new member

[Guest guest]

Welcome...

I wish the best of luck with your disability.

I have found that the Elavil I take for a good nights

sleep has really helped me as well as trying to go to

bed the same time as well as waking the same time

every day. Before, I would not pay attention to this,

but now, I do and it seems to help with the sleep.

a Faye

--- Darcy Stockstill catstamp@...> wrote:

> >

> >

> > Age range: 45

> >

> > Male/female: M

> >

> > What are the symptoms? Extreme fatique, pain from

> head to toe

> >

> > Has you illness been diagnosed? Diagnosed as

> having Fibromyalgia,

> Psoractic Arthritis and Osteoarthritis

> >

> > How long did you suffer before you got help? More

> years now that I

> look back, roughly 8-10 years

> >

> > Is there a time that you can remember when it

> started? When I moved

> from CA to CO for job promotion

> >

> > Some of us have found lack of exercise we are

> overweight.

> > Have you found this to be a problem also? YES

> >

> > Are you on disability? I am currently working

> with my insurance

> company and Social Security

> >

> > If you are any pointers for others trying to get

> on disability? Just

> be aware that Social Security will do everything in

> their power to deny

> you. Do not give up, keep fighting them and

> eventually you will win

> your benefits..

> >

> > What have you found that helps ease the pain, warm

> baths,

> > medications etc.? Warm, not hot epsom salt baths

> help a great deal,

> Advil, Ultracet (RX) positive thinking!

> >

> > Do you have sleep problems? How do you deal with

> it? I sleep less

> than 3 hours a night. The truth is that I have not

> been dealing with

> it. I am now taking Ambien and it helps.

> >

> > Do you have family that understands your illness?

> My family doesn't

> have a clue about this but my roommate is more like

> my caregiver now and

> he is with me every doctors appointments and such in

> case I forget to

> the doctor something and that I will mostly forget

> what the doctor told

> me during the visit. My roommate logs everything

> down.

> >

> > Some have found certain foods causes problems with

> CFS or

> > Fibro, have you? I have noticed this too, but I

> cannot pin point

> which ones they are!

> >

> > What type of Doctor have you found that has helped

> you the most? A

> combination of a rheumatologist and orthopedic.

> They share the same

> office and they rotate me between the two doctors.

> >

>

__________________________________________________

[Guest guest]

In a message dated 08/27/2002 3:11:47 PM US Eastern Standard Time,

catstamp@... writes:

> I've seen people complain about fluoride in the water

Darcy,

Interesting that you say this....I just watched a thing on the news

the other night where our local news channel was doing a " consumer report " if

you will...on botteled water...and 3/4 of all the botteled water companys are

now starting to put fluoride in their water and it is causing people to get

ill. Not sure with what...or what the symptoms are, but they gave all the

names of the water that had fluoride in it and the ones that didn't and out

of all the popular waters that are on the market only 3 of them didn't have

any additives and was " PURE " and I was glad and actually proud of myself that

I chose the right kind of water...lol I actually drink the " PURE

STUFF " ....lol

Allicia

[Guest guest]

rge072754 wrote:

>

> My name is rge and I need your help! I need an attorney to take this

> to court. A win would set a precident and more people could collect

> damages for personal injury due to fluoride. Soon insurance

> companies would not insure the city/water authority and fluorodation

> will end. (one alternative)

I'm not sure that one doctor's testing will stand up in court. I think

you'd probably have to have at least one large scale testing in order to

help you. I've seen people complain about fluoride in the water before,

but I'm not sure any of them are on this group. Good luck with your

suit.

Darcy

[Guest guest]

Allicia21@... wrote:

> Interesting that you say this....I just watched a thing on the news

> the other night where our local news channel was doing a " consumer report " if

> you will...on botteled water...and 3/4 of all the botteled water companys are

> now starting to put fluoride in their water and it is causing people to get

> ill.

Fluoride in *bottle* water?!?! What kind of junk is that? The whole

idea of putting it in home water was to help protect kids teeth, why do

they need even more in the bottled water they drink? I'm sure as the

original poster pointed out, there is an upper limit to the amount of

fluoride you should be drinking. I guess since you picked the pure

water, we'll just have to make you the official group " water picker " .

You can come shopping with us, sniff the bottles and tell us which ones

to buy!

Darcy

[Guest guest]

bailball wrote:

>

> My family doesn't really

> know or understand this disease. I would like to know if anyone could

> tell me how they deal with the fatigue and how to explain to my family

> what is wrong where they will understand it without sounding like I am

> whinning all the time.

Tammy, have you seen the " letter to Normals " to show to your family? If

not, I'm sure one of us can dig it up for you.

Darcy

[Guest guest]

bailball wrote:

>

> My family doesn't really

> know or understand this disease. I would like to know if anyone could

> tell me how they deal with the fatigue and how to explain to my family

> what is wrong where they will understand it without sounding like I am

> whinning all the time.

Tammy, have you seen the " letter to Normals " to show to your family? If

not, I'm sure one of us can dig it up for you.

Darcy

[Guest guest]

Many Ways to Skin a Thyroid

Simon

I have cancelled my RAI treatment and am taking a whole year off of stress to

devote time to myself - as of a few days ago... I am going to have a girly

and pink year ie FUN! with lipstick and perfume and silk and any other restful

frippery that takes my fancy..

I am without my garden of burgeoning roses and perfumed flowers - at the

moment - having sold my house to invest in rental properties - and I need living

things around me Ihave found - so have decided to take some Flower Remedies

daily - to gift myself some essence of blooms

also I have simply given up ALL of my carbimozole and proponal - and all

supplements - about 3 days ago. At first by the time late evening came each day

- I felt my neck (thyroid area) heaving with a sort of radient pain - like

sunburn without the heat - but this has largely GONE ....is very very small

tonight.

I've begun doing Carol Maggio's facercizer exercises and Eva frazers too - the

video etcs and Carol shows a couple of neck exercises. Funnily enough having

started those too about 3 days ago I wonder if this strengthening of the neck

muscles doesn't somehow both massage and CONTAIN a certain amount of the small

but definite swelling I have in the thyroid gland?...if this is so I reckon that

- like a corset squeezes the fat of the 'middle bits' of one's torso and

displaces the swelling to 'another place' I am seriously wondering > whether

it may not have a similar effect on a swollen gland? ie soothes and displaces

the swelling and therefore expresses and 'relieves' the over producing nodules -

to a reasonable degree in the underlying - swollen conditon?

You'll tell I am nothing if not persistant in trying new ways of looking at

this condition of mine

At the moment I have beautiful violin adagios swirling around the walls of my

room and I feel like dancing - it is truly a release to release MYSELF from this

straight-jacket of Other People's Ideas of what is a disease and what follows

therefore as a treatment....and my own expectation of waiting for THEIR

judgements...thereto

I expect my thyroid to obey my mood from now on...I will bet I am not going to

be disappointed

NO worries about T this or T that for me - just how much life can I enjoy in

one mouthful - today

Velvet - dancing in delight - as my hair is also beginning - just beginning to

start to grow thicker again...

www.velvetsjournal.com

Re: New member

-----BEGIN PGP SIGNED MESSAGE-----

Hash: SHA1

Velvet wrote:

> Louise L Hay wrote You Can Heal Your Life - see Amazon etcs

>

>

> apparantly Louise L Hay couples the Thyroid to blocks in

creativity - to

> holding back etcs..to denying self expression....does that

ring a bell with

> any of YOU? Have YOU been blocking your natural personality

for years?

Hi Velvet,

all the women in my mothers family must have been blocked as well.

I'm pretty sure this is a biological thing, probably you're born

with a propensity, and something triggers it - possibly viral or

bacterial infections.

The is a murine model which is quite successful (?) in inducing

a Graves' like condition in (specific types of) mice using an

adenovirus which presents TSH receptor like structures.

[Guest guest]

Many Ways to Skin a Thyroid

Simon

I have cancelled my RAI treatment and am taking a whole year off of stress to

devote time to myself - as of a few days ago... I am going to have a girly

and pink year ie FUN! with lipstick and perfume and silk and any other restful

frippery that takes my fancy..

I am without my garden of burgeoning roses and perfumed flowers - at the

moment - having sold my house to invest in rental properties - and I need living

things around me Ihave found - so have decided to take some Flower Remedies

daily - to gift myself some essence of blooms

also I have simply given up ALL of my carbimozole and proponal - and all

supplements - about 3 days ago. At first by the time late evening came each day

- I felt my neck (thyroid area) heaving with a sort of radient pain - like

sunburn without the heat - but this has largely GONE ....is very very small

tonight.

I've begun doing Carol Maggio's facercizer exercises and Eva frazers too - the

video etcs and Carol shows a couple of neck exercises. Funnily enough having

started those too about 3 days ago I wonder if this strengthening of the neck

muscles doesn't somehow both massage and CONTAIN a certain amount of the small

but definite swelling I have in the thyroid gland?...if this is so I reckon that

- like a corset squeezes the fat of the 'middle bits' of one's torso and

displaces the swelling to 'another place' I am seriously wondering > whether

it may not have a similar effect on a swollen gland? ie soothes and displaces

the swelling and therefore expresses and 'relieves' the over producing nodules -

to a reasonable degree in the underlying - swollen conditon?

You'll tell I am nothing if not persistant in trying new ways of looking at

this condition of mine

At the moment I have beautiful violin adagios swirling around the walls of my

room and I feel like dancing - it is truly a release to release MYSELF from this

straight-jacket of Other People's Ideas of what is a disease and what follows

therefore as a treatment....and my own expectation of waiting for THEIR

judgements...thereto

I expect my thyroid to obey my mood from now on...I will bet I am not going to

be disappointed

NO worries about T this or T that for me - just how much life can I enjoy in

one mouthful - today

Velvet - dancing in delight - as my hair is also beginning - just beginning to

start to grow thicker again...

www.velvetsjournal.com

Re: New member

-----BEGIN PGP SIGNED MESSAGE-----

Hash: SHA1

Velvet wrote:

> Louise L Hay wrote You Can Heal Your Life - see Amazon etcs

>

>

> apparantly Louise L Hay couples the Thyroid to blocks in

creativity - to

> holding back etcs..to denying self expression....does that

ring a bell with

> any of YOU? Have YOU been blocking your natural personality

for years?

Hi Velvet,

all the women in my mothers family must have been blocked as well.

I'm pretty sure this is a biological thing, probably you're born

with a propensity, and something triggers it - possibly viral or

bacterial infections.

The is a murine model which is quite successful (?) in inducing

a Graves' like condition in (specific types of) mice using an

adenovirus which presents TSH receptor like structures.

[Guest guest]

Hi ,

I was just diagnosed also. This list is great for learning about this

disease. Welcome!

Pat

[Guest guest]

Hi ,

I was just diagnosed also. This list is great for learning about this

disease. Welcome!

Pat

[Guest guest]

Hi , welcome to the board - this is a good place to learn about all

your options and what is going on with you.

You may want to start with this letter to the newly diagnosed:

http://www.webmosiacs.com/thyroid/letter.htm - maybe even print it out and

show your doc if he's so new at this.

Hope that helps

Pam B.

http://www.webmosaics.com/thyroid/

[Guest guest]

Hi , welcome to the board - this is a good place to learn about all

your options and what is going on with you.

You may want to start with this letter to the newly diagnosed:

http://www.webmosiacs.com/thyroid/letter.htm - maybe even print it out and

show your doc if he's so new at this.

Hope that helps

Pam B.

http://www.webmosaics.com/thyroid/

[Guest guest]

Hello

I just wanted to say that you've come to the right place for information - this

board has loads of great people on it who know all sorts of stuff and are

extremely helpful.

I know it's overwhelming at the start - it does take a little while just to get

used to the fact that there's something going on with your body that you never

it permission to do - but just keep coming her and reading and asking questions

and gradually you'll get a picture of how to help yourself and that will empower

you.

Take care,

new member

Hello,

My name is and I live on the west coast of BC in Canada. I was

diagnosed yesterday and feel somewhat overwhelmed by it. My first question

is when I see my Dr again next week should I ask to see a specialist or let

him treat me for now? He has never treated anyone with Graves' and was

going to do a little research in the meantime.

I haven't started any treatment yet, thats next week. I don't even know

where to start!

overwhelmed in BC

[Guest guest]

Hello

I just wanted to say that you've come to the right place for information - this

board has loads of great people on it who know all sorts of stuff and are

extremely helpful.

I know it's overwhelming at the start - it does take a little while just to get

used to the fact that there's something going on with your body that you never

it permission to do - but just keep coming her and reading and asking questions

and gradually you'll get a picture of how to help yourself and that will empower

you.

Take care,

new member

Hello,

My name is and I live on the west coast of BC in Canada. I was

diagnosed yesterday and feel somewhat overwhelmed by it. My first question

is when I see my Dr again next week should I ask to see a specialist or let

him treat me for now? He has never treated anyone with Graves' and was

going to do a little research in the meantime.

I haven't started any treatment yet, thats next week. I don't even know

where to start!

overwhelmed in BC

[Guest guest]

Irvine wrote:

>

> My name is and I live on the west coast of BC in Canada. I was

> diagnosed yesterday and feel somewhat overwhelmed by it. My first question

> is when I see my Dr again next week should I ask to see a specialist or let

> him treat me for now? He has never treated anyone with Graves' and was

> going to do a little research in the meantime.

Hi ,

the recommendation in the UK is that all patients with hyperthyroidism

and/or Graves' should see a specialist.

Certainly if your doctor has never treated anyone with Graves' before

then you should see a specialist, and agree (or at least try to agree

;-) a treatment plan with that specialist.

Your doctor may be the person who monitors you, and prescribes the

treatment but you should see a specialist for assessment. If your doctor

is honest enough to tell you you are his first, and interested enough to

do some research, he sounds a lot more promising than those that think

they already know everything.

The methimazole based drugs (e.g. Tapazole, Carbimazole) can be

prescribed for hyperthyroidism if you have to wait to see a specialist,

they are suitable for all common forms of hyperthyroidism (so are

usually fine even if the diagnosis is wrong).

Typically, here, Carbimazole will be presribed on diagnosis of

hyperthyroidism, even if the specialist appointment isn't that far away,

as it doesn't restrict your treatment options, so you don't gain

anything by waiting.

The site www.thyroidmanager.org is a solid reference work on most

thyroid conditions, and the authors will answer any questions your

doctor may have (by email). Some here feel their advice regarding RAI

treatment for Graves' is still too cavalier, but your doctor could be

reading less uptodate reference works....

The Yahoo group site has some advice to the newly diagnosed.

I guess it is a bit daunting to have something your doctor hasn't

treated, I was just grateful for a diagnosis as it explained so much of

what was going wrong with my body, and in my life.

Simon

[Guest guest]

Irvine wrote:

>

> My name is and I live on the west coast of BC in Canada. I was

> diagnosed yesterday and feel somewhat overwhelmed by it. My first question

> is when I see my Dr again next week should I ask to see a specialist or let

> him treat me for now? He has never treated anyone with Graves' and was

> going to do a little research in the meantime.

Hi ,

the recommendation in the UK is that all patients with hyperthyroidism

and/or Graves' should see a specialist.

Certainly if your doctor has never treated anyone with Graves' before

then you should see a specialist, and agree (or at least try to agree

;-) a treatment plan with that specialist.

Your doctor may be the person who monitors you, and prescribes the

treatment but you should see a specialist for assessment. If your doctor

is honest enough to tell you you are his first, and interested enough to

do some research, he sounds a lot more promising than those that think

they already know everything.

The methimazole based drugs (e.g. Tapazole, Carbimazole) can be

prescribed for hyperthyroidism if you have to wait to see a specialist,

they are suitable for all common forms of hyperthyroidism (so are

usually fine even if the diagnosis is wrong).

Typically, here, Carbimazole will be presribed on diagnosis of

hyperthyroidism, even if the specialist appointment isn't that far away,

as it doesn't restrict your treatment options, so you don't gain

anything by waiting.

The site www.thyroidmanager.org is a solid reference work on most

thyroid conditions, and the authors will answer any questions your

doctor may have (by email). Some here feel their advice regarding RAI

treatment for Graves' is still too cavalier, but your doctor could be

reading less uptodate reference works....

The Yahoo group site has some advice to the newly diagnosed.

I guess it is a bit daunting to have something your doctor hasn't

treated, I was just grateful for a diagnosis as it explained so much of

what was going wrong with my body, and in my life.

Simon

[Guest guest]

Hi Pat,

Nice to 'E' meet you :-)

BC Canada

---------------------------------------

Hi ,

I was just diagnosed also. This list is great for learning about this

disease. Welcome!

Pat

[Guest guest]

Hi Pat,

Nice to 'E' meet you :-)

BC Canada

---------------------------------------

Hi ,

I was just diagnosed also. This list is great for learning about this

disease. Welcome!

Pat

[Guest guest]

Hello Pam,

Thanks for the link to ths site with the letter. I have it book marked so

I can go back and read through it all when I have more time. (I'm heading

off for 4 days for a spring break trip with my kids)

BC Canada

----------------------------------------------

Hi , welcome to the board - this is a good place to learn about all

your options and what is going on with you.

You may want to start with this letter to the newly diagnosed:

http://www.webmosiacs.com/thyroid/letter.htm - maybe even print it out and

show your doc if he's so new at this.

Hope that helps

Pam B.

http://www.webmosaics.com/thyroid/

[Guest guest]

,

Thanks for the kind words. This list seems like a great place for support

and information.

The funny thing as far as symptoms go is I never felt I had any. I had

some routine blood work done and it showed I was hyperthyroid. Because I

am a bit overwieght my Dr thought it was a lab error. We redid it and I

was still the same. I have been having some eye/vision problems and he

thinks my eyes don't look quite right either so I am seeing my eye Dr first

thing next Monday. I have also had a thyroid scan (the iodine uptake one)

and it did show an enlarged and overactive thyroid.

BC Canada

------------------------------------------------------------

Hello

I just wanted to say that you've come to the right place for information -

this board has loads of great people on it who know all sorts of stuff and

are extremely helpful.

I know it's overwhelming at the start - it does take a little while just to

get used to the fact that there's something going on with your body that

you never it permission to do - but just keep coming her and reading and

asking questions and gradually you'll get a picture of how to help yourself

and that will empower you.

Take care,

[Guest guest]

,

Thanks for the kind words. This list seems like a great place for support

and information.

The funny thing as far as symptoms go is I never felt I had any. I had

some routine blood work done and it showed I was hyperthyroid. Because I

am a bit overwieght my Dr thought it was a lab error. We redid it and I

was still the same. I have been having some eye/vision problems and he

thinks my eyes don't look quite right either so I am seeing my eye Dr first

thing next Monday. I have also had a thyroid scan (the iodine uptake one)

and it did show an enlarged and overactive thyroid.

BC Canada

------------------------------------------------------------

Hello

I just wanted to say that you've come to the right place for information -

this board has loads of great people on it who know all sorts of stuff and

are extremely helpful.

I know it's overwhelming at the start - it does take a little while just to

get used to the fact that there's something going on with your body that

you never it permission to do - but just keep coming her and reading and

asking questions and gradually you'll get a picture of how to help yourself

and that will empower you.

Take care,

[Guest guest]

i am new to the group and i have a question about finding a new neurologist

for my sister because her current doc dosent know anything about acm and he

tells her when she starts to get one of her headaches to take four motrin,

then in an hour if she still has the headache to take four more.i dont think

that is too good have any of you ever been told to do that? and if anyone

knows about a neurologist in the long island,NY area can you please e-mail me

at PSYCHOWITCH13@...

thanks

shauna

[Guest guest]

Hi,

I am assuming that JRA is Junior Rheumatoid Arthritis which I have not had

but some of your situation may apply to my experience. I went into the

Resurface situation with a hip that had been fused for 35 years and an early

history of extensive osteomylitis (infection of bone marrow). The fused hip

brought the issue of osteoporosis into the story as the bone loading on the

femur wasn't good and the femur was showing signs of osteoporosis pre op.

No doctor had ever remotely considered replacing my fused hip before this

due to the osteomylitis factor combined with dislocation - few muscles left

situation. Mine was a procedure rarely carried out anywhere as the OS had

to chip the fused hip apart. Apparently that isn't an easy thing to

do...........

Now to me the Resurface was an added bonus because it has less interference

with the bone and isn't playing with bone marrow to much extent - so reduced

the risks of infection. A different angle to yours re the immune system I

know, but a consideration about how much havoc is being wrought at the site

and therefore some benefits re picking up at least bone infections.

With better load on my femur the osteoporosis signs are disappearing

rapidly. You may not get that because the drugs may still beat you.

However I note that the femur cap in my situation has been placed much

further down the head than usual so I don't have a 'femur neck' any more. So

in reality I am more likely to crack my 'normal hip femur neck' at this

point than the Resurface one. This hasn't resulted in any leg difference and

may have been something that my OS was able to do because of the totally

fused situation......i.e. he had just one lump of bone to carve whatever he

cared into, rather than a defined cup section in the pelvis. But it may be

worth asking Dr. Gross about this for your situation.

The issue with having children after m/m hip prothesis comes up from time to

time - usually more on the Totallyhip list as there simply is more of them.

You may like to pose that question over there and see what answers pop

up........ I know women have had babies with no noticeable immediate

affect.......... but like a lot of these things it will come down to your

own personal risk taking situation after weighing up how things like even

the drugs you are taking may influence the baby's development. Thankfully I

am well passed the point of it being an issue but wish you all the best in

working it all out.

Edith LBHR Dr. L Walter Syd Aust 8/02

>

> I am a 35 yo female. I am scheduled for hip resurfacing surgery with

> Dr. Gross in early May.

>

> I love to ski, mountain bike, rock climb, etc. & I am choosing this

> option, because I want to return to that quality of life a.s.a.p.

> Honestly, I can't imagine life without being able to do these things.

>

> I have some anxieties, because I am a female, & a 'special case'.

>

> I have JRA & have been on steroids on & off since age 2. The doctors

> tell me that due to some osteoporosis, my risk of neck fracture is

> somewhat greater. They also tell me that I am at higher risk of

> infection, because I have been on medicines which supress my immune

> system for so long. I am currently down to 10mg of Prednisone & that

> is the lowest dose I can tolerate for now.

>

> I have decided that I want to take the risk for the resurfacing,

> because as I see it, the worst case scenario will be that this will

> be converted to a total hip if it doesn't work.

>

> My other concern is that I want to have children, & I have learned

> that the metal parts rubbing together release particles in the

> bloodstream. The doctors tell me there is just not enough research

> yet to determine how this may affect a fetus.

>

> If any of you have a similar situation or information that might help

> it would be grately appreciated. One of the things I most appreciate

> about this situation is how compassionate & helpful others have been.

>

> Thank you to everyone out there for being on line & sharing your

> experiences.

>

> steamboatskigirl

>

[Guest guest]

I can't say that we ever get tired of of posts like yours....

they are what this is all about. I am with you on the rollerblades -

mine are beckoning as we speak.

Steamboatskigirl: Most of us have been in your position and I don't

think there is anyone who has regretted their decision to go ahead -

the interesting thing for me is that in fact I had forgotten just how

much I used to be able to do - we keep making adjustments for the

hips. At almost 18 months post op I am still discovering some of the

stuff I used to be able to do and thought it was just because I was

getting older that I couldn't do it anymore - Hey I still can do most

of that stuff and the only question is when do I reach the end of my

capabilities. I continues to blow people away when I tell them I

have a metal hip... heck in continues to blow me away - but I am

loving every minute of it.

Best wishes,

Pamela

LBHR De Smet Oct/02

> Hi Steamboatskigirl,

>

> Initially thought I would send this reply to you privately. God Knows

> ...(Opps can't say that any more) ...A recurrent theme on the

surfacehippy group is:

> " Should I or should I not resurface given the fact I was told mine

is a more

> difficult case. " I literally agonized over this decision and had

some sleepless

> nights because of it. Sure others, besides yourself face this very

question

> today. My heart goes out to all of you.

>

> Heard and read many wonderful things about Dr Gross. Think you will

be in

> very confident hands. Believe I meet some of your criteria for being

a more

> difficult case. A prominent American Resurfacer said in Nov 03, " If

I were you, I

> would have a THR instead of a Resurfacing. " Said I face a

significant risk of

> femur fracture with advanced avascular necrosis and large cysts. Was

told by

> a few OS that my femur head was nearly entirely collapsed.

>

> Maybe I am a risk taker, probably more likely, though ...just want

to remain

> incredibly active like you. If the procedure should fail

prematurely, at least

> I can say I tried and went to whom I consider the very best surgeon.

Anyway,

> will probably not do the NYC marathon or sky dive again (only

because looking

> to try something different) Always wanted to hang glide and not

ready to sell

> my roller blades on e-bay any time soon (Smile) Anyway, if you might

not have

> come across my posting a few weeks back ...here it is again with an

email to

> Dr. De Smet. I am doing amazingly well at 8 weeks post op and am

very happy and

> with my decision.

>

> Yikes! ...Don't know what got into me ....but this is my third

posting today

> in this group. Hope you gals and guys are not tired of me already.

>

> K. (NYC)

>

>

>

> Dear Dr. De Smet,

>

> It is five weeks since my surgery date of Feb 3rd. Very happy to

report that

> I am progressing very well. Feel with every day decreasing

stiffness and more

> ROM.Â

>

> It is really quite wonderful, that it certainly appears that I will

fully

> regain my life back as I have once known it. Thank you very much for

> reconsidering my more difficult surgical case. I look back fondly on

the whole experience

> and will never will forget your kindness and that of your staff.

>

> Below is a posting I sent to the .com Surfacehippy

ListServ on

> February 25. Feel to quote me from anything I have written.

>

> Warmest Regards,

> K.

>

>

> My Belgium Experience (Feb 3rd, 2004)

>

> How many breakfast buffets can one eat? …This Belgium surfacehippy

(Feb 3rd)

> finally went home last week. I, too, have the highest regard for Dr.

Koen De

> Smet. Could not have asked for a more skilled, caring and

dedicated surgeon.Â

> The phrase, a " well oiled machine, " many times mentioned, aptly

describes the

> whole Belgium experience …  If it's 10:15am…. Having physical

therapy with

> Marc.

>

> Was originally denied by Dr. De Smet in the Fall 2003, as having

" Crossed the

> line " with advanced Avascular Necrosis and cysts. He later

reconsidered,

> upon my pleading (smile). He would only acknowledge that a

resurfacing, " May be

> possible. " Â

>

> He custom made my BHR by turning it upside, poured in cement and set it

> aside. He said the additional cement would harden and add to the

thickness of the

> metal prosthesis. Said in countries where AVN is more widespread

(due to

> excessive alcohol consumption) the prosthesis have more metal in

them. The disease

> has progressed so much over the months it has become difficult to

walk without

> nearly toppling over.

>

> I arrived in Gent with my industrial strength, stainless steel elbow

> crutches. Was chided with the name, " Tiny Tim, " as it outwardly

appeared that I was

> stricken with some highly irreversible degenerative disorder. Hoped

it was not

> too late for Dr. De Smet to be able to perform his magic upon me.

>

> Already resigned myself to the fact that I may likely wake up in the

recovery

> room with a THR. My last conscious moment, before the surgery, was

being told

> that we are going to see the anesthetist. Woke up in recovery, with

immense

> soreness at my operated side. Â Â Â Asked the attending nurse, if

received a

> resurfacing procedure. She responded, " You better ask Dr. De

Smet. " … (Yikes, I

> thought, … not a good sign.) Later that day, Dr. De Smet walked in

my hospital

> room and broke the news. Said my bone was soft and had much to

remove to get to

> something solid, but I did indeed get a resurfacing. He said

soberly, " Nine

> out of ten surgeons would have performed a THR on me. " Â Â

>

> He instructed me to remain on crutches for six weeks. (A rarity, for

him, I

> hear.) I have no problem with that. This is what surgeons advise in

America,

> anyway.  Donated my industrial strength crutches to the hotel for

someone who

> may need then more than me. Purchased from Marc, cool, easy to

manage, elbow

> crutches that look more like ski poles.

>

> Seven days post-op we toured Paris. Saw the Eiffel Tower and Notre Dame

> Cathedral and had a wonderful dinner. (Hi, Mike and !)Â

Remarkably, I cannot

> distinguish any leg length discrepancy. Hard to recall when both

legs touched

> the ground simultaneously (smile).

>

> Dr. De Smet said the next six months are critical with an increased

risk of

> fracture. Advised to refrain from lower body exercises during this

time. Am in

> no rush to head to my gym anytime soon. Otherwise, he said, after

six months,

> the femur bone under the cap should continue to strengthen, as in

the case

> with other surfacehippies. He said while he does not personally

recommend it, I

> could get a Dexa Scan of my hip upon arrival in America and repeat the

> procedure six months later. He said the scan would show that my

femur bone became a

> whole lot stronger. Realizing that I am a gym rat, I think Dr. De

Smet wanted

> to put my mind at ease. The kind doctor listens carefully to his

patients.Â

>

> I will keep you informed of my progress. Yesterday, I removed my

bandage and

> visited my physician who checked the incision. He was amazed how

incredibly

> careful it was stitched and how quickly it was healing. He was

amazed too, how

> well and active I appeared so soon after undergoing major surgery. I

left his

> office feeling like a medical marvel and a truly lucky man. Already

sensing a

> taste a spring in the air after a rather harsh winter, I felt

brighter, warmer

> and happier days lie ahead. Thank You, Dr. Koen De Smet!

>

> Kavaliauskas  r/BHR De Smet  Feb 3rd, 04

>

> Hello friends -

>

> I am a 35 yo female. I am scheduled for hip resurfacing surgery with

> Dr. Gross in early May.Â

>

> I love to ski, mountain bike, rock climb, etc. & I am choosing this

> option, because I want to return to that quality of life a.s.a.p.Â

> Honestly, I can't imagine life without being able to do these things.

>

> I have some anxieties, because I am a female, & a 'special case'.

>

> I have JRA & have been on steroids on & off since age 2. The doctors

> tell me that due to some osteoporosis, my risk of neck fracture is

> somewhat greater. They also tell me that I am at higher risk of

> infection, because I have been on medicines which supress my immune

> system for so long. I am currently down to 10mg of Prednisone & that

> is the lowest dose I can tolerate for now.

>

> I have decided that I want to take the risk for the resurfacing,

> because as I see it, the worst case scenario will be that this will

> be converted to a total hip if it doesn't work.

>

> My other concern is that I want to have children, & I have learned

> that the metal parts rubbing together release particles in the

> bloodstream. The doctors tell me there is just not enough research

> yet to determine how this may affect a fetus.

>

> If any of you have a similar situation or information that might help

> it would be grately appreciated. One of the things I most appreciate

> about this situation is how compassionate & helpful others have been.

>

> Thank you to everyone out there for being on line & sharing your

> experiences.

>

> steamboatskigirl

>

>

>

>

>

[Guest guest]

I just read the post about " forgetting the things we used to be able to do. "

Boy, does that sum it up! Yeah, here I am at 55 years of age, thinking that

there were things that I just couldn't do anymore because of my age. Baloney!!

I just kept adjusting and adjusting and passing things up because I knew the

pain would be too bad. I remember making a list of errands I needed to do,

getting in my car and driving to town -- and then not doing half of the things

on the list because it was just too difficult to get out of my car and walk to

the store and then get back in my car. My " life " was shrinking. Knowing I had

to do SOMETHING (surgery) was like being caught between the devil and the deep

blue sea. Until I hit this message board and started reading the stories people

told. I'd read about resurfacing (Internet), but the local surgeon was

contemptuously dismissive. For once I decided that I was going to do the best I

could do for myself! And I contacted Dr Gross's office. Now, 8-9 weeks

post-op, I am astonished at the difference in my quality of life. And I'm not

even totally healed yet! I'm no great athlete, not even a " real " hiker, or

swimmer, or cyclist, or any of those things. But I AM and always have been a

very physically active person. The more unself-conscious I am of my body, the

healthier I am. The more unself-conscious my movement, the healthier I am.

This resurfacing procedure is a miracle... Joyce (Dr Gross, LHR, 2/2/04)