Author Topic: Trying to make a decision  (Read 1713 times)

DebraMIH

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Trying to make a decision
« on: September 21, 2017, 09:25:27 pm »
In 2012, I developed sudden sensory hearing loss in my right ear resulting in no useful hearing on that side. Unfortunately, an MRI showed an incidental finding of an AN on the left side where I have useful hearing.  I have been following with MRIs but lately the tumor has grown to 5.1 x 5.4 x 4.8mm and I need to treat.

I now have four different opinions from four different experts which makes this decision really difficult.  Obviously, hearing preservation is key as  I completely rely on that ear.

Mid fossa surgery has been ruled out as two risky due to it sitting in the auditory canal.

House Clinic is recommending Middle Fossa Decompression.  It sounds like a good idea, however, I am worried about leaving the tumor there because of the possibility of developing hearing loss, facial nerve impairment.... and if it continues to grow at the expected rate I would have to deal with a cm tumor in a place that already had surgery.

Gamma Knife was recommended, however, the studies show that there is a potential for hearing loss over the next 5-7 years.  The GK physician however, feels that the cochlear is far enough away from the tumor so that there would be minimal radiation getting to it.

Fractionated Radiosurgery was recommended today.  It sounds like a viable option because the oncologist feels that he could target the tumor and this method would best protect the cochlear. 

I am a 61 year old woman and other than this weird duo of ear issues, in good health.   Do you know anyone who had these surgeries more than a couple of years ago and had preserved hearing?

thanks!


DebraMIH

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Re: Trying to make a decision
« Reply #1 on: September 22, 2017, 07:00:00 pm »
I had another 'opinion' today. Actually doc was great as I asked him to review the 5 different opinions we heard from 5 different physicians over the past 2 weeks.   However, no consensus.  (Remember, I am deaf in the right ear and the schwannoma is on the left....)

doctor #1:  the tumor is sitting in the auditory canal and will cause deafness.  I suggest you get a cochlear implant asap. Once it really starts growing it will take off. Suggest mid fossa surgery.
doctor #2:  the tumor cannot be safely excised through mid fossa surgery as touching the auditory nerve will give you less than a 50% chance of maintaining hearing.  I suggest you do a decompression surgery now to allow the tumor more room to grow and less likely to affect hearing.
doctor #3:  Gamma knife surgery will provide the safest most efficient method to target the tumor. Best to get it now before it grows as there is a space between the tumor and the cochlear which will allow for less radiation getting to the cochlear.
doctor #4:  Fractionated radiosurgery would enable radiation to target the tumor while allowing the least amount of peripheral radiation to get to the cochlear.
doctor #5:  It isn't only the cochlear that can be affected by radiation, it is also the blood vessel feeding it and it will be exposed to radiation and potentially cause hearing loss within 7 years. 

New doc:  Not sure of the rate of growth. maybe it didn't grow as much as they thought from last year.  Worth waiting and watching another year.

Ugh!  have another opinion next week!

ANSydney

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Re: Trying to make a decision
« Reply #2 on: September 23, 2017, 05:45:47 am »
I've posted many references in this forum that the best way to preserve hearing for as long as possible is observation. Here's a handy one for you https://www.bhtinformatie.nl/pdf/ingrijpen.pdf

What has you growth versus time looked like and what did doctor last doctor say growth was? Did you get a CD of your MRI and look yourself; they come with an easy to use measurement tool.

The fact that every doctor has a different best treatment tells me something.

Joan Mingo

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Re: Trying to make a decision
« Reply #3 on: January 13, 2018, 07:53:01 pm »
I'm not a Dr and have only had AN for 18 mths but if it were me would do watch and wait. It seems from what have read in last 18 mths, hearing loss seems very likely with surgery. Just what I would do. Especially with hearing loss already in non AN ear! I have almost complete loss in AN ear and tumor not big so seems to be crap shoot on size vs hearing loss. I am getting hearing aid to assist my right ear which has small age related loss (60 yrs old). Want to preserve good ear as long as possible.

Good luck.
ANA diagnosed Dec 2016
14x4mm schwanoma left ear
75% hearing loss- 12% recognition remaining
Watch and Wait

v357139

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Re: Trying to make a decision
« Reply #4 on: March 09, 2018, 08:53:11 pm »
Debra - couple questions.  What caused that hearing loss on the right side? Do you have NF2? And are your measurements 5.1 x 5.4 x 4.8mm really millimeters?  I've never seen millimeters with decimals before, because a millimeter is so small to begin with.  Just want to be sure.

The range of different opinions is not suprising.  Each doctor is different.  I had many different opinons also.  One way to judge, is to follow up with each doctor.  For what they are proposing for you, ask them how many they have done, and what their success rate in preserving hearing is.  And how confident are they that they can save your hearing.  This can be a little uncomfortable to ask for some people.  But especially in your case, you need to get a sense from them of how confident they are, based on their experience.
Looking forward to hearing back from you.

And it would be good to be sure it is really growing or not.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Larryvh

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Re: Trying to make a decision
« Reply #5 on: April 06, 2018, 07:53:06 am »
Debra - couple questions.  What caused that hearing loss on the right side? Do you have NF2? And are your measurements 5.1 x 5.4 x 4.8mm really millimeters?  I've never seen millimeters with decimals before, because a millimeter is so small to begin with.  Just want to be sure.
Rich

A 5x5x4 CM Tumor would most likely not be a candidate for Gamma Knife or Proton Beam Surgery.

My advice, for what it's worth... having been through multiple surgeries...

At 61 years of age, Gamma Knife and Proton Beam would be my first choice.

But know this, not all Gamma Knifes are the same.

The latest versions, The Perfexion and the Icon can deliver fractionalized treatments, with much lower dose of radiation to surrounding tissue. But they are limited to about 5 treatments.

The Proton Beam can be more fractionalized, up to about 30 treatments. But there are only a few Proton Beam Treatment Centers in the world. The cost of a Proton Beam Center is astronomical compared to a Gamma Knife. You may run into problems with your insurance, depending on your location and such...

Either way, with Gamma Knife or Proton, you walk out of the hospital that day.
Now, that no head frame is necessary, it is little more than having an X-ray.


KeepSmiling

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Re: Trying to make a decision
« Reply #6 on: April 06, 2018, 10:34:14 am »
Hi there.  Decisions are always trying. Stay positive !

A few things to add to the discussion:

1. I believe that tumors that are 2 cm tumors or greater are usually NOT treated by Proton Therapy, so the measurements of the  Acoustic Neuroma (AN), also called Vestibular Schwannoma (VS), are important. 

2. I have learned that it is important to have at least 2 MRI's of the brain that are spaced apart, to determine the rate of growth.

3. To understand whether you are a good candidate for PROTON PENCIL BEAM, (the newest proton technology) you should  submit your MRI of the brain for a review by the team of Proton Therapy doctors, and respectfully request a review.

4. There have been patients who have had one session of Proton Therapy (I know of one or two),  but we had read about the merits of fractionated Proton therapy, which basically means having many sessions spread over a number of days.. The merits of having fractionated proton therapy are discussed by a medical physicist in the following video: https://www.youtube.com/watch?v=DFKAFXDguFo

My husband had Proton therapy - 28 sessions on 28 separate days. He did have not one session.

5. Proton Therapy was completely covered by Aetna Insurance. There is a strong argument that Proton Pencil Beam Scanning and Proton Therapy is not expensive , and this is related to how it works. The medical physicist in the video: https://www.youtube.com/watch?v=DFKAFXDguFo does a much better job describing how it works, but basically ->Proton radiation therapy is unique, because more than any other type of radiation, protons allow radiation to be directed to a very limited area, which reduces potential damage to nearby healthy tissues. The lack of medical care after the procedure = reduction in expenses. The cost of lodging in a distant city was offset by us because he worked full time each day from a virtual office and simply used what would have been a lunch hour to get his Proton Treatment, and he would work a little later each evening. He had no brain fog, no fatigue, no issues. He worked out at the gym almost every day too.

6. My husband is willing to talk to you about his experience, however he works full time and so I need to schedule when the conversations happen. Please send a private message to schedule a conversation.

Whatever you decide, best wishes for you!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

 


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