and stabilizing the

whole mess by fusing into the sacrum and also replacing the failing

discs with cages. Usually accomplished in two surgeries.

This is not your ordinary " revision " .....so be careful " vetting " out

potential surgeons. Many of them have done most of these procedures

many times...but if you question them closely you will find that

they have not done all of them toghether...and there in lays your

challenge. You want to find a surgeon who has managed a patient and

has good outcomes in doing back to back surgeries and successfully

restored sagital balance....and unfortunatly...there are not too

many of them out there. It may be more of a " growth industry " as

those of us that underwent initial surgery in the 70's and 80's with

Harrington Rods " age up " ...but for now the usual list of surgeons

most of us have consulted is shorter than the fingers on your two

hands.

As to recovery....I am 17 months from a the second stage...and my

timeline was to allow 18 months for recovery...mostly to keep

reminding myself that I needed to be patient in letting the healing

take place...as well as the strength that comes back slowly and

surely after the initial surgical trauma heals. None the less, I was

parenting our child at 6-8 weeks...back to work at 3

months...vacationing at 6 months...biking at 8 months...snowshoeing

up a mountain at 12 months....and at 17 months I just returned from

a trip to Denmark that included hours of sit time in an airplane,

walking everywhere and standing in every situation imaginable.I have

been lucky enough to be able to accomplish this without any narcotic

support...but even had I needed it I would have considered this a

vast improvement in my life....which had gotten mighty small prior

to surgery.

I think it is too soon for you to give up on the dream of bearing a

child. I didn't become a parent until 40...and looking at the

situation you are in I think it would be a challenge...but we have a

member, Caroly Pointer, who is not in flatback but is fused to the

sacrum and is just a few years younger than you. She plans to have a

family at some point, and with her doctors blessing...so it is worth

at least leaving the idea on your list of questions to pose to yor

prospective surgeon(s). Since it may require that your wait 18

months - 2 years after surgery I am guessing that timing will be

very important in your considerations of how to proceed.

I am sorry you are in pain.I hope you find our group offers good

info and support as you continue on your scoli odessy. We are all

here to help.

Take Care, Cam

[Guest guest]

I'm new here too, my

name is Marci. I see on

these groups everyone

talking about revision

surgury after revision

surgury. I've only had

one surgury that was in

1980 when I had my

spinal fusion. I have

had to work all my life

to support myself and

cannot take time of to

have " surgury " after

surgury and I don't

think I'd want to.

It is now about 25

years and I have had

increasing back pain.

I've lost the abilaty to

lift to much and also to

stand for a long period

of time, witch limits

the type of jobs I can

do.

I am petrified to get

more surgury, I don't

really trust doctors,

you know they don't

really know that much.

They fix one problem

and give you another one.

God Bless you, and be

careful, we only can

really take care of

ourselves. Luv, Marci

[Guest guest]

Dear Marci,

I totally understand you being unsure and scared of the idea of having more surgery. I think our collective trust of doctor's sometimes can be damaged by us being told when we were young that our Harrington Rod surgery " Healed us" and go out and live our lives. I never lived my life in my twenties realizing that my spine needed to not be pushed hard. I look back on all the years I worked in Restaurants as a manager, doing inventory, throwing boxes of supplies over my head, mostly in the range of forty pounds. I really put " wear and tear" on those levels below my fusion, L-4 and L-5. Then at twenty four I had my first child and the list of symptoms started, pain running down by legs, numbness, an awful low back ache. I muddled through for years that way, consulting docs all along the way, and being told to live with it.

I was forty before I got my diagnosis of Flatback, years I felt I lost out on function, and sadly lost to pain and sadness. I'm a mother of three kids, my oldest had a Mom in her early years could do a lot more, then when my younger kids came along they knew Mom couldn't pick them up from the floor, walk more than a block, who was grumpy at the end of the day because of the pain. You might not see all thats happening to your body, you just know you hurt. To this day people who haven't seen me for years are shocked to see me now after my revision, I always get comments about how good I look, upright and level, not stooped over like before, and that I look happier, they can really see the fact that I'm painfree on my face and the way I hold myself. These surgeries literally gave me back my ability to live a full life, to walk for as long as I'd like, to be able to stand, to be tall and level. My Granddaughter who's seventeen months has a grandma who can do more with her than I could ever do with my own kids.

Please know the handful of doc's listed here who do this work are fabulous human beings, very dedicated to this difficult type of surgery, and to making us have better functioning lives.

So not to put the cart before the horse, you need to be seen by a good doc to see whats going on with you. Unfortunately if you are in Flatback there is no fix for it besides surgery, some stave it off for a time with exercise, and pain med's, and physical therapy. Once I had a diagnosis, I read like a maniac, talked to people in the various groups, and moved ahead with surgery, I wanted it fixed yesterday. While my great outcome took more than one surgery, I'm thankful every day I did it, as is my family. Being without that awful pain is a gift I can never repay Dr. Kumar for.

So go get seen by a qualified doc, see just what going on with you, it's affecting your life negatively, so make the big step to see just what going on. Information is power, then you have choices. And you have us to support you as you go through this. I know it's scary and daunting, but just take the step to see a doc or two, and read all the stuff this site and others have to offer. There is a great list on the site of questions to ask your doc at the first visit. Be sure to bring someone else along to help you remember what went on, and take notes. Working to get yourself better is the best time you can spend, I'm glad I gave doc's one more shot, cause I was very disheartened with them after all the years of being told to live with it. Dialing that phone to make that first appointment with Dr. Kumar I was just sure I was going to get more of the same, but when he walked into the room at my first visit and ask" Who did this to you" A wave came over me like I was home, someone got that I was a mess, that I had found my way out. He spent an hour and a half with me with spinal models explaining just what had gone wrong with my spine. He asked in detail about my pain, and really listened, I wasn't just an x-ray or a proceedure to him. I cried all the way home from that visit, the relief was that profound, that there was something wrong with me,and it had a name. Then I got on the web and found all these terrific people in these groups who helped me through all this. I read and read so I could ask better questions the next time. I took it on like it was a research paper, wanted to know all my options. so I made the decision to have surgery, and while it was the hardest thing I went through in my life, I'm blessed each day for having done it. I looked at it as though even if I got a reduction in pain by fifty percent, I'd be so much better off and I'd be so much better in my life with my kids and husband. I was very lucky that after my last surgery I came out after the surgical pain was over with a painfree status, something I only dreamed of.

I wish you peace and a great doc while you travel through to find your answers!

Colorado Springs

[ ] Re: New here

I'm new here too, my name is Marci. I see on these groups everyone talking about revision surgury after revision surgury. I've only had one surgury that was in 1980 when I had my spinal fusion. I have had to work all my life to support myself and cannot take time of to have "surgury" after surgury and I don't think I'd want to. It is now about 25 years and I have had increasing back pain. I've lost the abilaty to lift to much and also to stand for a long period of time, witch limits the type of jobs I can do.I am petrified to get more surgury, I don't really trust doctors, you know they don't really know that much. They fix one problem and give you another one.God Bless you, and be careful, we only can really take care of ourselves. Luv, Marci

[Guest guest]

--you made me get all choked up reading your post because I feel

like I've lost years of living because of my pain and lack of being

able to do much. My poor daughters have never had much of a mother

because I couldn't pick them up after they got to about 15 lbs or so.

I couldn't get down on the floor and play with them, either. They

(and my husband) have had to put up with my grumpiness over the

years. I didn't even know why I was grumpy, either, until about a

year ago. Talk about being out of it!!!! I just knew, like Marci,

that going to doctors was a waste of time because they didn't know

anything. They just told me to " live with it " . I didn't know what was

wrong with me, but I just knew that something was. Not until I found

the scoliosis/flatback boards and had patient people like you and Cam

and others explain to me what was probably going on with me and you

and other sent me to other informational websites to find out even

more. I have told several people lately that I " diagnosed myself "

with flatback. I also know more than most orthopedists do about

scoliotic spines now. I know enough now to know who I want to see and

who I don't want to see as far as doctors...because most don't

specialize in the sagital imbalance and post-Harrington rod problems

that we all face here. No, I don't want to have another surgery

either, and like I said in my earlier (my 2 cents worth)post that I

couldn't imagine how people could actually think of having ANOTHER

SURGERY--THEY MUST BE CRAZY!! But I began to realize that with the

more information I got--that surgery is the only option to fix this

problem, because it is only going to get worse as time goes by. I

would rather have this surgery before I get too much older and it's

always harder to heal and recover the older you get. I hope that Dr.

Hu will give me the answers I'm seeking and that I can " get on with

it " and hope to have a better life the last part of my life that I

have left....better than I have had for over the past 20 years or so,

anyway.

Carol V. (CA)

>

> Dear Marci,

>

> I totally understand you being unsure and scared of the idea of

having more surgery. I think our collective trust of doctor's

sometimes can be damaged by us being told when we were young that our

Harrington Rod surgery " Healed us " and go out and live our lives. I

never lived my life in my twenties realizing that my spine needed to

not be pushed hard. I look back on all the years I worked in

Restaurants as a manager, doing inventory, throwing boxes of supplies

over my head, mostly in the range of forty pounds. I really put "

wear and tear " on those levels below my fusion, L-4 and L-5. Then at

twenty four I had my first child and the list of symptoms started,

pain running down by legs, numbness, an awful low back ache. I

muddled through for years that way, consulting docs all along the

way, and being told to live with it.

>

> I was forty before I got my diagnosis of Flatback, years I felt I

lost out on function, and sadly lost to pain and sadness. I'm a

mother of three kids, my oldest had a Mom in her early years could do

a lot more, then when my younger kids came along they knew Mom

couldn't pick them up from the floor, walk more than a block, who was

grumpy at the end of the day because of the pain. You might not see

all thats happening to your body, you just know you hurt. To this day

people who haven't seen me for years are shocked to see me now after

my revision, I always get comments about how good I look, upright and

level, not stooped over like before, and that I look happier, they

can really see the fact that I'm painfree on my face and the way I

hold myself. These surgeries literally gave me back my ability to

live a full life, to walk for as long as I'd like, to be able to

stand, to be tall and level. My Granddaughter who's seventeen months

has a grandma who can do more with her than I could ever do with my

own kids.

>

> Please know the handful of doc's listed here who do this work are

fabulous human beings, very dedicated to this difficult type of

surgery, and to making us have better functioning lives.

>

> So not to put the cart before the horse, you need to be seen by a

good doc to see whats going on with you. Unfortunately if you are in

Flatback there is no fix for it besides surgery, some stave it off

for a time with exercise, and pain med's, and physical therapy. Once

I had a diagnosis, I read like a maniac, talked to people in the

various groups, and moved ahead with surgery, I wanted it fixed

yesterday. While my great outcome took more than one surgery, I'm

thankful every day I did it, as is my family. Being without that

awful pain is a gift I can never repay Dr. Kumar for.

>

> So go get seen by a qualified doc, see just what going on with you,

it's affecting your life negatively, so make the big step to see just

what going on. Information is power, then you have choices. And you

have us to support you as you go through this. I know it's scary and

daunting, but just take the step to see a doc or two, and read all

the stuff this site and others have to offer. There is a great list

on the site of questions to ask your doc at the first visit. Be sure

to bring someone else along to help you remember what went on, and

take notes. Working to get yourself better is the best time you can

spend, I'm glad I gave doc's one more shot, cause I was very

disheartened with them after all the years of being told to live with

it. Dialing that phone to make that first appointment with Dr. Kumar

I was just sure I was going to get more of the same, but when he

walked into the room at my first visit and ask " Who did this to you "

A wave came over me like I was home, someone got that I was a mess,

that I had found my way out. He spent an hour and a half with me with

spinal models explaining just what had gone wrong with my spine. He

asked in detail about my pain, and really listened, I wasn't just an

x-ray or a proceedure to him. I cried all the way home from that

visit, the relief was that profound, that there was something wrong

with me,and it had a name. Then I got on the web and found all these

terrific people in these groups who helped me through all this. I

read and read so I could ask better questions the next time. I took

it on like it was a research paper, wanted to know all my options. so

I made the decision to have surgery, and while it was the hardest

thing I went through in my life, I'm blessed each day for having done

it. I looked at it as though even if I got a reduction in pain by

fifty percent, I'd be so much better off and I'd be so much better in

my life with my kids and husband. I was very lucky that after my last

surgery I came out after the surgical pain was over with a painfree

status, something I only dreamed of.

>

> I wish you peace and a great doc while you travel through to find

your answers!

>

>

> Colorado Springs

> [ ] Re: New here

>

>

> I'm new here too, my

> name is Marci. I see on

> these groups everyone

> talking about revision

> surgury after revision

> surgury. I've only had

> one surgury that was in

> 1980 when I had my

> spinal fusion. I have

> had to work all my life

> to support myself and

> cannot take time of to

> have " surgury " after

> surgury and I don't

> think I'd want to.

> It is now about 25

> years and I have had

> increasing back pain.

> I've lost the abilaty to

> lift to much and also to

> stand for a long period

> of time, witch limits

> the type of jobs I can

> do.

> I am petrified to get

> more surgury, I don't

> really trust doctors,

> you know they don't

> really know that much.

> They fix one problem

> and give you another one.

> God Bless you, and be

> careful, we only can

> really take care of

> ourselves. Luv, Marci

>