Brand new, scared, and looking for a doctor in Seattle

[BT]

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

[Kaybo]

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

[leapyrtwins]

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

[Kate B]

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

[Mark]

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

[Kate B]

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

[Mark]

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

Mark

[OTO]

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...

[Kate B]

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

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

[leapyrtwins]

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

[Kate B]

[

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

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

[leapyrtwins]

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 

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

[Kaybo]

I am totally, 100% in agreement with Jan!!
K

[leapyrtwins]

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

[ppearl214]

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