ANA Discussion Forum
General Category => AN Issues => Topic started by: klm on May 22, 2008, 10:31:06 pm
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After hours and hours on this site and others and consultations with doctors I finally decided to go with middle fossa at HEI and I felt right about it. BUT when I talked to Dr Brackmann, he recommended Gamma Knife because of the location of my AN. I appreciate his candor. I had become convinced that HEI was the best place for surgery, but I don't know anything about their radiosurgery results.
Has anyone had any experience with Gamma Knife at the House Clinic?
Thank you so much.
karen
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Hi Kim,
No experience with Gamma Knife, I am pre-treatment, also. Wow, if Dr. Brackman said that is a good idea for you, that is big news, huh? He is such an icon. I decided on CK and Gamma was also a big consideration for me. There seems to be a lot online when I googled it. I did not read individuals who put up sites, but rather the sites of big hospitals, etc. I don't know if that helps or not.
Good luck, keep us posted.
Mary 8)
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...when I talked to Dr Brackmann, he recommended Gamma Knife...
Look out for the flying pigs! :o
Seriously, though, while that is surprising, it is also encouraging. Dr. Brackmann's standing just went up a notch in my book.
I heard somewhere that they got a new radiation guy at House - maybe it was Dr. Carlo Giovannini, as reported by Katherine in this post: http://anausa.org/forum/index.php?topic=6441.msg63565#msg63565
I think there is also a Dr. R. Friedman there who does GK. I'm sure they haven't done as many as some places, but they do know ANs very well at House, which is an important consideration. I'd be interested to hear from someone who has had GK there.
Steve
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Wow, I am totally shocked :o
House does have a great reputation, but everyone I know who has consulted with them says that they are usually very pro-surgery.
It's great to know they are also recommending radiation.
Thanks for posting this, Karen.
Jan
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When I had a phone consult with Dr. Brackmann after he had reviewed my MRI's he also said that my options were and I quote " Of course you have both Radiation or surgery available to you".
So I believe that house is widening their options to their patients. He also agrees with "Watch and Wait" for me and asked that I send him my next MRI, which will be in July, for his further review. I was impressed!
Jackie from Oregon
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when I talked to Dr Brackmann, he recommended Gamma Knife because of the location of my AN. I appreciate his candor.
Has anyone had any experience with Gamma Knife at the House Clinic?
I had surgery at house .. with Dr. Brackmann .... if he is recommend GK .. he really does not like the location .. plus he is a very smart guy .(many books and papers in the medical world). and must be reading all the writing on the wall about GK and its success stories...
my last appointment before I flew home was delayed ... he was on fishing trip ... how could get I mad ? ... I only wished I was with him !
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One of my doctors (out of House) said that the considerations for radiotherapy on ANs smaller than 3cm is coming to the forefront more. I guess the long term results are so good and promising that it is getting to be a more common option than in the past. For me, at my age, I felt most comfortable choosing radiosurgery.
Take care,
Mary
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Karen:
Although a surprise, if the renowned Dr. Brackmann recommends Gamma Knife for your AN, that has to be taken seriously. It's hard to 'switch gears' regarding treatment but because radiosurgery is so much less invasive and complicated than microsurgery, it shouldn't be that hard to make the change. That the House organization is apparently becoming more amenable to radiation is definitely encouraging and shows that radiosurgery is clearly gaining the respect of neurosurgeons and the other doctors that deal with Acoustic Neuromas.
I would tend to trust the House Clinic for radiation but would want to see some statistics on their experience and what kinds of success they've had. Of course, you would seek that information from any facility/physician. I trust this turn of events (Dr. Brackmann recommending radiosurgery) will make your next decision easier.
Jim
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Hi Karen:
Since radiotherapy has been recommended to you, you might want to research Cyberknife as well GK (that is, if hearing preservation in your AN ear is a concern for you) in considering next steps.
I had a 2.6 cm AN and had an excellent consultation at House (not Brackman, but a Dr. William Slattery). His basic conclusion as between surgery and radiotherapy was "it's up to you." When I asked about GK v. CK, his opinion was that GK was the way to go due primarily to his views regarding the accuracy of the machine and the fact that it has been in use for a long time. After that consultation, I asked many questions of Dr. Chang at Stanford and the docs on the Cyberknife message board, and read the abstracts available on Pubmed. Ultimately, I concluded that CK was at least as accurate as GK (or the differences were so miniscule it wouldn't make a difference in my case) and that Stanford's track record with fractionated radiotherapy was solid enough to conclude that the tumor control rates with CK were at least as good as GK (on the order of 98+%). Since CK meaningfully improves the odds of hearing preservation (and 9 months later, my hearing remains unaffected and I'm doing well) and does not require the headframe, I went with it.
I say all this because I think House is a conservative institution, which means they will likely wait years before they start recommending CK (which was introduced in the late 1990s) as a matter of course. But there are other well-respected institutions and physicians (Stanford, Barrow in Phoenix) out there that are treating ANs with CK now, with good results, and if your AN-side hearing is a concern, you might check into it to see if it something that might work for you.
If you want to talk more about my experience, please do not hesitate to email me.
Best of luck to you.
Francesco
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has anyone heard if the CK clinic in Salt Lake City is any good?
Sher
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Sher,
That's a good question to post on the cyberknife patient support forum: http://www.cyberknifesupport.org/forum/
Salt Lake City is a new center. I believe Dr. Medbery has stated previously that all CK centers go through training, are staffed with people experienced in radiation treatments in general, and that any CK center will be able to treat an AN correctly and effectively. But I would ask on the forum at the link above.
Steve
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Greetings !!!
Could I impose upon you to tell me the size and location of your AN? I imagine it's close to the brain stem or cerebellum, but I'm curious as to what Dr. Brackmann would recc. radiation for. He has operated on me, and several of my pts w/ excellent results.
Thank You
Sam
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Sher:
I believe you received the information regarding the Salt Lake City CK clinic you requested, after posting on the Cyberknife message board. If so, I'm glad we could help. We never hesitate to direct a member to another resource when that is appropriate.
Please stay in touch with us here so we can be of further help, if needed, as you move toward a treatment decision.
Jim
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Hi,
From what I understand..one of the Dr.s I consulted said Brackman now thinks radiosurgery is often a good option for smaller AN's. As I recall he said it in some conference and it caused quite a stir. Anyone else heard that?
My main Dr. is out of House. For me it was decided radiosurgery was the best because of my age, the size of the tumor and it's location, not near the brain stem at all. I think it is because so many are having good results from radiosurgery. Whatever, I think it is so good to have options because I firmly believe each case is different, each person is different and so are personalities. I feel blessed that my doctors gave me all choices. It made me feel in more control. But that also has to do with me and my AN, too. I am very sure they would not have given me all the options if my case called for surgery.
I am mainly thankful we live in this day and age of microsurgery and radiosurgery. All of the options are so much better than 40 years ago.
Mary 8)
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Sam:
My AN is supposedly 1.8 cm. It has to do mostly with the location--stuffed tight in the IAC, extending into the CPA, but still 4 mm from the brain. I also wonder if being 62 had anything to do with it (although I certainly don't consider that to be old!.)
If you have any advice, experiences, suggestions, or comments, I would appreciate it.
Mary,
Thanks for the positive thoughts and great perspectives!
I really wanted to go to HEI for surgery with Dr Brackmann because of his reputation, but what is their experience with GK? Which doctors are involved with the planning and the procedure? How long have they been doing it? Are they certified? What have been their results?......etc.
Anybody out there have any answers?
Mary, I know you are having CK, and I'm happy you feel good about your decision. Why, though, did you decide against GK?
Thanks,
Karen
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62 is still considered young for AN purposes. I had my surgery at 61. I'm surprised Dr. B recc no surgery, however, I would go along w/ his advice.
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8)
I met ole Grandpa Brackmann in person last spring… he is a wonderful man and I truly see him as THE ole guru of our AN world.
I just gotta love Grandpa Brackmann. I sure hope that when I am his age my learning curve is as on the mark as his is. He is one intelligent and gifted man - if ever I met one. He has such a presence to him- that I cannot explain.
My hope is that he will one day find the route cause of AN’s – in his research.
This whole post has me going to sleep tonight with a big smile…
Daisy Head Mazy
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Karen,
Since you are on speaking terms with Doc Brackmann now, why don't you ask him directly? I would think he could tell you who at House is doing Gammaknife treatments, how long they have been doing them there, and what sort of results they have gotten. Don't be shy!
Sam,
Even though 62 is still young enough for surgery, I suspect that Dr. B. also now considers it old enough for radiation, and is viewing it as a good option for avoiding facial nerve impact or other side effects in Karen's case.
Steve
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I'm pretty sure doctors are obligated to provide this kind of information if asked. If you're too uncomfortable asking the doctor directly, maybe you can ask an administrator or nurse practitioner at House for the data. I asked Dr. Slattery how many GK's he had performed and it was around 50 at that time -- a much lower number than other neurosurgeons with whom I'd visited (Dr. Christopher Duma in Orange County is one example). As I mentioned, I think House has been reluctant to embrace radiation so it would not be surprising if their doctors in general have less experience than others with GK. But that is just a guess. You should not hesitate to ask these questions directly.
Francesco
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The reason House is reluctant to embrace radiation is because their surgical statistics are so outstanding !!! They are far beyond the practice mode when it comes to AN treatment. It is radiation, although it appears promising in some circumstances, that is still in the practice mode. Remember, no-one really knows the LONG term consequences of radiating benign tumors, such as AN's.
Sam
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I did not mean to impugn House's surgical abilities, which are well-established. The point of my post was that they may not have done as much radiation as other medical centers because they are have long advocated surgery over radiation.
GK has been in use for nearly 50 years and there is no basis in the medical literature for suggestions of negative LONG term consequences of radiotherapy.
Francesco