RE: Uterine artery embolization

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RE: Uterine artery embolization - 2/20/2012 5:43:30 AM

kalikshama

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quote:

Why is your doctor not offering you a myomectomy? You have fibroids not cancer. A fibroid or fibroids are removable without amputating your uterus or shutting it down.

I'm assuming because I'm with the VA and myomectomy is more complicated. Or because I don't want children.

American College of Obstetricians and Gynecologists (ACOG) recognizes this procedure ONLY for women who want to have more children. Apparently, the rest of us have to learn to fly kites without our uterus.

In addition to UAE, my GYN did also offer hysterectomy, which I'm not considering, so didn't mention it in my OP.

I'm with you on this:

quote:

Before considering a hysterectomy, make sure the consent to operate is given by a well informed you. So many women just say, oh chop it out, its a nuisance and I don't need it anymore. Doctors tell women that having their womb removed is inconsequential. It’s a fantasy dished out to women every second of every day. Are you aware that the uterus is a hormone responsive sex organ and that removal of it impacts every cell in a woman’s body and increases her risk of heart disease three times that of women with a uterus. Are you aware that when the uterus stops working or is removed, the ovaries normally shut down within 2 years? Please watch this before making any decisions http://www.hersfoundation.org/anatomy/

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RE: Uterine artery embolization - 2/21/2012 4:13:46 AM

ShaharThorne

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I had a hysterectomy back in 2004 after years of heavy bleeding and popping ovarian cysts. Kept the left ovary so I don't have to do HRT. I did get an infection, but that is one of the risks that I was willing to take. I don't regret getting it because it meant that I can be pain free without resorting to birth control that could be dangerous to my health.

All I can say is to educate yourself to the procedures that are on the tables. ALL SURGERIES have risks involve, there is no way getting around that.

Good luck with what you decide, Kali. It is a difficult decision and one that has to be made with your overall health in mind.

< Message edited by ShaharThorne -- 2/21/2012 4:14:49 AM >

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RE: Uterine artery embolization - 2/21/2012 6:39:07 AM

MariaB

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Kalikshama, You should be proud of yourself for doing your homework so thoroughly. We should never go ahead with a none cancerous removal of the womb or/and ovaries without investigating all the pros and cons. The aftermath of such operations are dealt with by 'General Practitioners' who are guided and educated by the giant pharmaceutical companies. Most are clueless.
When I told my gynecologist that he wouldn't be removing my ovaries and pointed out, that him telling me it would safeguard me from future ovarian cancer was misleading because you can still get ovarian cancer in the surrounding tissue, he was embarrassed

but supportive.

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RE: Uterine artery embolization vs Focused Ultrasound ... - 7/3/2012 2:20:52 PM

kalikshama

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Fingers crossed, but it appears that the VA will pay for me to have Focused Ultrasound (FUS / ExAblate) done at Brigham and Women's, which is very well regarded here in Massachusetts.

It would be SO NICE to be able to stop working around my bladder, which is tiny due to the fibroid squishing it.

quote:

ORIGINAL: kalikshama

I'm considering Focused Ultrasound (FUS / ExAblate) which is noninvasive, but new, so probably not offered by the VA.

http://www.fibroids.net/fibroids.html

MRI-guided focused ultrasound surgery (FUS) is a noninvasive treatment option for uterine fibroids that preserves your uterus.

This procedure is performed inside a specially crafted MRI scanner that allows your doctors to visualize your anatomy, and then locate and destroy (ablate) fibroids inside your uterus without making an incision. Focused high-frequency, high-energy sound waves are used to target the proteins in fibroids, until they are denatured and cell death occurs, thus destroying the fibroids. Concurrent MRI allows precise targeting of tissue and monitoring of therapy by assessing the temperature of treated tissue. A single treatment session is done in an on- and off fashion, sometimes spanning several hours. The advantages of this procedure are a very low morbidity and a very rapid recovery, with return to normal activity in 1 day, but its long-term effectiveness is not yet known. Presently, the procedure is not recommended for women who desire future fertility. See a video about focused ultrasound treatment for fibroids.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036536/

http://www.reuters.com/article/2009/01/28/idUS181078+28-Jan-2009+BW20090128

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RE: Uterine artery embolization vs Focused Ultrasound ... - 7/3/2012 11:35:55 PM

LafayetteLady

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Good luck. I hope everything works out for you.

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RE: Uterine artery embolization vs Focused Ultrasound ... - 7/4/2012 2:43:59 PM

seleya

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I don't know who you are going to see but Dr Walsh at B&W is amazing. He performed my myomectomy last year. Good luck with your procedure. :)

Sometimes, the staff knows how to get procedures approved - it's often a matter of knowing how to present it to the insurer.

TBH, it is none of my insurance company's business if I wish to have children or not - I went to the doctor to have benign but troublesome tumors removed and had no wish to have a perfectly normal, beneficial organ removed in the process. Recent studies have shown so many long term side effects from hysterectomy, one would think the insurance/medical community would get their heads out of their asses about it. /soapbox

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/18/2012 6:41:30 AM

kalikshama

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I checked with the VA to see if the consult was in the system and it wasn't yet. The person in Women's Health couldn't give me the procedure for getting a consult and said someone would call me, which she didn't, so I had to track her down. No one could give me the number I needed to make an appt at B&W. I am used to the red tape at the VA which happens whenever I need to do something out of the norm so persevered.

Then I called Brigham & Women's and endured just as much rigmarole - to my astonishment, no one there could easily give me the number either. There was no such dept as GYN /Ultrasound / Ablation which is what the nurse from the VA told me to ask for. GYN/U referred me to Cardiology, who sent me to Radiology, who sent me to a woman who sent a text to someone who knew where I should call, which turned out to be Infertility.

After hours on the phone, I have an appt for a consultation w Dr. Anchan next Thursday :)

Then I had to call the VA back and give this info to the nurse so she could complete the consult approval. Of course, at 3:58, their phones were shut off so I had to call the next day.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/18/2012 7:00:28 AM

LadyHibiscus

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Holy MOLY. Well, progress!

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/18/2012 8:38:48 AM

mnottertail

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A uterine artery embolism?

Your Wallahoovia is gonna blowt the fuck up? Dayum.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 10:42:28 AM

kalikshama

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I spoke too soon. My primary doctor just called and said that while she will put me in for this procedure, it is highly unlikely to be approved. Patients who are offered invasive gastric surgery but want a less invasive procedure that the VA does not offer are denied as well.

I'm really upset about this as I'd been getting the green light for weeks - if I'd been told there was no chance from the beginning, I wouldn't have become emotionally invested in it.

The consult alone is $722 and I'm not yet able to get the price for the procedure. It's possible that my parents would pay for it, not that I want to go there.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 10:44:34 AM

mnottertail

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Immediately find the office of the VA ombudsman at the hospital, and go chew out your local VA rep as well...you could be pleasantly surprised.

Full frontal assault, private!!!!!!

< Message edited by mnottertail -- 7/20/2012 10:48:03 AM >

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 11:23:34 AM

kalikshama

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I was an airman and we didn't assault...but I did get the number for Patient Advocate.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 12:11:28 PM

kalikshama

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There are clinical trials of UAE vs FUS at the Mayo Clinic in Minnesota and Duke University in NC. The Duke study is actively recruiting African American women. The Mayo study does not give participants an option of choosing the procedure. I might be more comfortable having UAE done there than at the VA. However, I'd have to assume all the costs. There is some grant money for FUS, but I'd have to pay out of pocket and be denied twice before they'd reimburse me. Travel and lodging is not covered either. Billing was not able to give me a price and I'm waiting to hear back from Estimating.

I've been enjoying talking to Minnesotians :)

http://clinicaltrials.gov/ct2/show/NCT00995878?term=uterine+fibroids&rank=7

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 2:00:14 PM

mnottertail

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I am like 300 mi from the Mayo.

OK, can you find a place in the country where they cannot do the nasty procedure, but the one you want? if I understand it, it is vein ablation like is done in vericose veins, but done to your money maker so you dont want that cobbled up.

cuz thats one way, but by god I would work the fucking tits off the patient advocate, and the va rep first to exhaust those thingies. (Even if they are moobs).

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 4:53:59 PM

kalikshama

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I want Focused Ultrasound (FUS), not the traditional ablation. To confuse things, the FUS device is called ExAblate.

Focused ultrasound is a completely noninvasive way to treat uterine fibroids. Using this treatment modality in conjunction with image guidance, the physician directs a focused beam of acoustic energy through the patient's skin, superficial fat layer, and abdominal muscles to thermally coagulate the fibroid tissue, thereby destroying it without damaging nearby tissue or the tissues that the beam passes through on its way to the target. Uterine fibroids can be visualized using ultrasound or magnetic resonance imaging (MRI).

While calling Brigham & Women's to get the price (I had to tell the 3rd woman, "That's not the right price; this procedure is at least $10,000) I found out that there is a study there as well and if I'm accepted won't have to pay for a thing. I have an appointment with the doctor who runs the study on August 14 and cancelled my appointment for next week, and have put my Force the VA to Pay campaign on hold.

FUS at B&W is $15 - 20,000.

At Mayo it's $13.8 - $15.6 K and UAE is $28 - 32 K (IOW, the VA doesn't want to refer me for a procedure that costs half of the one they are recommending >_< )

When I got the $13.8 - $15.6 K quote from Mayo I asked if that was for the FUS or UAE, she told me they were the same procedure and I had to explain to her that no, they were not. She later called me back with the UAE price.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 4:58:31 PM

kalikshama

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The nurse from the Mayo study told me the doctor in charge of the study wrote this book, which is available at my library. It is Dr. Stewart's opinion that hysterectomy is grossly over prescribed for fibroids (although it is necessary in some cases.)

Uterine Fibroids: The Complete Guide (A Johns Hopkins Press Health Book)

You've called in sick today. Your back and legs hurt. Your abdomen is bloated and more than a little uncomfortable. You are having your period, and the bleeding is so heavy you can't even think about leaving the house. You have uterine fibroids.

One in every four women see their lives affected by uterine fibroids, which can cause heavy bleeding, abdominal bloating, pain, and infertility. The symptoms can be mildly annoying or life altering in severity. Until recently, hysterectomy was the only way to cure fibroids, and each year more than 200,000 hysterectomies are performed in the United States to treat these noncancerous growths.

But hysterectomy isn’t always the best solution. The procedure can be devastating for women who were planning to get pregnant, and it is a significant surgery for anyone. In this comprehensive and compassionate guide, Dr. Elizabeth A. Stewart helps women understand the treatment options now available.

An internationally recognized expert on fibroids, Dr. Stewart describes all the available medical and surgical treatments as well as alternative and complementary therapies. In addition to hysterectomy, she explains uterine artery embolization (UAE), noninvasive focused ultrasound (FUS), and innovative hormone treatments. Simple diagrams and photographs illustrate the condition—and its treatment.

Dr. Stewart encourages women with fibroids to learn as much as they can before choosing a treatment plan. Providing the most reliable and up-to-date information on this very common and difficult disorder, she helps women understand uterine fibroids and make the best possible choices about their care.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 6:36:06 PM

kitkat105

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Well this sounds promising! I'll have my fingers crossed that you get into the study!

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/20/2012 8:11:41 PM

Lucifyre

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Wow Kali, you are so smart and so strong and brave!
I don't know what the answer is for you. Though I myself have had some female issues for a very ong time, I can't even begin to imagine what it would be like to have such difficult things as you to deal with.
You are in my thoughts, I hope it all works out for the best for you. Keep pressing for what you need! You are obviously strong enough to get exactly that.

Get better soon hun. Hugs to you!

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/21/2012 7:01:05 AM

kalikshama

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Thanks all! I'm also tempted to wait for the fibroids to shrink upon menopause. If only I knew when that would be...

The one risk with the FUS that concerns me is the (small) potential to injure adjoining organs. I'd be really pissed off (ha!) if my bladder got damaged, as relieving pressure on my bladder is a major impetus behind my desire for the procedure.

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RE: Uterine artery embolization vs Focused Ultrasound (... - 7/21/2012 7:21:58 AM

Lucylastic

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thought this was a good site Kali... Im having trouble again, so Im gonna be seeing my doc next month. Gonna talk to him about this.
I do NOT want surgery again, at least not a Hysterectomy, he left mine intact last time, he may not do so again.
http://www.insightec.com/Uterine-Fibroids-Studies.html
Good luck hon, keep at them,

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