Author Topic: decisions decisions????? And confused.  (Read 5694 times)

tenai98

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decisions decisions????? And confused.
« on: August 30, 2008, 08:11:47 am »
Okay, after reading many postings, and reading many sites, I am now wondering why my ENT suggested wait and watch????  Then he went on to say that if it grows, he prefers the translab!!!!  I still have 60% hearing in my ear and some deafness in my other ear.  First and foremost I would want to preserve facial then hearing....but why not both???  I read that middle fossa can give me a better chance at hearing preservation and good faciial preservation??? I am so confused!!!!!! I am going to demand from my GP to set me up with neurosurgeons at the Toronto location.  Its only a five hour drive from here. I'm also going to send my MRI to House in Cali. So much info is leaving me stressed!!!!!!!!!!!!!!

Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

leapyrtwins

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Re: decisions decisions????? And confused.
« Reply #1 on: August 30, 2008, 09:06:59 am »
Joann -

treatment decisions can be confusing  - and nervewracking  :P

I looked through your prior posts and checked your profile, but I can't find the size of your AN.

Regardless, watch & wait is usually something docs recommend when ANs are relatively small and not causing any big problems.  Since ANs typically grow very slowly, the theory is that you have time to wait for treatment.  Sometimes patients are able to watch and wait for years, so watching and waiting works very well for them.

Whether or not translab is right for you IMO is a personal choice.  It might be the preferred treatment of your doctor but you may or may not decide to choose it.

I think that your idea of getting other medical opinions is a good one.

Also, I don't know if you've done it yet or not, but you should contact the ANA and ask for their literature.  It explains ANs and their treatment in very basic language which I found helps the whole situation be less stressful.

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

Sheryl

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Re: decisions decisions????? And confused.
« Reply #2 on: August 30, 2008, 10:04:26 am »
Hi Joann - I don't envy your position (decision making time) at this point.  Both hubby and myself have been there many times regarding different medical issues - it's an awful "roller coaster" ride. 

I have been a "wait and watcher" for 6-1/2 years with only a 3 mm change in that time and no symptoms.  I've been told that even a 2 mm change is not counted as growth but attributed to technical differences - different machines, different technicians, different doctors reading the MRI - just think how small a millimeter is and how your head could be off that much when placed on the MRI table.   My tumor is on a different cranial nerve (9th) as opposed to the 8th  (AN) but basically the same - benign, but it would affect my swallowing, gag reflex, and voice (hoarseness). 

It sounds like you are headed in the right direction by checking out all your possibilities and remember this is no emergency.  Please keep us informed and do not hesitate to ask questions - none are silly.  There are some great people on this board who are very knowledgeable and helpful.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

tenai98

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Re: decisions decisions????? And confused.
« Reply #3 on: August 30, 2008, 02:47:19 pm »
My Booger is 14mmX11mmX11mm with 9mm intracanalar....but the doc says its really only about .6cmX1.4cms....he doesnt count the lenght....Where do I get the info phamphlets???....
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

leapyrtwins

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Re: decisions decisions????? And confused.
« Reply #4 on: August 31, 2008, 10:44:07 am »
Where do I get the info phamphlets???....

They come directly from the ANA.  Their contact information is on the main page of this website.

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

oHIo

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Re: decisions decisions????? And confused.
« Reply #5 on: August 31, 2008, 03:59:44 pm »
Joann,
It is such a hard decision making a decision about treatment!!  The approach your doctor is recommending, if you end up having surgery may be due to the positioning of the tumor.  Although I had very minimal hearing loss, I was given the option of a combination retrosig/MCF (huge incision with only a 20% chance of saving my hearing) or a translab.  The translab was also recommended by House, because of the position of my tumor.  I was watch and wait for 9 months but my tumor started growing and we decided based on my symptoms (recurring episodes of disabling vertigo) surgery was the way to go. 

My hearing was important to me and giving up perfectly good hearing (it was to me anyway) was difficult.  After surgery, talking with the doctors and seeing even with the translab, the difficulty my tumor presented, I am happy that is the approach my doctor took. 

You have the option of time to make a decision about what you feel is best for you.  Do not feel pressured into deciding on something you don't want.  The results are forever.  If they do not feel they can spare your hearing and your tumor is the size that watch and wait makes sense, you can wait until your hearing declines, then proceed with a translab.  Had I not had bouts of severe vertigo that lasted for days, that is what I would have chosen.  Just a thought...

Good luck in your decision making process.

sgerrard

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Re: decisions decisions????? And confused.
« Reply #6 on: August 31, 2008, 05:55:49 pm »
Hi Joann,

First off, I would take advantage of two free consulations from real experts.

You can get one from House Ear Clinic: http://www.houseearclinic.com/acousticneuromaconsultation.htm

You can also contact a Cyberknife doctor for a CK evaluation: http://www.cyberknifesupport.org/about_the_doctors.html

Preserving hearing is a tricky business, and not like selecting an option on your new car. Sometimes it works, sometimes it doesn't. Middle Fossa, the classic hearing preservation approach, is usually considered more risky for facial nerve preservation, so there are some trade-offs. CK and other radiation treatments have good results, but they are radiation, and how you feel about that makes a difference.

Given the uncertainties, watch and wait is not unreasonable. On the other hand, if you are going to try to preserve hearing, it may be better to act while you still have enough left to preserve. So, take your time, but work through the process until you find answers that are satisfactory to you.

Best wishes,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Mickey

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Re: decisions decisions????? And confused.
« Reply #7 on: August 31, 2008, 08:09:06 pm »
Hi Joann! I know it`s a rough decision. I`m doing the same thing W+W. My whole feeling behind it is if it don`t grow leave it alone. Of course it has to be relitively small and symptoms as such as it dosn`t really make your life miserable. May latest findings are that about 40% arrive at a certaing size and stay that way. Being the grow so slow anyhow  I`d like to at least give that theory a chance. Good Luck, Mickey

Kate B

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Re: decisions decisions????? And confused.
« Reply #8 on: August 31, 2008, 09:54:35 pm »
Here is sosmething I wrote when I went through my AN research back in 2001. The decision making tree may be of help to you.

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 (that is what the discussion forum was in 2001) 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.
 

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

 

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

Please visit http://anworld.com/

sharondb

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Re: decisions decisions????? And confused.
« Reply #9 on: September 16, 2008, 12:32:26 am »
I so feel your pain,I was diagnosed last year,and the doctors told me with the size tumor I had it would be fine to watch and wait,now its a year later,the tumor has grown,so I need to get it out.....one doctor suggest translab,another one suggest behind my ear to try and save my hearing,and yet another one suggest radiation,I have never heard of a problem with so many options to treat it....oh yeah lets not forget the time frame,one wants  to do it in October,everyone else I spoke with said after the first of the year is fine,which of course,being that I have waited this long,I would like to do it after the holidays,but I am afraid to wait at the same time.Its crazy making stuff huh.....Anyway take Sharondb   

tenai98

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Re: decisions decisions????? And confused.
« Reply #10 on: September 16, 2008, 05:53:57 am »
Hi Sharon
Where are you located?  US or Canada?  The docs in Canada tend to take the wait and watch approach.  I've decided to have it removed but not til about this time next yr if it doesnt grow aggressively.  I have my second MRI in Feb 09.  This booger will not interfere with the plans I have made.  Leaving for Mexico in Jan for six weeks.  Then home for two weeks then off to Florida for a month.  When I get back home, then I will be flying out west to Alberta to visit my son, daughter in law and new grandbaby...Then if this bogger iis slow growing I will wiat til after next summer to have it removed.  It will NOT stop me from enjoying my favorite hobby during the summer..FISHING.YAAAAAAA....But if it comes down to the crunch I will set aside my plans to have it removed at an earlier date...
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Tumbleweed

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Re: decisions decisions????? And confused.
« Reply #11 on: September 20, 2008, 11:58:44 pm »
Joann:

Here is a link to a post I recently made comparing surgery with various radiation treatments (it's the sixth post on the page):
http://anausa.org/forum/index.php?topic=6670.0

As you have a small tumor, you don't need to rush into treatment. That said, if the tumor gets to be much larger, middle fossa surgery will be ruled out.  When the tumor grows deep into the CPA (cerebellopontine angle, a triangular space deep inside the skull that the internal auditory canal dumps into at its medial terminus), the middle fossa approach can't reach it all to remove it. At least that's what Dr. Brackmann (pre-eminent surgeon at House Ear Clinic) told me. That leaves translab and retrosigmoid approaches as the two remaining standard procedures. (Endoscopic surgery is also an option, although the prevailing opinion is there is greater risk of bleeding using that technique).

I hope the link helps put your options into a clearer light.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08