ANA Discussion Forum
Useful Information => Physicians => Topic started by: BT on April 07, 2008, 08:11:13 pm
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Last week I was told I had an Acoustic Neuroma. I almost fainted in my ENT's office after looking over my MRI. I originaLly went in because I woke up one morning and could not hear a thing out of my left ear. I felt a lot of pressure as well. A few days later I got my hearing back, but still was told to go get an MRI done. I am glad I did(I think). I am told my AN is very small at this point 4mm x 2.5mm.
I have my first appointment with Dr. Mayberg in a couple weeks. I guess at this point I just want to know if anyone has had any experience with this doctor or has any recommendations for other doctors in the Seattle area.
Thanks,
BT
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Hello BT~
I don't know anything about any of the stuff you asked, but I just wanted to welcome you to our happy, little group!! Let me know if I can be of any help to you. I know it can be very overwhelming at first!
K
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BT -
Hi, and welcome :) Being diagnosed with an acoustic neuroma is pretty overwhelming. I know from experience.
Your AN is small and you most likely have the option of surgery or radiation. There is some very good information from the ANA on the opening page of this website under "medical resources" and "overview". The ANA will also send you literature about ANs at your request.
There is also much information to be found on this forum. I seem to remember another recent newbie from Seattle, but I can't recall who it is ???
If you put "Seattle" or your doctor's name in the search box at the top of the screen you might find others in your area or others who have your same doctor.
Good luck,
Jan
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Welcome to the forum. Yes, a diagnosis is a shock especially when a word like "tumor" is used.You are doing the right thing by going out and trying
to find information before making a commitment to a treatment. As you may
know, there is no *best* way to treat it. They all can have unanticipated
consequences--even waiting and watching. It ends up being an individual
decision.
After all my reading, I learned that the treatment choice depends on the
size of the tumor, its location, and your hearing level mostly. It took me
until September (and I was diagnosed in May2001 and my treatment was at
the end of November2001) to know what I really wanted to do and where to go.
I considered each treatment option seriously and oftentimes felt overwhelmed
with all of the information.
My right sided growth was 1.5 cm. After reflecting over my experience, I
want to *emphasize* one thing: the experience, expertise and passion of the
doctor you select for treatment means everything no matter which treatment.
Most agree that they need experience with more than 100 cases.
Through my reading, I also learned about potential side effects and about
the many excellent facilities throughout the country. One of the first
decisions I made was that this was unique enough of a condition that it
warranted going where the expertise was: even if it was outside of my local
area. I looked for patterns in the posts on the listserv related to
treatments and doctors. The listservs and guest books provide great info,
but it can also raise anxiety because each tumor is individual.
Then it dawned on me that I didn't know how listserv member's posts and the
side effects they were experiencing fit into the larger picture.How frequent
were side effects related to the various treatments? Could I generalize
from the qualitative data?
That caused me to put together a chart. I wanted to know
the data related to
hearing preservation, facial nerve preservation, in relationship to the
size of the tumor etc... It is another way to look at treatments.
This chart compared some of the various treatments using citations from
medical professionals, websites, or physician's e-mails. It is a laypersons
attempt to condense medical citations and information and that makes this
chart different from most. However, I am *not* a medical professional and no
decision should be made based on the chart. It was meant
to be a starting point for a conversation with your doctor. Please e-mail me if you'd like a copy.
The chart also includes some of the most common websites.. I also put myself
through some questions that helped me make my decision. They are included
under the heading "One Size does not Fit All" at the http://anworld.com/
Here is another link that you may find useful when you go to the doctor. I found it absolutely necessary to come in prepared with a list of questions to ask the doctor. Otherwise the doctors say what they want to say and are out of the room before you have a chance to digest what they have said and then to gather your thoughts enough to ask intelligent questions.The beauty of it is that you can print it out as many times as is necessary and there is a space for you to write notes.
http://anworld.com/questions/
You asked about doctors in the Seattle area. Many on this list are from your area including Raydean, OMG, Steve, and others who can give you doctor names.
Kindest Regards,
Kate
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Kate,
I was reading one of your posts and I decided to click on the link for the "ANworld" site you reference out of curiousity. There was cetainly some good stuff, but also some items I raised an eyebrow on including this gem
The importance of peer review. Many surgeons have published their results in peer reviewed journals. By contrast few radiation treatment centers have done so. Only one Gamma Knife center (University of Pittsburgh) and no FSR centers, to our knowledge, have so far published in peer reviewed journals.
All I can say is "huh". That just isn't a true statement and it wouldn't have taken a lot of basic google searching to have determined that. In balance the site information is fairly dated on radiation in particular and a comment like the one above creates the impression that it has not been well studied. While the intent of the site may be good, it certainly would benefit from some more updated and objective information
Mark
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Mark,
That is great that you checked out the site. There is some really good stuff at anworld. com.
It was written by 4 patients ( one FSR patient, one wait and watch, one middle fossa (me) and one retrosigmoid patient) to be helpful and as one stopping point for patients.
Conducting a google search and being published even in PUB MED doesn't mean peer reviewed according to the librarian in her quote. I don't personally have access to the Ulrich book mentioned.
I contacted the librarian several years ago and this was her response:
"Not all journals selected for Index Medicus are peer-reviewed , nor do we designate which journals are reviewed. You can look up a journal title in Ulrich's International Periodicals Directory published by RR Bowker
and if it has the designation "refereed" the journal is peer-reviewed.�
C. Williard e-mail
Reference librarian at the Nat’l Llib of Med
I know that at the time Song and Williams (JHU) came out with their first peer reviewed article and that it only had a cohort of 38 patients. On this site, people have already discounted that as a small sample size.
For example, would you ask Dr. Cheng if he has a peer reviewed study? Again, I don't have access to the Ulrich book. I would love to have his result to include. He may not yet because the treatment is only under ten years new.
Again, thanks for looking at the site. Chris Ottewell is one of the most knowledgeable patients I've ever met relative to radiation treatments. BTW, he had FSR with a doctor who was considered a "pioneer" in treatment and a "rebel" in the medical community by some.
Kate
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Kate,
I understand the caveat by the librarian that being published does not guarantee a peer review process was followed and support it. This is why I tend to discount any studies that are self reported or show up in any "mainstream medical periodicals". This is particularly true of those facilities that are independent or part of community hospital systems where research is not a focus or a priority. On the extreme there are web sites by hospitals "selling" either radiosurgery or surgery and I could find many examples of both. Personally, I see much of HEI's material in that light, but I could also list a couple of GK articles which inaccurately portray the risks or facts around surgery. Some of the mainstream periodical stuff can be OK, but you just don't really know what oversight went into it and most of those level publications do not do a peer review "scrub" before publishing
However, it is my understanding ( and I will send an e-mail to some of the Stanford faculty I know to make sure I'm telling the truth ;)) that all of the top end teaching medical centers ( i.e. Stanford, UCSF, Hopkins, Pitt, etc) mandate an internal peer review process before allowing any of their faculty to send studies out for publication. So a neurosurgeon doing a particular study must submit it to a panel of other medical faculty for review. This is obviously to insure and protect the academic integrity of the institution. If they reject it, it doesn't leave the building. As far the publishing review stage, I certainly can't speak to all of them, but I think you'll find that the professional medical journals do take that step. I know for a fact that the Journal of Neurosurgery does follow that process based on a conversation with Dr. Chang as to the timeframe of their publishing his study that I sent you previously. That basically explains in many cases why the publish date is so much later than the study data.
By and large, I would suggest that any study from a high profile teaching medical center that is in a professional medical journal has gone through not one, but 2 peer reviews. Even with a peer review process, at the end of the day, that doesn't guarantee that some study's don't give slanted results because of the poor study design which may or may not reflect some degree of bias and I've seen examples of that in both surgery and radiosurgery. However, in general, one would hope the reliability would be high.
So, with that explanation, on how I would rate study "value", if you accept my premise, then to the question you asked in your PM to me , I was able to find 10-15 "qualified" studies of radiosurgery results in the first 3-4 pages of a google search. If you disagree with my criteria, that's fine, but I would suggest then you need to make a similar statement about surgical studies as well because I'm not sure they would have any that would qualify as peer reviewed either ;D
Mark
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BT -
Look in the forum category - Inquiries. There is a message string (a couple of days old). It was started by Caryl - Subject: New AN in Seattle - GK/CK. Some of the Seattle/Pacific Northwest folks have answered re: their treatments and doctors... hope that was a short and sweet answer...
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However, it is my understanding ( and I will send an e-mail to some of the Stanford faculty I know to make sure I'm telling the truth ;)) that all of the top end teaching medical centers ( i.e. Stanford, UCSF, Hopkins, Pitt, etc) mandate an internal peer review process before allowing any of their faculty to send studies out for publication. So a neurosurgeon doing a particular study must submit it to a panel of other medical faculty for review. This is obviously to insure and protect the academic integrity of the institution. If they reject it, it doesn't leave the building. As far the publishing review stage, I certainly can't speak to all of them, but I think you'll find that the professional medical journals do take that step. I know for a fact that the Journal of Neurosurgery does follow that process based on a conversation with Dr. Chang as to the timeframe of their publishing his study that I sent you previously. That basically explains in many cases why the publish date is so much later than the study data.
By and large, I would suggest that any study from a high profile teaching medical center that is in a professional medical journal has gone through not one, but 2 peer reviews. Even with a peer review process, at the end of the day, that doesn't guarantee that some study's don't give slanted results because of the poor study design which may or may not reflect some degree of bias and I've seen examples of that in both surgery and radiosurgery. However, in general, one would hope the reliability would be high.
So, with that explanation, on how I would rate study "value", if you accept my premise, then to the question you asked in your PM to me , I was able to find 10-15 "qualified" studies of radiosurgery results in the first 3-4 pages of a google search. If you disagree with my criteria, that's fine, but I would suggest then you need to make a similar statement about surgical studies as well because I'm not sure they would have any that would qualify as peer reviewed either ;D
Mark
Mark,
Thank you for checking with Stanford to find out if Dr. Chang's work is "refereed" and if your premise is true.
Please check your facts about peer reviewed and submissions to magazines. John Hopkin's Dr. Williams (when he was alive) did not submit to peer review and finally about the time he got one peer reviewed with those 38 patients, he passed.
I am not a doctor and wrote UPMC several times as that was my choice if my tumor was to fall between 2 cm and 3 cm. Dr. Kondziolka was one to apprise me of the importance of peer review.
UPMC website:
"Confusion amongst patients exist because the information from internet sources, newsletters, support groups, and physicians has not always been validated and supported by outcomes data. Although we are asked to provide our opinions, our comments should not be based on myth, conjecture, training bias, or socioeconomic concerns."
Kate
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BT -
Look in the forum category - Inquiries. There is a message string (a couple of days old). It was started by Caryl - Subject: New AN in Seattle - GK/CK.
OTO -
thanks for refreshing my memory. Caryl was the newbie I was referring to in my earlier post to BT.
Jan
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[
However, it is my understanding ( and I will send an e-mail to some of the Stanford faculty I know to make sure I'm telling the truth ;))
So, with that explanation, on how I would rate study "value", if you accept my premise, then to the question you asked in your PM to me , I was able to find 10-15 "qualified" studies of radiosurgery results in the first 3-4 pages of a google search. If you disagree with my criteria, that's fine, but I would suggest then you need to make a similar statement about surgical studies as well because I'm not sure they would have any that would qualify as peer reviewed either ;D
Mark
Mark,
I should add that the question of peer review is only one aspect that people need to consider in the decision making process. Not all people rank it high. It is a way of ascertaining the data alongside of the side effects so that you can put your arms around " a range" of outcomes and not just personal experience.
I hold the definition to be the one set by the medical community. Otherwise, what one person's premise is would be different from another person's premise. Yes, I hold the surgeons and radiation doctors to the same definition of peer reviewed.
Popcorn bowl passes back to you:-)
Kate
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Kate & Mark -
not to be rude here, but I've been reading your posts and I can't follow a word you guys are saying! Too much technical medical stuff for me ;D
IMO all the reviews in the world are pretty irrelevant when you are the patient and it's your outcome and your life that is in question. Bottomline (yes, I'm an accountant) is that patients need to do their research in terms they can understand and docs will come down to "our level" in order to explain things to us. I did get all kind of statistics from my doctor, but in the end I chose what I was comfortable with. I also went with my gut and my level of confidence in my doctor. I don't know about others, but that was good enough for me.
Respectfully,
Jan
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I am totally, 100% in agreement with Jan!!
K
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K -
I'm happy to hear that. I've been wondering all morning if I was too harsh on Kate & Mark.
While I know that sometimes I totally get off topic, I come here to give and get support - and give and get a good dose of humor too. I just think that somewhere in this post the thread of trying to help BT was completely lost. It just kind of turned into a giant debate of peer reviews, their importance, and who is right and who is wrong. I felt a need to lighten up the conversation.
Jan
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IMO, not too harsh, Jan. Trust me... if you had been, you would have received a PM from me or JoeF! :) But, I agree -- to a point --as well. Mark and Kate bring up rather interesting points of discussion.... so, a very valid respectable conversation/debate and I even popped a new bag of popcorn for each of them.
Regardless if I am right or wrong or off my rocker or on the money... .we tout here to research, research research. We tout here to go with our gut and that regardless of what we decide, we know we have to decide on what is best for our own particular situations. We tout that experience of treating physicians is key...we tout that each decision (if options are available... as we know, some had no option but microsurgical) is a highly personal decision. For me... the debate can go around and around and around. No one is right... no one is wrong. For me... we have to be the best, well-informed patient we can be. How each individual interprets the info/knowledge is different in each indivdual and that, to me, is the key.
For me... the bottom line is.... learn what you can, absorb what you can, don't become overwhelmed by all the info, know in your gut and soul what will work best for your particular situation and have faith in your decision.
I have a headache. Got any humor over there? Could use some about now....
*runs off to find giggles in AN Community*
Phyl
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Kate,
Thanks for the popcorn :)
I hold the definition to be the one set by the medical community. Otherwise, what one person's premise is would be different from another person's premise. Yes, I hold the surgeons and radiation doctors to the same definition of peer reviewed.
OK, you're adding a new term to the conversation which I'm somewhat confused about. We started with a librarian's interpretation of what was or wasn't peer reviewed and now you're referencing a "medical community definition" . We seem to be drifting away from the original point I challenged which was the quote in your web site stating that their was a lack of studies related to radiosurgery that were "peer reviewed". Help me understand exactly who comprises the "medical community" and what definition did "they" establish for a legitimate study??? Sounds like there is some secret order of clinicians who have set the standards for studies :D. I thought we were talking about a peer review process as an independent assessment of the study integrity and design. Perhaps it would be helpful for me if you could provide me copies of those studies that have achieved this "good housekeeping seal" ;D.
At the end of the day, everyone does have to decide what studies , results, patient experiences, etc. they want to value in terms of deciding what they want to do. I think it's inaccurate to imply radiosurgery does not have a volume of studies that have had a legitimate review process and design and by association suggest surgical studies and results are somehow more reliable.
Popcorn back to you, I don't put butter on mine, so you'll have to add it ;D
Jan,
I always enjoy your posts and nothing you posted was harsh or offensive to me. It's probably my fault to have not moved this issue to another thread or just handled it off line to begin with, but I've always been sensitive to the effect ( what I percieve to be )misinformation can potentially have on new patients who haven't developed enough knowledge to discern facts from fiction yet, even when it's well intentioned. that applies to a post on this board or a web site someone develops in an effort to helpful. I think Kate and her friends have made a nice effort to do something postive for the AN community to the extent lay people can. However, with that comes a responsibility to be very sure and accurate of what you say because a lot of folks may not realize it's a lay person web page. I don't think the radiosurgery study statement is accurate and detracts from the credibility of the site as a result. the rest of the site seems to try and portray both options as reasonable so to imply it's "not well studied" is inconsistent. I think they would be better served to just delete it.
Mark
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I think Kate and her friends have made a nice effort to do something postive for the AN community to the extent lay people can. However, with that comes a responsibility to be very sure and accurate of what you say because a lot of folks may not realize it's a lay person web page. I don't think the radiosurgery study statement is accurate and detracts from the credibility of the site as a result. the rest of the site seems to try and portray both options as reasonable so to imply it's "not well studied" is inconsistent. I think they would be better served to just delete it.
Mark
Mark -
glad you aren't offended or thinking I was just downright rude. Thanks for that :)
I do agree 100% with what you said about the AN World website - your quote above.
Phyl -
thanks for the input - glad I didn't get slapped on the hand by you or Joef ::)
If you want that humor now, check out some of the BAHA-related posts - we usually have a great time there ;D
Jan
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Yeah, I don't even have a BAHA, but I always read those -- you never know what Lori & Jan are cooking up...Steve too...incidentally, I think he is a BAHA lurker too... ;D
K
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Kate,
Thanks for the popcorn :)
I hold the definition to be the one set by the medical community. Otherwise, what one person's premise is would be different from another person's premise. Yes, I hold the surgeons and radiation doctors to the same definition of peer reviewed.
OK, you're adding a new term to the conversation which I'm somewhat confused about. We started with a librarian's interpretation of what was or wasn't peer reviewed and now you're referencing a "medical community definition" .
At the end of the day, everyone does have to decide what studies , results, patient experiences, etc. they want to value in terms of deciding what they want to do. I think it's inaccurate to imply radiosurgery does not have a volume of studies that have had a legitimate review process and design and by association suggest surgical studies and results are somehow more reliable.
Popcorn back to you, I don't put butter on mine, so you'll have to add it ;D
from an earlier email: However, it is my understanding ( and I will send an e-mail to some of the Stanford faculty I know to make sure I'm telling the truth ) that all of the top end teaching medical centers ( i.e. Stanford, UCSF, Hopkins, Pitt, etc) mandate an internal peer review process before allowing any of their faculty to send studies out for publication
Mark
Hi Mark,
No butter on the popcorn and it looks like the bag is almost empty:-)
The librarian told me how to identify whether an article is peer reviewed. In other words a google search is not enough. It's not about what one thinks. Dr. K. told me the process.
"I hold to the standard set by the medical community related to the definition of peer review: for radiation and surgery. One cannot write whatever they want and expect to have it published. The conclusions must be soundly based on the data only, and not discuss topics that the data did not address. It(peer review) is the process by which scientific articles or data is reviewed and scrutinized by other (usually 3-6) people (neurosurgeons, radiation oncologists etc), prior to it being suitable for publication in a medical journal. This (peer review) is the highest standard in medicine.
This process (peer review) usually takes about 3-4 months, followed by a 4-6 month delay in the journal article being published.�
Quote by Doctor Kondziolka in an e-mail
As stated earlier, for some peer review is important because it gives you an idea of the outcome related to procedures realtive to size, location, hearing, facial nerve preservation and not just a personal opinion. When people make a decision, most are concerned with the outcome and this is one way to get an idea of what the outcome might be.
Mark, Did you hear back from Dr. Chang yet?
Jan,
I take no offense to comments either. We are all here to educate and offer different things that are important to different people.
Kindest regards,
Kate
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Mark and Kate bring up rather interesting points of discussion.... so, a very valid respectable conversation/debate and I even popped a new bag of popcorn for each of them.
Regardless if I am right or wrong or off my rocker or on the money... .we tout here to research, research research. We tout here to go with our gut and that regardless of what we decide, we know we have to decide on what is best for our own particular situations. We tout that experience of treating physicians is key...we tout that each decision (if options are available... as we know, some had no option but microsurgical) is a highly personal decision. For me... the debate can go around and around and around. No one is right... no one is wrong. For me... we have to be the best, well-informed patient we can be. How each individual interprets the info/knowledge is different in each indivdual and that, to me, is the key.
For me... the bottom line is.... learn what you can, absorb what you can, don't become overwhelmed by all the info, know in your gut and soul what will work best for your particular situation and have faith in your decision.
Phyl
Phyl,
Thank you for your comments and insight.
Kate
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Welcome to the Group BT!
I am sorry to hear about your diagnosis. I heard the same words for the first time just a couple of weeks ago. This wonderful fellowship of people is the best you can find anywhere. They have helped me enormously and I am not so overwhelmed now. I live in AZ so I can't help you with Dr.s but just know someone in AZ is cheering you on.
Take care,
Mary
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Hi BT,
I don't know anything about the doctor you saw but I can highly recommend Dr. Charles Mangham of the Seattle Ear Clinic. His email address is: cmangham@seattleear.com When he did my surgery in 1992 he was one of the best AN surgeons in the NW. I went to him for an AN and found that I actually had a Facial Neuroma. My ENT doctor referred me to Dr. Mangham but my Insurance company said I couldn't see him unless I wanted to pay for most of the surgery myself as he wasn't part of the network. When I told Dr. Mangham's office this they told me not to cancel my surgery until they talked to the doctor. They later informed me that the doctor, hospital and all others involved would except what ever my Insurance would pay and they would write off the rest of the costs. I didn't know until later just how lucky I was that he did that as the doctor my Insurance company wanted me to have only had 1 years experience on AN's and NO EXPERIENCE with Facial Neuromas. He obviously cares about his patients. If you have any questions feel free to ask. Goodluck, Jill
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I think I just saw BT running out the back door! ;D I hope they find a good doctor!!
Sorry to go off-topic, but I just did a quick search through my public library's website. They contract with EBSCOHost Research Databases to provide online access to "Scholarly (Peer Reviewed) Journals"... "over 1,250 peer-reviewed journals. Information is offered in the following areas: social sciences, humanities, education, computer sciences, engineering, physics, chemistry, language and linguistics, arts & literature, medical sciences, ethnic studies and more." I just tried a few different search terms related to AN and radiation terminology and generated dozens of results. I copied a few of them below, many included abstracts but can't be reproduced due to copyright.
Just wanted to point out that lots of results of US and international studies are available and probably readily accessible through a local library. I hope the criteria for "peer-reviewed" is met, as Dr. K. himself has some publications in here! ;D
JB
The CyberKnife®: Potential in Patients with Cranial and Spinal Tumors. By: Chang, Steven D.. American Journal of Cancer, Nov2005, Vol. 4 Issue 6, p383-393, 11p, 2c; (AN 19238947)
Long-Term Follow-up of Acoustic Schwannoma Radiosurgery With Marginal Tumor Doses of 12 to 13 Gy. By: Chopra, Rahul; Kondziolka, Douglas; Niranjan, Ajay; Lunsford, L. Dade; Flickinger, John C.. International Journal of Radiation Oncology, Biology, Physics, Jul2007, Vol. 68 Issue 3, p845-851, 7p; DOI: 10.1016/j.ijrobp.2007.01.001; (AN 25342094)
Acoustic neuroma radiosurgery with marginal tumor doses of 12 to 13 gy. By: Flickinger, John C.; Kondziolka, Douglas; Niranjan, Ajay; Maitz, Ann; Voynov, George; Lunsford, L. Dade. International Journal of Radiation Oncology, Biology, Physics, Sep2004, Vol. 60 Issue 1, p225-230, 6p; DOI: 10.1016/j.ijrobp.2004.02.019; (AN 14250540)
Single-fraction vs. fractionated linac-based stereotactic radiosurgery for vestibular schwannoma: a single-institution study. By: Meijer, O.W.M.; Vandertop, W. P.; Baayen, J. C.; Slotman, B. J.. International Journal of Radiation Oncology, Biology, Physics, Aug2003, Vol. 56 Issue 5, p1390, 7p; DOI: 10.1016/S0360-3016(03)00444-9; (AN 10233991)
Management of acoustic neuromas with fractionated stereotactic radiotherapy (FSRT): Long-term results in 106 patients treated in a single institution. By: Combs, Stephanie E.; Volk, Sigrid; Schulz-Ertner, Daniela; Huber, Peter E.; Thilmann, Christoph; Debus, Jürgen. International Journal of Radiation Oncology, Biology, Physics, Sep2005, Vol. 63 Issue 1, p75-81, 7p; DOI: 10.1016/j.ijrobp.2005.01.055; (AN 18233426)
Role of intracanalicular volumetric and dosimetric parameters on hearing preservation after vestibular schwannoma radiosurgery. By: Massager, Nicolas; Nissim, Ouzi; Delbrouck, Carine; Devriendt, Daniel; David, Philippe; Desmedt, Françoise; Wikler, David; Hassid, Sergio; Brotchi, Jacques; Levivier, Marc. International Journal of Radiation Oncology, Biology, Physics, Apr2006, Vol. 64 Issue 5, p1331-1340, 10p; DOI: 10.1016/j.ijrobp.2005.10.030; (AN 20524387)
Functional outcome after gamma knife treatment in vestibular schwannoma. By: Hempel, J.; Hempel, E.; Wowra, B.; Schichor, Ch.; Muacevic, A.; Riederer, A.. European Archives of Oto-Rhino-Laryngology, Aug2006, Vol. 263 Issue 8, p714-718, 5p, 8 charts; DOI: 10.1007/s00405-006-0054-6; (AN 21540812)
Long-term follow-up reveals low toxicity of radiosurgery for vestibular schwannoma. By: Rutten, Isabelle; Baumert, Brigitta G.; Seidel, Laurence; Kotolenko, Snezana; Collignon, Jacques; Kaschten, Bruno; Albert, Adelin; Martin, Didier; Deneufbourg, Jean-Marie; Demanez, Jean-Pierre; Stevenaert, Achille. Radiotherapy & Oncology, Jan2007, Vol. 82 Issue 1, p83-89, 7p; DOI: 10.1016/j.radonc.2006.11.019; (AN 23761172)
Optimal dose of stereotactic radiosurgery for acoustic neuromas: a systematic review. By: Weil, R. S.; Cohen, J. M.; Portarena, I.; Brada, M.. British Journal of Neurosurgery, Aug2006, Vol. 20 Issue 4, p195-202, 8p; DOI: 10.1080/02688690600886108; (AN 22249486)
Fractionated stereotactic radiotherapy for the treatment of vestibular schwannomas: combined experience of the Toronto-Sunnybrook Regional Cancer Centre and the Princess Margaret Hospital. By: Szumacher, Ewa; Schwartz, Michael L.; Tsao, May; Jaywant, Satish; Franssen, Edmee; Wong, C. Shun; Ramaseshan, Ramani; Lightstone, Alex W.; Michaels, Howard; Hayter, Charles; Laperriere, Norm J.. International Journal of Radiation Oncology, Biology, Physics, Jul2002, Vol. 53 Issue 4, p987, 5p; (AN 7836489)
Fractionated stereotactic radiotherapy for acoustic neuromaPresented at the 1st Canadian Radiosurgery Society Meeting, Banff, Alberta March 4–5, 2005 (oral); the 19th Annual Meeting of Canadian Association of Radiation Oncology, Victoria,... By: Eng-Siew Koh; Barbara-Ann Millar; Cynthia Ménard; Howard Michaels; Mostafa Heydarian; Shenaz Ladak; Sharon McKinnon; John A. Rutka; Abhijit Guha; Gregory R. Pond; Normand J. Laperriere. Cancer (0008543X), Mar2007, Vol. 109 Issue 6, p1203-1210, 8p; (AN 25518396)
Fractionated Conformal Radiotherapy in Vestibular Schwannoma: Early Results from a Single Centre. By: Horan, G.; Whitfield, G.A.; Burton, K.E.; Burnet, N.G.; Jefferies, S.J.. Clinical Oncology, Sep2007, Vol. 19 Issue 7, p517-522, 6p; DOI: 10.1016/j.clon.2007.02.017; (AN 26033957)
Fractionated Conformal Radiotherapy in Vestibular Schwannoma: Volume Data and Cranial Nerve Toxicity. By: Whitfield, G.A.; Horan, G.; Daly, M.M.; Fife, K.M.; Moody, A.M.; Wilson, C.B.. Clinical Oncology, Apr2007, Vol. 19 Issue 3, pS32-S32, 1p; DOI: 10.1016/j.clon.2007.01.369; (AN 24148404)
Quality of life following microsurgery, radiosurgery and conservative management for unilateral vestibular schwannoma. By: Sandooram, D.; Grunfeld, E.A.; Mckinney, C.; Gleeson, M.J.. Clinical Otolaryngology & Allied Sciences, Dec2004, Vol. 29 Issue 6, p621-627, 7p; DOI: 10.1111/j.1365-2273.2004.00881.x; (AN 14945766)
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can't blame BT for running out the back door! Geesh!!!!!! :-X
*sits back with fresh, popped, buttered popcorn to see which direction the debate goes.....*
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Thank you all for your input..on my topic, and others. ;D
Just reading through the different threads and talking to a few people has helped me calm down a lot over the past couple of days. I am really eager to go to my first Doctors appointment and get all my questions answered.
It seems as though a couple specific doctors keep coming up. Dr. Mangham is one of the names I have heard a lot. If anyone has any other input on him that would be great. Also if anyone has heard about Dr. Mayberg at all, any info would be much appreciated.
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Just reading through the different threads and talking to a few people has helped me calm down a lot over the past couple of days. I am really eager to go to my first Doctors appointment and get all my questions answered.
BT -
it's great to see you're still here. I kept noticing that you only had one post for a few days and, like some others mentioned, I was concerned we scared you away ;)
Good luck with your first doctor's appointment. Make sure you let us know how it goes. Even though we all like to debate and post humorous comments, we are here for you and will support you in any way we can - regardless of the treatment decision you ultimately make.
Jan
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Hi BT! Kewl! Great to see you... truly! :) Good luck with the appt... and please let us know what they say. We're here to help.
(Sidenote to Kate and Mark... since the conversations re: peer reviews is now going off topic from original post of Seattle doc.... suggestion is taking it side bar if you want to continue the talk... and if anyone here wants to follow it along, I would PM them privately so you all can be copied on PM's. I don't want focus taken away from BT and his original post. Thanks.)
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Ppearl214 --- well said (re: hijacking the thread)...
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BT
Welcome to the forum.
I am sorry for the reasons you have had to join us but nevertheless glad that you found us … I hope you will fill find this forum most supportive and come to appreciate the wealth of knowledge fellow AN patients have gained, with their own experience, and share with us all. As you feel bombarded with so much information at once- try not to get too overwhelmed…. AN tumors are typically very slow growing. Your tumor, 4mm x 2.5mm, is at a size where you DO have time to do some research and make well informed decisions.
I had surgery in August and ordered information booklets from the ANA after I got home from hospital. In hindsight I wish I had ordered these and read these before hand.
Here is the link. The booklets are not expensive and arrived within the week I ordered these (within the USA)
https://secure.baxinternet.com/~anausa/for_sale.html
I recommend that you obtain more than one opinion. Some neurotologists and neurosurgeons have more experience than others - with AN tumors specifically. You will realize this after a few interviews...You only want a team with lots of experience!
Here is a list of surgeons with the ANA
http://www.anausa.org/physician_list.html
Here is a good list of interview questions to start with.
http://www.anausa.org/questions_for_physicians.html
I chose surgeon #8 of the 9 I interviewed. He and his partner shone and it was obvious in how my questions were answered (and his background checks) that he was going to be exemplary to work with. (And he was!) Not only is it important that you chose a skilled surgeon but also someone that you are comfortable working with and you know will be honest, sincere and upfront with you… and truly has the best interests of "the patient" at heart.
Do not read everything on the forum- it will be overwhelming and scary.
There are many successful stories on the treatment of AN tumors.
Often those people with success put their AN stories behind them and ‘keep moving forward’ with their lives – never to be heard from again (here on the forum.) Often they have a very good and caring support network that helps them through. However not all have that support but do very much find it here on this ANA forum. It is very important to start building up a support network now (pre-treatment).
You will find all sorts of various people here in the forum with experience as diverse as they are. Nevertheless there are many good and caring people here.
It is very important to understand that “size� is not the only consideration. AN tumors are sort of like real estate “Location. Location. Location� … I had a giant tumor with minimal hearing loss and symptoms before treatment- others with small tumors have been debilitated by hearing loss and vertigo. Each case is unique… as are the treatment and recovery outcomes. (I did not have the radiation options as mine was too big and already pressing the brainstem.) Again- remember that typically Acoustic Neuroma tumors are NOT fast growing… so do not let any surgeon pressure you into abrupt decision making.
You DO have time to weigh out ALL your options, research various medical institutions and interview a variety of surgeons.
Find out from your medical insurance how many opinions you can obtain.
Also know that this resource is available
http://www.healthgrades.com/
Read up on the watch and wait forum.
http://anausa.org/forum/index.php?board=19.0
It is also important to plan a surgery time, “if� you ever go that route, which best works for your family and support system.
Information is power… just try not get too overwhelmed by it all at once.
Educate yourself (and your family) so that you can make good and informed decisions… and can plan life accordingly. Having a good support net-work of caring and understanding people is key for post treatment recovery. There are also ANA support groups in various geographical locations that meet in person. Once one joins the ANA (as I did 2+ months post op) - then all the information of resources available in your location are sent to you. In hindsight I should have joined the ANA “before� my surgery.
Seattle has a support group… and closer to where I am Portland also has a support group. Last fall both groups met up in Tacoma (?) for lunch.
Know that there is support here- and you have landed a great website.
Keep moving forward.
Daisy Head Mazy
(Formerly called “4�)
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Sorry I've been slow in getting Seattle info/feedback to you.
I had GK at UW/Harborview last July. My family doctor had had an AN patient a few months before me, and had done some research and recommended I consult with the otolaryngology team at Univ. of Wash. Medical Center (Drs. Duckert, Rostomily and Rockhill). They cover the bases in terms of including both microsurgeons and radiosurgeons. They work as a team, both theoretically, and I've seen in action for 9 months now, in reality. I was happy with them, so I went no further, tho I've heard good things about Swedish too. I'd recommend you schedule a consult with them in addition to your others, if you're getting more than one opinion. You can bring/send the CD of your MRI and they'll download it into their system. Feel free to email me off Board if you have any questions.
Take care. Let us know how you progress.
Dana
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Ppearl214 --- well said (re: hijacking the thread)...
Just doing my job... thanks! :)
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Daisy Head Mazy,
Thanks for all the information. I will be ordering some information packets very soon from that website.
I saw you wrote something about how many doctors my insurance will let me see. Is there a rule about the amound of consultation/interviews you can do?
I will also look into the support groups up here. I hope there will be one meeting soon. I would love to be able to talk to people going through the same experience in person.
Thanks again,
BT
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Hi BT,
The ANA does provide a "Willing To Talk" list of those of us that volunteer time to speak on the phone about knowledge and personal experiences. You can find further info here in this thread:
http://anausa.org/forum/index.php?topic=3252.0
Your notation of attending local support group meetings is also a fab idea. I have attended a few locally and will be attending the next one is our area. The support group leaders truly listen to the needs of the group and often bring in guest speakers of interest for the groups. The ANA can also provide you will the info for your local support group... also can be found from the ANA home page:
http://www.anausa.org/local_groups.html
Some upcoming activies, to give you an idea of how they accommodate the needs of fellow AN'ers:
http://www.anausa.org/group_meetings.html
Hope this helps.
Phyl
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BT,
Answering your question:
RE
“Is there a rule about the amount of consultation/interviews you can do?�
This will depend on the insurance company a patient has. It is best to call and find out of they have a limit. I did not have a limit- but other AN posties have mentioned that they did. It will all depend on your own personal medical insurance policy.
Daisy Head Mazy
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Hello BT,
Welcome. It so understandable in being frighten. Lucky that they found it in time. I spoke to a lady last week that mention because they caught it small and in time she lost very little hearing and no facial paralyzation then the week she lost facial paralyzation but later it all came back.
I tried for a few year for some one to listen to me that something was going on inside my head and ear.
Good luck.
eve
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In terms of AN Docs in the pacific northwest, are there any who are especially familiar with how treatments, particularly radiation, affect musicians? I had radiation a few years ago but still get frequent headaches, sometimes severe, when I play music (a brass instrument) or am in the midst of loud, sustained music.
I guess anywhere in the Bellingham down to Eugene area and east to Spokane would be fine for me to have a consultation with someone.
NWM
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In terms of AN Docs in the pacific northwest, are there any who are especially familiar with how treatments, particularly radiation, affect musicians? I had radiation a few years ago but still get frequent headaches, sometimes severe, when I play music (a brass instrument) or am in the midst of loud, sustained music.
I guess anywhere in the Bellingham down to Eugene area and east to Spokane would be fine for me to have a consultation with someone.
NWM
Hyperacusis (sensitivity to sound) is what I suspect going on here, but I'm not a doctor. Same thing happened to me and this is what they suspected. Too much stimulation can bring on headache.
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Arushi,
I read a little about hyperacusis and there are many similarities to my situation, especially cochlear hyperacusis. Thank you!
I can still use a referral to a pacific northwest Doc to confirm this and set me on a course of action if anyone has a recommendation.
NWM
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Here is a link
http://en.wikipedia.org/wiki/Hyperacusis
I know I have this -ever since the surgery. I wear an earplug in loud circumstances and carry a plug with me at all times. I am finding it difficult to participate in :-\ and listen :-\ to music now.
Have you thought of getting a musician’s ear?
Samples
http://www.westone.com/content/21.html
http://www.ultimateears.com/resource-guide/musician-ear-plugs.html
http://www.hearyourself.com/mplugs.htm
Daisy Head Mayzie
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Thanks for your note and all the links.
Ironically, the place that I play music paid for musicians' earplugs many years ago (worrying about hearing loss) and I had them made. I didn't really use them because of the difficulty inserting them and getting them out.
Now, with AN hearing loss, it didn't really occur to me to try them for this current pain, but once the obvious is made obvious, it is obvious!! Duh!!
Thanks for the suggestion. I feel sort of stupid, but I will give this a try since I still have the plugs. Maybe just leave the one in all the time and see what happens.
Thanks
NW M
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If it hasn't been mentioned earlier in this thread, I'd consider seeing Dr. Sandra S Vermeulen of Seattle.
If she didn't have the answer i am confident that she would know who would.
Best to you
Raydean
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My daughter is only 19 and had AN surgery 3 years ago, at the University of WA Medical Center.
Her tumor was LARGE...and she lost hearing in the one ear...but other than that did well.
Now she is a student at the University of WA!
Dr. Rostomily Neurosurgeon, Dr Duckert ENT. Really thought this team was great.
They have done hundreds and hundreds of these surgeries.
We also consulted with Mayberg...he is very good I hear, but we really liked the University of WA facility better than Swedish.
Talk to several doctors before you decide on one (and ask about Gammaknife if your tumor is small).
(sorry MomofAN pt., had to remove the private email address entry, as site rules note no private info is to be publically noted, but... as a recommendation, you can PM/email behind the scenes here to share private info...... thanks for understanding. Phyl)
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I have to agree with Raydean....go see Sandra Vermuelen. She is my CK doctor and is wonderful...very knowledgeable.
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I agree with what the AN "locals" have said, collectively: there are several very experienced and expert doctors and teams in the Seattle area - the one Raydean mentioned (sorry, can't remember name), Swedish, UW Med. Ctr. Otolaryngology.
NW Musician: My instinct tells me that the UW Med Ctr team headed by Duckert might be very helpful in your situation, or at least be able to head you in the right direction. Within their whole department, they cover lots of bases - hearing, balance, GK, microsurgery, wait and watch. I just have this hunch (maybe I read something in one of the doctor's profiles that showed a particular interest in music?). In any event, I KNOW they'd take your concerns seriously. You might want to set up an appt with them, or perhaps even write Duckert, head of the department, a long letter first explaining your situation. The nurse that arranges all their team appointments is Kirsten; she's extremely responsible. Ask for her.
Should we start planning for a get-together this fall? We met in Olympia last time, but had several of our fellow ANers from Portland come up and thought that next time maybe we should meet a little closer to Portland - Chehalis maybe?
Hi, Raydean! I've been sulking in bad winter weather, not very communicative with anyone. Hope all goes as well as possible.
Hugs,
Dana