Author Topic: CONFUSED.....  (Read 1103 times)

marshfield71

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CONFUSED.....
« on: August 28, 2018, 10:03:46 pm »
Hey all,


 Newly 28 years old,  diagnosed 2 weeks ago with 1.3 cm AN in right ear. Symptoms at this point are basically only mild tinnitus and small amount of hearing loss at higher frequencies, doesn't really affect me in a functional hearing sense.  This forum has been great for information and support in this stressful time, thanks to all.
So I've been sending out my MRI images and scheduling meetings with a lot of doctors, and am a bit confused as to the messages I've heard so far.
Drs Selesnick from Weil-Cornell, Brackmann from House, and Friedman from UCSD all recommended surgery, retro-sigmoid, not radiation, due to my age. The doctor from USC (can't remember her name) believed I was a candidate for middle fossa as well, but said to wait and get another MRI in 6 months. Scheduled to see Golfinos, Sen, Kondziolka from NYU and Sisti from Columbia next week.
 However, I met with Dr. Chang from Stanford and his team today and they confirmed what I had already thought. Here are the stats as he laid them out (for my tumor size and current hearing ability :
Cyberknife- 97% tumor control rate, basically 0% chance of facial issues since they do fractionated, quick recovery, no long term side effects etc, chance of hearing preservation in the 80% range if not higher. Change of malignancy 1/10,000.
Surgery- 98% tumor control rate (I guess if they have to leave some on facial nerve and it regrows) Chance of facial issues- 5%. Hearing preservation- at best 50% chance although I've heard as low as 10%. Plus all the associated time in hospital, recuperation afterwards, balance issues.
I understand that we don't have studies ranging so so far for radiotherapy, but as per Chang, if its controlled after the first few years, chances of it growing much later on are small.
The choice to do radiotherapy seems fairly clear to me. I'll take the 3% chance of having a potentially more difficult surgery later on, if it lets me have a better chance at hearing preservation and no chance of facial issues, and no complicated operation.
So my question is:  Why are all these other doctors telling me not to? Just because they are surgeons and not oncologists?? Am I missing something?
1.3 cm AN right side
mild high frequency hearing loss and tinnitus
diagnosed 8/15/18
treated w/GK by Dr. Konziolka 10/04/18

Gtmochi

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Re: CONFUSED.....
« Reply #1 on: August 29, 2018, 12:57:32 pm »
Hi! Depending on with whom you speak, you’ll get different answers. So here’s my attempt:

Because CK or any radiation is fairly new, there are only 30 years (I think) on the record of its use and effect on the brain. So, some people feel that depending on the age of the patient, that’s a risk, as there is not data on what will happen when you are 58. Meaning what if something malignant happens with the surrounding tissue, or what if the tumor starts up again.

Because of the size of my AN, Dr. Chang quoted my success rate at 93%. I like those odds. I am not overly concerned about what happens in 30 years (I am 43). All sorts of medical advances will have happened, and who knows what else fate has in store for any of us?

Additionally, some patients hate the idea of an AN hanging out in their head - they want it gone. It is scary for many to have radiated tissue just sitting there for all eternity.

I too met with many doctors, and the breadth of conflicting recommendations as well as information was fascinating. My independent (and biased!) conclusion was that doctors are most comfortable with where their training and  experience lies.

So. In a nutshell, everyone has their own bias and perspective. Research, understand the pros and cons, and go with your instinct. My only recommendation is to talk with an equal amount of CK or GK focused doctors as surgeons.

Best,

Jessica
« Last Edit: August 29, 2018, 12:59:04 pm by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

ANSydney

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Re: CONFUSED.....
« Reply #2 on: August 29, 2018, 06:04:09 pm »
I like the idea of doing a follow up MRI after 6 months. I was told, if it's not growing, there's no need to do anything.

Greece Lover

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Re: CONFUSED.....
« Reply #3 on: August 30, 2018, 09:01:35 am »
It sounds to me like you've done the right thing: accumulated as many reliable medical opinions and options as possible.  One of the frustrating things about an AN is that you have choices.  But, you also have time, which can be a blessing. 

the only thing I might suggest is to make sure you get some statistics on hearing preservation with middle fossa.  They're usually much better than with retro-sig.  (but, I'm biased because I had Mid-fossa and am incredibly glad that I did.)

Also, my understanding is that hearing can deteriorate even if the tumor doesn't grow. 

This forum can be helpful, but you'll also find people trying to justify and push for their own choices.  Most of the info you'll get here is anecdotal, which can be helpful, but its good to also think of the statistics.   

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

WhiskyJoe

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Re: CONFUSED.....
« Reply #4 on: August 31, 2018, 07:05:43 am »
I've spoken with several neurosurgeons/neurotologists and radiosurgeons over the past two years, and they've all tended to recommend what they've been trained to do.  My symptoms are getting worse, and my hearing in the AN ear has declined markedly over the past six months.  The radiologist's report from an MRI I had six weeks ago says the scan shows "subtle but definite increased focal protuberant enhancing tissue" and "subtle but definite increased enhancing tissue with complete CSF effacement of the IAC fundus."  The radiologist who reviewed that scan is the same guy who's reviewed all of my other MRI scans.  Since the tumor is growing and my symptoms, particularly the decline in my hearing, are getting worse, I've decided to proceed with surgery.  My surgeons intend to use the middle fossa approach because it has a greater chance of preserving the hearing I have left.  Watching and scanning is a prudent approach, but based on where I am now, I wish I'd pulled the trigger on the surgery a year ago.
- 9 x 5 x 7 mm tumor
- diagnosed 9/16
- tinnitus, severe single-sided hearing loss, equilibrium problems, semi-facial spasms
- translab surgery Friedman & Schwartz UCSD 9/18
- 100% of tumor removed

Greece Lover

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Re: CONFUSED.....
« Reply #5 on: August 31, 2018, 07:30:42 am »
I"m sorry to hear this, Whisky.  Good luck with your surgery and let us know how it goes.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

JD808

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Re: CONFUSED.....
« Reply #6 on: September 03, 2018, 11:36:01 pm »
As noted above, one primary concern with any radiation treatment is your age. There aren’t many long term studies pinpointing radiation treatments into the brain. Radiation for larger tumors is an easier shot and for folks that are older the risk of damaging the surrounding tissue and malignancy ensuing is lower due to life expectancy.

The statistics on hearing preservation after 5 years for most of the surgical approaches that are designed to protect the hearing nerve aren’t exceptional. Before my hearing went completely, I was considering some of these approaches as well. The term “brain retraction” involved in many of them freaked me out quite a bit. Given that my hearing was lost completely by my “small” tumor prior to surgery both of the surgical teams that I consulted recommended translab as the safest option. I was happy to go that route because it didn’t involve any brain retraction.

I gave serious consideration to radiation as I am 47. I ultimately decided not to go that route for a number of reasons. The primary one had to do with the location of my tumor in the IAC and it’s proximity to certain nerves. As a word of caution, radiation is not without risks, side effects, and challenges. Review of the forum here will provide evidence of that easily. Dr Chang is the premier doctor on that technique, so you have the best which is always the best idea whichever path you go.
Diagnosed 1.5cm x .08cm x 1.1cm AN right ear 5/2018
Total hearing loss in right ear at 5/2018 and significant balance issues.
Translab surgery Friedman and Schwartz UCSD 7/18/18
80% tumor removal due to facial nerve adhesion
Balance issues solved, no facial nerve issues.

Cityview

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Re: CONFUSED.....
« Reply #7 on: September 04, 2018, 05:41:50 pm »
I think when considering a treatment at age 28 you have to consider what will control the tumor for upwards to 50-60 years. For radiation, I would ask if the statistics are good and relevant for 50 years or are they based on tumor control for a 10-15 year time period?

Is it 80percent chance of hearing preservation for five years? Ten years? Fifty?

It's a lot to consider and hopefully you'll come to a decision you are comfortable with.

« Last Edit: September 04, 2018, 05:47:03 pm by Cityview »
5 years ww
small AN

marshfield71

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Re: CONFUSED.....
« Reply #8 on: October 05, 2018, 03:29:31 pm »
Went with Gamma Knife in the end! NYU/Kondiolzka.
Just had it done yesterday.
Here's hoping to an easy postie toastie life!
1.3 cm AN right side
mild high frequency hearing loss and tinnitus
diagnosed 8/15/18
treated w/GK by Dr. Konziolka 10/04/18

rupert

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Re: CONFUSED.....
« Reply #9 on: October 05, 2018, 04:08:34 pm »
Good deal.  Nice to get it over with.  Dr Kondziolka did my GK 9 years ago when he was in Pittsburgh. 

kchaffee

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Re: CONFUSED.....
« Reply #10 on: October 08, 2018, 09:05:38 pm »
I am also 28. Diagnosed 9-11-18. Surgery has been the path we are taking. Mine is 33mm. It has caused me to loose my hearing pretty much completely on my right side. I also have partial facial numbness on my right side, Tinnitus, balance issues, headaches. It has been determined, due to the size, that I've most likely been battling with this for close to 10 years. Since my symptoms have gotten increasingly worse, we are wanting to get it out asap. My surgery date is set for November 13th. Radiation was not an option to either of my surgeons. They explained that it is only suggested for people that are a lot older and due to the size, the radiation would just make my tumor swell and it's already pressing on a lot of very important functions and nerves. Being so yokung, the chances of a successful surgery are much higher. I hope you are able to make a decision that is best for you! Good luck!

Cscarter

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Re: CONFUSED.....
« Reply #11 on: October 18, 2018, 09:48:31 am »
I can understand your anguish to a certain degree. My husband was diagnosed with a vestibular schwannoma two weeks ago. His measures in the medium rage: 2.3cm x 2.2cm x 2.0. We have done extensive research and found that due to his age (63) that radiation is probably the best option for him. We are now trying to decide which type of radiation; Gamma Knife or fractionated stereotactic radiosurgery. He has lost all his hearing in the affected ear, so our concern is preservation of the facial nerve. Best of luck to you in your search and your decision for what is best for you!

 


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