Re: my gigantic fibroid

[Guest guest]

Hi Minna,

Since you are checking into NYC docs, I really recommend that you

participate in Dr. West's online chats. He is a fibroid specialist

in NYC and believes that no bugger is too big for a myo procedure.

If you have done your research you must know that being a top knotch

gyno is quite different then being a top notch fibroid specialist.

One thing that tells me that this doc knows what he is doing is his

opinion on Lupron, a drug I find suspect. I asked him about docs

that use lupron to shrink fibroids prior to myo and he said that he

would be suspect of any doc using lupron in this way (even lupron in

general). He told me that lupron has the effect of turning the

fibroid into a jello like substance making the removal more difficult

and often causing surgeons to miss smaller fibroids for removal at

that time. Here is his website. You have to sign up to participate

in the chats which he has weekly. I also asked him about adhesions,

a concern of mine, and he said that well skilled surgeons do not

leave this little " gift. " I wish you the very best!!

http://www.repmed.com/index.html

suz

> I had an MRI last week and today my gynecologist told me (on the

phone) I have two fibroids; one " gigantic " and the other small.

> I've been to five gynecologists and stick with Blanco because my

Oxford insurance covers it and he's affiliated with a top hospital. I

liked Stanley West and probably would have had him do a myo, if not

for the fact he didn't accept my insurance and charges $10,000.

[Guest guest]

Hi Minna,

Since you are checking into NYC docs, I really recommend that you

participate in Dr. West's online chats. He is a fibroid specialist

in NYC and believes that no bugger is too big for a myo procedure.

If you have done your research you must know that being a top knotch

gyno is quite different then being a top notch fibroid specialist.

One thing that tells me that this doc knows what he is doing is his

opinion on Lupron, a drug I find suspect. I asked him about docs

that use lupron to shrink fibroids prior to myo and he said that he

would be suspect of any doc using lupron in this way (even lupron in

general). He told me that lupron has the effect of turning the

fibroid into a jello like substance making the removal more difficult

and often causing surgeons to miss smaller fibroids for removal at

that time. Here is his website. You have to sign up to participate

in the chats which he has weekly. I also asked him about adhesions,

a concern of mine, and he said that well skilled surgeons do not

leave this little " gift. " I wish you the very best!!

http://www.repmed.com/index.html

suz

> I had an MRI last week and today my gynecologist told me (on the

phone) I have two fibroids; one " gigantic " and the other small.

> I've been to five gynecologists and stick with Blanco because my

Oxford insurance covers it and he's affiliated with a top hospital. I

liked Stanley West and probably would have had him do a myo, if not

for the fact he didn't accept my insurance and charges $10,000.

[Guest guest]

I thought I would comment on a few of the recent posts. As you know, there

is some disagreement between gynecologists and interventional radiologist

about UAE. I am a gynecologist, but I think UAE is an absolutely appropriate

procedure for many women with fibroids. To be fair, and perhaps make the

radiologists mad at me too, I think some women who are treated with UAE

would be better served with a myomectomy. Both procedures have their place.

Although there are no long-term studies of UAE for fibroids, there is plenty

of data over the past 20 years about embolization used for uterine

hemorrhage in women following childbirth. There is nothing to even remotely

suggest that embolization causes cancer in these women. Embolization has

also been used to treat other conditions in women and men for many years and

there are no reports of it ever causing cancer.

As for UAE causing the fibroid to " rot " - I do not believe this is an

accurate comparison and is a bit of a scare tactic. If you imagine that you

bump into a table really hard, you will form a large black and blue bruise.

This area is really dead tissue and blood cells. Over time, white blood

cells come in and gobble up the dead tissue and the bruise goes away. The

same process occurs with UAE - the fibroid tissue dies, but the body clears

away the dead cells, the area heals and leaves scar tissue. There are very

rare reports of women needing a hysterectomy following UAE for

" degeneration " - perhaps 5 women out of the approximately 30,000 women who

have had this procedure performed.

Re: Leila - I agree with Roma that a high potassium level has nothing to do

with fibroids and should be checked by a nephrologist or competent

internist.

As for the post about the pregnancy and UAE story on-line, I feel that some

of this information is inaccurate, misleading and self-serving (the site is

sponsored by the company that makes embolization particles). I plan to

e-mail the company directly to complain.

Specifically, the site states, " other fibroid treatments - which include

laparoscopy, myolysis, and cryomyolysis - often make it very unlikely or

impossible for patients to become pregnant after treatment. They either

disrupt the delicate tissue of the uterus too extensively, or they leave

patients at risk for scarring or disruptive excesses of fibroid tissue in

the uterus. " " UFE enables precision treatment of fibroids without surgery. "

There are numerous publications of pregnancy following laparoscopic

myomectomy with excellent results, so the above statement is untrue.

Myolysis should be used for women who do not wish fertility because it can

cause scar tissue. UFE is not " precision " treatment - in fact one of the

problems with it is the risk of mis-embolization - particles that travel to

other areas. And, one of the risks is mis-embolization of the ovaries

leading to premature menopause in about 5% of women. Talk about a

devastating side-effect for a young women interested in fertility!

Well, so much for my 2 cents. I hope you all have a happy holidays.

Bill , MD

Re: my " gigantic " fibroid

Dear Minna,

I sure wouldn't go with Blanco if those are his feelings about myo...(that

it would be a morbid operation.)...nope, keep searching.

I have two large fibroids and am scheduled for focused ultra sound in Boston

in January.

It is hard for me to imagine what will become of the fibroids, but I don't

think they " rot " . This term was used by Dr. Mitch Levine who is a very well

respected surgeon in Arlington. He told me the same thing...that UAE and

focused ultra sound would leave rotting tissue in the body. Instead, I'm

thinking about what happens to a wart when it's cauterized...it shrivels and

dies. I hope that's what will happen to my big ol' fibroids. Since they

don't cause me heavy bleeding, I really just want shrinkage to relieve the

tremendous pressure they're putting on my bladder & rectum. Hopefully a

little shrinkage will relieve my back pain too.

I hope you can find the help you need, hopefully within the realm of your

insurance coverage. Best wishes~

Minna Packer wrote:

Blanco is so anti UFE that he even said he wants to prevent me from having

one because he doesn't want for my uterus to " rot " . I replied that if he was

willing to give me a myomectomy, I'd consider surgery, but won't under any

circumstances (except cancer) have a hyst. He demurred (this was before my

MRI and said he'd do a myomectomy, but that with my large fibroid it was

going to be a morbid operation and not advisable.

I've been to five gynecologists and stick with Blanco because my Oxford

insurance covers it and he's affiliated with a top hospital. I liked Stanley

West and probably would have had him do a myo, if not for the fact he didn't

accept my insurance and charges $10,000.

I think Blanco is basically a good doctor (20 years as a gyno at New York

Presbyterian and director of Uro-Gynecology and Pelvic Reconstructive

Surgery) but very conventional in regards to fibroid treatment. He

recommends myo for women who want kids and are under 40 something,

hysterectomy for all the others who have big fibroid, have kids and are in

their late 40's and older. He thinks UFE is a potentially dangerous

procedure, telling me to ask my IR, " have there been any long term studies

(10+ years) on women who have had UFE and the incidence of uterine cancer? " .

He has blatantly said to me, " You need a hysterectomy " .

[Guest guest]

Dr. ,

Thank you so much for your comments. I am just curious, from what I

have read certain types and positions of fibroids are more

appropriate and respond well to the UFE procedure. Do you have any

comments along these lines?

Regards,

suzanne

> As you know, there is some disagreement between gynecologists and

interventional radiologist about UAE. I am a gynecologist, but I think UAE is an

absolutely appropriate procedure for many women with fibroids. To be fair, and

perhaps make the radiologists mad at me too, I think some women who are treated

with UAE would be better served with a myomectomy. Both procedures have their

place.

[Guest guest]

Hi all,

Does anyone know how small the fibroids have to be for the hysteroscopic

procedure? It sounds like a walk in the park compared to the abdominal

myomectomy

to me!!

Pearl

[Guest guest]

The fibroids have to be inside the uterus(submucousal), preferably

on a stalk and usually not larger than 5cm, which is less than 2

inches. Yes the recovery is very easy - I was in the hospital at

8:00am and home by noon when I had mine done. I had no pain at all

after I came home and was well enough to work the next day, though I

took the day off and ending up going shopping instead.

> Hi all,

> Does anyone know how small the fibroids have to be for the

hysteroscopic

> procedure? It sounds like a walk in the park compared to the

abdominal myomectomy

> to me!!

> Pearl

[Guest guest]

Thank you for that info. Mine is too big for that procedure. I guess I will

go through with the myo on Jan 7th. I am looking forward to it on some days and

other days I think what the heck am I doing...maybe I should wait. I talked

to the surgery coordinator today and I thought the price quoted was really

high for the procedure I do live in San Francisco and it seems like everything

costs more here but....`($25,000)....does that sound right to you all? I also

talked to a friends mom today who is an ob/gyn doc and she said it's very

important to allow 21 days of healing after the abdom myo even if I am feeling

like

going back to work sooner. She said physiologically that it takes the body 21

days to go through the healing process so Im going to do that but geez and

wanted to share that info with the group. Thoughts on that?

Thanks all!!

Pearl

[Guest guest]

Hi Pearl-

I think that I am in the minority as far as the size of resected

fibroids go, as mine was 9 cm., about the size of a large softball.

I had an MRI done beforehand but the submucoasal bugger

didn't show up on it, so my doctor had no specifics although he

suspected that " something " was in there. It was pendunculated

and he was able to remove it in sections. I only needed pain

medication for a few days, though I had to take things VERY easy

for quite awhile afterward, as I was still anemic and had a host of

other medical stuff going on. If you are in good shape otherwise,

I don't see why a quick recovery shouldn't happen.

My surgeon was faced with an unexpectedly large fibroid and

was able to remove it vaginally even though I had a heavy period

at the time. It can be done, but like any operation, the skill of the

doctor rather than statistics factored heavily here. FWIW, my

surgeon was Dr. Jody Blanco in NYC, whose name has

surfaced recently in these pages.

For the anemic LOL, I was very anemic from all of my flooding

and required a month of iron infusions pre-surgery to reach a

hemoglobin of 10.5. My ferritin was 12, and I was exhausted. A

resection and a D & C later, all I had post-surgery was some light

staining. My periods have been light to moderate since. Seven

months later, my ferritin is 41 and I am taking iron pills again

after a break from it; my other CBC values are great. If insurance

will pay for it and/or one can afford it, I strongly recommend iron

infusions to bring up blood values relatively quickly and safely

before the trauma of surgery.

I wish everyone here a healthy and Happy New Year. To the LOL

who are contemplating/facing surgery to relieve fibroid suffering,

may 2004 bring relief and a return to good health!

Jan

Pearl wrote:

> Does anyone know how small the fibroids have to be for the

hysteroscopic procedure? It sounds like a walk in the park

compared to the abdominal myomectomy to me!!<