Re: Re: FUS...the small print

[Guest guest]

Perhaps one of the other women on this list, who has also had FUS, told me that.

Or maybe it was the radiologist...I know I spoke with Minna So, MD right before

my procedure at Brigham & Women's. She told me that the sonifications were

delivered very carefully...the impression I got is that it is very technical

and they are aiming very carefully. Here is a paragraph from the research

consent form:

During the treatment, a number of short ultrasound pulses will be aimed into the

fibroid to heat up the fibroid cells. This amount and type of heating causes

damage to the cells, and if the cells have enough of this kind of damage they

will die. During each ultrasound pulse, more MRI pictures will be made to see

where the heating is taking place. The doctor will ck. the pictures after each

pulse to make sure that the treatment is occuring as it should.

Here is another paragraph from the consent form I signed:

FUS may cause redness of skin, firmness in the area of treatment, pain, skin

burns, bleeding and/or brusing, abdominal pain and leg pain. These effects would

be visible immediately after treatment. In most cases, it is expected that

redness, firmness, pain, minor burns, fever from treatment will resolve within

10 days. More serious skin burns, which can cause ulceration of the skin, skin

puckering, and scar formation will take longer to resolve. Additionally, this

treatment may cause damage to normal tissue due to incorrect aiming of the

ultrasound beam, or nerve damage (damage to nerves in the path of the ultrasound

beam.) However at this time it is not known how long these effects might last.

Many side effects go away shortly after the FUS procedure is stopped, but in

some cases side effects can be serious or long lasting, or permanent. It is

expected that most of these effects will go away within the follow-up period. In

an earlier study using this technique, these problems

occurred less that 6% of the time. It is possible that your condition may be

worsened by this treatment. With uterine artery embolization there have been

rare cases of diffuse uterine necrosis (death of uterine tissue) leading to

hysterectomy. This has not been seen with FUS treatment, but because of the

small number of subjects treated to date, we cannot exclude that this might be a

rare risk.

So...needless to say, it's not easy to sign the papers after reading the small

print. But isn't this true of any procedure? I experienced none of the above

after my FUS treatment. No skin reddness, no burns or even tenderness. I did

however experience permanent nerve damage after my c-section. Today, 20 yrs.

after the c-section, I have a thick vertical scar and no sensation at all near

the scar. My low abdomen has never looked the same.

Years ago they automatically removed a breast if they found cancer. Now they

remove a lump only. I feel like FUS will be the non-invasive option for the

future. Someday our daughters won't have to be sliced open to rid themselves of

fibroids. At least that is my hope and one of the reasons I participated in this

study. ~

Carla Dionne cdionne@...> wrote:

>

> I was worried about this possibility before my FUS procedure and

questioned the radiologist at length. They only aim for the center of

the fibroid. There have not been any instances so far that they've

burned surrounding tissue.

Who, specifically, told you this? If you are not comfortable with

naming names online, please email me. You had your treatment at

Brigham & Women's, right?

Carla Dionne