Author Topic: Questions about conservative therapy (wait-and-see)  (Read 3381 times)

Ted A

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Questions about conservative therapy (wait-and-see)
« on: May 04, 2007, 12:15:32 am »
I have been reading the discussions at this site for a few weeks now, and the constant stream of new members and the wealth of information have convinced me to post. It’s time to jump in.

I will try to be brief at first, and perhaps post more details later.

In a nutshell…
• Diagnosed in Oct 2005 with a 14mm AN on right side. Symptoms were/are increasing hearing loss and tinnitus. Hearing in right ear is at 30-40%, but seems to be getting worse. No balance or facial issues yet.  Age 47 and in good health otherwise.
• Prior to 10/05, I Googled my way through interesting research on tinnitus, leading to 3 Houston specialists (otolaryngologists) , who I then contacted by email. I visited the doctor who replied.
• Despite asymmetry in hearing test, there was no talk of AN. I insisted on an MRI. I brought my laptop with me to the follow-up and pointed out the asymmetry on several MRI slices. The doctor confirmed the AN.
• I was at first elated. Through my own persistence, I arrived at the cause of my hearing loss and tinnitus. Then I was shocked. I have a brain tumor.
• I now see Dr. Coker at Baylor College of Medicine in Houston. He has offered, and seemed comfortable with all three options. Surgery (RS), Gamma Knife, and wait-and-see.
• Dr. Coker suggested that surgery or GK are both unlikely to improve hearing, but may worsen it. As long as the AN is stable, he suggests preserving my hearing as long as possible, and use a conservative therapy approach with MRIs every 9 months.

Questions:
• Does wait-and-see seem reasonable? I don’t know how long until my hearing becomes non functional. I predict it will be less than 18 months. If it goes, I won’t get it back with treatment.
• How long can conservative therapy last? How often does a tumor stop growing or stabilize on its own without GK radiation?
• If I have GK or surgical treatment, might it stop the hearing loss? From some of the postings at this site, there is some evidence that this could be the case.
• Can I expect facial paralysis or balance issues to occur next? Is there typically a progression of new symptoms when the hearing starts to get below 20%?
• Can anyone recommend another good surgery team in Houston? Dr. Coker (may) retire before I commit to GK or surgical treatment.

Thanks. This discussion group is give-and-take, and I hope others benefit from my observations and subsequent discussion.

tony

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Re: Questions about conservative therapy (wait-and-see)
« Reply #1 on: May 04, 2007, 12:27:30 pm »
I saw you note and have some sympathy with your situation
Yes - a dilemma for sure and in some of the cases there are no clear
answers - we cant easily see into the future.
The bit you may not have looked at (and others here may help)
the watch and wait policy does require a degree of control
of your own nerves and anxieties - only you can decide if you
are comfortable with that weight for few years or more.
You are correct that in most cases the best treatments are usually
a holding action - to stop further problems
Seldom does hearing get better
On the positive side, at the size you have - you do have time
Time to get 2nd or 3rd opinions
- consider other options or timescales
I would suggest you might want to look the timescales
in terms of your own life/career/family situation
Best of Luck
Tony

Ted A

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Re: Questions about conservative therapy (wait-and-see)
« Reply #2 on: May 06, 2007, 09:58:04 am »
Thanks Tony and Bruce for your replies.

At this point, 18 months since diagnosis, I feel that wait-and-see remains the best option. The only obvious annoyance is my hearing degradation. Other than that, it is still convenient to deflect the serious nature of the AN in my daily life. However, the candid and detailed accounts in this Discussion Forum are certainly a valuable reality check. I'm sure that if symptoms get more serious, my tone will change.

Wait-and-see does have disadvantages:
• It prolongs the inevitable (I’m OK with that for now)
• The tumor can get bigger at an unknown rate, potentially limiting future treatment options.
• Waiting may preclude or postpone hearing aid therapy.

For example, one future treatment option is the device that redirects sound from the bad side to the good side, thus aiding overall hearing quality (e.g. TransEar). My impression is that proceeding along this path requires some resolution on the tumor itself (i.e. remove it or kill it).

I will post this question under the Hearing Issues Section and see what surfaces.

Regards, Ted

BeJoi

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Re: Questions about conservative therapy (wait-and-see)
« Reply #3 on: May 15, 2007, 05:23:21 pm »
Hi Ted,

I'll tell you what I was told today by a neurosurgeon and radiation oncologist.  Wait and watch is fine.  ANs can shrink on their own, remain stable or grow.  So waiting sometimes is the most prudent thing to do, at least until you have an MRI to compare later on.  Where waiting may not be advantageous is if the AN is very close to the brain stem and may be growing into it.   In my case, I am not waiting.  My hearing has diminished but is still at the bottom level of normal in most frequencies.  I'm doing fractionated radiotherapy on the Trilogy System to hopefully preserve the hearing that I have.  I think, but am not sure, that once you lose hearing it is very hard to recover it.  I'd rather not lose more at this point.

It's a personal decision for everyone.  I got opinions from 5 doctors, and no two of them said the exact same thing.  So in the end, I'm making my decision based on my own preferences and intuition about my situation.  Good luck with your decision.

Beverly

BeJoi

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Re: Questions about conservative therapy (wait-and-see)
« Reply #4 on: May 16, 2007, 05:57:13 pm »
Hey Bruce,

It is a tough decision.  My hearing has started doing weird things in the past week.  I literally hear squeaking sounds, believe it or not, like somebody's squeezing a rubber ducky!    It's definitely different.   I could wait and see in another six months, but there are other issues involved in this decision--like financial, time, etc.  I don't know, I'm going to think it about it some more.  Boy this is hard.

Beverly


johnsli

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Re: Questions about conservative therapy (wait-and-see)
« Reply #5 on: May 17, 2007, 11:15:25 am »
Just went to the doctors on Tuesday, with the intent on deciding on surgery.  Much to my surprise, the doctor suggested to wait and see.  My hearing has not changed since my dx in March, my balance is the same, the tinnitus will not go away after surgery, and my hearing will be gone with either gamma or surgery.  So, as long as I feel ok (that sounds funny) with no changes other than some minor facial tingling and a little speech issues.  I am having another MRI on 6/20/07, and as long as it has not gotten larger and I feel OK we will wait another 6 months and do another MRI.  Heck, the dr said it was probably there about 20 years.  He also said this is not a quote unquote "brain tumor".  It is a tumor in bone, therefore, there is not much room for it to grow, hence causes many problems.  I guess we will just watch and see over the next month.  You guys are always in my prayers every day.

LOL
Laura

 


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