ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Mark on April 01, 2007, 06:51:01 pm
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House Ear Clinic is clearly one of the premier places to pursue a surgical removal of an AN in the world. However, I have always had the opinion based on the erroneous information on their web site and other articles that they were very anti radiosurgery and would steer people to surgery in virtually any situation. Thus I would tell folks if you are sure you want surgery, strongly consider HEI, but if you want to get an unbiased opinion on both options , then go somewhere else and talk to someone who actively does both.
A few months ago, HEI announced that they now had access to a GK in their host hospital , St Vincents. This created some discussion that they were becoming more open to radiosurgery as a viable option. Being the skeptic that I am ;D, I found it hard to believe that leopard could change his spots that quick, but allowed that could happen. Personally, given the number of people opting for radiosurgery, I assumed it was just a ploy to give some credibility to their recommendations. Something along the lines of "yes, we do have a GK, but in your case we still think surgery is preferable".
I've been anxious to hear the first person who called HEI and in fact as told that GK was the choice. However, I saw the attached post on the CPSG site yesterday that suggests to me that my skeptical view is probably correct. The link to the exchange which includes a response from Dr. Medbery and some other posters is
http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=10839
for those who would like to read the whole thing, but the specific recap of the discussion with Dr. Brackman is
I am speaking with Dr. Brackmann again at House Ear Clinic in LA. He continues to insist that my concerns are unfounded at their facility. He assures me that none of his patients have ever experienced anything other than mild facial weakness and that none of them have had facial disfunction to the point of the eye not closing with an AN the size of mine. He feels that the risk of the radiation not working and the "salvage" surgery being more difficult and having poorer outcomes outweighs the increased risk of complications for the surgery vs GK. He was vrey opposed to fractioned radiation. I honestly do not know what to do. I don't have a lot of time to research, but I have been doing what I can as I can. I have concerns about FSR because I read you can only have it once. I had read before that you can have GK after GK. I am not certain if I am correct on that but I would lean toward GK over FSR if it is an all or nothing deal. I know I need to make the research a higher priority as it grew 1mm in four months. I don't want to wait until I have hearing loss to make a decision but everything I read is very conflicting. Dr. Brackmann said unless I was in my 70's he would not recommend GK since there are no good statistics beyond 20 years and my life expectancy is longer than that. I told him I would prefer 20 good years to 40 with my face paralyzed. He simply is very confident I will not have a problem. Unfortunately he is working on mine and I am still very nervous about it. I also really don't need to be out of work for a month - assuming there are no complications.
Any new insight would be greatly appreciated!!!
Sure doesn't sound like a physician who has embraced radiosurgery as a primary solution for AN treatment does it. So until I see some other evidence I would still encourage folks not to view HEI as a place to get a balanced view of both options. Otherwise, it sure doesn't look like the leopard has any new spots ;).
Mark
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Mark,
Also saw the commentary on the CPSG website. Will watch this thread to make sure all stay on track.... many have had their surgeries at HEI and do well, post-treatment, so hoping this stays on track as this discussion is based on HEI and Radiosurgery only (not their microsurgical protocols). ANA forum rules apply.
*pulls up lounge chair and beverage and sits back*
Phyl
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Let me clarify things from the viewpoint of someone who has actually been to House and had a loved one treated by them. My wife was treated by Friedman and Schwartz. I have never met Brackmann, but I cannot imagine anyone at that institution offering the kind of quasi-guarantees quoted in the message above. That is simply antithetical to HEI's entire ethos.
Second, we had long discussions with both docs about radiosurgery and microsurgery. We also consulted with a doc at Pitt before making up our minds. It is fair to describe Dr. Friedman as pro-surgery where that makes sense. His opinion is driven by his reading of the scholarly literature. But, he made it clear to us that radiosurgery is a reasonable choice.
Dr. Schwartz was very even-handed in discussing the research. Like Dr. Friedman he said both options are reasonable and I would say that he is very much open to both alternatives. Only after my wife said she preferred surgery did he tell us what he would do if he were the patient and that was only his personal preference for himself.
Both these docs are trained on GK and have done it.
There are good faith disagreements about treatment and that is fine. I would just prefer that we stay with the facts when evaluating House.
Fred
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Question for newbies... has anyone here consulted with HEI and they recommended the GK treatment option at St. Vincent's vs. microsurgery?
Phyl
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Fred,
I would echo Bruce's perspective as well, but certainly would agree with both of you that 1 patient's recap should not be considered "definitive evidence". That being said, Over the past few years I have have had phone and e-mail conversations with dozens of people who have talked with the doctors at HEI and what was recounted here is consistent with what I heard from them. My post was intended to be a check against the question as to whether the recent access to a GK would , in fact, signal a change in their thinking. As Phyl posted, the interesting question continues to be whether we hear from the first patient who actually has GK there.
Just to reiterate from my initial post, I have the utmost respect for the surgical skills of the HEI doctors and believe their experience gives those choosing surgery the best odds for outcomes better than the average. It is also my opinion, that they do do not recognize radiosurgery as a viable primary treatment option, and since they don't do it, I don't see them as a credible scholarly source in discussing it. Peer reviewed studies from teaching medical centers that track radiosurgery outcomes would seem to be more meaningful to me and more relevant to an individual exploring options.
Mark
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ppearl214
As I recollect my consultation with a doctor from HEI last month. He would recommend wait-and-watch first (to see if the AN was growing and what the growth rate was) and then consider GK. He said the primary purpose of radio-surgery is to stop the AN from growing, so wait-and-watch first would let us know if the GK was needed... He said they do GK at HEI. I didn't think to ask him how many, probably because if I chose GK, I would prefer to do it here at home rather than in Los Angeles. OTO
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I talked to Dr Schwartz for a long time about radiation vs surgery and feel he was balanced in his discussion of both options.
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I elected microsurgery over GK, before going to HEI, so once I saw Dr. Brackmann, I never got onto the issue. He and all of HEI were very professional, responsible, and met every one of my needs as a patient, including facial nerve preservation, and preservation of my remaining hearing. I would recommend them to my family, friends, and even my foes for AN treatment.