Re: I've been invited to speak at a conference!

[Guest guest]

Hi Pamela

I can add something for 'what do patients need to know':-

I would have liked to have had a more formal idea of what to do if I had

real problems with mobility - who to call, would the GP do, or should I

contact the surgeon or the ward I was on?

I would have liked some idea of what the common problems might be, and hints

on how to deal with them - shin pain, calf pain, and that awful ace bandage

effect.

Also if after everything had started going right at last, what to do if the

shin and calf pain come back after weeks of not having them at all. Simply

being told to keep on taking exercise by the GP I saw, when I had told him

that I didnt know which exercises might help and which would make it worse,

really didnt help at all. I have no trouble walking or standing, but sitting

really does cause me a lot of pain at the moment! (Have now got an

appointment with the surgeon in a month's time).

'How could the patient pathway from diagnosis to recovery be improved.'

Easier access to advice - perhaps a helpline where any concerns could be

raised? Maybe a support website where such advice could be displayed? At

the moment all I've managed to find so far is just the usual* which doesnt

address anything to do with ongoing pain - I'd like to know what is normal

at each stage of recovery, and what is not.

*http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

Good luck with your presentation - but from the sound of it you'll be fine!

Lin

Wiltshire uk

Hi

I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the

patient pathway

The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger

patient community and I'd rather gather up ideas from fellow patients and

share those with them

The audience will be surgeons and orthpaedic nurses so an important group to

get through to

The questions I have been asked to talk on are

1. What do patients need to know (I'd say want to know as well)

2. How could the patient pathway from diagnosis to recovery be improved.

I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

Any help much appreciated

Thanks

Pamela

ps the conference is in London in September

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

[Guest guest]

Congratulations Pamela! What a huge opportunity!

I think you should list an outline of the items you would like to cover then we

can fill in the blanks and add to it what we felt was also important.

You're only given a little spark of madness. You mustn't lose it.

Joint Replacement

From: pamela@...

Date: Wed, 25 May 2011 16:39:06 +0000

Subject: I've been invited to speak at a conference!

Hi

I'm totally shocked but I got phoned up by a conference organiser asking if I'd

speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

The idea was for me to talk about my experience of being a patient but I said

that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

The audience will be surgeons and orthpaedic nurses so an important group to get

through to

The questions I have been asked to talk on are

1. What do patients need to know (I'd say want to know as well)

2. How could the patient pathway from diagnosis to recovery be improved.

I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

Any help much appreciated

Thanks

Pamela

ps the conference is in London in September

[Guest guest]

Lin I think you are asking about knee replacement info and Pamela is doing a

talk in hip replacement.

You're only given a little spark of madness. You mustn't lose it.

Joint Replacement

From: tinopener@...

Date: Wed, 25 May 2011 18:48:33 +0100

Subject: Re: I've been invited to speak at a

conference!

Hi Pamela

I can add something for 'what do patients need to know':-

I would have liked to have had a more formal idea of what to do if I had

real problems with mobility - who to call, would the GP do, or should I

contact the surgeon or the ward I was on?

I would have liked some idea of what the common problems might be, and hints

on how to deal with them - shin pain, calf pain, and that awful ace bandage

effect.

Also if after everything had started going right at last, what to do if the

shin and calf pain come back after weeks of not having them at all. Simply

being told to keep on taking exercise by the GP I saw, when I had told him

that I didnt know which exercises might help and which would make it worse,

really didnt help at all. I have no trouble walking or standing, but sitting

really does cause me a lot of pain at the moment! (Have now got an

appointment with the surgeon in a month's time).

'How could the patient pathway from diagnosis to recovery be improved.'

Easier access to advice - perhaps a helpline where any concerns could be

raised? Maybe a support website where such advice could be displayed? At

the moment all I've managed to find so far is just the usual* which doesnt

address anything to do with ongoing pain - I'd like to know what is normal

at each stage of recovery, and what is not.

*http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

Good luck with your presentation - but from the sound of it you'll be fine!

Lin

Wiltshire uk

Hi

I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the

patient pathway

The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger

patient community and I'd rather gather up ideas from fellow patients and

share those with them

The audience will be surgeons and orthpaedic nurses so an important group to

get through to

The questions I have been asked to talk on are

1. What do patients need to know (I'd say want to know as well)

2. How could the patient pathway from diagnosis to recovery be improved.

I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

Any help much appreciated

Thanks

Pamela

ps the conference is in London in September

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

[Guest guest]

oh boy do I agree with you. My surgeon was brilliant and would answer

any question I wanted. If he knew I had a question he'd call me but I

could never get to his PA - not passed her I mean her phone was always

on voice mail and she never returned a call - though of course she

insisted she returned everyone

I found I'd ask a question, get given a good answer and leave and then

find a whole host of following on questions.

That was really why I started my site.

I can't say I've addressed ongoing pain there yet but one day - when

I've sorted the exercise pages I will

Thanks so much for your input.

Pamela

On 25/05/2011 18:48, Tinopener wrote:

>

> Hi Pamela

>

> I can add something for 'what do patients need to know':-

>

> I would have liked to have had a more formal idea of what to do if I had

> real problems with mobility - who to call, would the GP do, or should I

> contact the surgeon or the ward I was on?

>

> I would have liked some idea of what the common problems might be, and

> hints

> on how to deal with them - shin pain, calf pain, and that awful ace

> bandage

> effect.

>

> Also if after everything had started going right at last, what to do

> if the

> shin and calf pain come back after weeks of not having them at all.

> Simply

> being told to keep on taking exercise by the GP I saw, when I had told

> him

> that I didnt know which exercises might help and which would make it

> worse,

> really didnt help at all. I have no trouble walking or standing, but

> sitting

> really does cause me a lot of pain at the moment! (Have now got an

> appointment with the surgeon in a month's time).

>

> 'How could the patient pathway from diagnosis to recovery be improved.'

>

> Easier access to advice - perhaps a helpline where any concerns could be

> raised? Maybe a support website where such advice could be displayed? At

> the moment all I've managed to find so far is just the usual* which

> doesnt

> address anything to do with ongoing pain - I'd like to know what is

> normal

> at each stage of recovery, and what is not.

> *http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

>

> Good luck with your presentation - but from the sound of it you'll be

> fine!

>

> Lin

> Wiltshire uk

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser

> asking if

> I'd speak at the 2nd Annual conference on hip replacement:improving the

> patient pathway

>

> The idea was for me to talk about my experience of being a patient but I

> said that my individual experience probably doesn't reflect the larger

> patient community and I'd rather gather up ideas from fellow patients and

> share those with them

>

> The audience will be surgeons and orthpaedic nurses so an important

> group to

> get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I

> really don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

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

>

>

[Guest guest]

I think the same issues are there though don't you?

On 25/05/2011 19:42, RENEE WEAL wrote:

> Lin I think you are asking about knee replacement info and Pamela is doing a

talk in hip replacement.

>

>

>

> You're only given a little spark of madness. You mustn't lose it.

>

>

>

>

>

>

> Joint Replacement

> From: tinopener@...

> Date: Wed, 25 May 2011 18:48:33 +0100

> Subject: Re: I've been invited to speak at a

conference!

>

>

>

>

>

>

> Hi Pamela

>

> I can add something for 'what do patients need to know':-

>

> I would have liked to have had a more formal idea of what to do if I had

> real problems with mobility - who to call, would the GP do, or should I

> contact the surgeon or the ward I was on?

>

> I would have liked some idea of what the common problems might be, and hints

> on how to deal with them - shin pain, calf pain, and that awful ace bandage

> effect.

>

> Also if after everything had started going right at last, what to do if the

> shin and calf pain come back after weeks of not having them at all. Simply

> being told to keep on taking exercise by the GP I saw, when I had told him

> that I didnt know which exercises might help and which would make it worse,

> really didnt help at all. I have no trouble walking or standing, but sitting

> really does cause me a lot of pain at the moment! (Have now got an

> appointment with the surgeon in a month's time).

>

> 'How could the patient pathway from diagnosis to recovery be improved.'

>

> Easier access to advice - perhaps a helpline where any concerns could be

> raised? Maybe a support website where such advice could be displayed? At

> the moment all I've managed to find so far is just the usual* which doesnt

> address anything to do with ongoing pain - I'd like to know what is normal

> at each stage of recovery, and what is not.

> *http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

>

> Good luck with your presentation - but from the sound of it you'll be fine!

>

> Lin

> Wiltshire uk

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

> I'd speak at the 2nd Annual conference on hip replacement:improving the

> patient pathway

>

> The idea was for me to talk about my experience of being a patient but I

> said that my individual experience probably doesn't reflect the larger

> patient community and I'd rather gather up ideas from fellow patients and

> share those with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

> get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I

> really don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

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

>

>

[Guest guest]

I was thinking of leaving it totally open at the moment as I don't want

to cramp anyone's ideas - not likely in this lively group i know

Pamela

On 25/05/2011 19:40, RENEE WEAL wrote:

> Congratulations Pamela! What a huge opportunity!

> I think you should list an outline of the items you would like to cover then

we can fill in the blanks and add to it what we felt was also important.

>

>

>

> You're only given a little spark of madness. You mustn't lose it.

>

>

>

>

>

>

> Joint Replacement

> From: pamela@...

> Date: Wed, 25 May 2011 16:39:06 +0000

> Subject: I've been invited to speak at a conference!

>

>

>

>

>

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

>

> The idea was for me to talk about my experience of being a patient but I said

that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

>

>

>

>

>

[Guest guest]

Pamela,

I hope it is OK if I add my little 2 cents worth here. I am not a hip

replacement patient, I had knee replacements, but isn't the kind of info we want

to be able to access generally all the same? I received a very large joint

replacement guide book from the knee and hip replacement unit at the hospital I

went to. It includes all kinds of good information such as about the surgery in

general, preoperative checklists (a schedule of what needs to be done beforehand

and when) what to expect in the hospital, postoperative care, exercises and who

to contact if you have questions. We were also required to attend a class

conducted by a liaison. He has done these classes for many years and he

discusses and shows you the hip and knee replacements and you can handle them,

ask questions, ask questions about how things are going to be done in the

hospital, physical therapy questions etc. And, on the day of surgery he is

there to again, answering questions for family members or even going to the

recovery room to get information for them as to your progress. It was very

comprehensive. Also, I was introduced to a nurse in the doctors office to whom

we could direct any question before or after the surgery and if she did not have

an answer for us, she would get an answer from the doctor and call you back. I

called her for things like getting the Rx for premedicating before dental

appointments and things such as that. I felt like they did a very good job at

educating their patients before and after surgery. It was a big deal to me to

have two knees operated on at the same time, but I actually felt very informed

and very confident in everyone who was going to attend to my needs. I guess you

could say that having all that knowledge beforehand put my mind at ease. I

don't know if this information is what you are looking for, but that was what

impressed me most during my surgery and recovery.

I think it is a great opportunity that you are going to have to help hip

replacement patients.

Pat in Pennsylvania

Bilateral TKR August 2020

I've been invited to speak at a

conference!

>

>

>

>

>

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

>

> The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

>

>

>

>

>

[Guest guest]

Oh drat! Sorry about that.

Lin

Lin I think you are asking about knee replacement info and Pamela is doing a

talk in hip replacement.

You're only given a little spark of madness. You mustn't lose it.

Joint Replacement

From: tinopener@...

Date: Wed, 25 May 2011 18:48:33 +0100

Subject: Re: I've been invited to speak at a

conference!

Hi Pamela

I can add something for 'what do patients need to know':-

I would have liked to have had a more formal idea of what to do if I had

real problems with mobility - who to call, would the GP do, or should I

contact the surgeon or the ward I was on?

I would have liked some idea of what the common problems might be, and hints

on how to deal with them - shin pain, calf pain, and that awful ace bandage

effect.

Also if after everything had started going right at last, what to do if the

shin and calf pain come back after weeks of not having them at all. Simply

being told to keep on taking exercise by the GP I saw, when I had told him

that I didnt know which exercises might help and which would make it worse,

really didnt help at all. I have no trouble walking or standing, but sitting

really does cause me a lot of pain at the moment! (Have now got an

appointment with the surgeon in a month's time).

'How could the patient pathway from diagnosis to recovery be improved.'

Easier access to advice - perhaps a helpline where any concerns could be

raised? Maybe a support website where such advice could be displayed? At

the moment all I've managed to find so far is just the usual* which doesnt

address anything to do with ongoing pain - I'd like to know what is normal

at each stage of recovery, and what is not.

*http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

Good luck with your presentation - but from the sound of it you'll be fine!

Lin

Wiltshire uk

Hi

I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the

patient pathway

The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger

patient community and I'd rather gather up ideas from fellow patients and

share those with them

The audience will be surgeons and orthpaedic nurses so an important group to

get through to

The questions I have been asked to talk on are

1. What do patients need to know (I'd say want to know as well)

2. How could the patient pathway from diagnosis to recovery be improved.

I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

Any help much appreciated

Thanks

Pamela

ps the conference is in London in September

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

[Guest guest]

The point you made is just so appropriate. We need access to good quality

information at the time we realise we need it

Sent from my iPhone

On 25 May 2011, at 21:40, " Tinopener " <tinopener@...> wrote:

> Oh drat! Sorry about that.

>

> Lin

>

> Lin I think you are asking about knee replacement info and Pamela is doing a

> talk in hip replacement.

>

>

>

> You're only given a little spark of madness. You mustn't lose it.

>

> Joint Replacement

> From: tinopener@...

> Date: Wed, 25 May 2011 18:48:33 +0100

> Subject: Re: I've been invited to speak at a

> conference!

>

> Hi Pamela

>

> I can add something for 'what do patients need to know':-

>

> I would have liked to have had a more formal idea of what to do if I had

> real problems with mobility - who to call, would the GP do, or should I

> contact the surgeon or the ward I was on?

>

> I would have liked some idea of what the common problems might be, and hints

> on how to deal with them - shin pain, calf pain, and that awful ace bandage

> effect.

>

> Also if after everything had started going right at last, what to do if the

> shin and calf pain come back after weeks of not having them at all. Simply

> being told to keep on taking exercise by the GP I saw, when I had told him

> that I didnt know which exercises might help and which would make it worse,

> really didnt help at all. I have no trouble walking or standing, but sitting

> really does cause me a lot of pain at the moment! (Have now got an

> appointment with the surgeon in a month's time).

>

> 'How could the patient pathway from diagnosis to recovery be improved.'

>

> Easier access to advice - perhaps a helpline where any concerns could be

> raised? Maybe a support website where such advice could be displayed? At

> the moment all I've managed to find so far is just the usual* which doesnt

> address anything to do with ongoing pain - I'd like to know what is normal

> at each stage of recovery, and what is not.

> *http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

>

> Good luck with your presentation - but from the sound of it you'll be fine!

>

> Lin

> Wiltshire uk

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

> I'd speak at the 2nd Annual conference on hip replacement:improving the

> patient pathway

>

> The idea was for me to talk about my experience of being a patient but I

> said that my individual experience probably doesn't reflect the larger

> patient community and I'd rather gather up ideas from fellow patients and

> share those with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

> get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I

> really don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

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

>

>

[Guest guest]

General issues yes. My questions were always specific and specific to the

approach I had. Like now even, I've hit week eight and still in PT, but am not

sure if I am pushing myself too hard or not hard enough with exercise. As with

others, my doctor gave me an information paper that explained basically that I

have no limitations. Most of my questions were answered by my PT because I've

been with them three times a week.

You're only given a little spark of madness. You mustn't lose it.

Joint Replacement

From: pamela@...

Date: Wed, 25 May 2011 19:55:07 +0100

Subject: Re: I've been invited to speak at a

conference!

I think the same issues are there though don't you?

On 25/05/2011 19:42, RENEE WEAL wrote:

> Lin I think you are asking about knee replacement info and Pamela is doing a

talk in hip replacement.

>

>

>

> You're only given a little spark of madness. You mustn't lose it.

>

>

>

>

>

>

> Joint Replacement

> From: tinopener@...

> Date: Wed, 25 May 2011 18:48:33 +0100

> Subject: Re: I've been invited to speak at a

conference!

>

>

>

>

>

>

> Hi Pamela

>

> I can add something for 'what do patients need to know':-

>

> I would have liked to have had a more formal idea of what to do if I had

> real problems with mobility - who to call, would the GP do, or should I

> contact the surgeon or the ward I was on?

>

> I would have liked some idea of what the common problems might be, and hints

> on how to deal with them - shin pain, calf pain, and that awful ace bandage

> effect.

>

> Also if after everything had started going right at last, what to do if the

> shin and calf pain come back after weeks of not having them at all. Simply

> being told to keep on taking exercise by the GP I saw, when I had told him

> that I didnt know which exercises might help and which would make it worse,

> really didnt help at all. I have no trouble walking or standing, but sitting

> really does cause me a lot of pain at the moment! (Have now got an

> appointment with the surgeon in a month's time).

>

> 'How could the patient pathway from diagnosis to recovery be improved.'

>

> Easier access to advice - perhaps a helpline where any concerns could be

> raised? Maybe a support website where such advice could be displayed? At

> the moment all I've managed to find so far is just the usual* which doesnt

> address anything to do with ongoing pain - I'd like to know what is normal

> at each stage of recovery, and what is not.

> *http://www.nhs.uk/Conditions/Knee-replacement/Pages/Recovery.aspx

>

> Good luck with your presentation - but from the sound of it you'll be fine!

>

> Lin

> Wiltshire uk

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

> I'd speak at the 2nd Annual conference on hip replacement:improving the

> patient pathway

>

> The idea was for me to talk about my experience of being a patient but I

> said that my individual experience probably doesn't reflect the larger

> patient community and I'd rather gather up ideas from fellow patients and

> share those with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

> get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I

> really don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

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

>

>

[Guest guest]

Hello, I needed to know a complete overview of the process of the surgery, the

possible pain level, and the process of PT. I needed to know how long it would

be before I could go back to work. I needed more help and support with pain

management. I needed to know that I had to fight for the flexion and extension.

I went into this blindly. I had to go back to work in 3 weeks. Nobody, even my

PT, told me soon enough about what would happen if the PT didn't go well. (I

have 90-95 degrees flexion) I had no idea how painful it would be. I was never

out of pain and suffered with every PT session. Even if I had proper pain meds,

I couldn't take them because I was driving myself to PT by the 11th day.

Because of what I learned from my first TKR, for my second TKR, I am planning on

having home health and PT. I will also have 6 weeks off of work in the summer.

Another thing I learned was that more people need MUA during the winter. Because

I did my TKR before the coldest and wettest part of the year, I didn't feel like

moving as much as I should have. I know doctors want to do surgery all year

long, but I believe patients do better in warmer weather.

Another question I have for doctors, is how much does the state of all your soft

tissue effect the extension and flexion of the knee after TKR. I thoroughly

believe that because I limped for a couple years before the surgery, that the

tightness of my soft tissues contributed to my difficulty in flexion.

Sincerely, Devora

>

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

>

[Guest guest]

I would want these people to know the more they let patients know, the better.

Not less is better. I don't think they think telling us the truth is helpful.

The more I got prepared and learned, the less problems I had. And knowing we

are all going to experience some differences is also helpful.

Donna

I've been invited to speak at a conference!

Hi

I'm totally shocked but I got phoned up by a conference organiser asking if I'd

speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

The idea was for me to talk about my experience of being a patient but I said

that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

The audience will be surgeons and orthpaedic nurses so an important group to get

through to

The questions I have been asked to talk on are

1. What do patients need to know (I'd say want to know as well)

2. How could the patient pathway from diagnosis to recovery be improved.

I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

Any help much appreciated

Thanks

Pamela

ps the conference is in London in September

[Guest guest]

>

> Thanks for this Diva

> Which of the questions did you not know to ask about before hand? One of

> the points I'll be making is that we don't necessarily know what to ask at

> the time we're sat in front of the professional.

Now I feel foolish because I just trusted my doctor and all the people who had

successful TKR's from the same doctor. I didn't ask many questions because I

had heard only good things about minimally invasive Robotic-assisted TKR's. Dr

Coon of St Helena CA is a man of few words. When I mentioned to him

post-surgery that I should have had an overview of the process of recovery, he

replied that he didn't understand why I would need that. The people I spoke

with who had experienced the surgery had long since forgotten about the terrible

pain and the intense PT sessions; they just spoke glowingly of their experience.

I never met anybody who had any problems with their TKR until I came back for my

month check-up. There were several people in the office with infections and

severe problems with flexion and extension.

Dr. Coon seems to fear narcotic addiction and only prescribed Norcos and

tramadol. I could have used stronger pain meds for a short interval, just to be

able to handle my PT.

Also his website seems to have only success stories; why would they post stories

of possible problems?

I am still having my second TKR from the same doctor because he is an excellent

surgeon. However, I now know what I am getting into this time..

BTW, my MUA (manipulation under anesthesia) just made my recovery take longer.

Although he cracked my adhesions, they formed again quickly in spite of my best

efforts to keep my knee moving. I ended up with a pulled muscle in my calf and

temporary extension problems. The flexion went back to 90-95 degrees which it

was at before the MUA. Devora

[Guest guest]

Hi Donna

I guess it depends on the surgeon. Mine would answer any question. The problem

was I didn't know what to ask

Sent from my iPhone

On 28 May 2011, at 22:47, Donna Rae <rae900@...> wrote:

> I would want these people to know the more they let patients know, the better.

Not less is better. I don't think they think telling us the truth is helpful.

>

> The more I got prepared and learned, the less problems I had. And knowing we

are all going to experience some differences is also helpful.

>

> Donna

>

> I've been invited to speak at a conference!

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

>

> The idea was for me to talk about my experience of being a patient but I said

that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

>

[Guest guest]

Hi Pamela

>> The problem was I didn't know what to ask

Oh, how true!

Lin

[Guest guest]

Pamela,

I agree with you Pamela. I am saying the same thing you are saying. I truly

think my Surgeon thought the less I knew the better. He was also good about

answering anything I ask.

I was glad I read the book that was suggested here.

Donna R

I've been invited to speak at a conference!

>

> Hi

> I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

>

> The idea was for me to talk about my experience of being a patient but I said

that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

>

> The audience will be surgeons and orthpaedic nurses so an important group to

get through to

>

> The questions I have been asked to talk on are

> 1. What do patients need to know (I'd say want to know as well)

> 2. How could the patient pathway from diagnosis to recovery be improved.

>

> I'd really like to hear other people's ideas of what I should say as I really

don't just want to give them my opinion.

>

> Any help much appreciated

> Thanks

> Pamela

> ps the conference is in London in September

>

>

[Guest guest]

That was not my surgeons attitude at all

Sent from my iPhone

On 29 May 2011, at 12:53, Donna Rae <rae900@...> wrote:

> Pamela,

>

> I agree with you Pamela. I am saying the same thing you are saying. I truly

think my Surgeon thought the less I knew the better. He was also good about

answering anything I ask.

>

> I was glad I read the book that was suggested here.

>

> Donna R

>

> I've been invited to speak at a

conference!

> >

> > Hi

> > I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

> >

> > The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

> >

> > The audience will be surgeons and orthpaedic nurses so an important group to

get through to

> >

> > The questions I have been asked to talk on are

> > 1. What do patients need to know (I'd say want to know as well)

> > 2. How could the patient pathway from diagnosis to recovery be improved.

> >

> > I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

> >

> > Any help much appreciated

> > Thanks

> > Pamela

> > ps the conference is in London in September

> >

> >

[Guest guest]

My surgeon was happy for me to know anything I wanted to. I don't think I could

have coped with a surgeon I felt wouldn't discuss the op in enough detail.

>

> > I would want these people to know the more they let patients know, the

better. Not less is better. I don't think they think telling us the truth is

helpful.

> >

> > The more I got prepared and learned, the less problems I had. And knowing we

are all going to experience some differences is also helpful.

> >

> > Donna

> >

> > I've been invited to speak at a

conference!

> >

> > Hi

> > I'm totally shocked but I got phoned up by a conference organiser asking if

I'd speak at the 2nd Annual conference on hip replacement:improving the patient

pathway

> >

> > The idea was for me to talk about my experience of being a patient but I

said that my individual experience probably doesn't reflect the larger patient

community and I'd rather gather up ideas from fellow patients and share those

with them

> >

> > The audience will be surgeons and orthpaedic nurses so an important group to

get through to

> >

> > The questions I have been asked to talk on are

> > 1. What do patients need to know (I'd say want to know as well)

> > 2. How could the patient pathway from diagnosis to recovery be improved.

> >

> > I'd really like to hear other people's ideas of what I should say as I

really don't just want to give them my opinion.

> >

> > Any help much appreciated

> > Thanks

> > Pamela

> > ps the conference is in London in September

> >

> >