ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: AlabamaDonna on April 26, 2019, 06:47:11 am
Has anyone on this forum had surgery from Dr. Takanori Fukushima? Another AN victim told she found his surgery results posted online and that they were impressive. He flys in from Japan, operates, then is off to other countries to do the same.
He claims that using a "keyhole" incision allows him to preserve hearing in 60-70 % of patients.
I've been under watch and scan since November of 2018 when I suffered a sudden hearing loss which was restored using steroids. My tumor has grown from 1.7 cm to 2.1 cm and is estimated to be 21 mm now. The only symptoms I have are some fatigue, fullness in my head, occasional headaches and brain fog/memory loss, a barely noticeable numb sensation on my tongue, ringing in the ear, and some hearing loss. Overall, given the size of this demon, I function well, my eyesight is excellent, my hearing is good and I function normally.
I struggle with the decision to treat this tumor fearing that after treatment I'll be worse off. I'll be unable to hear out of one side, may have reduced balance and have to deal with dry eyes and facial weakness. I feel like I can live with the devil I know rather than take a chance on radiation or surgery. I'm 58 so some of my symptoms may be due to my age. Don't know. I believe in the power of meditation and prayer and am hoping to heal from this. Some have managed to shrink their tumors. I've rolled off progesterone because taking the hormone can feed a tumor. I take more vitamins now and work less to reduce stress.
Anyhow, I appreciate your feedback. I did talk with Dr. Friedman who recommended against radiosurgery. Dr. Gutherie at UAB agreed to watch and scan for now with another scan scheduled for June. My ex-husband, who no longer operates on brains recommended GammaKnife. It's hard to know what to do!
Diagnosed 11/18, 1.7
Last MRI 21mm
Watch & Scan
58 years old
Hi during my research I went to Duke last May to consult with Dr. Calhoun Cunningham, who is fabulous by the way and he operates with Fukushima. He did say that Fukushima rarely does operations anymore, he mostly trains in Japan. I know 2 people who have had surgery with Fukushima and and one done very well, the other they left a sliver which grew and she ended up going to Friedman for second surgery. It was about 3-4 years ago when he was operating more. You can do a free consult with Dr. Cunningham. Just email him, he is fabulous to talk to and respond!!!! You can mail all info to him. I got a free consult but I went in person to discuss more because my daughter lives in Raleigh, so it was a good opportunity for me. MANY MANY people on the facebook forums have had Dr. Cunningham with fantastic results and Dr. Cunningham operates with Dr. Zomorodi now.
Where are you located? I live in South Carolina and had numerous consults with various surgeons, GK offices. I also had a consult with Friedman, but felt we have great doctors on the East Coast as well to receive treatment.
I ended up getting GK at the University of Virginia with Dr. Sheehan. I am only 6 months out. Hiked 25 miles in Southern Utah 5 weeks after GK. GK side effects can be delayed and some start around 4-6 months. I have lost more hearing, some fatigue and am having some balance/vertigo issues, but overall doing very well. So far no facial issues or eye spasms or headaches which some experience. Side effects are different for everyone.
We are avid backpackers and hikers and I exercise a lot so after watching the tumor for 6 months, repeat mri which showed some growth, I proceeded with treatment.
Feel free to message me!
Thank you for writing and giving advice. This forum is a great place to exchange ideas and to support one-another. I do appreciate your comments. To answer your question, I am driving to see Dr. Fukushima. I live in Birmingham, Alabama, but am in Nazareth, Pa to attend my father's funeral and see family. I will then drive from here to have a face-to-face appointment with Dr. Fukushima. His office said he doesn't consult remotely so I'm making the pilgrimage there. His approach seems unique and the results published on his website seem impressive. I wonder why more physicians don't use the same approach. Did he use a keyhole incision on the patients you know?
I will try to contact Dr. Calhoun Cunningham to see if we can talk about treatment. It's always good to get second opinions and new perspectives. Depending on where a doctor is trained, his technique will vary, as will his results.
In Alabama, there are a couple of good neurosurgeons whom I know personally and trust but I have to say I'm intrigued by Dr. Fukushima's unique style and wonder if I can be one of the lucky ones who can retain hearing for his hearing patients. Many physicians, including my ex-husband who no longer does brain surgery, have advised treatment by Gamma Knife or CyberKnife but warn there's a better than 50% hearing loss afterward.. It's a tough decision to make. I honestly don't know what's best. It seems to me that the sooner I mess with the tumor, the sooner I'll invite problems into my life. Right now leaving it alone to grow incrementally and hopefully only give me mild symptoms seems to be the way to go. Having said that, my life has already begun to change. Once a social butterfly, I stay home in the quiet more. Once a reporter who loved the excitement of being on the scene of a story, writing and articulating what's happening, I find brain fog/memory loss prevents me from being an effective communicator. I tire more easily and headaches/tinnitus drag me down more. I'm at an age where docs will still operate but they warn not to wait too much longer or I'd risk complications. Also, my tumor size is at a point where they advise taking action. There doesn't seem to be a clear path forward. My wonderful ENT articulated it well when he said, "Pick one of three options. There is no cure and all options have consequences."
I find it disturbing that so many patients' tumors grow back. That alone makes me want to wait to have it removed. Also, the side effects of surgery sound similar to the side effects of keeping the monster in our heads only with a lot more risk and exposure. When I told Dr. Friedman I hoped to have Gamma Knife, he warned against it saying to go ahead, and he'd be there for me afterward if needed.
I know everyone on this forum has wrestled with these same challenges, and in particular, you Kimberly. It sounds like you have continued to have a full life and that is the goal! I wish you continued good health and happiness. And thanks again for your insight.