Author Topic: A Guide through the Decision Making ProcessPre-treatment phase  (Read 9324 times)

Kate B

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A Guide through the Decision Making ProcessPre-treatment phase
« on: January 27, 2008, 06:20:27 pm »
Pre-treatment phase
One size does not fit all
 
A guide through the Acoustic Neuroma decision-making process
I have been reading as much as I can about Acoustic Neuromas (ANs). I believe that there is more than one way to approach an AN, and one-size treatment does not fit all. It is a personal choice made for specific reasons which take into account all of the patient's unique circumstances. In my own journey, I vacillated between each treatment like a piece of kelp in a vast ocean before I was finally able to make a decision. Each new bit of information that I learned from others on the AN-Support mailing list opened my eyes and caused me to ask my doctors and myself new questions. In turn, it made me think about what I valued in my treatment outcome, and oftentimes caused me to jump from one treatment protocol to another.

Throughout this process, I have learned that there are several key questions one needs to ask oneself in order to make the best decision. Each one of these questions, when answered honestly, will direct you through the process.

What are my expectations after treatment? For example, is hearing preservation something that is possible and desired? Consider whether one's current hearing level is conducive for a hearing preservation treatment approach? If so, certain options are available. If not, then other options can be considered which do not offer hearing preservation, but which may offer better results with respect to other possible complications.

Are my tumor size, location and hearing level the appropriate match for the treatment I am considering? With tumors over 3 centimeters, Gamma Knife (GK) would not be recommended by most Gamma Knife centers. Also, if one's hearing level does not fit the 50/50 rule *, then certain surgeries would be discouraged as options at some surgical centers.

Do I need to know that the tumor is removed, or would I be satisfied knowing that its growth is arrested? If removal is important to the patient, then surgery is the only route, and the patient must then decide which surgical approach suits their situation best. On the other hand, if simply arresting the tumor's growth would satisfy the patient, then radiation is an option.

How important is the availability of long-term outcome data in the decision making process? Fractionated Stereotactic Radiation is the treatment with the least amount of outcome data, from about 1994. Gamma Knife has data from about 1987. Surgery has a much longer history. Important to remember, though, is that even within each of these options, the protocols are constantly being refined in an attempt to improve the patient's outcome. (Note: Published statistics don't minimize the importance of discussion related to a side effect with other patients, it just puts the risk of those effects into proper perspective.)

What does the data from the published literature tell me about expected outcomes? Consider both short- and long-term results. (Note: In addition to the published literature, discussion related to a side effect on the AN-Support mailing list or the ANA guestbook will help the patient understand the reality of living with various outcomes.)
How important is it that the procedure I choose has gone through peer review by doctors? Peer review is the highest standard in medicine because conclusions must be drawn from actual data. No conclusion can be drawn that cannot be supported by the data. In Editorial, Sponsorship, Authorship and Accountability, which appeared in the September 13, 2001, New England Journal of Medicine, it was stated "...we recognize that the publication of clinical-research findings in respected peer-reviewed journals is the ultimate basis for most treatment decisions...This discourse is vital to the scientific practice of medicine because it shapes treatment decisions made by physicians and drives public and private health care policy." (Note: Because they are older procedures, Gamma Knife and surgery seem to have the most literature that has gone through review in the posting of their results.)

What is your age? One neurosurgeon I visited told me that at his age (68 at the time), he would wait and watch even at the risk of going deaf.

If you decide to wait and watch, at what point would you choose to seek treatment? Is it tumor growth to a specific size threshold, or perhaps a drop in hearing level, that would be the catalyst for action? [/b] [/b] [/flash]
Where are the patterns for successful treatments? Which hospitals, clinics and doctors for each of the various types of treatments have the highest success rates? (Note: I monitored the AN-Support mailing list and the ANA guestbook for several months before deciding on a treatment and noted that patients routinely applauded certain doctors with successful outcomes, or that certain patients cited the same institution or doctor for certain complications, such as facial paralysis.)

Once I decide on a treatment, will I have access to a doctor who is an expert in this field? Have I contacted some of that physician's patients for further information? (Note: even if it is a highly regarded institution, I recommend multiple contacts--I found each doctor provided new information.)

How do I determine whether my doctor is an expert? Before scheduling treatment for your acoustic neuroma with any physician, it is imperative that you discuss the doctor's experience specifically with ANs. As a general rule of thumb, seek treatment from providers who have performed more than 100 procedures prior to yours using the same protocol/approach that s/he recommends for you, and who has continued to treat ANs in recent months. Ask the doctors about their rates of complications, and be sure they understand that you are asking specifically for their complication rates, and not quoting the statistics from published literature. It is widely believed that the experience of the physician is one of the most important factors affecting the patient's outcome. We have prepared a list of questions you can use when you visit the doctor.

Will my insurance provider cover treatment at the facility I have chosen? Check your insurance policy and make necessary phone calls to determine if the facility/physician is in or out of the network. Find out what the difference in individual responsibility (i.e., 10% or 20%) will be, depending on whether the facility is in or out of the network. According to your policy, what is the maximum out-of-pocket deductible that would be your responsibility during a calendar year? How can I find out what is considered reasonable and customary charges?
Again, all treatments are viable options for some patients, yet all could have unanticipated consequences. Every patient must make a choice that reflects their tumor's size and location, their age, general health, pre-treatment hearing level and lifestyle. One size treatment does not fit all, and it is a matter of making the most appropriate match--one that you believe in. You must be comfortable with your doctor and have confidence in their experience, expertise and compassion.
* The 50/50 rule suggests that individuals with a pure-tone average greater than 50 dB and speech discrimination less than 50% do not have useful or salvageable hearing. Not all patients with diminished hearing would agree with that, and speech discrimination is a rather subjective test.
 

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No medical decision should be based solely on information provided here. See disclaimer

 
« Last Edit: May 23, 2008, 04:51:16 am by Joef »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Derek

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #1 on: January 29, 2008, 10:36:40 am »
Hi Kate...

Many thanks for your informative post which will be particularly useful to those who have been recently diagnosed and in need of direction at such a vunerable and anxious time.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

mbnolde

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #2 on: January 29, 2008, 05:25:16 pm »
Ditto with thanks for this post....very helpful to me, a newly diagnosed person......

MB

ppearl214

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #3 on: February 04, 2008, 08:25:04 am »
Thanks Kate... I have to say that in the time I've been on this board, your guidance has always been very appreciated. I have used your list of questions upon first diagnosis when I met for the first time with my AN treatment teams and they were extremely helpful, so I thank you.


I'd also like to remind everyone that the ANA does not endorse the websites and listservs noted.  As always, do the best research for you... and hoping that the info you gather will help arm you to obtain the best medical treatment possible for your own, unique AN situation.

Be well, all... and Kate, thanks again!
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: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #4 on: February 06, 2008, 06:59:13 am »
Phyl,

Thank you for your kind words.  I am glad that you found my questions helpful when first diagnosed.  We are all in the same "An" Society together trying to help one another out.

Kindest Regards,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Brendalu

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #5 on: February 06, 2008, 10:00:44 am »
Kate,
Thank you for your suggestions and list.  I am taking it with me to my doctor's appointment and hopefully, this time with all that I have learned from the wonderful people on this forum, I will make a more informed decision and I won't get just one doctor's opinion this time.
Thank you,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

HCSTARWIND

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #6 on: February 08, 2008, 01:13:56 pm »
Thanks Kate for the information and web sites. I will have these questions in hand when I next see my ENT. I usually freeze up at the office.  Again , Thank you. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

Kate B

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #7 on: April 05, 2008, 09:21:14 am »
There are many newbies on the site.  This may help you as you go through the decision making process.
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

mbnolde

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #8 on: April 05, 2008, 02:37:34 pm »
I was diagnosed in December of 2007 and have sent in questions, read a lot of answers to them and other questions on this website and found it very, very helpful!!  I am going for my second MRI this summer to check the growth rate of my AN (it was extremely small)....and I WILL take this list of question areas with me.  I did not have it for the last visit, but will definitely use it this time!!  Thanks for posting it!!  As most patients, I usually forget to ask questions if I don't have anything in front of me.  This blog ROCKS!!

Mebe, a newbie

Nancy Drew

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #9 on: June 23, 2008, 06:11:05 pm »
Kate,

Very helpful now that I am at decision time with growth and hearing loss coming on.  Thanks.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

windy

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #10 on: July 01, 2008, 08:48:47 pm »
Thanks Kate B for the informative post!  It is definitely helpful for the "newbies" and those searching for answers.  It really breaks down all the areas you need to be informed of in the decision making process. 

Windy
* Diagnosed w/AN (9mm x 11mm x 9mm) - 6-10-08
* GK @ UPMC w/Dr. Lunsford - 8-5-08
* Stable MRI - Aug. 2009
* 2 MM's Growth - Aug. 2010
* Lost 60% Hearing - Dec. 2010
* More Growth?? - Wait & Watch - Jan. 2012
* 1 MM Shrinkage - Aug. 2012
* 2 MM's Shrinkage - Aug. 2013
* Slight Shrinkage - Aug. 2014

Kathleen5306

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #11 on: July 02, 2008, 06:59:40 am »
Kate

Where do you have your list of questions to ask physicians posted?  I am just starting to interview surgeons and have my list....however, I am guessing yours is even better!

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

leapyrtwins

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #12 on: July 02, 2008, 07:20:34 am »
Kathleen -

I'm not sure where Kate's questions are posted, but if you received literature from the ANA I believe there is something in there.

You will also find a list of questions for treating physicians on the main page of this website under "overview".

Hope this helps,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kathleen5306

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #13 on: July 02, 2008, 08:37:40 am »
Jan

Thanks.  Also, what can you tell me about your BAHA?  I am already deaf in my right ear, so surgery doesn't have to protect that.  Will a BAHA help me in any way?  I want to think all of this through and be sure I cover my bases.

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

leapyrtwins

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Re: A Guide through the Decision Making ProcessPre-treatment phase
« Reply #14 on: July 02, 2008, 01:49:01 pm »
Kathleen -

I absolutely love my BAHA.  It's a "requirement" that you have complete unilateral deafness (a fancy way of saying complete deafness in one ear), so it sounds like it would work for you.

The BAHA won't give you back your normal hearing, but it will help you in many situations - especially those where someone is on your "bad" side and talks to you.  In the past, I had to turn my entire body towards the person speaking in order to hear what was being said, with the BAHA I no longer have to.  One of the biggest things the BAHA won't give you is directionality, but IMO it's not a big issue.

There are lots of BAHA posts on the forum - just search "BAHA" - and I'd be happy to answer any questions you have.  I'm sure others like Sam Rush, Ellis, joef, lori67, Catflower, dpetty (and more people I'm forgetting) would be happy to answer your questions and give you input also.

If you are serious about possibly getting a BAHA, you should ask your doctor if he/she has a BAHA demo you can try.  It's what "sold" me on the BAHA.  I found the BAHA totally amazing, and couldn't wait for my very own  ;D

Here is a "scientific" link to the BAHA you might find interesting http://www.umm.edu/otolaryngology/baha.htm

You can also find more info on the websites for both Entific and Cochlear.

Jan   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways