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

[Mark]

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  . 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"  .

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 


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

[leapyrtwins]

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 

Jan

[Kaybo]

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...   
K

[Kate B]

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 

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

[Kate B]

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

[MaryBKAriz]

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

[Jill Marie]

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

[jb]

I think I just saw BT running out the back door!    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! 
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)

[ppearl214]

can't blame BT for running out the back door! Geesh!!!!!! 

*sits back with fresh, popped, buttered popcorn to see which direction the debate goes.....*

[BT]

Thank you all for your input..on my topic, and others.

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.

[leapyrtwins]

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

[ppearl214]

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.)

[OTO]

Ppearl214 --- well said (re: hijacking the thread)...

[4cm in Pacific Northwest]

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 “beforeâ€? 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�)

[Dana]

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