Author Topic: My Dr. has done 100 of these, is that enough?  (Read 6100 times)

Alan R

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My Dr. has done 100 of these, is that enough?
« on: October 25, 2010, 12:15:21 pm »
Looking at doing radiation treatment for my acoustic neuroma in mid November.  My Dr. says he has done about 100 of these.  What do you think?
Right Side AN
Diagnosed by MRI Sept 2, 2010
1.2 cm
some hearing loss
high pitched ringing in ears
dizzy spells

Funnydream

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Re: My Dr. has done 100 of these, is that enough?
« Reply #1 on: October 25, 2010, 02:12:54 pm »
I'm only a person that has been threw the AN wringer. And I don't even have a year under my belt when it comes to ANs.

Seams like you asked the right question. I did watch a video of a AN 2009 conference and Dr. Tew was the speaker and he said for surgery you want a Doctor that has atleast done 100 before you let them near your facial nerve. I can't find that video.

My Neurologist said he done about 200 and asked me if I knew who had done the most. Of course I didn't know and he named some German doctor and said he had done over 1200. My ENT said he had done about 80.

I got much better insight and forsight from my neurologist on what to expect and what might go wrong, etc. As opposed to my ENT who didn't tell me too much.

I hope this helps. But I would NOT put too much stock in a random internet person who can't even provide a link to a video. I hope some members with more years experience help on your question. And sorry you haved to go threw the AN wringer.
Age 42, AN left, 2.8cm
left hearing gone, balance getting better.
16 hour Surgery 9-27-10 CSF leak fix 10-4-10 3 hours
Miracle I feel my left face and tongue again.
If we evolved from monkeys into humans? When do we stop being human and become something else? What would that something else be?

lori67

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Re: My Dr. has done 100 of these, is that enough?
« Reply #2 on: October 26, 2010, 07:11:01 pm »
Hi Alan and welcome!

Not having had radiation for my AN, I can't really say what an "adequate" number of treatments would be.  I think if I were in your situation, I'd probably ask the doctor what the outcome of those 100 treatments was.  In my opinion, and I'm not a doctor, performing 100 and having good results would be better than doing 1000 and having half of them go wrong.

Bottom line though, you have to feel comfortable with the doctor you ultimately decide to hire and you have to have confidence in his or her ability to do the job.  If your gut is telling you that something isn't quite right, it's time to get another opinion.

Good luck! 
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

PaulW

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Re: My Dr. has done 100 of these, is that enough?
« Reply #3 on: October 26, 2010, 07:22:57 pm »
My understanding is that treating an AN with radiosurgery is not that much different from treating many types of brain tumours with Radiosurgery.
Treating 100 AN's with Radiosurgery is, I believe quite a few. When you consider he has probably treated quite a few hundred of other types of Brain Tumour as well, I think it bodes well for his experience.

I am not a doctor of course, just my personal opinion.

I believe the doctor in Germany is Dr Muacevic at the European Cyberknife centre in Munich, He treated my AN.
He used to do Neurosurgery on AN's switched to Gammaknife in the late 90's and then to Cyberknife.
Very clever man.. was very confident he would give me a first class zapping.



10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

james e

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Re: My Dr. has done 100 of these, is that enough?
« Reply #4 on: October 29, 2010, 08:33:25 am »
I had surgery but flirted with radiology. That doctor told me that it took three doctors to do the procedure...a neuro surgeon, the radiologist and himself. They study your MRI, and map out a digital plan, and all three must agree on the plan before they do it. I don't know if this is a common practice, but I would guess that it is. These docs have all been through training as residents for YEARS, and may not have been the primary physician very many times if they are still young, but I'm sure they have been through lots of these procedures. He told me it took him 14 years of medical school and specialty training to get certified to do this procedure. These were your class nerds in high school, but they are your medical heros today! They are not just throwing darts at the problem...it is highly planned. Good luck to you.

james e

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Re: My Dr. has done 100 of these, is that enough?
« Reply #5 on: October 29, 2010, 09:01:09 am »
Let me back up a second...I had surgery at Methodist Hospital in Houston, Baylor University. TRAINING is a big deal! My neuro surgeon had a resident with him. My doctor had a resident with him who was 6 months away from being board certified and he actually did part of the procedure. There was at least 1 other resident there who is a doctor in the Army just starting her training...I hate to be a male here, but she was pretty easy to look at. She was with me in intensive care and did daily follow up with me in the hospital. When I had my BAHA surgery done, a resident did all of my pre-surgery prep, and was present for the surgery. All of these docs were already ENTs, already highly trained.

I won't go into why I had surgery, but there is a much higher degree of difficulty in the surgery than the radiology, and I would be much more highly concerned about the numbers of surgery the doc has done, rather than the number of radio surgeries someone has done. So few of us have ANs, that if your doc has done 100+, he has done a lot of business. If we are 1 out of 100,000, he has treated all of a city the size of New York. I wouldn't worry lose a wink of sleep about your doc.

leapyrtwins

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Re: My Dr. has done 100 of these, is that enough?
« Reply #6 on: October 30, 2010, 09:02:07 am »
I had surgery but flirted with radiology. That doctor told me that it took three doctors to do the procedure...a neuro surgeon, the radiologist and himself. They study your MRI, and map out a digital plan, and all three must agree on the plan before they do it. I don't know if this is a common practice, but I would guess that it is.

I considered radiation myself, but decided on surgery due to many factors (personal decision here, not advocating one treatment over the other).  My neurotologist does radiation with a radiation oncologist, and like James said it's very mapped out and the doctors are highly trained.

Is 100 procedures "enough"?  I truthfully can't say, but I agree with Lori.  Ask your doc about his patients who had radiation and their outcomes.  Also listen to your "gut" and your head.  It sounds like your doc is definitely qualified, but IMO whether he's qualified "enough" is up to you to decide based on your comfort level in your interaction with him.

I respectfully don't agree with James' reasoning that you should be more highly concerned about the number of surgeries a doc has done, as opposed to the number of radiation treatments he has done.  The ANA will tell you that your doc should be experienced and qualified in treating ANs - whether it's surgery OR radiation.

Good luck making your decision, it's often one of the hardest parts of the whole AN Journey.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tumbleweed

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Re: My Dr. has done 100 of these, is that enough?
« Reply #7 on: November 26, 2010, 11:39:37 am »
Alan:

Besides his record of success, I would ask your prospective doctor over what period of time has he done the 100 AN radiosurgeries. It he's done all 100 over the course of 2 or less years, he has averaged about one per week and is probably pretty well-practiced. If, on the other hand, we has done the 100 over the course of 8 years, for example, then he only has treated about one patient per month on average. Dunno about you, but I'd be nervous about putting my fate in the hands of someone who only plans a highly technical AN treatment once per month. (Continual) practice makes perfect.

In contrast, I think Dr. Chang (Stanford-based doctor) treats 2 or 3 patients per week, if I remember correctly.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

mmer302

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Re: My Dr. has done 100 of these, is that enough?
« Reply #8 on: December 22, 2010, 06:46:15 am »
I found a doctor in Raleigh, NC that has done over 1,400 and he is "world renowned" accoding to what I have read. His name is Takanori Fukushima. Google him

Tumbleweed

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Re: My Dr. has done 100 of these, is that enough?
« Reply #9 on: December 22, 2010, 08:34:45 pm »

In contrast, I think Dr. Chang (Stanford-based doctor) treats 2 or 3 patients per week, if I remember correctly.

Best wishes,
TW

Time to correct myself. According to an interview of Dr. Chang by our fellow forumite Francesco, Dr. Chang treats about 10 brain-tumor patients per week, but on average only one of those patients each week specifically has an AN. The other patients have other types of brain tumors.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08