first post

[Guest guest]

Hi Pam and welcome to the board.

You sound like you are already a vetran of many surgeries and know

that the choices ahead will be difficult. I know that you will find

tons of information on others experiences that will help along the

way.

I think Kathi gave good advice...even if you plan on sticking with

your current surgeon it might set you mind at ease to get a second

opinion from one of the " revison specialists " that are well regarded

here. You don't say who your docrtor is or where you live in

Ohio...but being pretty centally located you probably can fairly

easily access NYC, Minneapolis, Boston or even Texas. I think most

of these surgeons will consult by phone...I think Lagrone in Texas

is mention most often in this regard.

I am sorry you are having difficulties, but we will look forward to

hearing more from you! Cam

[Guest guest]

I have been "lurking" here for a month or more, and have found many helpful nuggets of truth.

I had my THR on 1/13/05 and seemingly was doing well for the first four weeks. I woke up one morning and had pain and stiffness in my non-operated side. I know I had arthritic changes in it, but did not think it was that bad.

Have any of you had this happen. I am 62, and otherwise pretty healthy. I was thinking maybe "someday" for the second hip, but now I'm not sure.

Those of you who have had two done, how far apart were they?

Thanks for your input. I hope this is a flare up and it will settle down. But I like to be prepared. I go back to the OS 2/28 for x-rays..

Huntly (a female!)

[Guest guest]

I've had both hips replaced.....surgeries were 6 months apart.

[Guest guest]

Why didn't you have both hips done at once? Was there a medical reason or was it your choice?

I am trying to make up my mind about one THR at a time or both at once. I would appreciate your comments.

Bob

In a message dated 2/13/2005 8:00:33 P.M. Pacific Standard Time, Pimentel7@... writes:

I've had both hips replaced.....surgeries were 6 months apart.

[Guest guest]

Hi ,

How are you doing with having both of your Hips replace withing 6 months ? I hate to say it I had my right hip replace and my right knee and the Hip bothers me more then the knee .Well you take care .

Susie

-------------- Original message -------------- I've had both hips replaced.....surgeries were 6 months apart.

[Guest guest]

Huntly,

I am a 30 year old female and had both hip’s

done myself at the age of 28. Mine where done 3 months apart. And I to had that

non-operated side get worse between the two surgeries. From what I was told

when my right started hurting real bad after the left was replaced was, because

after I had the surgery, I would use that leg less (the operated one) I was

unaware of my walking like that, and thus caused my right joint to ache more

because it was taking up more slack from the left. Once my muscles where

healed, and I regained some strength (about 4 weeks after surgery number 1) the

soreness in the right diminished somewhat. But it honestly took that second hip

being replaced to stop it all together. My total downtime for just the hip

replacements, not counting in between surgeries was about 4 weeks. I was a hard

head for both and made sure I went from walker to crutches to Cain before I

left the hospital. Not saying I was totally healed and ready to go run a race

or anything, just in my view ready to walk without aid. Not everyone can get up

and go that darn fast, I was one of the few I guess that could. But if that

other hip is giving you issues, I would go ahead and do it. There is no point

in spending your life in pain. If there is something that can be done for it

other then medication then I say go for it. The other hip might be sore since

you just had it done, its getting used to walking normal again. But its not permanent

as the other one will be if you do not do something about it. I am not an advocate

of medication on a constant bases. Especially for pain, all a pain med is, is

something that covers up the symptoms of pain, and is not curing the underlying

cause of the pain. Also I am not saying well hey if you have a heart condition

stop taking your heart med’s either! Just me and pain med’s don’t

go together real well especially with what’s been going on with Celebrex,

Vioxx and Aleve.

Tiffinee L Epton

From:

hhashagen@... [mailto:hhashagen@...]

Sent: Saturday, February 12, 2005

6:05 AM

To:

Joint Replacement

Subject: Re:

First Post

I have been " lurking " here for

a month or more, and have found many helpful nuggets of truth.

I had my THR on 1/13/05 and seemingly was

doing well for the first four weeks. I woke up one morning and had

pain and stiffness in my non-operated side. I know I had arthritic

changes in it, but did not think it was that bad.

Have any of you had this

happen. I am 62, and otherwise pretty healthy. I was

thinking maybe " someday " for the second hip, but now I'm not

sure.

Those of you who have had two done, how

far apart were they?

Thanks for your input. I hope

this is a flare up and it will settle down. But I like to be

prepared. I go back to the OS 2/28 for x-rays..

Huntly (a female!)

[Guest guest]

Hi Huntly: I'm glad you asked that question and look forward to

responses. My THR was on the right side and now the left hurts more

than ever. My OS said that usually, the opposite side settles down

a bit, but I'm not having that experience. Best wishes to you.

Isn't this group a great thing? The wonderful people here have

really helped me through bunches of anxiety.

dave, 49

> I have been " lurking " here for a month or more, and have found

many helpful

> nuggets of truth.

>

> I had my THR on 1/13/05 and seemingly was doing well for the first

four

> weeks. I woke up one morning and had pain and stiffness in my

non-operated

> side. I know I had arthritic changes in it, but did not think

it was that bad.

>

> Have any of you had this happen. I am 62, and otherwise pretty

healthy.

> I was thinking maybe " someday " for the second hip, but now I'm

not sure.

>

> Those of you who have had two done, how far apart were they?

>

> Thanks for your input. I hope this is a flare up and it will

settle down.

> But I like to be prepared. I go back to the OS 2/28 for x-

rays..

>

> Huntly (a female!)

[Guest guest]

In a message dated 2/15/2005 12:57:27 A.M. Eastern Standard Time, BobSMTV@... writes:

Why didn't you have both hips done at once? Was there a medical reason or was it your choice?

In my case, it was not given as an option, and the x-ray changes seemed so much less on the opposite side.

As an update on my first post....my pain and stiffness has backed off somewhat now. I am navigating with a cane for part of the time and a walker the other. I go back to the OS in less than two weeks. Can't wait to see what x-rays show.

This is a wonderful place to get encouragement and share those experiences that mean virtually nothing to others who have not had the surgery.... such as ..

I can get to the bathroom at night down stairs...(no commode needed now)

I can get a shower and get dressed by myself!

I can get my compression stockings off by myself, but not on....

I can get in and out of the car with no problem.... (no driving til OS visit)

At four weeks things can only get better..... hopefully my "other" hip will settle down for months or years... time will tell...

Huntly

[Guest guest]

Hi Bob

My left hip was worse than the right and my OS, being very conservative, wanted to see if a left THR would suffice. It did not so 6 months later I had a RTHR.

I also think it depends on where you are in your life. My hip replacements were in 2001 but I had been living this nightmare for 4 years (as I became more and more crippled). I went to a g roup of prominent ortho docs who batted me around for a long time before I wised up and sought other opinions. So by the time I changed ortho docs I was grateful for any typed of hope and improvement.

Looking back, do I wish I had them done at the same time.....I don't think so.

I hope this helps.

Sally

[Guest guest]

Hi Dave

I had both hips replaced in 2001.....6 months apart. I can assure you that the 2nd replacement went sooooooooooooo much better than the first. With the first I was scared of the unknown and also went into a deep depression. With the seond I knew what to expect, stayed as active as I could (didn't want that depression again), and had a good hip on the other side.

Sally

[Guest guest]

Hi Bob:

My OS wouldn't even allow me to consider having both hips done at

the same time, and now I'm really glad that he had that attitude.

Healing is slow and I've depended a lot on my left side to help me

continue through daily living while allowing the right side to heal.

The only downside to waiting, at least for me, is know how terrible

the next one will be. LOL Albeit bad, I'm now looking forward to

getting the left into shape like the right.

cheers,

dave, 49

THR 01/31/05

>

> Why didn't you have both hips done at once? Was there a medical

reason or

> was it your choice?

>

> I am trying to make up my mind about one THR at a time or both at

once. I

> would appreciate your comments.

>

> Bob

>

> In a message dated 2/13/2005 8:00:33 P.M. Pacific Standard Time,

> Pimentel7@a... writes:

>

> I've had both hips replaced.....surgeries were 6 months apart.

>

>

[Guest guest]

That is wonderful to hear, Sally. Thanks for sharing.

cheers,

dave

> Hi Dave

> I had both hips replaced in 2001.....6 months apart. I can assure

you that

> the 2nd replacement went sooooooooooooo much better than the

first. With the

> first I was scared of the unknown and also went into a deep

depression. With

> the seond I knew what to expect, stayed as active as I could

(didn't want that

> depression again), and had a good hip on the other side.

> Sally

[Guest guest]

Joe,

To answer your question, yes people who suffer from reiters do get better. And

yes, people suffering from Reiters do go into remission.

My rheumatologist once told me that he had read a study that concluded

approximately 1/3 of the people who suffer from reiter's recover completely

within 6-12 months and never have a problem with it again; 1/3 recover

temporarily only to suffer from it again months or years later as they come out

of remission; and 1/3 have a chronic form of the disease and never go into

remission. I've never been able to confirm all this but in my conversations

with other doctors they claim it sounds reasonable. It's frustrating, but the

disease is rare enough that there isn't mountains of research conducted on it

and consquently, we're all in this group swapping info, treatment ideas etc.

My guess is that most of the individuals in this group suffer from the chronic

form of the disease (myself included, unfortunately) to varying degrees. Odd as

it may seem, I consider myself lucky as I know from reading many of the posts in

this group that it could be a lot worse for me. The first year or so I had the

disease (I've had it for three now) I prayed hard that I'd be spared having it

as chronic condition. I guess I wasn't that lucky but maybe you will be. Your

own immune system (over time) seems to be the ultimate factor in your prognosis.

Drugs can certainly help reduce inflammation, ease pain and make the disease

manageable but there is no " cure " per se.

In the meantime, it's good that you are taking time to educate yourself about

the disease and challenge your doctors to provide good answers and sound care.

I hope things look up for you soon.

Best wishes,

Mike

[Guest guest]

Hi Joe,

I know how you feel - I am almost 35 and a female, and I was diagnosed with

Reiter's when I was 27. After FINALLY getting a diagnosis and a wonderful

Rhuematologist - I went on a combination of medications that included,

sulphasalazine, methotrexate, relafin, prednisone and vicadin. The medications

took a while to kick in, but after a couple of months, I started to see minor

improvements, and within about 4 months, I was actually working out lightly

again - which was a miracle considering at one point, I couldn't even walk! It

took about 7 months, but I actually started going off the medications -

methotrexate and prednisone - and went into remission about 2 months later.

I stayed in remission for 5 years. Just a year ago, I had another flare up, and

after going back on all the same meds for 5 months (including Vioxx) - I finally

went on Enbrel. Enbrel has been wonderful and once again I am working out and

feeling better than I have in a year. I'm not sure it's remission because I'm

still on the Enbrel, but we're hoping in few months to go off gradually. Enbrel

has given me my life back.

So....my point is, I know how hard it is and how bad you feel. But, for me, it

got better. I was so young when I was diagnosed and couldn't comprehend a

lifetime of chronic illness - but now I understand that it is chronic and there

will be good and bad periods. Stick with your rheumy and if she's good - she'll

help manage your pain and your illness. The meds can feel like their making

things worse sometimes, but stick with those also - some medications take a

while to kick in.

You'll need patience and faith. I have a full life with a husband 2 small

children and even a swim group I work out with. Don't be afraid to ask for help

and accept it when it is offered. I hope this helped a little. Hang in there!

[Guest guest]

Just a brief note for now, but there are those of us who do get better,

Maybe not as much as we would like but some better. I find I am better when

my allergies are treated well and I am in an area where there is not so much

pollution. I do have a diagnosis of AS but the 2 diseases do seem similar.

I will write more but I feel sure that there are ppl here who are going to

write that though it isn't always easy, the struggle and trying to stay on

top of things does result in some improvement most of the time.

Keeping a positive outlook isn't easy but work with it as much as you can.

GA

[Guest guest]

Hi Joe

Welcome to the list. And as all of us do, pray that your disease will be cured.

I really hate to say this, but, you are one of the luckier victims of Reiter's.

You recieved a diagnosis very early in the process. Many of us went over 10

years before diagnosis. We were told that the " pain " was in our heads. The

favourite diagnosis of a doctor that knows little about Spondy illnesses.

Just after I was diagnosed I went into a nose dive as I know what the diagnosis

would bring as I studied in the advancement in my career. Two years of being in

self-pity and then I went back to college to occupy my time as I was medically

retired. During this time I met a mascot character named Jake The Snake. As a

favour for a friend I put the costume on as he could not be there. Twice I put

that costume on and it was a " love affair " and it blossomed into 12 years of

pure fun. I learned very quickly that exercise was necessary to keep going so I

participated in the team warm ups and even practices. That helped greatly. I

did so well as Jake that I was approached by the Toronto Blue Jays organization

to be BJ Birdie in their farm system team, then came the Hockey Team and Rroary,

and Coyote for the local mall.

That was the best thing that could of happened to me as I was going through some

very reough and stressful times, not only with my diseases but in my marriage.

When I put on one of those costumes it was a different world. I developed 4

seperate personalities one for each costume so nobody would figure out who was

wearing the costumes.

As others have told you, some go into remission for many years, but the disease

stays with us. All we can do is manage the disease.

Blessings

+Dave

" It has been said that man is a rational animal. All my life I have

been searching for evidence which could support this. "

--Bertrand

" Everyday I beat my own previous record for number of consecutive days I've

stayed alive. "

[Guest guest]

Dave,

What a lovely inspiring story, thank you.

in CA

----- Original Message -----

[Guest guest]

Hi and welcome to the 'funny farm'.

You certainly sound as though you've been through the wringer.

I did the salicylate free diet for nine weeks and no difference at all. I take Nasonex daily and also Seritide for my asthma.

While I'm on prednisone everything's fine but when I go off, well that's another story. Right now I'm waiting on my Immunologist to contact me with his 'good' news.

I hope we can help you hear but if not, feel free to join in - we all have broad shoulders.

kjmccarry@... wrote:

Hello

New to board. Have had Samters since 16...Now 40...Have been totally inactive since put on 50 pounds. Recent physical showed chlosterol at 200(have to watch it)

Don't take Advair which is prescribed because I do not get asthma attacks

Currently get allergy shots(but will probally quit,have to go weekly)

Currently have Naserol(doesn't work because of constant congestion, do sinus rinses.

What supplements do you guys recommend?

Also got a CPAP machine last year,which helps out the SNORING

Finally have constant thick mucus, try to stay away from high salicicyte foods.

AND had FESS surgery last year AND DIDN'T WORK!!!!!!!! The ##$% ENT surgeon told me afterwards triad patients have very little succesful rates...I wish I could sue him for not telling me before, would not have had it...See some people on board have had multiple surgeries.

Enough rambling for now

Find local movie times and trailers on Movies.

[Guest guest]

To the moms with young children;

To add to what Trudy said; there are those of us out here that have less serious symptoms. I am one of those lucky ones. I am desensitized to aspirin and only need to take Claritin, Advair and Flonase daily along with my aspirin. I have never taken oral steroids and have only had one surgery in over 2 years. There was a period where I thought I was dying with asthma so bad I could barely make it up a flight of stairs.

The other day gave us his recipe for success, I think most of us have found some combination of drugs or supplements that have helped. You will find that some things that should help actually hurt (I.E...I think I am allergic to Singulair).

Once I discovered my triggers and how to deal with them things have been better. I enjoy an occasional beer or scotch with a cigar ( probably not a good reccomendation for the young ones). Keep up the research because you are your childrens best advocate. Insist on being heard by your doctors or find new doctors. This a disease that very few doctors have even heard of. My GP ran tests on me for a year thinking I had ulcers or acid reflux. He gave me 6 courses of antibiotics for chronic sinus infections. In fact, I had hurt my back working out and I was taking Advil daily and it was tearing me up. My wife finally got upset and asked for a referral. The ENT heard my symptoms and said "You have the aspirin triad" It was that simple!

Things can and hopefully will get better. You are both obviously loving and caring moms your children are lucky to have you. You will be in my prayers.

Marcus

[Guest guest]

Hi ...and don't let our horror stories scare ya. Sometimes when

someone asks we let it all out, and sometimes we have really good days

and post those too! I was thinking about some of the mom's with kids

that posted said it was depressing to read our stories. I would get a

little skittish too if I read the whole 20 years in one post! Sorry

bout that mom's, I didn't mean to make you think the worst! Quality of

life can be had with this disorder. I have other issues too so that

plays into my posts...lupus and fibromyalgia just joined samters in my

health problems, so that is what you hear when I post about being

miserable. Trudy.

--- In samters , kjmccarry@a... wrote Hello New to

board.

[Guest guest]

Hi, . I've been where you are, and I'm better now, so keep up

the hope. Do you use an expectorant, specifically Mucinex (OTC

Guifenisin)? That might help thin out the mucous so you can get the

steroid spray to work in your nose.

in land

> Hello

> New to board. Have had Samters since 16...Now 40...Have been

totally inactive since put on 50 pounds. Recent physical showed

chlosterol at 200(have to watch it)

> Don't take Advair which is prescribed because I do not get asthma

attacks

> Currently get allergy shots(but will probally quit,have to go

weekly)

> Currently have Naserol(doesn't work because of constant

congestion, do sinus rinses.

> What supplements do you guys recommend?

> Also got a CPAP machine last year,which helps out the SNORING

> Finally have constant thick mucus, try to stay away from high

salicicyte foods.

> AND had FESS surgery last year AND DIDN'T WORK!!!!!!!! The ##$%

ENT surgeon told me afterwards triad patients have very little

succesful rates...I wish I could sue him for not telling me before,

would not have had it...See some people on board have had multiple

surgeries.

> Enough rambling for now

>

[Guest guest]

Welcome to the group Amy,

you're right = it is a pretty active list - not

so much on the weekends but it's still the best

place to be <GBG>

I have 2 twig sisters, mom and a sister who are

18-20 and one who's anneroxic / bullimic and runs

between the tiny ones and near mine.

what kind of plan are you going to follow?

Welcome,

--- amylw1919 <amylw1919@...> wrote:

> Hey everyone. I'm new to the group, so I

> thought I would take a few

> minutes to introduce myself and get aquainted

> with everyone.

>

> My name is Amy, and this is step 1 in attaining

> my goal to loose

> ideally 110 pounds.

Live, Love, Laugh

[Guest guest]

Welcome! Do you go by Amy or Amy Lynn? Where do you live? I live in

Houston, I'm 41, I'm 5'2 and I weigh 275.

So what's your plan for reaching your goals? I'm doing 1800 calories and

walking on the treadmill at least 4 times a week. I just restarted on Sat.

though.

Ann

[Guest guest]

First off I would like to say Welcome to the group Amy this is a great group Im sure you will like it here. Im Tina from West Virginia. I for one don’t have to lose vanity weight. I need to lose over 170+ pounds. Im 5'2" and weigh 312. I want to get down to about 140 or 150 pounds. I have had weight problems my whole life. I think when I was born I was only 5 pounds but when I got 6 months old the doctor told my mom I was obese and wanted to know what they were feeding me..LOL. Well from then on I had a weight problem. I also hate shopping with my mom and sister cuz they both weight roughly about 145-150 and my mom thinks shes fat. But they can go in any store and find something to weight. Where I have to look for the Plus size clothing and then its still hard to find things that fit and look right on me. I to have found a lot of groups that all the people in them want to lose small amounts of weight. I was in the one group for a few days that everyone wanted to lose 10 pounds except me. They said they were heffers and needed to get the weight off. So needless to say I left..LOL. Well I hope you like it here. If you ever need someone to talk to off list please feel free to email me at Mystic_Dolphin_Lovr_28@msncom and if you have MSN Messenger you can add me with the same address.

Tina

First Post

Hey everyone. I'm new to the group, so I thought I would take a fewminutes to introduce myself and get aquainted with everyone. My name is Amy, and this is step 1 in attaining my goal to looseideally 110 pounds. I am 23 years old, 5'2 and currently 250 (at leastlast time I was at the doctor). My ultimate goal weight is 140,however, i think i would be happy with 150 or even 160. Like manypeople, I have struggled with my weight my entire life. There hasnever been a time in my life when i was a normal weight for my age andheight. I was even a big baby. I am finally tired of it! Things I usedto find enjoyable, are simply getting worse and worse. I dreadshopping anymore! Especailly since my mom and my sister are both about100 pounds. Going with them is horrible! I hate it!!! I want to beable to look in the mirror and be happy with what I see. I have triedseveral other groups, however, have found that many of them consist ofpeople who want to loose vanity weight. They weigh 140 and want toweigh 95, so I am hoping this group will provide a lot of support andencouragement. It also seemes like a very active group, which is greatb/c I hope to post my successes nearly every day. I also hope to postsome pics and things soon too!!!Well, everyone have a pleasant evening, and I will keep in touchAmy Lynn

[Guest guest]

> people who want to loose vanity weight. They weigh 140 and want to

> weigh 95, so I am hoping this group will provide a lot of support and

> encouragement. Amy Lynn

I want to lose weight because of vanity reasons LOL but I also have

200+ pounds to lose.

Amy Lynn, welcome to the group! You'll find a bunch of supportive

people here. We really want you to reach your goal and then stay to

support others like yourself. What program do you have planned? What

exercise program do you have planned? How are you going to begin to

like what you can see in the mirror?

Just some starting points for your journey.

Blessings

440/437/140