inquisitive geek with fibroid tumors ™ blog

19 Responses to “New treatment uses sound waves to shrink uterine fibroid tumors”

1. Ruth Says:
   September 21, 2006 at 5:48 pm

   I’ve been investigating ExAblate as a potential candidate for over a year now, and finally had my consult at [Virtua in NJ], with a 2nd opinion at Weill-Cornell in NYC. They both say I’m awfully big, so need to take 3 mos. of Lupron to shrink my 5-month gestational-equivalent uterus down enough so they can really attack the tissue efficiently. Was told Lupron pre-treatment is standard practice in Europe, Israel & Japan where they’ve been doing ExAblate for many years already, but not US yet. Still looking at 4 hours each of lying sedated, catheterized & motionless on my “rocky” belly inside an MRI, on 2 separate days. I really want to hear from anyone who has had this procedure – they’ve only done 40 so far at Virtua, and they’re one of the original sites – the doc said it’s probably because it’s still strictly out-of-pocket. Tried to qualify for a clinical trial but couldn’t find one near enough to me that would take me, so am relying on family donations to finally get my quality of life back without being laid up – I’m self-employed & single so downtime is a huge financial & emotional concern for me.

   My local IR said I didn’t qualify sizewise for UME, yet both ExAblate docs said I was a good candidate for UME – but, since mine are so large it’d probably be a rather painful and lengthy recuperation. After reading posts here re: shedding tissue, prolonged pain & fever, etc. I still am not interested in UME, even though my insurance would cover it. It’s good to finally read about other womens’ experiences – the docs can only tell you so much! I hope to continue learning more about my impending Lupron experience as mine begins, and when I get ready to finally get “zapped” by ExAblate in January I’ll keep you posted. Thanks for personal expriences you can offer!

   [Edited by EclecticGeek to add link.]
2. EclecticGeek Says:
   September 24, 2006 at 6:26 pm

   I started both a Lupron thread and an ExAblate thread in the Forum. Hopefully, these will help you. I don’t have a personal ExAblate story but the Lupron post contains links to what I have written here about my experience with that treatment.

   Thank you for sharing your story. Keep us updated! If you have any questions or thoughts, please leave additional comments here, there, and everywhere.
3. Randee Says:
   October 6, 2006 at 11:45 pm

   Ruth,

   Do you have insurance? Even if your insurance says they won’t pay for this procedure (which mine did) you can challenge their decision. The exablate company has insurance specialists that will file an appeal and coordinate with your Gyn to submit information on the medical necessity of your case. When blue shield rejected my treatment, we got them to reverse it and they are now paying for the procedure. By the way, I have a large fibriod and my doctor said it should only take an hour or so for this procedure, despite what they say.
4. EclecticGeek Says:
   October 13, 2006 at 9:12 pm

   Randee:
   Thanks for the insurance information. Good to hear that you’re covered.

   Ruth:
   I posted this in the ExAblate thread but I’ll also add it here. I found some insurance information including pre-authorization and appealing denials:

   Uterine Fibroid Insurance Coverage Guide for MR guided Focused Ultrasound Surgery
5. Helen Says:
   October 15, 2006 at 8:50 pm

   I’ve been suffering with fibroids for many many years. After perimenopause they are still living and haven’t begun to shrink; although my gyn indicates they are started to have heartattacks! I’m in discomfort on a daily basis. My gyn said my options now are hysterectomy. Hey, if I didn’t have a hysterectomy in my 30’s I’m certainly not going through that ordeal at this time in my life!

   Sent my patient intake information to an ExAblate gyn and waiting to hear from them. How much does this procedure costs – for those of us out-of-network and with insurance companies who supposedly won’t pay for this procedure.
6. Ruth Says:
   October 16, 2006 at 12:13 pm

   Thanks for the info, Randee. I never even saw that info on the ExAblate website! My (marginal) insurance insists that a hysterectomy is the sole response since there is no possibility of a recurrence after surgery. And, since their payout for a hysterectomy is less vs. ExAblate, they are pushing the surgery. But an appeal is sure worth a try. Twelve grand is a lot of money! The doc said they range from $8,000-$12,000 depending on the “table time”, i.e. the actual time it takes in the MRI machine to map each sonication target(or “zap”) and do it in a circular pattern starting from the center of the mass. My largest mass is 18cm in diameter – quite large – and then I have about 8 other masses of varying sizes. I was stunned when I saw my MRI and how much space all these tumors were taking up, relative to all my other organs in there! Can you say denial?! The ExAblate doc spent a lot of time reviewing my MRI with me to explain his strategy to zap them. We hope that the Lupron treatment will shrink things enough to get more tissue ablated in each mass, resulting in shorter “table time” and a better outcome overall. Once you are treated, they cannot go back & repeat areas – it’s a one-shot deal. So, I’m trying to maximize my chances of getting a good outcome, and fortunately my insurance is covering the 3 Lupron injections (Uninsured cost for EACH ONE is $500!!) This doc has done 40 ExAblate procedures since the FDA approved their site [(Virtua Health in Voorhees, NJ)] but thinks more women would use it if their insurance were more willing to cover it. I know that has certainly been an issue for me, being self-employed with marginal access to any decent health insurance. Luckily, I’ve been totally healthy – until the fibroids reared their ugly heads in ‘99. Hung on as best I could hoping menopause would come & shrink ‘em, but cannot hold out any longer – they are basically running my life

   You ExAblate folks out there – keep the comments coming. For those of us wanting to pass on the UAE, this is our only option left besies the “H-word”…

   [Edited by EclecticGeek to add link.]
7. EclecticGeek Says:
   October 29, 2006 at 4:00 pm

   Helen:
   I hope you have heard something or will hear something soon. Good luck on getting in and having something done about your fibroids. Let us know how things are going.

   Ruth:
   I am also anxious to see more comments. ExAblate is so new that ANY shared information or experience is really important. Hopefully, we’ll get responses here or in the other ExAblate post.
8. EclecticGeek Says:
   December 17, 2006 at 4:35 pm

   Here’s a quote from a great comment from the other ExAblate post: (Click the link to view the entire comment.)

   Randee: One person who might be able to help you is Margot Harkinson, a patient advocate that works for the exablate company. She can discuss all your options, including how you might get the insurance company to pay for this procedure or get financing. She coordinated my insurance appeal (because I got turned down at first) and dealt directly with my doctor’s office. Margot’s email address is mharkinson AT exablate DOT net.

   Thanks Randee!
9. EclecticGeek Says:
   December 23, 2006 at 5:21 pm

   Had a visitor to leave this in a comment on the fibroid symptom thread. Decided to move it here with the other MRgFUS information. I did edit the contact info. They have several locations in Florida. This is their website:
   http://universitymri.com/index.html

   christine: I have 6 fibroids totaling 12 cm. I will not have a hyterectomy at 44 y/o. Had two miscarriages. Found this on the internet. Ultrasound treatment for fibroids. read on and hope this helps someone. I will be doing this next year sometime.
   Dear Candidate,

   Thank you very much for your recent inquiry regarding MR guided Focused Ultrasound. We welcome the opportunity to speak with you to discuss the pre-screening process. Please feel free to email me with your contact numbers.

   University Image Guided Therapy Center, an affiliate of University MRI & Diagnostic Imaging Centers located in Boca Raton, Florida, is pleased to let you know we are one of only a handful of centers across the United States offering this non-invasive FDA approved treatment for uterine fibroids. We are extremely proud that our physician was the first in the United States to perform the procedure after FDA approval and, our treating physician has performed more procedures than any other provider in the United States.

   MR guided Focused Ultrasound (MRgFUS) is a safe and effective procedure for treating symptomatic uterine fibroids. It can non-invasively target and treat uterine fibroids, using high-intensity focused ultrasound waves. The focused ultrasound energy heats the tissue in the fibroid to ensure thermal ablation. The MRI scan provides anatomic guidance to safely direct the ultrasound beam and allows real time monitoring of temperatures to ensure adequate ablation. Only the tissue at the focal point is heated and the tissue outside of the focal volume remains unaffected.

   This procedure is an alternative to surgery, hormonal treatment and Uterine Artery Embolization. MRgFUS has proven to decrease symptoms often associated with uterine fibroids such as heavy bleeding and urinary frequency. With MRgFUS, there is no hospital stay and the patient quickly returns to normal activities.

   The FDA has currently recommended that this procedure not be performed on women who desire future pregnancies. However, please note that several women who were treated with MRgFUS have conceived and delivered normal babies. Furthermore, a study is now in progress in Europe to use MRgFUS to treat fibroids and infertility. The most recent data reports that 17 women have had pregnancies after MRgFUS with 7 normal deliveries, 3 elective terminations, 6 miscarriages and 1 woman is still pregnant.

   We look forward to meeting with you and providing you with the highest quality health care in a comfortable, outpatient setting.

   Sincerely, Patty

   Patty Kaminski, RN
   University MRI & Diagnostic Imaging Centers
   pkaminski AT universitymri DOT com

   Thanks for the information christine!
10. Randee Says:
    January 20, 2007 at 5:44 am

    Just went through the exablate procedure last night and am feeling amazingly well. Unlike surgery where you are knocked out and in pain, my husband and I actually went out to dinner afterwards. I really didn’t expect to feel this good so soon. I was pretty hungry because I had to be on clear liquids for 2 days and not eat or drink anything the day of the procedure. They give you “conscious sedation” via iv so I was relaxed but asleep. They want you awake because you are on your stomach for 4 hours and don’t want your breathing obstructed. That sounds like long time but it goes relatively quickly with anesthesia. The treatment feels like a warm sensation with some mild cramping which not bad. Whenever I felt uncomfortable I just buzzed the anesthes. and she adjusted the meds. Anyway the overall experience was very tolerable. They took an mri immediately afterwards and I’m told thay they achieved the maximum result. So that’s encouraging. The people from the exablate company who worked alongside my own doctor were terrific. We were told that the exablate technology is being looked at now for the treatment of breast cancer tumors….. Anyway, I’ll keep postibg tonlet you know how this works out.
11. EclecticGeek Says:
    January 31, 2007 at 8:56 pm

    Hey Randee,

    I responded to your post on the other ExAblate thread but I’ll add it here, too!

    I saw your post and let out a huge “YAY!”. I take interest in every experience shared all over this site but I am giddy for you (Yes, it’s the geek in me!) because this procedure is cutting-edge. I’m so happy to hear that everything went well both with the results and your recovery after the procedure. I appreciate you allowing us to “walk in you shoes” with your ExAblate experience. Take care and keep us updated!
12. Sharyn Says:
    February 7, 2007 at 2:13 pm

    I have had the FUS last May and didn’t think it was difficult at all. I had almost no medication during the procedure and even walked ten blocks back to my hotel right after leaving the surgery, because I couldn’t find a taxi and felt fine. In my case they didn’t get all the area they wanted so I’m going in for another treatment after a three month Lupron shot. I’ve been sharing my story with other women because I believe this is a giant leap forward in womens’ health care. If you’re considering FUS I would urge you to go forward, it’s ever so much easier than you might guess and once you stop bleeding so badly you get the old energy back right away.
13. EclecticGeek Says:
    February 16, 2007 at 8:25 pm

    Hi Sharyn,

    Thanks for sharing your experience. This procedure is so new that I appreciate every woman willing to tell her story. I also have a post about Lupron if you want to talk about that as well:

    How are you feeling after your Lupron injections? Any side effects?

    Please keep us updated and best wishes to you!
14. Sonya Says:
    February 18, 2007 at 9:38 am

    Thanks for everyone who has shared information. It’s quite helpful. I am very curious if anyone with insurance through the US Military (Tricare Prime) has been successful at getting High Intensity Focused Ultrasound (HIFU) covered. If so, where did you go for treatment?

    I have a single fibroid that’s about 7.5 – 8 centimeters and killing my back but not causing anything symptons so bad that I’m willing to undergo surgery of any kind – yet.

    Thanks in advance,
15. Ruth Says:
    February 21, 2007 at 3:01 pm

    I had my ExAblate done last week & I’m doing great. If you want all the details, go to my post under the ["Does Anyone Have an Experience with MRgFUS"] link in the Forum.

    Best of luck to anyone headed in that treatment direction!

    Ruth

    [Edited by EclecticGeek to add link.]
16. Paula Says:
    February 23, 2007 at 11:40 am

    I am considering Exablate at [Virtua] or [Great Neck] NY, why Lupron…my broid is about 3.8 centimeters i believe i only have 2, anyone at Great Neck NY who did the MGrFUS….
    Dr Snowden? and how many has she done? In process of getting an MRI to qualify. Did you go through your own gyno fro MRI etc.. Please advise thank you

    [Edited by EclecticGeek to add links.]
17. Ruth Says:
    February 23, 2007 at 12:45 pm

    Randee went to Great Neck – read her posts. Sounds like your case is pretty simple. Maybe you won’t have to do the Lupron pre-treatment if they’re that small. I did all the research myself on ExAblate via the Internet – we only have UAE available up here, and my GYN didn’t know much about it.
18. EclecticGeek Says:
    February 28, 2007 at 4:40 pm

    Sonya:
    There’s more insurance information on the other page:

    Does anyone have an experience with Exablate (MRgFUS)?

    I don’t know if you’ve done this or not, but you could also check with the Patient Advocate that Randee suggested:
    Margot Harkinson
    mharkinson AT exablate DOT net

    Paula:
    I see you also posted on the other MRgFUS page. Best wishes with everything! Keep us updated.

    Ruth:
    Glad to hear you’re feeling great!
19. EclecticGeek Says:
    March 17, 2007 at 12:26 pm

    Please visit this page to post your comments:

    Does anyone have an experience with ExAblate (MRgFUS)?

    Thanks!

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