Re: HERS citations

[Guest guest]

hoffmannca@... wrote:

>A quick search unearthed quite a few prospective, randomized

studies on the

>impact, particularly on fertility, of myomectomy. A PubMed search

gave me 33

>pages of citations on myo alone, not all prospective, randomized,

difficult

>to do on a surgical procedure where one has to have informed consent.

I'm sorry. Prospectively controlled, long term impact studies?

Please list those citations Candace. Pages of citations showing published

papers is not indicative that even a single given paper was based on a

prospectively controlled, long term impact study -- which is what HERS

is indicating is necessary to evaluate UAE. And if you know of ANY

prospective clinical trial that looks at hysterectomy or myomectomy (any

form) beyond the 5 year mark, I would love to read it. I'm fairly

confident, however, that it doesn't exist -- but I am very open to

being proven wrong on this as I really would like to be pleasantly surprised

that such research does indeed exist.

Prospective "randomized" study on myomectomy? How would that have

been accomplished? What was it randomized against? Can you

produce those citations too? 33 pages of citations? I just

want to read a single paper that is a prospective, randomized clinical

trial on myomectomy. Preferably one that follows patients for more

than 180 days -- but it would truly be good to read about any prospective,

randomized clinical trial on myomectomy.

BTW, the funding issue is an interesting one to raise. Who funds

HERS? Who benefits from myomectomy referrals that come from HERS?

Why are some gynecologists former doctors on her list -- but now crossed

off? Why won't she explain to women how she acquires the names of

doctors she refers women to? Why won't she explain why she doesn't

recommend certain doctors? Just how does a doctor get on her "list"?

Why won't she answer these questions when women ask?

Wouldn't it make more sense to teach women how to find a good doctor

for themselves? How to evaluate credentials, do background checks,

use doctor finders, ask questions that will help them determine a better

physician choice from the get go? There's a lot to learn in

choosing a physician and it's not an easy process either -- but certainly

more beneficial to learn this prior to treatment so that it can be applied

over the long haul of one's medical needs, wouldn't you think? I

don't know. I know I'm biased regarding how I view this business

of doctor referrals. Too many women call NUFF and "just want a name"

and it makes me really uncomfortable to "just do that" because I know it

is filled with potential for problems. Sometimes I do give out names

-- but always in the context of how the woman can evaluate the doctor for

themselves and find another one should this one not suit them. But

it still makes me uncomfortable.

In addition, NUFF receives a lot of email and phone calls from women

asking why Dr. Stanley West isn't on the HERS myomectomy doctor list....he

seems to have a lot of good references and I've never heard a single woman

indicate they had a bad outcome from this physician -- so why isn't he

on the HERS "list"? How should I know? No one that I know seems

to have an answer to that question and my own correspondence with Nora

over this issue goes unanswered. But, I can tell you from my research

that there was a lawsuit filed a few years ago involving Vicki Hufnagel,

Nora Coffey, a Dranov and Stanley West over copyrights to the material

used in the book "The Hysterectomy Hoax." A $5 million dollar lawsuit

that went nowhere but dragged through the court for over a year ending

with Hufnagel paying Dranov and West court costs. (I'd give you the

URL citation -- but it is only accessible online via PACER -- a national

database of court records that requires formal registration with the government

and costs money to access. It also takes a couple of weeks to even

get an access password via snail mail.)

"Money" is most certainly an interesting issue to bring up amidst all

of this -- but how do any of us know the true motivations behind what drives

any single individual? Somewhere along the treatment path road

we have to throw everything we know aside and simply trust the decision

we made and the physician before us, don't we? Where I draw the line

of information collection before I "trust" probably isn't going to be the

same as anyone else so "trusting" a referral from someone just isn't adequate

for me. Perhaps it is for others though. I don't know.

Also, chemicals are chemicals. Whether they go directly in your

body via some medical procedure or land there due to your work environment,

air emissions, or ground or water contamination or even by your own personal,

over the counter purchases via taking herbal remedies -- chemicals are

chemicals. All have impact in one way or another and all generally

involve choices we make along the way. No so "apple and oranges"

in my book. How do I know that the choice I made to work in a chemically

laden environment (BTW, the chemical that finally took me out of the fabrication

plant was an acetate -- something that also happens to be used in the development

of synthetic progestins) wasn't responsible for the onset of my fibroids?

I don't.

Finally, I don't think that listing as a citation the IARC abstract

is merely a "conservative" stance. I think it's a deliberate attempt

to associate PVA with cancer. How many women are going to read that

abstract listing and know where to find the text on the internet?

How many are going to immediately assume there is a connection to cancer

simply because it's listed in the HERS bib on UAE? Sorry, I don't

see any point behind this minimal listing of bib items EXCEPT to highlight

the negative and draw a picture for women that UAE is a very, very bad

treatment choice.

I'm thoroughly dismayed over the directive behind this educational effort

and the way in which HERS has chosen to present the information to women.

I simply do not understand it. HERS has been a leading force in helping

many women avoid hysterectomy in this nation -- a positive force that has

served to educate women and keep this issue out there in the media's face

and before the public eye. I'm terribly disappointed to see the HERS

web page on UAE go online and even more disappointed in this organization

which has done so much for women for so many years. Dismayed.

Disappointed. Simply don't know what to think.

Furthermore, in terms of a registry, SCVIR and CIRREF has been extremely

proactive in setting this in motion. They've listened to the women

who've undergone this procedure (UAE) and moved to spend a few million

to set up an independent collection (Duke Clinical Research Institute is

coordinating the data collection) of data from patients.

http://www.scvir.org/surveys/uae/index.html (scroll down to read

about how the registry will be implemented)

I don't see gynecological groups doing this for hysteroscopy or laparoscopy

-- as endoscopy for reproductive disease has only been around about the

same amount of time as UAE for fibroids. And it's certainly never

occurred for hysterectomy or myomectomy or ablation or myolysis or ????

It's just never been done before. Planning and acquiring funding

for this registry has taken a few years -- as does most good clinical research

plans -- but it has certainly been put together at lightspeed compared

to the development of a registry and the tracking of clinical outcome for

any other treatment option. If HERS had chosen to contact SCVIR and

ask questions directly of that professional group she would have learned

a great deal about this registry and UAE. I don't see interventional

radiologists shirking responsibilities for data collection. At all.

And see little need for HERS to set up this independent collection of only

negative outcome.

Finally, in reviewing the "Adverse Effects" lists for UAE appearing

on the HERS page, did anyone but me note that many of the items identified

could also be listed for myomectomy? Were some of the items listed

truly adverse effects of UAE? Is vaginal expulsion of a fibroid an

adverse effect? Failure to shrink fibroids? How is that an

adverse effect? It's a NON effect that indicates the procedure didn't

work, isn't it? Increased uterine and fibroid volume? From

UAE? Or, from the procedure not working? The list is confusing

to me -- but probably caught my eye even more than the norm since I put

together similar lists for each treatment option for my book. I think

I put fibroid regrowth as an adverse effect of myomectomy and a doctor

questioned me on how, precisely, is that an adverse effect of the procedure?

Well, it isn't. It's simply indicative of an imperfect procedure

incapable of completely resolving the fibroid issue. I removed it

from the adverse effect list and discussed the issue separately.

Severe, persistent pain requiring use of narcotics? So, myomectomy

and hysterectomy are painless procedures not requiring drugs for pain control?

Also, she forgot a few items. Pulmonary embolism, kidney failure,

sciatic nerve injury...of course, all of those items apply to myomectomy

and hysterectomy as well.

Sigh. What's the point of the HERS web page again? Truly,

I simply do not understand the motivation behind it and I am seriously

disappointed in HERS for taking this directive. Now what?

carla

[Guest guest]

Carla Dionne wrote:

hoffmannca@... wrote:

>A quick search unearthed quite a few prospective, randomized

studies on the

>impact, particularly on fertility, of myomectomy. A PubMed search

gave me 33

>pages of citations on myo alone, not all prospective, randomized,

difficult

>to do on a surgical procedure where one has to have informed consent.

I'm sorry. Prospectively controlled, long term impact studies?

Please list those citations Candace. Pages of citations showing published

papers is not indicative that even a single given paper was based on a

prospectively controlled, long term impact study -- which is what HERS

is indicating is necessary to evaluate UAE. And if you know of ANY

prospective clinical trial that looks at hysterectomy or myomectomy (any

form) beyond the 5 year mark, I would love to read it. I'm fairly

confident, however, that it doesn't exist -- but I am very open to

being proven wrong on this as I really would like to be pleasantly surprised

that such research does indeed exist.

Prospective "randomized" study on myomectomy? How would that have

been accomplished? What was it randomized against? Can you

produce those citations too? 33 pages of citations? I just

want to read a single paper that is a prospective, randomized clinical

trial on myomectomy. Preferably one that follows patients for more

than 180 days -- but it would truly be good to read about any prospective,

randomized clinical trial on myomectomy.

BTW, the funding issue is an interesting one to raise. Who funds

HERS? Who benefits from myomectomy referrals that come from HERS?

Why are some gynecologists former doctors on her list -- but now crossed

off? Why won't she explain to women how she acquires the names of

doctors she refers women to? Why won't she explain why she doesn't

recommend certain doctors? Just how does a doctor get on her "list"?

Why won't she answer these questions when women ask?

Wouldn't it make more sense to teach women how to find a good doctor

for themselves? How to evaluate credentials, do background checks,

use doctor finders, ask questions that will help them determine a better

physician choice from the get go? There's a lot to learn in

choosing a physician and it's not an easy process either -- but certainly

more beneficial to learn this prior to treatment so that it can be applied

over the long haul of one's medical needs, wouldn't you think? I

don't know. I know I'm biased regarding how I view this business

of doctor referrals. Too many women call NUFF and "just want a name"

and it makes me really uncomfortable to "just do that" because I know it

is filled with potential for problems. Sometimes I do give out names

-- but always in the context of how the woman can evaluate the doctor for

themselves and find another one should this one not suit them. But

it still makes me uncomfortable.

In addition, NUFF receives a lot of email and phone calls from women

asking why Dr. Stanley West isn't on the HERS myomectomy doctor list....he

seems to have a lot of good references and I've never heard a single woman

indicate they had a bad outcome from this physician -- so why isn't he

on the HERS "list"? How should I know? No one that I know seems

to have an answer to that question and my own correspondence with Nora

over this issue goes unanswered. But, I can tell you from my research

that there was a lawsuit filed a few years ago involving Vicki Hufnagel,

Nora Coffey, a Dranov and Stanley West over copyrights to the material

used in the book "The Hysterectomy Hoax." A $5 million dollar lawsuit

that went nowhere but dragged through the court for over a year ending

with Hufnagel paying Dranov and West court costs. (I'd give you the

URL citation -- but it is only accessible online via PACER -- a national

database of court records that requires formal registration with the government

and costs money to access. It also takes a couple of weeks to even

get an access password via snail mail.)

"Money" is most certainly an interesting issue to bring up amidst all

of this -- but how do any of us know the true motivations behind what drives

any single individual? Somewhere along the treatment path road

we have to throw everything we know aside and simply trust the decision

we made and the physician before us, don't we? Where I draw the line

of information collection before I "trust" probably isn't going to be the

same as anyone else so "trusting" a referral from someone just isn't adequate

for me. Perhaps it is for others though. I don't know.

Also, chemicals are chemicals. Whether they go directly in your

body via some medical procedure or land there due to your work environment,

air emissions, or ground or water contamination or even by your own personal,

over the counter purchases via taking herbal remedies -- chemicals are

chemicals. All have impact in one way or another and all generally

involve choices we make along the way. No so "apple and oranges"

in my book. How do I know that the choice I made to work in a chemically

laden environment (BTW, the chemical that finally took me out of the fabrication

plant was an acetate -- something that also happens to be used in the development

of synthetic progestins) wasn't responsible for the onset of my fibroids?

I don't.

Finally, I don't think that listing as a citation the IARC abstract

is merely a "conservative" stance. I think it's a deliberate attempt

to associate PVA with cancer. How many women are going to read that

abstract listing and know where to find the text on the internet?

How many are going to immediately assume there is a connection to cancer

simply because it's listed in the HERS bib on UAE? Sorry, I don't

see any point behind this minimal listing of bib items EXCEPT to highlight

the negative and draw a picture for women that UAE is a very, very bad

treatment choice.

I'm thoroughly dismayed over the directive behind this educational effort

and the way in which HERS has chosen to present the information to women.

I simply do not understand it. HERS has been a leading force in helping

many women avoid hysterectomy in this nation -- a positive force that has

served to educate women and keep this issue out there in the media's face

and before the public eye. I'm terribly disappointed to see the HERS

web page on UAE go online and even more disappointed in this organization

which has done so much for women for so many years. Dismayed.

Disappointed. Simply don't know what to think.

Furthermore, in terms of a registry, SCVIR and CIRREF has been extremely

proactive in setting this in motion. They've listened to the women

who've undergone this procedure (UAE) and moved to spend a few million

to set up an independent collection (Duke Clinical Research Institute is

coordinating the data collection) of data from patients.

http://www.scvir.org/surveys/uae/index.html

(scroll down to read about how the registry will be implemented)

I don't see gynecological groups doing this for hysteroscopy or laparoscopy

-- as endoscopy for reproductive disease has only been around about the

same amount of time as UAE for fibroids. And it's certainly never

occurred for hysterectomy or myomectomy or ablation or myolysis or ????

It's just never been done before. Planning and acquiring funding

for this registry has taken a few years -- as does most good clinical research

plans -- but it has certainly been put together at lightspeed compared

to the development of a registry and the tracking of clinical outcome for

any other treatment option. If HERS had chosen to contact SCVIR and

ask questions directly of that professional group she would have learned

a great deal about this registry and UAE. I don't see interventional

radiologists shirking responsibilities for data collection. At all.

And see little need for HERS to set up this independent collection of only

negative outcome.

Finally, in reviewing the "Adverse Effects" lists for UAE appearing

on the HERS page, did anyone but me note that many of the items identified

could also be listed for myomectomy? Were some of the items listed

truly adverse effects of UAE? Is vaginal expulsion of a fibroid an

adverse effect? Failure to shrink fibroids? How is that an

adverse effect? It's a NON effect that indicates the procedure didn't

work, isn't it? Increased uterine and fibroid volume? From

UAE? Or, from the procedure not working? The list is confusing

to me -- but probably caught my eye even more than the norm since I put

together similar lists for each treatment option for my book. I think

I put fibroid regrowth as an adverse effect of myomectomy and a doctor

questioned me on how, precisely, is that an adverse effect of the procedure?

Well, it isn't. It's simply indicative of an imperfect procedure

incapable of completely resolving the fibroid issue. I removed it

from the adverse effect list and discussed the issue separately.

Severe, persistent pain requiring use of narcotics? So, myomectomy

and hysterectomy are painless procedures not requiring drugs for pain control?

Also, she forgot a few items. Pulmonary embolism, kidney failure,

sciatic nerve injury...of course, all of those items apply to myomectomy

and hysterectomy as well.

Sigh. What's the point of the HERS web page again? Truly,

I simply do not understand the motivation behind it and I am seriously

disappointed in HERS for taking this directive. Now what?

carla

Carla,Its Bonnie.I've been listening all morning.I think the fairest thing

to do for all of us is to invite Nora to this discussion.As you have said,HERS

has helped many women throughout the years.Its a pity that there is this

going on.Everyone would benefit if Nora was involved in the discussion.

Bonnie

[Guest guest]

Carla Dionne wrote:

hoffmannca@... wrote:

>A quick search unearthed quite a few prospective, randomized

studies on the

>impact, particularly on fertility, of myomectomy. A PubMed search

gave me 33

>pages of citations on myo alone, not all prospective, randomized,

difficult

>to do on a surgical procedure where one has to have informed consent.

I'm sorry. Prospectively controlled, long term impact studies?

Please list those citations Candace. Pages of citations showing published

papers is not indicative that even a single given paper was based on a

prospectively controlled, long term impact study -- which is what HERS

is indicating is necessary to evaluate UAE. And if you know of ANY

prospective clinical trial that looks at hysterectomy or myomectomy (any

form) beyond the 5 year mark, I would love to read it. I'm fairly

confident, however, that it doesn't exist -- but I am very open to

being proven wrong on this as I really would like to be pleasantly surprised

that such research does indeed exist.

Prospective "randomized" study on myomectomy? How would that have

been accomplished? What was it randomized against? Can you

produce those citations too? 33 pages of citations? I just

want to read a single paper that is a prospective, randomized clinical

trial on myomectomy. Preferably one that follows patients for more

than 180 days -- but it would truly be good to read about any prospective,

randomized clinical trial on myomectomy.

BTW, the funding issue is an interesting one to raise. Who funds

HERS? Who benefits from myomectomy referrals that come from HERS?

Why are some gynecologists former doctors on her list -- but now crossed

off? Why won't she explain to women how she acquires the names of

doctors she refers women to? Why won't she explain why she doesn't

recommend certain doctors? Just how does a doctor get on her "list"?

Why won't she answer these questions when women ask?

Wouldn't it make more sense to teach women how to find a good doctor

for themselves? How to evaluate credentials, do background checks,

use doctor finders, ask questions that will help them determine a better

physician choice from the get go? There's a lot to learn in

choosing a physician and it's not an easy process either -- but certainly

more beneficial to learn this prior to treatment so that it can be applied

over the long haul of one's medical needs, wouldn't you think? I

don't know. I know I'm biased regarding how I view this business

of doctor referrals. Too many women call NUFF and "just want a name"

and it makes me really uncomfortable to "just do that" because I know it

is filled with potential for problems. Sometimes I do give out names

-- but always in the context of how the woman can evaluate the doctor for

themselves and find another one should this one not suit them. But

it still makes me uncomfortable.

In addition, NUFF receives a lot of email and phone calls from women

asking why Dr. Stanley West isn't on the HERS myomectomy doctor list....he

seems to have a lot of good references and I've never heard a single woman

indicate they had a bad outcome from this physician -- so why isn't he

on the HERS "list"? How should I know? No one that I know seems

to have an answer to that question and my own correspondence with Nora

over this issue goes unanswered. But, I can tell you from my research

that there was a lawsuit filed a few years ago involving Vicki Hufnagel,

Nora Coffey, a Dranov and Stanley West over copyrights to the material

used in the book "The Hysterectomy Hoax." A $5 million dollar lawsuit

that went nowhere but dragged through the court for over a year ending

with Hufnagel paying Dranov and West court costs. (I'd give you the

URL citation -- but it is only accessible online via PACER -- a national

database of court records that requires formal registration with the government

and costs money to access. It also takes a couple of weeks to even

get an access password via snail mail.)

"Money" is most certainly an interesting issue to bring up amidst all

of this -- but how do any of us know the true motivations behind what drives

any single individual? Somewhere along the treatment path road

we have to throw everything we know aside and simply trust the decision

we made and the physician before us, don't we? Where I draw the line

of information collection before I "trust" probably isn't going to be the

same as anyone else so "trusting" a referral from someone just isn't adequate

for me. Perhaps it is for others though. I don't know.

Also, chemicals are chemicals. Whether they go directly in your

body via some medical procedure or land there due to your work environment,

air emissions, or ground or water contamination or even by your own personal,

over the counter purchases via taking herbal remedies -- chemicals are

chemicals. All have impact in one way or another and all generally

involve choices we make along the way. No so "apple and oranges"

in my book. How do I know that the choice I made to work in a chemically

laden environment (BTW, the chemical that finally took me out of the fabrication

plant was an acetate -- something that also happens to be used in the development

of synthetic progestins) wasn't responsible for the onset of my fibroids?

I don't.

Finally, I don't think that listing as a citation the IARC abstract

is merely a "conservative" stance. I think it's a deliberate attempt

to associate PVA with cancer. How many women are going to read that

abstract listing and know where to find the text on the internet?

How many are going to immediately assume there is a connection to cancer

simply because it's listed in the HERS bib on UAE? Sorry, I don't

see any point behind this minimal listing of bib items EXCEPT to highlight

the negative and draw a picture for women that UAE is a very, very bad

treatment choice.

I'm thoroughly dismayed over the directive behind this educational effort

and the way in which HERS has chosen to present the information to women.

I simply do not understand it. HERS has been a leading force in helping

many women avoid hysterectomy in this nation -- a positive force that has

served to educate women and keep this issue out there in the media's face

and before the public eye. I'm terribly disappointed to see the HERS

web page on UAE go online and even more disappointed in this organization

which has done so much for women for so many years. Dismayed.

Disappointed. Simply don't know what to think.

Furthermore, in terms of a registry, SCVIR and CIRREF has been extremely

proactive in setting this in motion. They've listened to the women

who've undergone this procedure (UAE) and moved to spend a few million

to set up an independent collection (Duke Clinical Research Institute is

coordinating the data collection) of data from patients.

http://www.scvir.org/surveys/uae/index.html

(scroll down to read about how the registry will be implemented)

I don't see gynecological groups doing this for hysteroscopy or laparoscopy

-- as endoscopy for reproductive disease has only been around about the

same amount of time as UAE for fibroids. And it's certainly never

occurred for hysterectomy or myomectomy or ablation or myolysis or ????

It's just never been done before. Planning and acquiring funding

for this registry has taken a few years -- as does most good clinical research

plans -- but it has certainly been put together at lightspeed compared

to the development of a registry and the tracking of clinical outcome for

any other treatment option. If HERS had chosen to contact SCVIR and

ask questions directly of that professional group she would have learned

a great deal about this registry and UAE. I don't see interventional

radiologists shirking responsibilities for data collection. At all.

And see little need for HERS to set up this independent collection of only

negative outcome.

Finally, in reviewing the "Adverse Effects" lists for UAE appearing

on the HERS page, did anyone but me note that many of the items identified

could also be listed for myomectomy? Were some of the items listed

truly adverse effects of UAE? Is vaginal expulsion of a fibroid an

adverse effect? Failure to shrink fibroids? How is that an

adverse effect? It's a NON effect that indicates the procedure didn't

work, isn't it? Increased uterine and fibroid volume? From

UAE? Or, from the procedure not working? The list is confusing

to me -- but probably caught my eye even more than the norm since I put

together similar lists for each treatment option for my book. I think

I put fibroid regrowth as an adverse effect of myomectomy and a doctor

questioned me on how, precisely, is that an adverse effect of the procedure?

Well, it isn't. It's simply indicative of an imperfect procedure

incapable of completely resolving the fibroid issue. I removed it

from the adverse effect list and discussed the issue separately.

Severe, persistent pain requiring use of narcotics? So, myomectomy

and hysterectomy are painless procedures not requiring drugs for pain control?

Also, she forgot a few items. Pulmonary embolism, kidney failure,

sciatic nerve injury...of course, all of those items apply to myomectomy

and hysterectomy as well.

Sigh. What's the point of the HERS web page again? Truly,

I simply do not understand the motivation behind it and I am seriously

disappointed in HERS for taking this directive. Now what?

carla

Carla,Its Bonnie.I've been listening all morning.I think the fairest thing

to do for all of us is to invite Nora to this discussion.As you have said,HERS

has helped many women throughout the years.Its a pity that there is this

going on.Everyone would benefit if Nora was involved in the discussion.

Bonnie

[Guest guest]

cdionne@... wrote:

> Who benefits from myomectomy referrals that come from HERS? Why are some gynecologists former doctors > on her list -- but now crossed off? Why won't she explain to women how she acquires the names of doctors she > refers women to? Why won't she explain why she doesn't recommend certain doctors? Just how does a doctor get> on her "list"? Why won't she answer these questions when women ask?

I called the HERS Foundation a few months ago. I did ask for doctor referrals, probably for the same reason most other women do. I needed a starting place. If you have no clue where to start in looking for a good gynecologist, a referral can be of great assistance, especially from an organization known to promote doctors who aren't likely to suggest hysterectomy. Otherwise, I would just be visiting doctor after doctor until I found one who fit my needs.

So, I called and asked for referrals in my area. There were none. She didn't have a single referral in the state of Indiana or Kentucky. Actually, she indicated that she didn't have any doctor names in the whole region. Because there were no doctors in my part of the country, I then asked how they obtain their list of doctors. She told me they hear from women who have had good experiences with a particular doctor, and they add them to the list. I don't know if they have to hear from multiple women, or if they add the name based on one patient's opinion. Either way, it's frightening. I mean, I know that any referral is basically an opinion, but a referral from an organization like that should be based on the same sorts of questions they tell US to ask our doctor: How many myos do they do in a year? How many turned into a hysterectomy? How do they control blood loss? Have they ever lost a patient? etc.

When I started searching for a doctor, the first doctor I went to suggested either myomectomy or hysterectomy. I scheduled the myomectomy. He seemed very anxious to perform the surgery and was annoyed when I would call back to ask him questions about it. While I was waiting for the date to arrive, I spoke to a friend of a friend (who used to be a nurse). She said there were only two doctors in the area she would NEVER see, and he was one of them. She said he was known to nick the bladder, make mistakes during surgery. Needless to say, I canceled. What if just one woman had a good experience with him though? Would he have made it to the HERS list?

B.

[Guest guest]

cdionne@... wrote:

> Who benefits from myomectomy referrals that come from HERS? Why are some gynecologists former doctors > on her list -- but now crossed off? Why won't she explain to women how she acquires the names of doctors she > refers women to? Why won't she explain why she doesn't recommend certain doctors? Just how does a doctor get> on her "list"? Why won't she answer these questions when women ask?

I called the HERS Foundation a few months ago. I did ask for doctor referrals, probably for the same reason most other women do. I needed a starting place. If you have no clue where to start in looking for a good gynecologist, a referral can be of great assistance, especially from an organization known to promote doctors who aren't likely to suggest hysterectomy. Otherwise, I would just be visiting doctor after doctor until I found one who fit my needs.

So, I called and asked for referrals in my area. There were none. She didn't have a single referral in the state of Indiana or Kentucky. Actually, she indicated that she didn't have any doctor names in the whole region. Because there were no doctors in my part of the country, I then asked how they obtain their list of doctors. She told me they hear from women who have had good experiences with a particular doctor, and they add them to the list. I don't know if they have to hear from multiple women, or if they add the name based on one patient's opinion. Either way, it's frightening. I mean, I know that any referral is basically an opinion, but a referral from an organization like that should be based on the same sorts of questions they tell US to ask our doctor: How many myos do they do in a year? How many turned into a hysterectomy? How do they control blood loss? Have they ever lost a patient? etc.

When I started searching for a doctor, the first doctor I went to suggested either myomectomy or hysterectomy. I scheduled the myomectomy. He seemed very anxious to perform the surgery and was annoyed when I would call back to ask him questions about it. While I was waiting for the date to arrive, I spoke to a friend of a friend (who used to be a nurse). She said there were only two doctors in the area she would NEVER see, and he was one of them. She said he was known to nick the bladder, make mistakes during surgery. Needless to say, I canceled. What if just one woman had a good experience with him though? Would he have made it to the HERS list?

B.

[Guest guest]

Bonnie Andrukaitis wrote:

> Carla,Its Bonnie.I've been listening all morning.I think the fairest

> thing to do for all of us is to invite Nora to this discussion.As you

> have said,HERS has helped many women throughout the years.Its a pity

> that there is this going on.Everyone would benefit if Nora was

> involved in the discussion.

> Bonnie

I agree. Been trying to bring her to the discussion table for over a

year now. Unsuccessfully. Doesn't answer my email and won't take my

phone calls or return my phone calls. At all. If you have any ideas on

how to bring her to this discussion, I'm open to them.

Carla Dionne

[Guest guest]

Bonnie Andrukaitis wrote:

> Carla,Its Bonnie.I've been listening all morning.I think the fairest

> thing to do for all of us is to invite Nora to this discussion.As you

> have said,HERS has helped many women throughout the years.Its a pity

> that there is this going on.Everyone would benefit if Nora was

> involved in the discussion.

> Bonnie

I agree. Been trying to bring her to the discussion table for over a

year now. Unsuccessfully. Doesn't answer my email and won't take my

phone calls or return my phone calls. At all. If you have any ideas on

how to bring her to this discussion, I'm open to them.

Carla Dionne

[Guest guest]

Re HERS opinion,

I don't have a problem with PVA, and if I thought I would have gained

benefits I would have used it, however I used gelfoam for my UAE.

UAE does not necessarily mean PVA, but HERS fails to address this.

> The following is identified as one of the citations supporting the

> negative information presented by HERS re: UAE:

>

> Polyvinyl Alcohol

> International Agency For Research On Cancer (IARC)

> CAS No.: 9002-89-5

> Chem. Abstr. Name: Ethernol homopolymer

> 5.1 Experimental data

>

> To read this abstract in its entirety, you can find it here:

>

>

http://193.51.164.11/htdocs/Monographs/Vol19/VinylAcetate & Polymers.htm

l

>

> Section 5.1 contains the following:

> _____________________

> 5.1 Experimental data

>

> In the only study available, vinyl acetate was tested in rats by

> inhalation exposure; it produced no evidence of carcinogenicity.

>

> Vinyl acetate was non-mutagenic in the only test system used.

>

> Subcutaneous or intraperitoneal implantation of polyvinyl acetate

powder

> in mice and rats did not result in local sarcomas. Subcutaneous

> implantation of polyvinyl alcohol sponges in rats produced local

> sarcomas, whereas negative results were obtained with polyvinyl

alcohol

> powder.

> ___________________

>

> I don't see relevant information in this citation. It would appear

that

> polyvinyl alcohol powder had negative sarcomatous results with the

> limited information at hand in 1998 (when this was published) and

showed

> no carcinogenicity. I'm confused here. Why is this citation so

> relevant to UAE on the HERS site?

>

> When I was exposed to industrial solvent chemicals while working

for a

> major semiconductor manufacturing company many years ago, it came

to my

> attention (through subsequent research) that over 200 chemicals are

used

> in the manufacture of computers. The vast majority have never been

> tested for detrimental impact to humans due to either direct

exposure in

> the workplace or environmental exposure via air emissions that then

land

> in water & soil and contaminate ground water, etc., in the

environment.

> I have no doubts whatsoever that the computer you are currently

sitting

> in front of to read this email has potentially exposed thousands of

> individuals to deadly chemicals on a daily basis during the

> manufacturing process. In addition, those very chemicals continue

to

> have an ongoing cyclic impact to our environment through air

emissions

> and water and ground contamination. The food you eat and the water

you

> drink has probably been impacted by the very computer you are

currently

> staring at right now. I can list the chemicals in detail and show

you

> the woefully inadequate data available for each -- but will that

> information cause you to throw your computer out the door and vow to

> never handle another electronic device using a semiconductor chip?

How

> about if I showed you the miscarriage data accumulated by

environmental

> groups tracking this information from people living within a 1 mile

> radius to semiconductor manufacturing plants? I didn't think

so.

> Knowledge of this information -- and much, much more -- didn't have

an

> impact on my computer use. Besides, semiconductor chips and

electronic

> devices are relatively unavoidable today -- regardless of how

little the

> public actually knows about the manufacturing processes of them.

>

> What does any of this have to do with the price of rice in China?

Well,

> there are thousands of chemicals and devices that do not have

formal,

> long term impact studies completed on them. Thousands. Many of

them

> are FDA approved for human use. If long term impact studies were

> required for every single drug and chemical on the marketplace, we

would

> all be waiting 20 years for the ability/right to receive medication

or

> treatment with medical devices that could help us today with our

> disease. (We also wouldn't be using computers right now!) While

we can

> insist upon showing due diligence in the research process and go to

> terrific lengths to set up agencies of oversight that force

criteria for

> human experimentation to be strictly adhered to -- waiting for 20

year

> studies on any given drug or treatment device before using it at all

> would mean that most new medical remedies would be out of reach for

any

> of us and only available to the generation that follows next. That

is,

> if it wasn't cost prohibitive by the time 20 year studies were

> completed. Is that really an acceptable solution? After the

emergence

> of the polio vaccine, would it have been publicly acceptable to

wait for

> 20 year longevity studies to be complete prior to use of this

incredible

> drug? After all, most cases of polio were 'merely' crippling -- not

> life threatening. Would it have served the public's best interests

to

> delay the distribution and use of this drug?

>

> While I know we have history of scientific misconduct in this nation

> that most definitely has had dire consequences for many women and

future

> generations of children, is that the standard of research and

> implementation of medical procedures by which all other

drugs/treatment

> should be measured against? If so, is it a fair standard? How do

we

> gauge right and wrong here? How do we assess and evaluate the

> contribution of the obfuscation of scientific findings towards the

> overall impact of any given drug or device? How do we even know

when

> and if this is occurring? How do we know it wouldn't occur with

even a

> 20 year study? Where do we draw the line between stringent testing

&

> oversight and trust of published outcome/findings based on lesser

time

> periods?

>

> I don't have any answers. Only questions. What I " had " at the

time of

> needing treatment, was the need to make a decision based on all the

> available documentation and science published to date. I did the

best I

> could at the time and don't regret my decision at all. But it

doesn't

> mean my list of questions has been answered. It only means that I

> reviewed my options, did a risk factor assessment, and determined

what I

> felt to be was in my best interests at the time. I probably even

did so

> with more information at my fingertips that just about anyone else I

> know -- information that included the FDA complaint reports on PVA

that

> had accumulated to date by 11/98. I proceeded with UAE anyway.

Even

> so, I don't expect my situation or my risk factor assessment to be

the

> same as so much as even one other woman.

>

> You must evaluate each choice for yourself against your own

individual

> need for treatment. What I found acceptable in terms of long term

> impact studies and longevity of the treatment option in the

marketplace

> as well as accumulated risk factors to date may very well not be

> acceptable to you. Then again, hysterectomy has been around and

> reported on for over 150 years in the medical literature. I can't

see

> where long term impact studies have made any differences whatsoever

in

> improving that treatment option to an acceptable risk factor level

to

> satisfy my comfort zone. Oh wait -- I forgot. There are no

> prospectively controlled, long term impact studies completed on

> hysterectomy. None for myomectomy either. None currently in

progress

> either. Complicates the decision making process, doesn't it? Puts

the

> information presented by HERS re:UAE in a new light, wouldn't you

say?

>

> Carla Dionne

[Guest guest]

Re HERS opinion,

I don't have a problem with PVA, and if I thought I would have gained

benefits I would have used it, however I used gelfoam for my UAE.

UAE does not necessarily mean PVA, but HERS fails to address this.

> The following is identified as one of the citations supporting the

> negative information presented by HERS re: UAE:

>

> Polyvinyl Alcohol

> International Agency For Research On Cancer (IARC)

> CAS No.: 9002-89-5

> Chem. Abstr. Name: Ethernol homopolymer

> 5.1 Experimental data

>

> To read this abstract in its entirety, you can find it here:

>

>

http://193.51.164.11/htdocs/Monographs/Vol19/VinylAcetate & Polymers.htm

l

>

> Section 5.1 contains the following:

> _____________________

> 5.1 Experimental data

>

> In the only study available, vinyl acetate was tested in rats by

> inhalation exposure; it produced no evidence of carcinogenicity.

>

> Vinyl acetate was non-mutagenic in the only test system used.

>

> Subcutaneous or intraperitoneal implantation of polyvinyl acetate

powder

> in mice and rats did not result in local sarcomas. Subcutaneous

> implantation of polyvinyl alcohol sponges in rats produced local

> sarcomas, whereas negative results were obtained with polyvinyl

alcohol

> powder.

> ___________________

>

> I don't see relevant information in this citation. It would appear

that

> polyvinyl alcohol powder had negative sarcomatous results with the

> limited information at hand in 1998 (when this was published) and

showed

> no carcinogenicity. I'm confused here. Why is this citation so

> relevant to UAE on the HERS site?

>

> When I was exposed to industrial solvent chemicals while working

for a

> major semiconductor manufacturing company many years ago, it came

to my

> attention (through subsequent research) that over 200 chemicals are

used

> in the manufacture of computers. The vast majority have never been

> tested for detrimental impact to humans due to either direct

exposure in

> the workplace or environmental exposure via air emissions that then

land

> in water & soil and contaminate ground water, etc., in the

environment.

> I have no doubts whatsoever that the computer you are currently

sitting

> in front of to read this email has potentially exposed thousands of

> individuals to deadly chemicals on a daily basis during the

> manufacturing process. In addition, those very chemicals continue

to

> have an ongoing cyclic impact to our environment through air

emissions

> and water and ground contamination. The food you eat and the water

you

> drink has probably been impacted by the very computer you are

currently

> staring at right now. I can list the chemicals in detail and show

you

> the woefully inadequate data available for each -- but will that

> information cause you to throw your computer out the door and vow to

> never handle another electronic device using a semiconductor chip?

How

> about if I showed you the miscarriage data accumulated by

environmental

> groups tracking this information from people living within a 1 mile

> radius to semiconductor manufacturing plants? I didn't think

so.

> Knowledge of this information -- and much, much more -- didn't have

an

> impact on my computer use. Besides, semiconductor chips and

electronic

> devices are relatively unavoidable today -- regardless of how

little the

> public actually knows about the manufacturing processes of them.

>

> What does any of this have to do with the price of rice in China?

Well,

> there are thousands of chemicals and devices that do not have

formal,

> long term impact studies completed on them. Thousands. Many of

them

> are FDA approved for human use. If long term impact studies were

> required for every single drug and chemical on the marketplace, we

would

> all be waiting 20 years for the ability/right to receive medication

or

> treatment with medical devices that could help us today with our

> disease. (We also wouldn't be using computers right now!) While

we can

> insist upon showing due diligence in the research process and go to

> terrific lengths to set up agencies of oversight that force

criteria for

> human experimentation to be strictly adhered to -- waiting for 20

year

> studies on any given drug or treatment device before using it at all

> would mean that most new medical remedies would be out of reach for

any

> of us and only available to the generation that follows next. That

is,

> if it wasn't cost prohibitive by the time 20 year studies were

> completed. Is that really an acceptable solution? After the

emergence

> of the polio vaccine, would it have been publicly acceptable to

wait for

> 20 year longevity studies to be complete prior to use of this

incredible

> drug? After all, most cases of polio were 'merely' crippling -- not

> life threatening. Would it have served the public's best interests

to

> delay the distribution and use of this drug?

>

> While I know we have history of scientific misconduct in this nation

> that most definitely has had dire consequences for many women and

future

> generations of children, is that the standard of research and

> implementation of medical procedures by which all other

drugs/treatment

> should be measured against? If so, is it a fair standard? How do

we

> gauge right and wrong here? How do we assess and evaluate the

> contribution of the obfuscation of scientific findings towards the

> overall impact of any given drug or device? How do we even know

when

> and if this is occurring? How do we know it wouldn't occur with

even a

> 20 year study? Where do we draw the line between stringent testing

&

> oversight and trust of published outcome/findings based on lesser

time

> periods?

>

> I don't have any answers. Only questions. What I " had " at the

time of

> needing treatment, was the need to make a decision based on all the

> available documentation and science published to date. I did the

best I

> could at the time and don't regret my decision at all. But it

doesn't

> mean my list of questions has been answered. It only means that I

> reviewed my options, did a risk factor assessment, and determined

what I

> felt to be was in my best interests at the time. I probably even

did so

> with more information at my fingertips that just about anyone else I

> know -- information that included the FDA complaint reports on PVA

that

> had accumulated to date by 11/98. I proceeded with UAE anyway.

Even

> so, I don't expect my situation or my risk factor assessment to be

the

> same as so much as even one other woman.

>

> You must evaluate each choice for yourself against your own

individual

> need for treatment. What I found acceptable in terms of long term

> impact studies and longevity of the treatment option in the

marketplace

> as well as accumulated risk factors to date may very well not be

> acceptable to you. Then again, hysterectomy has been around and

> reported on for over 150 years in the medical literature. I can't

see

> where long term impact studies have made any differences whatsoever

in

> improving that treatment option to an acceptable risk factor level

to

> satisfy my comfort zone. Oh wait -- I forgot. There are no

> prospectively controlled, long term impact studies completed on

> hysterectomy. None for myomectomy either. None currently in

progress

> either. Complicates the decision making process, doesn't it? Puts

the

> information presented by HERS re:UAE in a new light, wouldn't you

say?

>

> Carla Dionne

[Guest guest]

hoffmannca@... wrote:

One a randomized two year study comparing the

morbidity between

myommectomy and hysterectomy.

Randomized? Women allowed themselves to be randomized between myomectomy

and hysterectomy? Please cite the source. I couldn't find it.

I'd like to know more about how this study was carried out and what the

end results were. This kind of randomization has come up repeatedly

in discussions on proposed research to compare uae with myomectomy and

hysterectomy and I've yet to hear anyone say it is viable. Even so,

I just heard yesterday that there may indeed be a randomized hysterectomy

vs. UAE trial planned or in progress in Europe. Trying to get more

information on this -- if anyone has the inside details, please let us

know.

Another from the Netherlands with a median 42

month followup on myomectomy, range 1 - 104 months.

Again, please cite the source. I'm not trying to be difficult --

I just find this terribly important to the discussion.

I miswrote when I put randomized and prospective

together (force of habit) .

however, there are a few there.

Again, please cite the source. I know of none and would like to read

the documentation published on these clinical trials.

You're right, in a surgical procedure, that

is a difficult aspect of a trial to put in. The morbidity study

was a chart

review. However, done well, chart reviews are not always bad. Depends

on the

study team, the docs and what their procedures/hypotheses/methods

are.

Chart reviews are inadequate and subject to bias -- as you do point out

per dependency on the docs/procedures/hypotheses/methods used. Also,

chart reviews are not acceptable evidence per insurance coverage guidelines

OR what HERS is calling for as acceptable. If that were so, then

there are several large retrospective reviews of UAE patients and their

outcome available and published.

As you know, weighing the validity of studies

is a study unto itself. It's

easy to cull the literature for "hard science" to support

nearly any stance.

It's become a new bible.

Agreed. Which is why it is very, very important to cite the source

and not state things generically. BTW, in using the search term "myomectomy"

one does indeed get over 600 citations listed. However, how many

are truly about myomectomy? If the term is used in the abstract,

it pulls up the paper. Many of those citations have nothing to do

with a study on myomectomy but use the term for some other associative

reason. Such as this one:

Radiology 2000 May;215(2):428-31

Fibroid-related menorrhagia: treatment with superselective embolization

of the uterine arteries and midterm follow-up.

Pelage JP, Le Dref O, Soyer P, Kardache M, Dahan H, Abitbol M, Merland

JJ, Ravina JH, Rymer R

A "prospective" study of UAE to evaluate "...the effectiveness and safety

of selective embolization of the uterine arteries in the management of

symptomatic uterine leiomyoma." A fairly decent paper that identifies

outcome -- including the need for several women to undergo subsequent myomectomy

after clinical failure of UAE to resolve their symptoms.

A lot of the 600+ papers are definitely related in some way to uterine

fibroids and treatment options, but few of the 600 are solely focussed

on a myomectomy trial or study. But some aren't really related at

all. Like this one:

Chest 1998 Aug;114(2):637-9

Migration and right atrial perforation of an Accufix atrial lead retention

wire following partial lead removal during myomectomy.

Gerstenfeld EP, Balarajan Y, Cooke R, Mittleman RS

Department of Medicine, University of Massachusetts Medical Center,

Worcester 01655, USA.

A 36-year-old man with a history of hypertrophic obstructive cardiomyopathy

presented to the emergency room with "stabbing" chest pain. He had undergone

dual-chamber pacemaker implantation in 1993 using an atrial lead

(Accufix; Telectronics; Englewood, Colo) and a myomectomy in 1996 during

which the distal portion of the atrial lead was removed. Digital fluoroscopy

revealed that the retention wire had migrated out of the remaining atrial

lead and perforated the right atrium. The retention wire was successfully

removed percutaneously. The need for complete removal of the retention

wire in the Accufix lead at the time of open-heart surgery is emphasized.

PMID: 9726760, UI: 98393361

Truly, I'm not trying to be difficult. I simply like to read the

information for myself and sincerely appreciate it when participants of

this group cite sources. I find it critical for my personal educational

growth (and for the continued growth and appropriate development of NUFF's

goals and mission in this world to promote research as well as viable alternatives

to hysterectomy to women) to have a broad perspective on the research that

has been done to date and to truly know about the information that is available

on outcome for any treatment option. It's difficult to catch up on

all of the research done to date but I do have the added benefit of not

being a physician -- but a researcher and writer with the time necessary

to read, read, read. Well, not enough time -- but more time than

the average doctor, that's for certain. If I've missed a clinical

trial that is critical in terms of it's prospective or randomized nature

and longevity of data collected that is valuable to acquiring a more complete

picture of outcome for hysterectomy or myomectomy, then I truly do want

to know about it so that I can obtain a copy of the complete paper and

read it.

Carla

[Guest guest]

hoffmannca@... wrote:

One a randomized two year study comparing the

morbidity between

myommectomy and hysterectomy.

Randomized? Women allowed themselves to be randomized between myomectomy

and hysterectomy? Please cite the source. I couldn't find it.

I'd like to know more about how this study was carried out and what the

end results were. This kind of randomization has come up repeatedly

in discussions on proposed research to compare uae with myomectomy and

hysterectomy and I've yet to hear anyone say it is viable. Even so,

I just heard yesterday that there may indeed be a randomized hysterectomy

vs. UAE trial planned or in progress in Europe. Trying to get more

information on this -- if anyone has the inside details, please let us

know.

Another from the Netherlands with a median 42

month followup on myomectomy, range 1 - 104 months.

Again, please cite the source. I'm not trying to be difficult --

I just find this terribly important to the discussion.

I miswrote when I put randomized and prospective

together (force of habit) .

however, there are a few there.

Again, please cite the source. I know of none and would like to read

the documentation published on these clinical trials.

You're right, in a surgical procedure, that

is a difficult aspect of a trial to put in. The morbidity study

was a chart

review. However, done well, chart reviews are not always bad. Depends

on the

study team, the docs and what their procedures/hypotheses/methods

are.

Chart reviews are inadequate and subject to bias -- as you do point out

per dependency on the docs/procedures/hypotheses/methods used. Also,

chart reviews are not acceptable evidence per insurance coverage guidelines

OR what HERS is calling for as acceptable. If that were so, then

there are several large retrospective reviews of UAE patients and their

outcome available and published.

As you know, weighing the validity of studies

is a study unto itself. It's

easy to cull the literature for "hard science" to support

nearly any stance.

It's become a new bible.

Agreed. Which is why it is very, very important to cite the source

and not state things generically. BTW, in using the search term "myomectomy"

one does indeed get over 600 citations listed. However, how many

are truly about myomectomy? If the term is used in the abstract,

it pulls up the paper. Many of those citations have nothing to do

with a study on myomectomy but use the term for some other associative

reason. Such as this one:

Radiology 2000 May;215(2):428-31

Fibroid-related menorrhagia: treatment with superselective embolization

of the uterine arteries and midterm follow-up.

Pelage JP, Le Dref O, Soyer P, Kardache M, Dahan H, Abitbol M, Merland

JJ, Ravina JH, Rymer R

A "prospective" study of UAE to evaluate "...the effectiveness and safety

of selective embolization of the uterine arteries in the management of

symptomatic uterine leiomyoma." A fairly decent paper that identifies

outcome -- including the need for several women to undergo subsequent myomectomy

after clinical failure of UAE to resolve their symptoms.

A lot of the 600+ papers are definitely related in some way to uterine

fibroids and treatment options, but few of the 600 are solely focussed

on a myomectomy trial or study. But some aren't really related at

all. Like this one:

Chest 1998 Aug;114(2):637-9

Migration and right atrial perforation of an Accufix atrial lead retention

wire following partial lead removal during myomectomy.

Gerstenfeld EP, Balarajan Y, Cooke R, Mittleman RS

Department of Medicine, University of Massachusetts Medical Center,

Worcester 01655, USA.

A 36-year-old man with a history of hypertrophic obstructive cardiomyopathy

presented to the emergency room with "stabbing" chest pain. He had undergone

dual-chamber pacemaker implantation in 1993 using an atrial lead

(Accufix; Telectronics; Englewood, Colo) and a myomectomy in 1996 during

which the distal portion of the atrial lead was removed. Digital fluoroscopy

revealed that the retention wire had migrated out of the remaining atrial

lead and perforated the right atrium. The retention wire was successfully

removed percutaneously. The need for complete removal of the retention

wire in the Accufix lead at the time of open-heart surgery is emphasized.

PMID: 9726760, UI: 98393361

Truly, I'm not trying to be difficult. I simply like to read the

information for myself and sincerely appreciate it when participants of

this group cite sources. I find it critical for my personal educational

growth (and for the continued growth and appropriate development of NUFF's

goals and mission in this world to promote research as well as viable alternatives

to hysterectomy to women) to have a broad perspective on the research that

has been done to date and to truly know about the information that is available

on outcome for any treatment option. It's difficult to catch up on

all of the research done to date but I do have the added benefit of not

being a physician -- but a researcher and writer with the time necessary

to read, read, read. Well, not enough time -- but more time than

the average doctor, that's for certain. If I've missed a clinical

trial that is critical in terms of it's prospective or randomized nature

and longevity of data collected that is valuable to acquiring a more complete

picture of outcome for hysterectomy or myomectomy, then I truly do want

to know about it so that I can obtain a copy of the complete paper and

read it.

Carla

[Guest guest]

hoffmannca@... wrote:

The study was in the December issue

of the American Journal of Obstetrics

and Gynecology "Comparability of perioperative morbidity between

abdominal

myomectomy and hysterectomy for women with uterine leiomyomas"

(Sawin et

al)

retrospective cohort study. not prospective. not randomized.

not looking at long term outcome at all.

Perioperative. "Pertaining to the period extending from the time

of hospitalization for surgery to the time of discharge."

Apparently this study showed perioperative morbidity for myomectomy

and hysterectomy at 39% and 40% respectively. Higher numbers than

I typically report based on collective retrospective review.

I particularly like the "Conclusion" identified on the abstract:

CONCLUSION: No clinically significant difference in perioperative morbidity

between myomectomy and hysterectomy was detected. Myomectomy should be

considered a safe alternative to hysterectomy.

Am J Obstet Gynecol 2000 Dec;183(6):1448-1455

Comparability of perioperative morbidity between abdominal myomectomy

and hysterectomy for women with uterine leiomyomas.

Sawin SW, Pilevsky ND, Berlin JA, Barnhart KT

A new paper that I hadn't had the opportunity to read yet. But

still, not prospective or randomized. Sorry.

carla

[Guest guest]

hoffmannca@... wrote:

The study was in the December issue

of the American Journal of Obstetrics

and Gynecology "Comparability of perioperative morbidity between

abdominal

myomectomy and hysterectomy for women with uterine leiomyomas"

(Sawin et

al)

retrospective cohort study. not prospective. not randomized.

not looking at long term outcome at all.

Perioperative. "Pertaining to the period extending from the time

of hospitalization for surgery to the time of discharge."

Apparently this study showed perioperative morbidity for myomectomy

and hysterectomy at 39% and 40% respectively. Higher numbers than

I typically report based on collective retrospective review.

I particularly like the "Conclusion" identified on the abstract:

CONCLUSION: No clinically significant difference in perioperative morbidity

between myomectomy and hysterectomy was detected. Myomectomy should be

considered a safe alternative to hysterectomy.

Am J Obstet Gynecol 2000 Dec;183(6):1448-1455

Comparability of perioperative morbidity between abdominal myomectomy

and hysterectomy for women with uterine leiomyomas.

Sawin SW, Pilevsky ND, Berlin JA, Barnhart KT

A new paper that I hadn't had the opportunity to read yet. But

still, not prospective or randomized. Sorry.

carla

[Guest guest]

Candace,

There are no prospective, randomized clinical trials that look at long

term outcome from hysterectomy or myomectomy. None. It is the only

statement that I've made from square one with this discussion. It is

what HERS, ACOG, and most insurance providers are requesting for UAE. I

don't believe I've altered my statement from the get go but you have

implied the presence of randomized and prospective trials in several

email without citing a single source. Here's my statement from the

original email re: HERS citations:

" There are no prospectively controlled, long term impact studies

completed on hysterectomy. None for myomectomy either. None currently

in progress either. "

It was this statement that you originally took exception to and

proceeded to indicate that there are indeed studies that meet this

statement's criteria.

I don't consider this a " oneupmanship " -- I consider it a valuable

exercise in researching and understanding the literature available.

Something that is truly difficult for all of us to do and something that

I am constantly trying to stay on top of -- woefully inadequately, I

might add. I frequently find myself making completely inaccurate

statements due to a poor understanding on my part regarding the

literature -- and welcome the input from others to help me to better

understand the issues and correct me.

I also know that there are hundreds of medical journals. Hundreds of

medical specialties. Any of them could have published a study I was

unaware of. Any of them.

I constantly worry over making false statements that were put together

from a perspective of the issues with incomplete -- and sometimes

completely inaccurate -- information. (Hence, my request for citations

from you.) Why do I worry? Because too many people have started to take

what I say and write as the " gospel. " It isn't. It's simply the

ramblings and perspective of one individual. An individual who views

herself as terribly flawed and not nearly as bright as some of the

researchers actually doing the work that is setting the pace in this

world for future medical care of the generations that will follow us.

Sometimes I'm flat out dumb as mud and just don't " get it. " Heaven help

me -- but gene research is a prime example of something that is

completely beyond my grasp. I desperately need the input of others to

help me to understand the broader issues that lay before us regarding

uterine fibroids and research. Desperately.

Bottom line on this issue for me? Unreasonable and unparalleled

expectations regarding research are being demanded of UAE when they've

never even been carried out for hysterectomy or myomectomy or myolysis

or ablation or any other treatment option for uterine fibroids. It's

the only point that I was truly trying to make. It's clear to me that I

missed my mark on this. Sorry.

Carla

[Guest guest]

Candace,

There are no prospective, randomized clinical trials that look at long

term outcome from hysterectomy or myomectomy. None. It is the only

statement that I've made from square one with this discussion. It is

what HERS, ACOG, and most insurance providers are requesting for UAE. I

don't believe I've altered my statement from the get go but you have

implied the presence of randomized and prospective trials in several

email without citing a single source. Here's my statement from the

original email re: HERS citations:

" There are no prospectively controlled, long term impact studies

completed on hysterectomy. None for myomectomy either. None currently

in progress either. "

It was this statement that you originally took exception to and

proceeded to indicate that there are indeed studies that meet this

statement's criteria.

I don't consider this a " oneupmanship " -- I consider it a valuable

exercise in researching and understanding the literature available.

Something that is truly difficult for all of us to do and something that

I am constantly trying to stay on top of -- woefully inadequately, I

might add. I frequently find myself making completely inaccurate

statements due to a poor understanding on my part regarding the

literature -- and welcome the input from others to help me to better

understand the issues and correct me.

I also know that there are hundreds of medical journals. Hundreds of

medical specialties. Any of them could have published a study I was

unaware of. Any of them.

I constantly worry over making false statements that were put together

from a perspective of the issues with incomplete -- and sometimes

completely inaccurate -- information. (Hence, my request for citations

from you.) Why do I worry? Because too many people have started to take

what I say and write as the " gospel. " It isn't. It's simply the

ramblings and perspective of one individual. An individual who views

herself as terribly flawed and not nearly as bright as some of the

researchers actually doing the work that is setting the pace in this

world for future medical care of the generations that will follow us.

Sometimes I'm flat out dumb as mud and just don't " get it. " Heaven help

me -- but gene research is a prime example of something that is

completely beyond my grasp. I desperately need the input of others to

help me to understand the broader issues that lay before us regarding

uterine fibroids and research. Desperately.

Bottom line on this issue for me? Unreasonable and unparalleled

expectations regarding research are being demanded of UAE when they've

never even been carried out for hysterectomy or myomectomy or myolysis

or ablation or any other treatment option for uterine fibroids. It's

the only point that I was truly trying to make. It's clear to me that I

missed my mark on this. Sorry.

Carla

[Guest guest]

Carla Dionne wrote:

> Bonnie Andrukaitis wrote:

>

> > Carla,Its Bonnie.I've been listening all morning.I think the fairest

> > thing to do for all of us is to invite Nora to this discussion.As you

> > have said,HERS has helped many women throughout the years.Its a pity

> > that there is this going on.Everyone would benefit if Nora was

> > involved in the discussion.

> > Bonnie

>

> I agree. Been trying to bring her to the discussion table for over a

> year now. Unsuccessfully. Doesn't answer my email and won't take my

> phone calls or return my phone calls. At all. If you have any ideas on

> how to bring her to this discussion, I'm open to them.

>

> Carla Dionne

Carla,Perhaps we should do a quick poll of everyone in the group who is in

favor of this and who is either a member of HERS or has asked for their

assistance.Perhaps if Nora knew that it was her members asking....

I am a member of HERS and I have asked for assistance many times.

Bonnie Andrukaitis

[Guest guest]

Carla Dionne wrote:

> Bonnie Andrukaitis wrote:

>

> > Carla,Its Bonnie.I've been listening all morning.I think the fairest

> > thing to do for all of us is to invite Nora to this discussion.As you

> > have said,HERS has helped many women throughout the years.Its a pity

> > that there is this going on.Everyone would benefit if Nora was

> > involved in the discussion.

> > Bonnie

>

> I agree. Been trying to bring her to the discussion table for over a

> year now. Unsuccessfully. Doesn't answer my email and won't take my

> phone calls or return my phone calls. At all. If you have any ideas on

> how to bring her to this discussion, I'm open to them.

>

> Carla Dionne

Carla,Perhaps we should do a quick poll of everyone in the group who is in

favor of this and who is either a member of HERS or has asked for their

assistance.Perhaps if Nora knew that it was her members asking....

I am a member of HERS and I have asked for assistance many times.

Bonnie Andrukaitis

[Guest guest]

Very good point. I called HERS last week for a referral because like you I needed a starting point. I in fact gave her the name of a very experienced physician in PA. She said she did not recommend him without giving me a reason. I am curious to know how doctors get on their list. Do these doctors make contributions to HERS? I will use the referrals she gave but I will continue to do my research until I find the right doctor for me. That is the best we could all do.

Hazel

RE: HERS citations

cdionne@... wrote:

> Who benefits from myomectomy referrals that come from HERS? Why are some gynecologists former doctors > on her list -- but now crossed off? Why won't she explain to women how she acquires the names of doctors she > refers women to? Why won't she explain why she doesn't recommend certain doctors? Just how does a doctor get> on her "list"? Why won't she answer these questions when women ask?

I called the HERS Foundation a few months ago. I did ask for doctor referrals, probably for the same reason most other women do. I needed a starting place. If you have no clue where to start in looking for a good gynecologist, a referral can be of great assistance, especially from an organization known to promote doctors who aren't likely to suggest hysterectomy. Otherwise, I would just be visiting doctor after doctor until I found one who fit my needs.

So, I called and asked for referrals in my area. There were none. She didn't have a single referral in the state of Indiana or Kentucky. Actually, she indicated that she didn't have any doctor names in the whole region. Because there were no doctors in my part of the country, I then asked how they obtain their list of doctors. She told me they hear from women who have had good experiences with a particular doctor, and they add them to the list. I don't know if they have to hear from multiple women, or if they add the name based on one patient's opinion. Either way, it's frightening. I mean, I know that any referral is basically an opinion, but a referral from an organization like that should be based on the same sorts of questions they tell US to ask our doctor: How many myos do they do in a year? How many turned into a hysterectomy? How do they control blood loss? Have they ever lost a patient? etc.

When I started searching for a doctor, the first doctor I went to suggested either myomectomy or hysterectomy. I scheduled the myomectomy. He seemed very anxious to perform the surgery and was annoyed when I would call back to ask him questions about it. While I was waiting for the date to arrive, I spoke to a friend of a friend (who used to be a nurse). She said there were only two doctors in the area she would NEVER see, and he was one of them. She said he was known to nick the bladder, make mistakes during surgery. Needless to say, I canceled. What if just one woman had a good experience with him though? Would he have made it to the HERS list?

B.

[Guest guest]

Very good point. I called HERS last week for a referral because like you I needed a starting point. I in fact gave her the name of a very experienced physician in PA. She said she did not recommend him without giving me a reason. I am curious to know how doctors get on their list. Do these doctors make contributions to HERS? I will use the referrals she gave but I will continue to do my research until I find the right doctor for me. That is the best we could all do.

Hazel

RE: HERS citations

cdionne@... wrote:

> Who benefits from myomectomy referrals that come from HERS? Why are some gynecologists former doctors > on her list -- but now crossed off? Why won't she explain to women how she acquires the names of doctors she > refers women to? Why won't she explain why she doesn't recommend certain doctors? Just how does a doctor get> on her "list"? Why won't she answer these questions when women ask?

I called the HERS Foundation a few months ago. I did ask for doctor referrals, probably for the same reason most other women do. I needed a starting place. If you have no clue where to start in looking for a good gynecologist, a referral can be of great assistance, especially from an organization known to promote doctors who aren't likely to suggest hysterectomy. Otherwise, I would just be visiting doctor after doctor until I found one who fit my needs.

So, I called and asked for referrals in my area. There were none. She didn't have a single referral in the state of Indiana or Kentucky. Actually, she indicated that she didn't have any doctor names in the whole region. Because there were no doctors in my part of the country, I then asked how they obtain their list of doctors. She told me they hear from women who have had good experiences with a particular doctor, and they add them to the list. I don't know if they have to hear from multiple women, or if they add the name based on one patient's opinion. Either way, it's frightening. I mean, I know that any referral is basically an opinion, but a referral from an organization like that should be based on the same sorts of questions they tell US to ask our doctor: How many myos do they do in a year? How many turned into a hysterectomy? How do they control blood loss? Have they ever lost a patient? etc.

When I started searching for a doctor, the first doctor I went to suggested either myomectomy or hysterectomy. I scheduled the myomectomy. He seemed very anxious to perform the surgery and was annoyed when I would call back to ask him questions about it. While I was waiting for the date to arrive, I spoke to a friend of a friend (who used to be a nurse). She said there were only two doctors in the area she would NEVER see, and he was one of them. She said he was known to nick the bladder, make mistakes during surgery. Needless to say, I canceled. What if just one woman had a good experience with him though? Would he have made it to the HERS list?

B.

[Guest guest]

I vote for inviting her jk

[Guest guest]

ladyjeanne@... wrote:

> I vote for inviting her jk

>

>

>

[Guest guest]

ladyjeanne@... wrote:

> I vote for inviting her jk

>

>

>