Looking for recs for interventional radiologist in NYC
March 9, 2018 9:51 PM Subscribe
What it says. I'm considering uterine artery embolization to treat fibroids, and there are some complications re: size and location. In addition to (of course) wanting a skillful practitioner and one who would treat the resulting pain appropriately, I'd like to be able to get the best, most up-to-date advice as to whether it's even feasible for me. My GYN is clearly leaning a bit towards surgery (pending MRI results), but that's, after all, his practice, not IR, and so his idea (and his intuitive preference) of what would contraindicate UAE may not be state-of-the-art. Any tales of personal experience would also be welcomed.
I was considering UAE this past fall and ultimately decided on hysterectomy instead for two reasons: I could not guarantee that the fibroids wouldn’t return, and I was told, when asking around, that recovery is quite painful as the tissue slowly dies.
I had previously had myomectomy, but the fibroids came back.
I made the right decision for me. I ended up having adenomyosis and fibroids. So getting rid of my uterus was the only solution. I never heard anyone say that she regretted the hysterectomy, either. It has been marvelous for me. Good luck!
posted by FergieBelle at 10:13 AM on March 10, 2018 [1 favorite]
I had previously had myomectomy, but the fibroids came back.
I made the right decision for me. I ended up having adenomyosis and fibroids. So getting rid of my uterus was the only solution. I never heard anyone say that she regretted the hysterectomy, either. It has been marvelous for me. Good luck!
posted by FergieBelle at 10:13 AM on March 10, 2018 [1 favorite]
UAE is not right clinical solution for every patient. Is is the most minimally invasive option for fibroid treatment once medical treatment has been exhausted. The recovery time is much shorter than hysterectomy. It sounds like kimdog went through a terrible ordeal, but studies do show that serious complications are very rare.
Mt. Sinai has the highest regarded IR practice in NYC. They are doing most UAEs via wrist access which allows patients to be up and moving much sooner than femoral artery access. The physicians I know are Bob Lookstein and Aaron Fishman but there seem to be two younger female interventionalists if you would prefer. It seems that they also have a multidisciplinary fibroid clinic which may be worth visiting.
posted by Corpus Callosum at 12:32 PM on March 10, 2018
Mt. Sinai has the highest regarded IR practice in NYC. They are doing most UAEs via wrist access which allows patients to be up and moving much sooner than femoral artery access. The physicians I know are Bob Lookstein and Aaron Fishman but there seem to be two younger female interventionalists if you would prefer. It seems that they also have a multidisciplinary fibroid clinic which may be worth visiting.
posted by Corpus Callosum at 12:32 PM on March 10, 2018
I can't help you with finding an interventional radiologist who rocks unless you want to come to Chattanooga, but I hope my story gives you a (mostly) positive data point about the procedure.
I started having issues with fibroids in 2005; my really excellent OB/GYN and I tried various medical things, and nothing worked. In February 2009, I had a deep vein thrombosis (blood clot), which meant I was on blood thinners for 6 months, which basically left me housebound for 6 months due to the fibroid/blood thinner combo (and got severely anemic and had two transfusions).
I did a lot of research on my own. My OB/GYN didn't know much about UAE, so she did research based on my own, and asked for recommendations for IRs. She was as eager for me to avoid a hysterectomy as I was.
Long story short, I found an amazing interventional radiologist. By then, I'd had ultrasounds but not an MRI, and the MRI was the key. I had BIG fibroids, and one was pedunculated (think: tetherball, so when I turned over in bed at night, I could hear it *flop*). He said he'd do the procedure, but he wanted a surgeon available as backup in case things got wiggy. He sent me to the same hysterectomy-happy gynecological oncologist I'd seen in the hospital after the DVT. This dude had wanted to do a hysterectomy in such a way that I'd have had an incision half-way up my abdomen as well as all the way across, not a little bikini-thing. It was insane, and I couldn't understand why people thought he was so great.
This guy was a huge jerk, disagreed with everything my (woman) OB/GYN and (woman) hematologist said, and finally, in front of his nurse and intern, I said, "Listen, when you have a hammer, everything looks like a nail. You're used to dealing with cancer, but I don't have cancer, and I want to keep my uterus, and the interventional radiologist just wanted to know if you'd stand by as back-up in case of emergency, so either say yes or no, but stop telling me to stop listening to my other doctors, whom I actually trust." (His nurse was standing behind him and made silent applause and thumbs-up behind hi head!)
Six months later, when I was off the blood thinners, I had the UAE procedure. I was told I'd have the worst-pain-ever when I woke up, and though I remember coming out of the anesthesia and there was nobody in Recovery except an elderly patient and his elderly wife, and I thought I was shouting for help, nobody seemed to hear me. Probably within 5-10 minutes, I got meds, got to a room, and until the next morning, dozed and watched an endless marathon of Diners, Drive-ins, and Dives. I don't recall pain, just discomfort when getting out of bed to use the restroom.
The next morning, I went home. Other than discomfort when the car went over bumps, I was fine. By two days after surgery, I stopped taking the pain meds and never needed them again. I have a lot of trouble getting anesthesia out of my system, so I was groggy for a week, but went back to work about 9 days later, feeling better than I'd felt in years. (I'm self-employed at a job that can require a lot of lifting; if I'd had a desk job, I'd have gone back to work 3 days later.)
Unfortunately, 2 1/2 months later, I started having pain in my uterus that radiated down both thighs. It ranged from annoying to (late at night) agonizing. Then I thought I had the flu, because I had a fever. After several phone calls with my OB/GYN and the interventional radiologist, I went for another MRI, and ended up having two D&Cs four days apart because the necrotic tissue (of which there was a TON) was trying to make a run for it. I had no pain (except to my bank account) and was just very draggy for weeks due to the anesthesia. (Timetable -- surgery in mid-September, pain in late November, D&Cs in early December, perfectly fine by Christmas.)
So, 2009 really sucked, but it's been 8+ years since then, and I've been so happy and healthy. I would literally have done anything short of murder to avoid having a hysterectomy, so take that as a variable, but this was as non-invasive as a procedure could be. No stitches. Minimal pain of short duration. Easy recovery. They weren't sure if I'd ever have a period again, as I was in my early 40s. Younger women do; older women don't. I didn't for about 9 months, and once I did, it was no big deal, like when I was a teen.
Summary: I did LOTS of research, consulted an international fibroids specialist (with whom I made friends on Twitter before ever asking), had big, weird fibroids and even with the unusual complications, I'd do it all over again. I only wish I'd known about UAE earlier, between 2005 and when I had my DVT, as I could have avoided a lot of misery and expense. I can't advise as to whether it's right for you, but I think it's a brilliant procedure!
posted by The Wrong Kind of Cheese at 3:03 PM on March 10, 2018 [3 favorites]
I started having issues with fibroids in 2005; my really excellent OB/GYN and I tried various medical things, and nothing worked. In February 2009, I had a deep vein thrombosis (blood clot), which meant I was on blood thinners for 6 months, which basically left me housebound for 6 months due to the fibroid/blood thinner combo (and got severely anemic and had two transfusions).
I did a lot of research on my own. My OB/GYN didn't know much about UAE, so she did research based on my own, and asked for recommendations for IRs. She was as eager for me to avoid a hysterectomy as I was.
Long story short, I found an amazing interventional radiologist. By then, I'd had ultrasounds but not an MRI, and the MRI was the key. I had BIG fibroids, and one was pedunculated (think: tetherball, so when I turned over in bed at night, I could hear it *flop*). He said he'd do the procedure, but he wanted a surgeon available as backup in case things got wiggy. He sent me to the same hysterectomy-happy gynecological oncologist I'd seen in the hospital after the DVT. This dude had wanted to do a hysterectomy in such a way that I'd have had an incision half-way up my abdomen as well as all the way across, not a little bikini-thing. It was insane, and I couldn't understand why people thought he was so great.
This guy was a huge jerk, disagreed with everything my (woman) OB/GYN and (woman) hematologist said, and finally, in front of his nurse and intern, I said, "Listen, when you have a hammer, everything looks like a nail. You're used to dealing with cancer, but I don't have cancer, and I want to keep my uterus, and the interventional radiologist just wanted to know if you'd stand by as back-up in case of emergency, so either say yes or no, but stop telling me to stop listening to my other doctors, whom I actually trust." (His nurse was standing behind him and made silent applause and thumbs-up behind hi head!)
Six months later, when I was off the blood thinners, I had the UAE procedure. I was told I'd have the worst-pain-ever when I woke up, and though I remember coming out of the anesthesia and there was nobody in Recovery except an elderly patient and his elderly wife, and I thought I was shouting for help, nobody seemed to hear me. Probably within 5-10 minutes, I got meds, got to a room, and until the next morning, dozed and watched an endless marathon of Diners, Drive-ins, and Dives. I don't recall pain, just discomfort when getting out of bed to use the restroom.
The next morning, I went home. Other than discomfort when the car went over bumps, I was fine. By two days after surgery, I stopped taking the pain meds and never needed them again. I have a lot of trouble getting anesthesia out of my system, so I was groggy for a week, but went back to work about 9 days later, feeling better than I'd felt in years. (I'm self-employed at a job that can require a lot of lifting; if I'd had a desk job, I'd have gone back to work 3 days later.)
Unfortunately, 2 1/2 months later, I started having pain in my uterus that radiated down both thighs. It ranged from annoying to (late at night) agonizing. Then I thought I had the flu, because I had a fever. After several phone calls with my OB/GYN and the interventional radiologist, I went for another MRI, and ended up having two D&Cs four days apart because the necrotic tissue (of which there was a TON) was trying to make a run for it. I had no pain (except to my bank account) and was just very draggy for weeks due to the anesthesia. (Timetable -- surgery in mid-September, pain in late November, D&Cs in early December, perfectly fine by Christmas.)
So, 2009 really sucked, but it's been 8+ years since then, and I've been so happy and healthy. I would literally have done anything short of murder to avoid having a hysterectomy, so take that as a variable, but this was as non-invasive as a procedure could be. No stitches. Minimal pain of short duration. Easy recovery. They weren't sure if I'd ever have a period again, as I was in my early 40s. Younger women do; older women don't. I didn't for about 9 months, and once I did, it was no big deal, like when I was a teen.
Summary: I did LOTS of research, consulted an international fibroids specialist (with whom I made friends on Twitter before ever asking), had big, weird fibroids and even with the unusual complications, I'd do it all over again. I only wish I'd known about UAE earlier, between 2005 and when I had my DVT, as I could have avoided a lot of misery and expense. I can't advise as to whether it's right for you, but I think it's a brilliant procedure!
posted by The Wrong Kind of Cheese at 3:03 PM on March 10, 2018 [3 favorites]
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But then the doctor repeatedly ignored escalating symptoms afterwards. Turns out I had a massive infection because the tumor detached, resulting in another week in the hospital and a DNC. There was lots and lots of medical fuckery from beginning of my diagnosis to through surgery (including my PCP, gyno and the radiologist), and I swear I would have died if a different gyno hadn't stepped in. Also, the tumors came back a year later, and I ended having hysterectomy at 36.
Memail me for the name of the radiologist.
posted by kimdog at 6:37 AM on March 10, 2018 [1 favorite]