My experience with MRgFUS

OK ladies, I can't find the post I found here months ago.
I am surprised there is such a difference between HIFU and MRgFUS, all the info I saw had them interchangeable.
I am stunned someone got their insurance to pay for MRgFUS in 2010, how did you do that?
I found out about MRgFUS when I went to the mayoclinic site to get more info on a salpingo oopherectomy (sp?)... I am a breast cancer patient with like 20 flippin fibroids growing like weeds. I have like 20 baseball sized fibroids, on average, with some very small and one like 10 cm across. I have pics from the MRI posted online if that helps.
I had the crazy crazy period- from Thanksgiving to after New Years, so heavy I couldn't leave the house without blood to my knees. As a breast cancer patient, if they're taking my uterus they take my ovaries too. Also as a breast cancer patient I can't take hormone replacement therapy, so its the end of a sex drive, instant total menopause. I'd also have to change cancer medications probably, AI instead of Tamoxifen. But i have had a lot of BC pals who had this done, at all ages, and they're happy. No sex drive, but happy. Increased life expectancy, decreased chance of cancer so yeah, happy, relatively.
When I saw the options on the mayoclinic site I was floored when I found MRgFUS. Long story short, I was lucky that I was considered a candidate for MRgFUS despite the many fibroids and their large size. I was warned that the best I could hope for was a 20-30% reduction. And I had to have hysteroscopic resection for an enormous fibroid inside my uterus. My uterus was at least a 20 week pregnancy size, prolapsed, splayed, I mean bad. Baaad.
All the other options require a hospital stay and unavoidable pain. Lupron or the other drug, gondafin (?) would shut down my ovaries, and maybe improve my changes against cancer, but I wasn't looking forward to the side effects, or it's temporary nature. I feel very comfortable with lasers and all that sort of star trek stuff, and ALL the reports on MRgFUS say it is safe and effective.
At one point I was scheduled to have it at UCLA (I know I am not allowed to say a doctor's name here). But this doctor was pretty odd, scheduling me for the procedure without a consult or discussion. When I pressed for a discussion I found that he hadn't even looked at my scans and reports, didn't know my age, and although I was scheduled for the procedure in a week or so, he wanted me to start the drug for MONTHS to shrink the fibroids first. I also at one point inquired at a hospital in Israel that put me in touch with an intake person who didn't have even a small clue about what she was arranging.
I ended up at Cornell Weill in NYC, with a terrific Interventional Radiologist who carefully reviewed my scans, , met on his own time my gynecologist and surgeon, visited me in recovery, communicated with me by email, didn't require months of drugs, he just set up the procedure for two dates (OK it took a long time to get those dates) and did it.
It cost $10K, and I didn't even try to get my insurance to cover it- now I wish I had.
My crazy periods stopped after the hysteroscopy, but I had this huge bulging abdomen, all my other organs pushed aside, and my bladder looked like someone had their foot standing on it. I didn't have any urination issues, which is pretty funny considering. One doctor, I think my GP, said after I showed her my belly and she pressed on it saying, Oh yeah, that's your uterus, not your belly she said "Didn't you notice your stomach sticking out?" Oh really? As a 50 something woman who has always been overweight and likes cookies, no, my first thought hadn't been fibroids. Nor my second thought. Never occurred to me...
So although I could now leave the house, I couldn't put on my pants or button my cardigans, and the pressure was bad, and if anyone touched my stomach it hurt and forget bending over or doing pilates (which I sorely need due to the aforementioned cookies).
OK skip to the procedure.
What they don't tell you that you need to know:
-You can't wear a t shirt because your belly is in water, but you can wear a wireless bra. Much nicer than boobs akimbo.
-You have a bladder catheter, which ends up not really being an issue.
-*new technology* sometimes they put a gel in your rectum, I didn't have this but it may be helpful for some
-You're all inside the MRI, past your shoulders, for hours and hours. The longer you're in there, the more they can get done/vice versa
-You take oral sedatives, I took enough that I don't quite recall much except needing a break from being inside the MRI every so often. They say you have to be awake enough to follow instructions, but I think the instruction is just "stay still". and there's also the "stop" button we have in our hand that we have to be awake enough to use. Its kind of like hitting the snooze button when the alarm goes off and you were in a deep sleep.

Relief was immediate. Recovery was zero. OK I was a bit loopy the day after but that's probably because I insisted they dope me up like an elephant on Wild Kingdom.

I am trying to get the reports to see exactly which fibroids they were able to get and how much of them they were able to ablate. The fibroid as I understand it goes from being a hard fist of tissue to a spongy consistency, which in and of itself provides relief- I can just imagine my bladder pushing back and taking back it's space, all my organs pushing back against those big bullies inside me. My cardigan buttons right down to the bottom, with some space left over! The procedure was just a couple weeks ago, before and after Thanksgiving. I can bend over like a normal person now and have no excuse not to do Pilates. My 4 year old regularly bangs into my belly and it doesn't hurt. I am going a little nuts waiting for the report to see what week size my uterus is now, and I expect that it too is squeezing those ablated fibroids trying to regain it's normal shape and size.

This was never supposed to "cure" me, or rid me of all my fibroids, and the ones that were not treated are surely still growing at the rapid pace they have been for these years, fed by the Tamoxifen and my remaining estrogen, but to buy me some time so I could have freedom of movement and less pain and pressure, plus a healthier situation inside, as well as a better view for checking my pelvic area for ovarian cancer. I got all of that.

This kind of treatment must become standard of care. I had two kinds of non-invasive procedures, both considered "surgeries" but never had a cut on my skin, no recovery to speak of, outpatient, and the relief I sought. Again, I wish I knew how to get my insurance to cover it, and I guess its too late since I already had the procedure?

Oh I do have some spotting after my "period" (I think it's my period but I am 52 and perimenopausal, who knows) for the last two weeks, but I can leave the house and sit on a chair without worrying if I bled on it, I can button my pants and move about the cabin freely... I still have a sex drive, although I am probably not the most attractive in that sense...

Bonjour Rachel,

I was so happy to read your post.
In France, insurance will cover the cost of "MRI focused ultrasound". I never knew the USA could charge $10,000.00 for this procedure!

I have severe pelvic pain to the point of not being able to lie down for more than an hour or two.

If they "drug" me enough, do you think I could make 4 hours inside the MRI? I am only concerned about my present pelvic pain. I also didn't know my belly would be in water and that I would need a wireless bra. I also wear contact lenses, but I thought I would wear my eye glasses since they will start the procedure at 6:30AM! But in an MRI, maybe I have to wear the contact lenses. Did you wear compression stockings? If so, did they go to your thighs? What kind did you buy?

Thinking23- please tell me which hospital in France is doing this, I visit France each year and would consider having it done there.

About your pain, I can not speak for you, only you know your pain. Your belly is in the water, if it's distended like mine, and I wish they had my tush propped up in the air, because its hard on my lower back to lie on my stomach (back arch curve) on a normal day. Like you may know from floor exercise and yoga to lie on your back and flatten your spine against the floor, and here is the opposite. That was mostly what bothered me, I kept wanting to lift my lower back.
If you are as ticked off as I am about these fibroids, I'd venture to say that you'd handle your usual pain fine, knowing that they were zapping those !@!@$(#*&! things! I'd also gamble that the instant they hit one of them, you'd have relief from that pain. If you can bear it for even an hour you'd (likely, I don't know for sure) be free from the pain, and then be able to go for 4 hours no problem. The longer you stay, the less of your original pain you'd have. I don't know how they do it there, but I assume it is the same- if you can't stand it for the whole four hours, they stop and that's the end of that session. Again, my guess is that you will be dancing with joy.

I don't think the drug is so much a pain killer, because you have to be able to feel pain so you can tell them to stop. It's more about the incredible boredom of so many hours in the same position, and the kind of discomfort that comes from lying in that position. I kept trying to have even a little chat to break up the monotony. The first session I know I fell asleep a couple times. They weren't happy about that but I was.

And I am a total wimp by the way when it comes to pain. You don't feel ANY pain, and the instant you do, you press the button and it instantly stops. It's less painful than a mosquito bite or IV or blood draw stick, more like when your foot falls asleep and you wake it up- but its far LESS than that. So my guess would be that your experience would be more about relief from the pain you have than the pain you have.

Thank you for reminding me about the compression stockings. I had the same question, and I bought some (very funny what I bought, but I wont confuse you) but they supplied them. They are only knee-high. Kind of makes sense that they couldn't be thigh high because they have to have the catheter bag on your thigh. Any case, mine were very simple, comfortable, easy like knee socks, or half leg stockings if you ever wore them. I kept them, I am supposed to use them on long flights as well.

My procedure started at 7am, but it's not really starting at 7am... for one thing you aren't supposed to eat or drink before the procedure, so it's nice that it starts early before you'd be hungry I think. What they are really doing is getting you there early enough to give you the oral drugs and wait for them to take effect. They probably didn't actually start until 9am. I made them a little nuts because they were not taking effect fast enough, so I was pushing for more, more, more and boy was I dosed!

I wore my contacts for the whole thing, both times, no problem. I wanted to be able to see, and again, you're supposed to be awake. Of course you couldn't wear glasses in the MRI, even without metal, and there's no place for them with your face down. I just don't like not being able to see - additional to not being able to move...

Did I mention the shaving? You shave only your belly, the part in the water. I shaved a bit off the top of my girl parts just in case, if the hair happens to be a bit high.
Thank heavens I got that answered before I went out for a full Brazilian bikini wax... don't do it! That is, assuming its not already part of your personal style...

Thank you so much for your kind reply!

The company (INSIGHTEC) that makes the machine, has a website with its name plus dot com where all global locations are given for this procedure and many more procedures. The one in Bordeaux is the only one in operation now in France.

In France, they do ask the patient to get a full Brazilian bikini wax which is discounted in price for preparation of surgeries of all kinds.

Can one wear a T-shirt if you fold it up to cover your breasts? I am always cold! Can they cover your backside up with a blanket? I don't like being naked even in an MRI or IRM as they call it in France. I would not like to walk to the MRI in full view of anyone naked with a catheter attached.
I might be in pain, but I am very vain. I need a coverup!

Since I am easily bored, can I bring a small paperback book with me to read into the MRI? That would really help me pass the time. If your head sticks out of the machine does your hands stick out as well so one could turn the pages of a small paperback book?

How did you stand the noise of the MRI for all those hours? Did they give you earplugs? Every time I am in an MRI (7 times over the many years), I bring an eye shade and wear plenty of lavendar essential oil to keep me calm.

It was interesting to read that you did not expect a full "cure". I have been debating whether to go or not to go on January 11th, as some doctors say I need a hysterectomy and others say the fibroid cannot cause me this pain and it must be something else! With such divided opinions, no one really knows what to do! I have heard this for over 16 years by doctors in the USA and in Europe. I have used osteopaths and acupuncture
weekly to keep me going.
I experience severe nerve pain since having a hysteroscopy on Sept. 5, 2012. I was always in normal pain prior to this, but this pain now has been elevated to "brutal status". I even fainted on a local sidewalk and sustained a head injury requiring stitches on Oct. 28th. Today, I cannot sleep over one or two hours before the nerve pain wakes me up again.

Maybe the fibroid is pressing on nerves, and sonifications would help to relieve the nerve pain.

You gave me the idea that maybe it is ok to try this method even if it is not a "full cure". Other women have tried this and then gone on to something else if it did not work.

Less nerve pain would improve my life! If my large fibroid would react positively to the procedure, this could give more room to the surrounding organs which might be forced now to press on a nerve.

Again, thank you so much for your reply. Most Americans want a "full cure", but by your way of thinking, the procedure did add to your wellness.
Now I am thinking this way too! So I will go on January 11th.

I was also thinking that one of those "doctor gowns" that is put on in a doctor's office in the USA might work. The opening can be in the front instead of the back which would allow your belly to be in the water but your backside covered. What is your opinion on this subject? lol

I'm in transit so this may be not as great a response as I'd like to give you,

No chance to read a book. Or even listen to music. But on the other hand, the other times I have had MRIs or PET CT scan, I was thinking about stuff. I wasn't thinking about anything for MRgFUS, and I actually liked it better when they were making the noises, because I knew something was happening (and my anger at the fibroids was thrilled to know they were getting fried with no bother to me). It was the silences in between that bothered me. What's going on? What time is it? How much did they get? Did they all go for coffee? So I would ask and the nurse who was sitting there the whole time would answer me.

Yes, hands over your head, or beside, but they are above, sticking out of the MRI.


Of course I'd love a full cure, but I don't see that happening in any scenario. There's a chance the fibroids will go away at menopause, I'm hoping for that!

Phillips also makes one of these machines, I saw it was being used in Germany. Insightec is the only one in the US. Many thanks for the updated French information.

No chance for a folded t shirt but yes they do have a robe and a blanket. Absolutely not walking around naked. They want you comfortable so you can be still and they can get to work.

That is wild about the bikini wax. But I dont really understand, now that I know where my uterus is, its not near the pubic area, and the pubic area is no where near the water, and that's the reason for removing hair, that it can be affected by the sonications causing burns. Like, you don't have to shave your head or arms or legs, so why would they need the pubic area? And the discount? they have an arrangement with a salon or do it at the hospital?

You can probably bring the eye shade, although I'd think it would be uncomfortable after a while, careful with the oil! You don't want any creams or lotions messing with the water and the sonications. I guess you could have it on your face, behind your ears and such. I wore moisturizer....

The whole thing is so innocuous, less than acupuncture, if its free then I can't see a reason not to try it! Nothing to lose

Please let me know how it goes for you?

Again, thank you for your kind reply. I will keep you informed about how they do it in France.

I underwent the procedure for the MRI focused ultrasound to ablate my one large fibroid on January 11, 2013.

I am an American expat living in France.
There are no locations in Paris. I took the TGV from Paris to Bordeaux where there are two locations.

If you are coming from the USA to use the French locations, you can fly to CDG airport and catch the TGV train to Bordeaux directly.

There are two locations in France that do this procedure.

I did it at a private clinic in France. They use the Insightec machine. You can sign up for the procedure on line. You can translate everything on the website from French into English by using google translate.

Their website lists their requirements. You must send them your CD of your MRI of your fibroid. They select patients based on the stated criteria and notify you of your turn. They do this procedure only once a week. You have a very good chance of being accepted. I am 66 years old and they took me! This is a very down home clinic and easy going place! No fuss but an excellent team is there for you.

In the Bordeaux public hospital, they also do this procedure. They use the Philips machine there. Philips is a different market, the only information about that is from the Bordeaux hospital.

French social security covered the entire cost! If you don't have that insurance, someone said it might cost 1500 euros.

I prepared myself for the procedure. They wanted a brazilian wax so I did that myself. I also bought compression stockings (I bought some that went up the entire leg...I didn't want to take any chances).

I also had injections into an inflamed tendon before the surgery and into my spine. I doubted I could make it in a prone position without those injections.

The first thing they ask you to do is get undressed and to put on the compression stockings and the hospital gown backwards so that the front is open.
Next, drink at least one liter of water!!!
You will know why soon.

Next comes the doctor who inserts the catheter, then the assistants with the gel up your rear end. This was no big deal. It did not hurt at all. It is just the thought that makes you wince.

Next they wheel you into the room with the IRM machine. In France, instead of MRI machine, they call it the IRM machine.

This next step is more acrobatic. You need to position your stomach in the "swimming pool" which is cold water and gel. I guarantee you that your stockings will get wet as well as your gown. They will cover you up with blankets and strap you into the bore. Next comes the IV into one of your wrists, and the ring with the stop button will be placed in your other hand.

The pain was severe for me. I felt like I was in a torture chamber! The sonifications were blasts of fire that felt like I was being branded with the logo of a cattle owner. I felt so dry. I had no salvia left. I needed water but I did not stop the procedure. I kept thinking that I just want to make it through this and have it over as quickly as possible.

I wanted to know what time it was and how much longer I had to endure this pain. It was to last until noon, but at 10h30 they stopped it. They burnt 75% of the fibroid by then since I did not stop the procedure.

After it was over, I got up and got dressed. My friend took me to have a wonderful lunch with some very good Bordeaux wine. After that, we both slept until around 19h00. We then woke up and went outside to walk and then to dinner.
The next day we took the TGV back to Paris.

I have no pain. I am not tired. I am going dancing tonight! I did it, and so can YOU.