Author Topic: Starting Point for Newly Diagnosed  (Read 7943 times)

Kate B

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Starting Point for Newly Diagnosed
« on: February 03, 2008, 08:29:32 am »
Welcome to this forum.  If you are here as a newly diagnosed person or one related to a newly diagnosed person, you have come to the right place. You will soon learn that there exist several types of treatments which can become overwhelming. This is a wonderful place to gather information that can be used in the decision making process.

To assist you in your journey, there are several tools that may help you along the way.

1. A guide to the decision making process is a thread on this board.  There are questions to use that can help you narrow your choices. http://anausa.org/forum/index.php?topic=5786.0

2.  Questions to ask 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/

3.  Information to the ANWORLD website
http://anausa.org/forum/index.php?topic=5829.0 7.   Several years ago, four patients compiled a website condensing information about treatments. The authors come from different vantage points.  One is wait and watch status, One underwent radiosurgery, one had retrosigmoid, and one had middle fossa.  It is a great starting point for those beginning their AN Journey. It was written to assist newly diagnosed patients. It includes explanations of the types of treatments, AN centers around the world, questions to ask the doctor for each of the treatments, and much more.

4.  I have compiled a chart comparing some of the outcomes related to each procedure. It is an attempt to look at the patterns of outcomes related to various treatments (Send me a personal message and I will send you a copy of the chart)

5. The ANA organization and the Willing to Talk forum as mentioned in the thread http://anausa.org/forum/index.php?topic=3252.0

6. All of us on this site who are willing to share their personal experiences!

7. There is also a discussion forum available in which different points of view are offered.

http://www.anworld.com/mailinglist/

Good luck as you begin your information search.

Kate
« Last Edit: February 19, 2008, 07:07:23 pm by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

ppearl214

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Re: Patient to Patient
« Reply #1 on: February 04, 2008, 06:56:38 am »
Hi Kate and thanks.... great links and valuable info....

Please know that the ANA does not endorse these websites and all final info should be discussed soley with your own treating physicians.


Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kate B

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Re: Patient to Patient
« Reply #2 on: February 06, 2008, 07:05:53 am »
Hi Phyl,

Yes, each person's journey is unique. 

I agree, that no medical decision should be based on any of our comments or any one website. It is a decision to be made that reflects a person's own situation after consultation with their doctor.  The key of course is that an informed patient can work in conjunction with the doctor.

This site  (www.anworld.com) is just another source of information for others to use. Just as you were able to access the questions, it is one of many tools on the site that newbies can use.

Again, thank you for your kind words to me and the others on this site.
Kindest Regards,
Kate
« Last Edit: February 06, 2008, 07:10:00 am by Kate Besserman »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: Starting Point for Newly Diagnosed
« Reply #3 on: February 24, 2008, 10:53:01 am »
Here is a website that may also be helpful that gives explanation about acoustic neuromas as related  to size and other descriptions. 

Overview of AN’s:  http://www.emedicine.com/ent/topic239.htm


Kate
« Last Edit: February 24, 2008, 10:58:14 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

macintosh

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Re: Starting Point for Newly Diagnosed
« Reply #4 on: February 24, 2008, 01:25:30 pm »
This emedicine site has been posted to this forum before, and several of us objected to it as an unbalanced, prosurgery, anti-radiosurgery site. It is not a peer-reviewed study. I'm not sufficiently computer-savvy to post a link in this message to the last round of discussion of this site, but if you put the link in the search box for this forum, you will come to that discussion. 

 The best material to consult before making a decision is peer-reviewed scholarly literature.

Mac

nancyann

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Re: Starting Point for Newly Diagnosed
« Reply #5 on: February 24, 2008, 02:48:34 pm »
I personally found this informative (albeit after the fact) since I was an idiot & went into the surgery blindly.
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

OMG16

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Re: Starting Point for Newly Diagnosed
« Reply #6 on: February 24, 2008, 03:21:05 pm »
Kate just an FYI the emedicine articles you have to be careful with as the info in the articles can be 10-20 years old.  They are reviewed  often but the info is seldom updated at least on the health consumer side.  I just thought this info would be helpful to you.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Kate B

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Re: Starting Point for Newly Diagnosed
« Reply #7 on: February 24, 2008, 03:49:07 pm »
This emedicine site has been posted to this forum before, and several of us objected to it as an unbalanced, prosurgery, anti-radiosurgery site. It is not a peer-reviewed study. I'm not sufficiently computer-savvy to post a link in this message to the last round of discussion of this site, but if you put the link in the search box for this forum, you will come to that discussion. 

 The best material to consult before making a decision is peer-reviewed scholarly literature.

Mac

Mac,

I am in complete agreement about peer-reviewed studies; however this is not a study publishing results about a specific treatment and its outcomes.  It is a meta-analysis and it takes other peoples research to report information about acoustics. 

The purpose of the article is  to report information about acoustics and treatment through primarily surgery due to the lack of studies and long term outcomes relative to lower dose radiation treatments.   This article gives a nice summary relative to the upsides and downsides for each surgery treatment.

Today I made another emedicine post that discussed radiation primarily.  It wasn't  balanced either.  I find it  curious when people go after something for balance. Trust me, even the ones that appear to be balanced still have their preference. If you want to criticize this link because you feel it is too pro-surgery then you have to be willing to criticize the other link for being too pro-radiation.  It is my opinion, that this article and the radiation article have great information for newbies as they search.  It like anything else should be one piece of information only.

My primary goal on this site is to give people information that allows them to make an educated decision.

Kindest Regards,
Kate

« Last Edit: February 24, 2008, 04:34:56 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: Starting Point for Newly Diagnosed
« Reply #8 on: February 24, 2008, 03:54:27 pm »
Kate just an FYI the emedicine articles you have to be careful with as the info in the articles can be 10-20 years old.  They are reviewed  often but the info is seldom updated at least on the health consumer side.  I just thought this info would be helpful to you.  16

16,

I agree...Much of the research out there in this article is 10 or more years old. Some of the difficulty with newer treatments ( I include Cyberknife) is that their protocal is only 10 years old.

I did a quick tally of the articles.  The  latest one is 2006 and the oldest is 1987 with most of them (13) being dated 1998 or 1999.
17 articles are dated 1997 or later and 7 articles are pre 1995. 

Kate

« Last Edit: February 24, 2008, 03:57:48 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

macintosh

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Re: Starting Point for Newly Diagnosed
« Reply #9 on: February 24, 2008, 04:07:56 pm »
Dear Kate B--

I realize that we all come to this board with the praiseworthy intention of helping others. But I do not think that it is helpful to provide added visibility for a site that contains a series of misleading statements. Anyone who wants to see the detailed objections that were posted the last time this emedicine site was promoted on this forum can enter the site address into the forum search box.

Please, newbies, do your research. This emedicine site does not provide an accurate meta-analysis of the peer-reviewed literature.

Mac

Kate B

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Re: Starting Point for Newly Diagnosed
« Reply #10 on: February 24, 2008, 04:15:27 pm »
But I do not think that it is helpful to provide added visibility for a site that contains a series of misleading statements. Anyone who wants to see the detailed objections that were posted the last time this emedicine site was promoted on this forum can enter the site address into the forum search box.
Mac

I couldn't agree more that much research should be done by all. When it comes to conducting research on patients, I agree that peer reviewed is the gold standard before results are published.  Again, this is not a particular research study it is a meta-analyses.


To your point,how do you know those are not peer reviewed articles used in the meta-analysis?

I couldn't help but note that you were the one who raised the objections in the earlier thread to this link because you disagreed with the radiation statements. Clearly you are an advocate of radiation as noted in your posts.  http://anausa.org/forum/index.php?topic=3885.0

You and I are more in agreement than not including --- peer reviewed research studies.. That was one of my decision points in my own process and narrowed my field of choices.  We both also highly regard UPMC as an institution. 


Kindest regards,
Kate
« Last Edit: February 24, 2008, 10:10:46 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Joef

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Re: Starting Point for Newly Diagnosed
« Reply #11 on: February 24, 2008, 09:35:33 pm »
Quote
To your point,how do you know those are not peer reviewed articles used in the meta-analysis? There is a specific publication that indicates peer review.  What points specifically do you object to besides the radiation bullets?



Lets not get into a discussion about the merits of these links... as we will never prove anything...

* now who has the popcorn ? *
« Last Edit: February 24, 2008, 09:37:06 pm by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

OMG16

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Re: Starting Point for Newly Diagnosed
« Reply #12 on: February 24, 2008, 11:22:26 pm »
It is my understanding that the articles are written from peer reviewed studies thus the needed references in the article.  So that being said I believe the answer would be yes and no.  As far as the no part that is due to the particular article is not peer reviewed and able to stand on it own as such, but all the info compiled has been peer reviewed.  I just wish they would update their articles more frequently and completely as does our Primary Care Dr.  I hope this is helpful to all.  16

Can we have Kettle popcorn?
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

ppearl214

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Re: Starting Point for Newly Diagnosed
« Reply #13 on: February 25, 2008, 02:54:12 pm »
*sits back in chais lounger chair with favorite beverage, passes Kettle (yes, Kettle!) popcorn down the line*
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

OMG16

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Re: Starting Point for Newly Diagnosed
« Reply #14 on: February 25, 2008, 09:10:37 pm »
Yeah Kettle Corn My Favorite.  What exactly is our favorite beverage today?  ???
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

 


anything