Re: Digest Number 1191

[Guest guest]

Hi! I am 51 years old and was diagnosed with AIH in October 1999. I have never

been sick except for the occasional cold and flu so you can imagine how

absolutely overwhelming this whole ordeal has been. I am sure many of you felt

the same way too. I am the most " unmedical " person you will ever meet and I

have struggled to learn how to play the medical

game to gain proper care and information over the last year. I am doing much

better today than a year ago but it has been difficult at times. I work 250

miles away from my husband and kids (ages 28, 22, 18) and commute home on

weekends. I am a college professor. It seems as if I endured the worst of the

disease which was last fall and winter only to

decide to resign from my full time position and move back home at the end of

this semester. I already feel less stressed. Perhaps the stress of the job and

the commute was what was keeping me from getting on with my life. My family and

friends have been very supportive but since this is all new to us there is not a

lot they can do. My oldest daughter

is a RN and so are 4 of my closest friends. They all get very medical and

usually I just become more confused. But, they mull over everything that is

done to me and give me their opinions and truly do sort it out and explain

things. My one friend's daughter is a Pharmacist so that is helpful too.

I have a GI & Liver specialist that seems to be doing his job. My liver

count was very high last year (1300s) and of course my bilirubin (was 9.5. The

liver guy put me on prednisone 40 mg which does not seem to be very high

according to what some of you have been on but I responded. My liver counts

were normal in July 2000 and have remained so. I

am down to 10 mg prednisone a day (if I remember to take it) and he is talking

about weaning me off in December. That is a question I have. How long does

that take? I am clueless. Are we talking 6 mos. or more? Does anyone care to

comment? Also should I get a second opinion? The doctor seems to know what he

is doing but my nurse friends and

daughter keep urging me to go elsewhere. This doctor and I get along very well

but he has a front office from hell and I hesitate to call because his secretary

does not always pass on my questions and concerns. Has anyone gone to

specialist at Cleveland Clinic or University of Pittsburgh Medical Center?

Those are places close enough to me that I could

go. Will the liver pain ever go away? I was told I could take Tylenol but

someone mentioned in the digest that they don't take that. I do take Advil when

I can but I have ulcers and so that screws up my stomach when I do the Advil.

(I am not allowed to take it but sometimes the liver pain is just more than I

can stand.) Is the nausea something that

is always there too? Does anyone have pain in the lower right back? The right

quadrant below and around the liver? Does the fatigue come and go? Some days I

feel ok but then suddenly I am exhausted. Is this normal? Has anyone managed

their weight with the prednisone? I went on Weight Watcher's for a month this

summer and followed it to the " T " but

failed to lose any weight at all. Is that a prednisone side affect? I mean not

losing? I didn't gain any weight from the prednisone but I was already

overweight so I just didn't eat much out of fear of putting more on. I also

suffered from vomiting and diarrhea so perhaps that is why I didn't gain weight.

If you try to exercise like walking or

swimming does it bring on more liver pain? I have tried both but the pain got

to be too much. The doctor said I could do what ever felt good.

I hope I have not asked too many questions but if I have just ignore them.

I read many articles and such but sometimes you just need to talk to someone who

has actually experienced this whole thing. Thank you for any help you can give

me.

RSK

[Guest guest]

Rhea... I`m from Akron.... I go to the Cleveland clinc as I`am a

transplant receipiant-`95..... I was diagnosed in sept. with AIH.... I

get blood drawn every month since my transplant and my lfts were in the

5-600s ... they suspected rejection but a biopsy showed AIH....I too was

put on 40mgs pred. but today my dosage is 20mgs. ..... my functions are

approaching normal.... and I go to 10mgs next week....

despite what I was warned about I actually have lost 6-7 lbs. this

month.. i don`t know why as I eat everything in sight..... I also have

" smoldering " myeloma.. bone marrow cancer...which I am sure was a

result of the immunodepressants (prograf) I take daily ,to supress

rejection ..... I`m not sure what the ramificatis of having the two

diferent diseases are and have received no answer... saw my local

oncologist last week and he said my cancer was stable but having just

found out about the AIH he just wondered about taking two immunos at te

same time.... the clinic said they may lower my prograf but haven`t yet

as everybody is just monitoring my blood...

my local gastro. has pretty much the same stance-- watch and see... all

things considered , I`m not a good candidate for another transplant... I

have ups and downs too... before taking the pred. I had alot of constant

joint,muscle and back pain for quite some time, which I thought was old

age (i`m 57) and chronic exhaustion which I thought was due to

inactivety (at times it was terrible and I

stayed in bed long periods of times after trying to work a day or two)

some days how ever I felt pretty good.... I never really thought (or do

I now) I was sick...

I don`t get depressed and stay pretty positive...I don`t get real

involved in a lot of the medical stuff either but understand a lot more

than I let on.... I went to undergrad school in premed.... B.S.

anatomy..Ohio State `66 .... I have a daughter too who is an RN .... I

also have very good rapport with my local gastro.... who is a terrific

doctor and tells me anything I want to know..... be careful

don`t appear too lax in taking your meds. etc. you could be rubbing

some fur the wrong way......

God has been very good to me although I don`t know why.... I feel as if

every day of the last 5 yrs. has been some kind extra time given to

me.... I`ve been thru a lot ...my wife died of liver disease at age

39...but I`m still here ... God is good....

I will say this .... there is a LOT of info and help inside this group

just ask and a bazillion people will respond ...one way or another...

praying for love and serenity

Jerry Fox

AIH

MM

transplant `95

Akron,Oh.

Hi! I am 51 years old and was diagnosed with AIH in October 1999. I have never

been sick except for the occasional cold and flu so you can imagine how

absolutely overwhelming this whole ordeal has been. I am sure many of you felt

the same way too. I am the most " unmedical " person you will ever meet and I

have struggled to learn how to play the medical

game to gain proper care and information over the last year. I am doing much

better today than a year ago but it has been difficult at times. I work 250

miles away from my husband and kids (ages 28, 22, 18) and commute home on

weekends. I am a college professor. It seems as if I endured the worst of the

disease which was last fall and winter only to

decide to resign from my full time position and move back home at the end of

this semester. I already feel less stressed. Perhaps the stress of the job and

the commute was what was keeping me from getting on with my life. My family and

friends have been very supportive but since this is all new to us there is not a

lot they can do. My oldest daughter

is a RN and so are 4 of my closest friends. They all get very medical and

usually I just become more confused. But, they mull over everything that is

done to me and give me their opinions and truly do sort it out and explain

things. My one friend's daughter is a Pharmacist so that is helpful too.

I have a GI & Liver specialist that seems to be doing his job. My liver

count was very high last year (1300s) and of course my bilirubin (was 9.5. The

liver guy put me on prednisone 40 mg which does not seem to be very high

according to what some of you have been on but I responded. My liver counts

were normal in July 2000 and have remained so. I

am down to 10 mg prednisone a day (if I remember to take it) and he is talking

about weaning me off in December. That is a question I have. How long does

that take? I am clueless. Are we talking 6 mos. or more? Does anyone care to

comment? Also should I get a second opinion? The doctor seems to know what he

is doing but my nurse friends and

daughter keep urging me to go elsewhere. This doctor and I get along very well

but he has a front office from hell and I hesitate to call because his secretary

does not always pass on my questions and concerns. Has anyone gone to

specialist at Cleveland Clinic or University of Pittsburgh Medical Center?

Those are places close enough to me that I could

go. Will the liver pain ever go away? I was told I could take Tylenol but

someone mentioned in the digest that they don't take that. I do take Advil when

I can but I have ulcers and so that screws up my stomach when I do the Advil.

(I am not allowed to take it but sometimes the liver pain is just more than I

can stand.) Is the nausea something that

is always there too? Does anyone have pain in the lower right back? The right

quadrant below and around the liver? Does the fatigue come and go? Some days I

feel ok but then suddenly I am exhausted. Is this normal? Has anyone managed

their weight with the prednisone? I went on Weight Watcher's for a month this

summer and followed it to the " T " but

failed to lose any weight at all. Is that a prednisone side affect? I mean not

losing? I didn't gain any weight from the prednisone but I was already

overweight so I just didn't eat much out of fear of putting more on. I also

suffered from vomiting and diarrhea so perhaps that is why I didn't gain weight.

If you try to exercise like walking or

swimming does it bring on more liver pain? I have tried both but the pain got

to be too much. The doctor said I could do what ever felt good.

I hope I have not asked too many questions but if I have just ignore them.

I read many articles and such but sometimes you just need to talk to someone who

has actually experienced this whole thing. Thank you for any help you can give

me.

RSK

[Guest guest]

Hello Rhea,

A second opinion is always a good thing to do! Afterwards you can decide

what to do and where.

I noticed that if I don't eat spicy food and avoid stress (!) the pain is a

lot less and sometimes even gone. There are also people here that don't have

pain at all. If you are in a lot of pain, please contact your docter, please

don't start taking pills on your own. Some can be really harmfull especially

on your liver! The nausea I only noticed in the beginning when my lft's were

high. It is gone now. The fatique comes and goes. Some days it is better

then others. I just try to live my life as regular as possible. Eat and

sleep on time.

Hope this helps a little, please take care.

Loes, aih, the netherlands

>

>

>

>

>

>

[Guest guest]

Hi Rhea,

40mg pred is a pretty normal dosage. The key is that it brought your LFT's down. Tapering is really dependant on the individual and how long and high the dosage was. It sounds like you can forget your dose and not feel any negative effects. So, you should be able to taper off quite quickly. If I miss a dose, I know it within about 6 hours. So, I've been tapering for over a year.

Your doc seems to be very competent. As long as your care is giving good results, I wouldn't be concerned.

Managing weight with prednisone is nearly impossible! Try to do your best, but don't starve yourself, either. The pred weight gain is due to many factors, including fluid retention.

Exercise is good, but keep it moderate. Joint and muscle pain and weakness is a problem with this disease and you want to try to maintain some fitness without causing injury to the muscles and joints.

HTH.

Don

Terradon Unlimited

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: Rhea S. Klenovich [mailto:rhea@...]Sent: Wednesday, October 11, 2000 10:02 PM egroupsSubject: Re: [ ] Digest Number 1191Hi! I am 51 years old and was diagnosed with AIH in October 1999. I have never been sick except for the occasional cold and flu so you can imagine how absolutely overwhelming this whole ordeal has been. I am sure many of you felt the same way too. I am the most "unmedical" person you will ever meet and I have struggled to learn how to play the medicalgame to gain proper care and information over the last year. I am doing much better today than a year ago but it has been difficult at times. I work 250 miles away from my husband and kids (ages 28, 22, 18) and commute home on weekends. I am a college professor. It seems as if I endured the worst of the disease which was last fall and winter only todecide to resign from my full time position and move back home at the end of this semester. I already feel less stressed. Perhaps the stress of the job and the commute was what was keeping me from getting on with my life. My family and friends have been very supportive but since this is all new to us there is not a lot they can do. My oldest daughteris a RN and so are 4 of my closest friends. They all get very medical and usually I just become more confused. But, they mull over everything that is done to me and give me their opinions and truly do sort it out and explain things. My one friend's daughter is a Pharmacist so that is helpful too. I have a GI & Liver specialist that seems to be doing his job. My liver count was very high last year (1300s) and of course my bilirubin (was 9.5. The liver guy put me on prednisone 40 mg which does not seem to be very high according to what some of you have been on but I responded. My liver counts were normal in July 2000 and have remained so. Iam down to 10 mg prednisone a day (if I remember to take it) and he is talking about weaning me off in December. That is a question I have. How long does that take? I am clueless. Are we talking 6 mos. or more? Does anyone care to comment? Also should I get a second opinion? The doctor seems to know what he is doing but my nurse friends anddaughter keep urging me to go elsewhere. This doctor and I get along very well but he has a front office from hell and I hesitate to call because his secretary does not always pass on my questions and concerns. Has anyone gone to specialist at Cleveland Clinic or University of Pittsburgh Medical Center? Those are places close enough to me that I couldgo. Will the liver pain ever go away? I was told I could take Tylenol but someone mentioned in the digest that they don't take that. I do take Advil when I can but I have ulcers and so that screws up my stomach when I do the Advil. (I am not allowed to take it but sometimes the liver pain is just more than I can stand.) Is the nausea something thatis always there too? Does anyone have pain in the lower right back? The right quadrant below and around the liver? Does the fatigue come and go? Some days I feel ok but then suddenly I am exhausted. Is this normal? Has anyone managed their weight with the prednisone? I went on Weight Watcher's for a month this summer and followed it to the "T" butfailed to lose any weight at all. Is that a prednisone side affect? I mean not losing? I didn't gain any weight from the prednisone but I was already overweight so I just didn't eat much out of fear of putting more on. I also suffered from vomiting and diarrhea so perhaps that is why I didn't gain weight. If you try to exercise like walking orswimming does it bring on more liver pain? I have tried both but the pain got to be too much. The doctor said I could do what ever felt good. I hope I have not asked too many questions but if I have just ignore them. I read many articles and such but sometimes you just need to talk to someone who has actually experienced this whole thing. Thank you for any help you can give me.RSK

[Guest guest]

Rhea, welcome to the group. I will pass the answers to your questions to

other group members since it is my daughter and not me that has AIH.

Genny/Jodi's Mom/Florida

[Guest guest]

Hi Shireen,

I believe both are affected, even though doc said mainly your joints. I had

already had fibromyalgia that affects the muscles, so I couldn't tell the

difference. Are you hurting real bad?

)

[Guest guest]

Hi Andi,

I'm from Louisiana. I've been with the support group since my

diagnosis in Nov 99, but only post about every 2 weeks due to no time. So if

I understand it, you're not sure if you have AIH yet? Are you being tested

for it? My first hepatitis panel last year showed I did not have hepatitis

either, but my internist sent me to a liver specialist and he found the AIH.

I was immediately put on the meds, prednisone and immuran. I'm grateful I

was because I've been in remission about 5 months.

I hope you find out soon what's really going on with you. I'm thinking of

you.

Take care,

[Guest guest]

Theresa,

I hurt a lot sometimes and not others. It varies. All my doc could suggest

is for me to lose weight.

Shireen

>From: boyds59@...

>Reply- egroups

> egroups

>Subject: Re: [ ] Digest Number 1191

>Date: Sun, 15 Oct 2000 16:05:58 EDT

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>Hi Shireen,

>

>I believe both are affected, even though doc said mainly your joints. I

>had

>already had fibromyalgia that affects the muscles, so I couldn't tell the

>difference. Are you hurting real bad?

>

> )

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[Guest guest]

Happy Thanksgiving!!! May each of you have health..hope..and happiness on this day of thanksgiving!!! Donna

[Guest guest]

Hi Alisha, Judy g. here.

Why did he do that, particularly if you have CMT? I'm sorry, I don't

know or remember your status, because I broke my foot, TWICE and have

lost touch in the past few days. My thought, past a 'hoax,' was that he

got the acronym of CMT wrong and had a disease with the same initials,

which I posted back when this started. I was just curious.

Judy g.

Alisha Peckham wrote:

> alisha here,

>

> i already emailed phoenix 690 but there was something else that i want

> to

> add.... since i know tommy i can tell u that he doesn't has CMT

>

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

>

>

[Guest guest]

alisha here,

i already emailed phoenix 690 but there was something else that i want to

add.... since i know tommy i can tell u that he doesn't has CMT

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Dear group,

Have any of you developed kyphosis, scoliosis, or any such deformity in a FUSED area of your spine? I already know that I have flatback, but this is NOT flatback. It is actually the original fusion from my Harrington rod surgery which is suddenly curving forward. I was told that this was supposed to be impossible. This phenomenon has developed just within the last 1 1/2 years. Any information would be most helpful.

Sincerely,

Carla Kay

[Guest guest]

I am not sure if this is similar or not, but my spine is fused from

T3 to S1 and my lumbar curve has moved 14 degrees to the left in the

last few months and the thoracic curve has moved 11 degrees in the

last few months. I also have developed the leaning forward but the

doctor I saw last was not able to measure the degree and sent it on

to my surgeon who did not send me any information on it.

Right now the docs are not sure what to do and I am in a holding

pattern. I am told to just keep getting x-rays so that they can

watch how quick it is moving and that is what I am doing. I hope

that we can come up with some solution soon because it is causing an

extreme amount of pain.

I was told at first that it was impossible for the curves to

progress because the fusions would keep it from doing that, but x-

rays don't lie.

> Dear group,

>

> Have any of you developed kyphosis, scoliosis, or any such

deformity in a

> FUSED area of your spine? I already know that I have flatback,

but this is NOT

> flatback. It is actually the original fusion from my Harrington

rod surgery

> which is suddenly curving forward. I was told that this was

supposed to be

> impossible. This phenomenon has developed just within the last 1

1/2 years. Any

> information would be most helpful.

>

> Sincerely,

> Carla Kay

[Guest guest]

At 08:15 PM 8/31/2005, singer4jc7494@... wrote:

>Dear group,

>

>Have any of you developed kyphosis, scoliosis, or any such deformity

>in a FUSED area of your spine?

I developed kyphosis in a fused area, but that's because they didn't

put any hardware in the back in the 1960's, and over the years it

moved around. I also got bone spurs. And the part beneath the fused

area (which was not fused) continued to have Scoliosis, although my

parents and I were ASSURED by doctors then that nobody got Scoliosis

after they finished growing (which for me was about 19 or 20.). They

also said I would never have a day of pain in my life later on (yeah,

right!) and that my spine would be so much stronger (yeah, right).

Now I take all doctor comments with a grain of salt...

Guess that's why they call it " practicing medicine " !

NB

[Guest guest]

NB...I was wondering if anyone could answer a few questions for me ?..Can you please tell me what is kyphosis and what are bone spurs..I continue to see this word in my reports and I have no idea what they are talking about..I also have this very large lump on the left hand side of the mid of my back, a very hard one and am curious what it could be.. It is difficult to sit in anything except a well padded soft chair because of it..I had my rods and hardware put in , in 1999 and am curious if anyone would know what these rods are called since my dr. has never told me...Any answers would be appreciated..Jill

-- Re: Digest Number 1191

At 08:15 PM 8/31/2005, singer4jc7494@... wrote:>Dear group,>>Have any of you developed kyphosis, scoliosis, or any such deformity >in a FUSED area of your spine?I developed kyphosis in a fused area, but that's because they didn't put any hardware in the back in the 1960's, and over the years it moved around. I also got bone spurs. And the part beneath the fused area (which was not fused) continued to have Scoliosis, although my parents and I were ASSURED by doctors then that nobody got Scoliosis after they finished growing (which for me was about 19 or 20.). They also said I would never have a day of pain in my life later on (yeah, right!) and that my spine would be so much stronger (yeah, right).Now I take all doctor comments with a grain of salt...Guess that's why they call it "practicing medicine"!NB

[Guest guest]

Excellent point. Good chuckle, too.

> >Dear group,

> >

> >Have any of you developed kyphosis, scoliosis, or any such

deformity

> >in a FUSED area of your spine?

>

> I developed kyphosis in a fused area, but that's because they

didn't

> put any hardware in the back in the 1960's, and over the years it

> moved around. I also got bone spurs. And the part beneath the

fused

> area (which was not fused) continued to have Scoliosis, although

my

> parents and I were ASSURED by doctors then that nobody got

Scoliosis

> after they finished growing (which for me was about 19 or 20.).

They

> also said I would never have a day of pain in my life later on

(yeah,

> right!) and that my spine would be so much stronger (yeah, right).

>

> Now I take all doctor comments with a grain of salt...

>

> Guess that's why they call it " practicing medicine " !

>

> NB

[Guest guest]

My kids were into "whip-its" If you buy the canned whipped topping thats what they would use

very often. I later found metal cylinders used to puncture cannisters of co2.My ex-husband,their father started them on it,he said they were harmless.Yes really!!!! They are now 20 and 21 and no longer do them but it is prevalent in younger teens. They have went to other more dangerous drugs that make me almost nostalgic for the whip-its! LOL!!!! That was a joke!

Mashell__________________________________________________

[Guest guest]

Hi again, --

I am so sorry to hear about your scoliotic progression. It's amazing

how many " truths " we've received from surgeons which later proved to

be myths.

I don't know if your doctors are as concerned about your leaning

forward as they are about the coronal-plane progression, but I hope

you can get some sense of what is happening in the sagittal plane as

well. As you probably know, your surgeon should be able to measure

this, per the " plumbline " method described in an SRS white paper put

out a year or two ago.

If nothing else, someone should be improving your pain management

situation. I know -- easier said than done -- but is there any more

you can do to get some relief? Do you have access to a good pain

management program?

Best,

> > Dear group,

> >

> > Have any of you developed kyphosis, scoliosis, or any such

> deformity in a

> > FUSED area of your spine? I already know that I have flatback,

> but this is NOT

> > flatback. It is actually the original fusion from my Harrington

> rod surgery

> > which is suddenly curving forward. I was told that this was

> supposed to be

> > impossible. This phenomenon has developed just within the last

1

> 1/2 years. Any

> > information would be most helpful.

> >

> > Sincerely,

> > Carla Kay

[Guest guest]

FINALLY 2 REPLIES TO MY PLEAS;

thanks,

ames gill

[Guest guest]

Hi again, ,

My surgeon in Minneapolis sent me a nice letter the other day

requesting me to come and visit him in November. I guess he just

now got around to reading my July x-rays and reports from the doctor

here in Fargo. I suppose I should get an appointment set up, I just

hate the thought of four hours in the car to get there, at least

three hours of wait time to see him and then another four hours to

get home. It is at least two weeks of recovery time for me to get

over that. And November is not always the safest time of year to be

traveling around here, a blizzard can whip up in a matter of a

couple hours in this area. I hope to get some more information when

I get down there to see him. And he better be prepared to explain

to me what we are going to to do stop this thing of my hips going as

far to the left as they can and my shoulders going as far to the

right as they can and everything in between trying to keep up. I

look like a walking S at times. And if one more person asks me if I

have MS I am going to scream!! I can't understand why me looking

like an S leads them to believe I have MS.

Pain management would be a wonderful idea, but my insurance only

covers a little bit and the rest gets billed to me. Money rarely

stretches to cover all of my medical bills as it is, if I were to

add any more to it I wouldn't be able to make ends meet. Maybe

someday.

> > > Dear group,

> > >

> > > Have any of you developed kyphosis, scoliosis, or any such

> > deformity in a

> > > FUSED area of your spine? I already know that I have

flatback,

> > but this is NOT

> > > flatback. It is actually the original fusion from my

Harrington

> > rod surgery

> > > which is suddenly curving forward. I was told that this was

> > supposed to be

> > > impossible. This phenomenon has developed just within the

last

> 1

> > 1/2 years. Any

> > > information would be most helpful.

> > >

> > > Sincerely,

> > > Carla Kay

[Guest guest]

Hi, --

Yes, I can certainly respect the concerns you outline here (winter

driving, recovery time from demanding trips to doctors, extremely

tight budget, etc.)

Is there any chance this surgeon would be willing to have a phone

conference with you as a kind of interim measure? I have to think he

is considering recommending further treatment to you after seeing

your x-rays. Not to be an alarmist, but if you do need another

operation, I wonder how postpone-able this would be . . . ?

Best,

> > > > Dear group,

> > > >

> > > > Have any of you developed kyphosis, scoliosis, or any such

> > > deformity in a

> > > > FUSED area of your spine? I already know that I have

> flatback,

> > > but this is NOT

> > > > flatback. It is actually the original fusion from my

> Harrington

> > > rod surgery

> > > > which is suddenly curving forward. I was told that this was

> > > supposed to be

> > > > impossible. This phenomenon has developed just within the

> last

> > 1

> > > 1/2 years. Any

> > > > information would be most helpful.

> > > >

> > > > Sincerely,

> > > > Carla Kay

[Guest guest]

Hi, --

Yes, I can certainly respect the concerns you outline here (winter

driving, recovery time from demanding trips to doctors, extremely

tight budget, etc.)

Is there any chance this surgeon would be willing to have a phone

conference with you as a kind of interim measure? I have to think he

is considering recommending further treatment to you after seeing

your x-rays. Not to be an alarmist, but if you do need another

operation, I wonder how postpone-able this would be . . . ?

Best,

> > > > Dear group,

> > > >

> > > > Have any of you developed kyphosis, scoliosis, or any such

> > > deformity in a

> > > > FUSED area of your spine? I already know that I have

> flatback,

> > > but this is NOT

> > > > flatback. It is actually the original fusion from my

> Harrington

> > > rod surgery

> > > > which is suddenly curving forward. I was told that this was

> > > supposed to be

> > > > impossible. This phenomenon has developed just within the

> last

> > 1

> > > 1/2 years. Any

> > > > information would be most helpful.

> > > >

> > > > Sincerely,

> > > > Carla Kay

[Guest guest]

Hi, --

Yes, I can certainly respect the concerns you outline here (winter

driving, recovery time from demanding trips to doctors, extremely

tight budget, etc.)

Is there any chance this surgeon would be willing to have a phone

conference with you as a kind of interim measure? I have to think he

is considering recommending further treatment to you after seeing

your x-rays. Not to be an alarmist, but if you do need another

operation, I wonder how postpone-able this would be . . . ?

Best,

> > > > Dear group,

> > > >

> > > > Have any of you developed kyphosis, scoliosis, or any such

> > > deformity in a

> > > > FUSED area of your spine? I already know that I have

> flatback,

> > > but this is NOT

> > > > flatback. It is actually the original fusion from my

> Harrington

> > > rod surgery

> > > > which is suddenly curving forward. I was told that this was

> > > supposed to be

> > > > impossible. This phenomenon has developed just within the

> last

> > 1

> > > 1/2 years. Any

> > > > information would be most helpful.

> > > >

> > > > Sincerely,

> > > > Carla Kay

[Guest guest]

Hi ,

I am wondering too how long I could postpone another surgery. I

wont have it done anytime after November and since I couldn't get in

to see him until November 30th that means I wont schedule anything

until at least mid-April. I can't take the risk of trying to get

back to Fargo in the middle of a blizzard and my dad would be darned

determined to do it too! I am going to see if I can't have the

cervical work done this winter and hopefully find a surgeon here in

Fargo. I am not sure if I can just go with a surgeon who does

cervical surgeries or if I need to find one familiar with adult

scoliosis and previous fusion surgeries.

I am wiped out tonight, way to much to think about at this point.

Hopefully once I get a chance to get some rest I can think more

clearly on what my next steps will be. Sometimes it takes me a few

days to know what I really want to do.

> > > > > Dear group,

> > > > >

> > > > > Have any of you developed kyphosis, scoliosis, or any such

> > > > deformity in a

> > > > > FUSED area of your spine? I already know that I have

> > flatback,

> > > > but this is NOT

> > > > > flatback. It is actually the original fusion from my

> > Harrington

> > > > rod surgery

> > > > > which is suddenly curving forward. I was told that this

was

> > > > supposed to be

> > > > > impossible. This phenomenon has developed just within the

> > last

> > > 1

> > > > 1/2 years. Any

> > > > > information would be most helpful.

> > > > >

> > > > > Sincerely,

> > > > > Carla Kay

[Guest guest]

,

So Sorry to hear of your continuing problem. Sounds like my story.

Over and over, I kept telling my scoli-surgeon that my spine was

moving again and he would not admit it. He kept saying the fusion

was firm and everything looked fine on the xray. I knew it wasn't, I

was curving forward and sideways back into an " S " curve. Finally I

got really firm with him and he said he did not usually refer people

to other doctors but this time he was giving me the names of three

revision specialists in NYC. Fusions do not always heal properly in

all areas or there was a weak spot that broke. A break in the fusion

is called a pseudoarthosis and is not impossible and I had several.

The entire fusion had to be revised with some new straightening done

with new hardware. It was two long procedures and a long recovery

but it was worth it. I am so glad I found this Doctor. A year later,

this past February, I had a separation in the tailbone hardware and

it required minor repairs. He did it with no complications. ( I was

fused to S-1 with a cage. He actually implanted a sponge in the cage

filled with hardening fusion material called BMP and packed the

surrounding area and hardware with bone fusion material.) So far, so

good. Look up the term " Pseudoarthrosis " under delayed surgery

failures. I found the most info on this topic on the website

called " Orthospine " . I wish you good luck and hope you find a doctor

who understands and is able to revise the problem.

Jan

In , " denisev569 "

<denisev569@y...> wrote:

> Hi again, ,

>

> My surgeon in Minneapolis sent me a nice letter the other day

> requesting me to come and visit him in November. I guess he just

> now got around to reading my July x-rays and reports from the

doctor

> here in Fargo. I suppose I should get an appointment set up, I

just

> hate the thought of four hours in the car to get there, at least

> three hours of wait time to see him and then another four hours to

> get home. It is at least two weeks of recovery time for me to get

> over that. And November is not always the safest time of year to

be

> traveling around here, a blizzard can whip up in a matter of a

> couple hours in this area. I hope to get some more information

when

> I get down there to see him. And he better be prepared to explain

> to me what we are going to to do stop this thing of my hips going

as

> far to the left as they can and my shoulders going as far to the

> right as they can and everything in between trying to keep up. I

> look like a walking S at times. And if one more person asks me if

I

> have MS I am going to scream!! I can't understand why me looking

> like an S leads them to believe I have MS.

>

> Pain management would be a wonderful idea, but my insurance only

> covers a little bit and the rest gets billed to me. Money rarely

> stretches to cover all of my medical bills as it is, if I were to

> add any more to it I wouldn't be able to make ends meet. Maybe

> someday.

>

>

>

>

> > > > Dear group,

> > > >

> > > > Have any of you developed kyphosis, scoliosis, or any such

> > > deformity in a

> > > > FUSED area of your spine? I already know that I have

> flatback,

> > > but this is NOT

> > > > flatback. It is actually the original fusion from my

> Harrington

> > > rod surgery

> > > > which is suddenly curving forward. I was told that this was

> > > supposed to be

> > > > impossible. This phenomenon has developed just within the

> last

> > 1

> > > 1/2 years. Any

> > > > information would be most helpful.

> > > >

> > > > Sincerely,

> > > > Carla Kay