Author Topic: Newly diagnosed - CyberKnife or Proton Therapy  (Read 21226 times)

mcrue

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Newly diagnosed - CyberKnife or Proton Therapy
« on: July 20, 2015, 03:48:01 am »
Greetings,

Forgive me for being long-winded, as I have tons of anxiety the last few weeks. I am newly diagnosed in Michigan with a "small" AN (right side) as of June, 2015. I asked my ENT for the exact measurements of the AN several times, but he just keeps saying it's "small" and "fills the inner cavity" and currently "extends 3mm out of the inner cavity."

My ENT placed me on W +W until I get my next 6 month MRI.

I am 40 and I have approx.  85% of good hearing left in the AN ear with 100% word/speech recognition.
 
What alarms me the most is I just completed the 26-question  Tinnitus survey and got a score of 86, which is the highest - "Catastrophic."

The tinnitus is my worst symptom, followed by the small decrease in hearing and anxiety. I had several steroid injections which always reduced my T by 80% but my T always comes back a week later.

According to the test results, my balance nerve is 97% NOT functioning in the AN ear, and I was told this is good news because it will make it faster to adjust after treatment.

I had to use the so-called "open MRI" because I am Big & Tall and claustrophobic. Does radiation treatment off "open MRI" for us Big/Tall guys?

I've spent the last 4 weeks since diagnosis obsessively researching everything!

My choices basically are: Watch & Wait, micro surgery, endoscopic surgery, Gamma Knife, Cyber Knife, or Proton Therapy.

I don't understand how someone with the exact same tumor ,age, size, location, etc. and hearing/facial/balance nerve preservation concerns will opt. for micro surgery over radiation if all things are being equal?

Obviously my main concern is to preserve facial nerve and hearing, and stop the awful Tinnitus. I am concerned about the 1% mortality rate. That is 1 out of every 100 people?

I heard in 10% of cases your Tinnitus will either get better or worse after treatment, and in 80% it will stay the same. My doctor just prescribed me Elavil, but I'm scared of the side effects and read that it doesn't work on daytime Tinnitus, just when you sleep? I have Xanax and Valium for sleeping.

I'm seriously considering spending $6,000 on Neuromonics and their new "Oasis" product, or perhaps even taking Tinnitus Retraining Therapy.  I must do one of these but I don't know how to convince my ENT to prescribe it for me?

To be honest, currently I am debating treatment of either Cyber Knife with Dr. Chang at Stanford or Proton Therapy at Mass. General. Another huge concern is I have an HMO and have no clue if they will cover out of state and out of network procedures for brain tumors. I certainly don't want my HMO telling me I must have my brain worked on by local inexperienced people in the name of saving the insurance company money. It's my brain we're talking about.

As you can tell my anxiety is all over the place. Just 2 months ago I had no Tinnitus and was unaware of my AN. Now I have a loud tea-kettle non-stop high pitch sound in my right ear and have to pray the AN doesn't grow, and if it does grow what is the next step?

I keep hearing about the "new normal" and I don't fully understand what that means. Is it "code" for something bad? Anyways, thank goodness for this website and the valuable info available. I'm going to have to force myself to take a break so I'm not on info overload. I have made copies of my MRI and sending them for free second opinions to: Dr Friedman at USC, Dr Chang, Dr L in Pittsburgh, Proton Therapy at Mass general, and maybe the Skull Base Institute, and also House Clinic and Univ. of Michigan. I really don't want microsurgery, but I'm scared that W+W will make the tumor bigger while I could be treating it now!

My ENT at Michigan Ear says that W+W is best because "treatment" will put me in the "new normal" category which he wants me to avoid ( dizziness, vertigo, headache, balance, etc)

Any thoughts on radiation treatments and Tinnitus are most welcome.

Which radiation treatment has the least "horror" stories, etc. 

Plus, I read a study where people who present to their doctor with initial symptoms of Tinnitus have a TRIPLE chance of their AN growing while on W+W.

I fear my hearing may be declining even more this week,  because my Tinnitus is off the charts "tea kettle" loud the last 3 days.
 
I was even considering Hyperbaric Oxygen Therapy for my Tinnitus, but my ENT dismissed it as non-effective. I also heard on the radio today that the Mayo clinic had promising results on a drug therapy combined with Tinnitus Retraining Therapy. I understand I will have my Tinnitus for LIFE, but I just want it to go down to a manageable level instead of a Catastrophic level.

http://www.ata.org/sites/default/files/Tinnitus_Handicap_Inventory.pdf

Many thanks for letting me vent on my first post!
« Last Edit: July 20, 2015, 09:01:42 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

MG

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #1 on: July 20, 2015, 06:12:08 am »
 Hello mcrue,

We all understand your panic because we have all been through it . Try to be calm if you can as stressing out doesn't help us. I have been on W&W for 3 years now. At first I had all the things that go along with AN's such as balance issues, slight hearing loss, earaches which I still have everyday and tinnitus. My tumor didn't grow the frist year but this last MRI showed 4 mm of growth so now I am on to looking into Gamma Knife or some sort of radiation. My lip has been quivering on my AN side and it shows me that I should decide to do something about it. Also my hearing has deteriorated. If I had it to do over with, I think I would of had it taken care of sooner then later. You are doing the right thing by getting lots of differant opinions from experienced doctors from all over. Best of luck to you and remember ANs usually grow slow so take your time in finding the best possible solution for you.

MG



Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

mcrue

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #2 on: July 20, 2015, 08:57:54 am »
Thanks for the kind words and best wishes with your radiation pursuits. I have high hopes on the Proton Therapy offered in Boston (Mass General).

Member "KeepSmiling" had a positive outcome.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

arizonajack

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #3 on: July 20, 2015, 03:04:22 pm »
I'll make a few comments based on my own research and experience, but you can read my history at the link provided in my signature space below.

I have approx.  85% of good hearing left in the AN ear with 100% word/speech recognition.

Then time is your enemy. ANs are insidious. I went from some hearing to no hearing in a matter of months.

Loss of hearing is the worst consequence of ANs and it doesn't take very long to happen.

I asked my ENT for the exact measurements of the AN several times, but he just keeps saying it's "small" and "fills the inner cavity" and currently "extends 3mm out of the inner cavity."

If you have (or can get) a CD with your MRI images you might see a centimeter scale on two sides of each image. Using a ruler will get you the approximate dimensions.

If that doesn't work go to the following link and look at the MRI images of ANs and compare yours to the images.

https://www.google.com/search?safe=off&site=&tbm=isch&source=hp&biw=1000&bih=586&q=acoustic+neuroma+on+mri&oq=acoustic+neu&gs_l=img.1.6.0l10.1664.3582.0.10082.12.8.0.4.4.0.113.731.7j1.8.0....0...1ac.1.64.img..0.12.774.WrEg2LpNtS0

When you find one that looks comparable, go to the website that has the picture and you should be able to find the dimensions.

My ENT placed me on W +W until I get my next 6 month MRI.

That's OK. The first 6 months after diagnosis is important for monitoring the growth rate and changes in symptoms.

I won't comment on your tinnitus because mine is not severe at all and I had it in my good ear for ten years before the AN in the other ear. I suggest that you check out the American Tinnitus Association, which is probably the one place where you'll get the truth about tinnitus treatments (before you spend thousands on what might turn out to be snake oil).

http://www.ata.org/

According to the test results, my balance nerve is 97% NOT functioning in the AN ear, and I was told this is good news because it will make it faster to adjust after treatment.

That was true in my case. There's various types of balance issues articulated by our members. I was a lurcher, like being on a boat or riding the subway. That cleared up after my GK treatment.

To be honest, currently I am debating treatment of either Cyber Knife with Dr. Chang at Stanford or Proton Therapy at Mass.

I think choice of treatment is partly a matter of instinct. Once you have done all the research and you lean toward a certain choice, it's your instinct that's moving you in that direction. Pay attention to it.

Another huge concern is I have an HMO and have no clue if they will cover out of state and out of network procedures for brain tumors. I certainly don't want my HMO telling me I must have my brain worked on by local inexperienced people in the name of saving the insurance company money. It's my brain we're talking about.

Then I'm going to give you some advice that people hate to follow. It comes from a guy who spent 35 years working in the insurance industry. Ready? Here it is: READ THE DAMNED HMO CONTRACT. Read it more than once. Read it until you can recite it from memory. Well, maybe not that far, but the contract has what you need to know about your choices of treatment and you don't want any unpleasant surprises the week before your treatment or (god forbid) the week after.

I keep hearing about the "new normal" and I don't fully understand what that means. Is it "code" for something bad?

Sometimes yes, sometimes no. It's different for everybody. My "new normal" is a dead ear (single sided deafness), the wearing of hearing aids, using eye drops every night for dry eyes, and very faint tinnitus. Has my life changed any because of all that? No. But that's not the case with others that continue to have problems after treatment. There's just no way to predict.

My ENT at Michigan Ear says that W+W is best because "treatment" will put me in the "new normal" category which he wants me to avoid ( dizziness, vertigo, headache, balance, etc).

There's no guarantee that you'll have any of that after treatment nor is there any guarantee that you won't. You have to choose what you think is best for you at the time you make the choice.

Plus, I read a study where people who present to their doctor with initial symptoms of Tinnitus have a TRIPLE chance of their AN growing while on W+W.

Do us all a favor. Any time you refer to a "study" please post a link to it so we can all read it. It's a little courtesy that we all try to do for each other whenever we come across something.

Anyway, welcome to the club that nobody wants to be a member of. Wish you the best in your search for answers.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

mcrue

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #4 on: July 20, 2015, 05:55:56 pm »
Wow! Thank you ArizonaJack so very much for your kind gesture and taking the time to respond to my concerns. I really REALLY appreciate everything. I've also read your story prior to posting and found it fascinating and inspiring. I also read the interesting story of the lawyer who had cyber knife. Very encouraging.

I just returned from my local ENT for my 4th steroid injection through the eardrum in as many weeks. For some reason these injections bring down my Tinnitus to almost zero...but the effects only last about one week before my T starts to roar its ugly head again. I have a meeting with the local Tinnitus Audiologist next month to fit me with a hearing aid which is supposed to somehow help my T.

And you're correct that waiting can have its downside, as my hearing went down again this visit from 55 all the way down to 70 in the high tones. This is very bad. But my AN is relatively small confined to the boney intracanalicular canal and only protruding 3mm out and far from the brain. My neuro ENT said it has plenty of space to grow.

I have the MRI cd and will take a look Tuesday. My ENT said it's about 1cm inside the boney canal, and 3mm extended out. It's perfectly shaped like a little egg.

Proton therapy is rarely if ever covered by HMO insurance, but I did find a center in Michigan called McLaren proton beam therapy center in Flint. That's only 45-minutes away from me, but pointless if I can't go there because of insurance. I will call up Blue Care network HMO of Michigan and see what they say, and read the handbook.

I would take your "new normal" any day of the week to be done with this AN and move-on with my life. I'm scared of facial nerve issues and permanent dizzyness, etc. But losing my hearing scares me as well.

I use Visine LR Long Lasting Redness Relief eye drops with Oxymetazoline, as well as prescription  Prednisolone 1% acetate (steroid), and Bausch and Lamb Maximum Redness Relief eye drops which has excellent lubrication. All 3 are excellent eye drops, but the Visine was discontinued.

I will try and find the link to the study, but I know for certain I accurately quoted it. I think it was a 2010 study from Europe. I'm searching for it...

My main concern is my Tinnitus, followed by my AN, and then my insurance.  I'd rather go to Dr. Chang at Stanford then some local guy in the Detroit area with limited experience treating AN.

Anyways, thanks again for the very detailed information and to everyone who contributes to this treasure of a website.
« Last Edit: July 20, 2015, 05:59:03 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

PaulW

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #5 on: July 21, 2015, 07:32:41 am »
Proton therapy has relatively poor results for trigeminal,facial and hearing nerve preservation
http://www.ncbi.nlm.nih.gov/pubmed/19054586

Gamma knife and Cyberknife have almost 100% facial nerve preservation and around 70% hearing preservation at 5 years

Accuracy of Proton therapy is +/- 3mm.  Versus +/- 0.5mm for gamma knife and Cyberknife.

Proton therapy has a place, but it is not really suited to small targets like your AN
Cost of the treatment is another consideration.

10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

arizonajack

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #6 on: July 21, 2015, 07:14:15 pm »

And you're correct that waiting can have its downside, as my hearing went down again this visit from 55 all the way down to 70 in the high tones.

Here's a very interesting website about understanding audiograms and hearing loss:

http://www.hdhearing.com/learning/part2.htm

Before I found the article I had no idea what the hearing issues were all about in my good ear.

If you're up for it you might also want to check out our ongoing discussion about the Phonak CROS II system that was introduced on the market a few months ago.

http://www.anausa.org/smf/index.php?topic=21818.0


But my AN is relatively small confined to the boney intracanalicular canal and only protruding 3mm out and far from the brain. My neuro ENT said it has plenty of space to grow.

I have the MRI cd and will take a look Tuesday. My ENT said it's about 1cm inside the boney canal, and 3mm extended out. It's perfectly shaped like a little egg.


Mine was small, too. 3mm x 4mm x 9mm at my first MRI, also in the intracanalicular canal. I always thought of mine as being shaped like a little Good-And-Plenty candy.

https://upload.wikimedia.org/wikipedia/commons/8/82/Good_%26_Plenty_licorice_candy.JPG

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Echo

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #7 on: July 22, 2015, 07:40:42 pm »
I just want to add something here regarding the position of where these AN's grow.  When they are contained within the IAC (inner auditory canal), there just isn't a ton of room for them to spread out. This compressed area seems to make it tougher for them to grow and spread.  I'm just guessing here, but I bet the majority of folks who have been on W&W for any extended period of time, have AN's contained within the IAC.  Where things can change is when they grow out of the IAC into the CPA (cerebellopontine angle region) and they now have lots of room to grow and spread.  While AN's are typically very slow growing, they can take on spurts.  In my case, my AN started growing near the end of the IAC and headed out into the CPA.  Basically the tail of my AN is within the IAC and the mushroom part is within the CPA.  When diagnosed it was 1.8 cm and due to the way it was growing it took on a spurt and grew to 2.4 cm in less than 1 year.   So they don't always grow really slow and given room to spread the darn things will do just that!  I think this also shows why that second MRI after initial diagnosis is so important when tracking growth.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

mcrue

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #8 on: July 23, 2015, 02:12:35 am »
PaulW, ArizonaJack, and ECHO....thank you so much for your responses.

It still begs the question that if Gamma Knife or CK is so "easy" than why do some people with the exact same AN size, location, age, symptoms, etc. still chose to have their skull cracked open and have traditional microsurgery with Dr. Friedman or anyone for that matter?

I feel like there's a "big elephant" in the room regarding Radiation that I'm not hearing about, or else doctors would just say "hey you' got a brain tumor.... but good news.... we can easily just send you to gamma knife or CK."
 

PaulW...if those stats are correct from 6 years ago, then why would anybody with an AN ever chose Proton Beam therapy over CK or Gamma?

If those stats are correct, then Proton Beam therapy shouldn't even be offered for AN's.

It leads me to believe that for every study, there may be an equal and opposite study...but I could be wrong. Your stats just made me cross off Proton Therapy from my list.

ArizonaJack..yes, my AN looks like a Tic Tak  breath mint with a 3mm extension reaching outside the boney canal.

I still have hearing in my AN ear, it's just the high pitch tones are down to 70. I think the Phonak Cros II is for people who are totally deaf in one ear.

Phonak does have a couple hearing aids for my Tinnitus. I think it may be called the "Balance" hearing aid and the "Audeo Q" hearing aid.  I know nothing about hearing aids, but have an appointment with a Audiologist who specializes in tinnitus the first week of August.


http://www.phonak.com/com/b2c/en/hearing/tinnitus.html

http://www.phonakpro.com/com/b2b/en/products/tinnitus/tinnitus.html


I'm scared of radiation and BRAIN surgery because of the very real possibility of permanent nerve damage, permanent dizzyness, or permanent vertigo or permanent headache, etc.

Once it's done.... it's done..... and there's no going back.

ECHO....yes i agree, that's is also why i'm on "watch and wait"; however, i am concerned that my next MRI might look like a "tad pole" and show the AN spreading more than 3mm outside the boney canal. But according to my ENT, even if the AN is confined to the tiny boney canal there is about a 50/50 chance that it will stop growing and nothing will ever need to be done besides annual MRI's for life.

At this point, i don't think i have any thing to lose by waiting for my first 6 month "post-diagnostic" MRI in January of 2016. Then I may have to make the tough decision.

Right now, i just wish my Tinnitus would subside. I'm only 40 and I have never worn a hearing aid in my life. I don't even know if it will help with my Tinnitus.

My only 2 choices are a hearing aid, or Neuromonics sound therapy, for my "catastrophic" tinnitus.

My ENT said all the "Tinnitus specialty centers" are just marketing ploys, as every ENT is trained in Otolaryngology or whatever it's called, and they all have access to the same exact info.

Plus, did anyone  read that NY Times story a few years ago how a few people who had radiation became comatose because of some stray radiation beams during their treatment?

Scary stuff.

Anyways, I sent my MRI to 7 "best-of-the-best" people today and hopefully i will get some good "second opinions" in a few weeks.

Obviously everyone who has had a positive out come with their choice of radiation or surgery is going to be extremely biased to that specific treatment in a positive way (even though not all cases are positive), and obviously every doctor who performs his specific specialty of radiation or surgery is going to be biased towards his specialty... thinking it''s the best.

This also applies to people on Watch & Wait where their AN has stopped growing (for THEM).
So i have to keep an open mind.

Thanks again for everyone's time and advice. It's much appreciated. This website is fantastic for newly diagnosed people with AN's.


p.s .- what about the Skull Base Institute and their Endoscopic procedure?

http://www.skullbaseinstitute.com/acoustic-neuroma

Here is the list of Doctors I sent my MRI for free second opinions (in addition to Michigan Ear):

Dr. Telian - Ann Arbor, MI - Univ. Mich
Dr. Arts - Ann Arbor, MI - Univ. Mich

Dr. Chang - Stanford, CA

Dr. Lundsford - Pittsburgh, PA

Dr. Friedman - USC - Los Angeles

Dr Schwartz - House Clinic - Los Angeles

Dr. Jay Loeffler - Massachusetts General Hospital - Boston - Proton Beam Therapy

HUPTI Proton Beam Therapy - Hampton, VA

Skull Base Institute - Los Angeles

For about $100 (the costs for photo copies, MRI cd's, and postage) I will have the opinions of 10 highly experienced AN treatment doctors with world wide recognition. A wise investment indeed.

Isn't that the motto of this website...to find the most experienced doctor for your specific case :)

I just hope my AN doesn't grow and my Tinnitus gets under control.

Thanks again to everyone for sharing their unique experience.
« Last Edit: July 23, 2015, 09:34:07 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Echo

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #9 on: July 23, 2015, 06:23:35 pm »
GK is not "easy".  The Team that planned my treatment consisted of a radiologist, oncologist, physicist and two neurosurgeons.  Once the treatment is done, many people have no side effects or complications, similar to those who have successful microsurgery.  For others, post treatment, there can be up to a 3 to 5 year period where complications come and go while the radiation attacks the AN.  GK and CK are certainly less invasive than microsurgery, but they are NOT a quick fix. 

Depending on the size of your AN and your age, you may not have the choice of radiation, surgery will be your only option.  For those who have the choice, many things come into play in making that choice.  Some just want the darn thing removed from their head, or simply are not comfortable with the idea of radiation. Others don't want their "skull cracked open", so radiation is their choice.  You have to look at the big picture and consider how treating this alien will impact your life.  In my case, I have had 2 previous surgeries with terrible reactions to anesthetic.  I feared an 8+ hour surgery.  At the time I decided to have GK, I was 58, single, still working full time, and the primary caregiver to my 88 year old mother.  Looking at the possible complications and recovery timelines for both GK or microsurgery, GK soon became the better choice for me personally.  GK has a 30+ year history with excellent medical documented results.  In my opinion there is no "big elephant" regarding radiation unless you are concerned about the extremely minimal risk of a malignant growth many years down the road.  At 58 that risk did not even concern me.  Deciding on treatment is a matter of doing your research and determining what option suits you best.

As for hearing aids, the Phonak Bi Cros is an excellent hearing aid for people who have lost some or all of their hearing in the AN ear.  My word recognition in my AN ear drifts back and forth from 20% to 40% and without wearing the Bi Cros I struggle to hear people. The Bi Cros picks up the sound from my AN ear and transmits it over to my better ear so I can now hear people much more clearly and have less stress in my life.  Tinnitus is not an issue for me, but please do not think you have to be completely deaf in one ear before you will benefit from wearing a Bi Cros hearing aid.

Cathie
« Last Edit: July 23, 2015, 06:29:47 pm by Echo »
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

PaulW

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #10 on: July 23, 2015, 09:01:50 pm »
Skull Base Institute...
Many Doctors use Endoscopic Tools where appropriate.
Google Dr Shahinian and make your own decision.
Skull Base Institute is very expensive.
Thoroughly question whether this is good marketing or if there are real benefits.

Proton Therapy.
Have a read of this article...
http://medicalphysicsweb.org/cws/article/research/50584

Proton Therapies strengths are young patients, larger tumours, that are close to important stuff but not too close..
Your AN is small, you are older, and important stuff like Trigeminal, Facial nerve, brain stem are all right next to the tumour or touching it!
So it is not ideal.

Proton Therapy due to the Bragg Peak provides the most radiation at the edge of the tumour, and less in the middle!
The edge of the tumor is also where the brainstem often is as well as the nerves..
This is why there the stats on the Trigeminal, facial nerve and hearing preservation are not as good as Gammaknife or Cyberknife.

That does not mean you cannot have good results from Proton Therapy..
It is luck of the draw.... but from the studies you will have better luck with GK or CK.

As for the side effects of GK and CK, in theory in a small tumour there should be no direct affect on the brain itself...
But, and its a pretty big but.. your facial, balance, and hearing nerves do cop the full dose of radiation, and the side effects of the radiation appear to be related directly to the nerves, the nearby cochlear, and the blood vessels in the IAC.

Many of the symptoms post radiation are related to a damaged vestibular and hearing system
http://vestibular.org/understanding-vestibular-disorder/symptoms

My personal experience has been that most problems reduced within two years..





 
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

KeepSmiling

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #11 on: July 24, 2015, 03:57:40 pm »
Sorry you have to deal with an acoustic neuroma. Hope you handle your catastrophic tinnitus somehow. We feel for you!  Whatever you decide for your treatment- please know that we wish you the very best!

Just as an FYI- The Fractionated Proton Beam Therapy seems to have been a good choice for my husband. He finished treatment in Aug 2013 and it is now July 2015 and he's doing fine. I believe he said his tinnitus has been reduced since his Proton Therapy Treatment, but if you'd like to talk to him directly to verify this, please just send me a personal message and we could arrange for a telephone call one evening after he returns from work. He could also communicate via e-mail if this would be better for you,. We would be happy to help you in whatever way is best for you. For anecdotal information, please feel free to read any of the posts from me, under the alias "Keep Smiling".

For your reading pleasure, here are some studies on Proton Therapy for vestibular schwannomas:

1.Proton Beam Radiosurgery for Vestibular Schwannoma: Tumor Control and Cranial Nerve Toxicity http://journals.lww.com/neurosurgery/Abstract/2003/09000/Proton_Beam_Radiosurgery_for_Vestibular.6.aspx

Abstract

OBJECTIVE: We sought to determine the tumor control rate and cranial nerve function outcomes in patients with vestibular schwannomas who were treated with proton beam stereotactic radiosurgery.

METHODS: Between November 1992 and August 2000, 88 patients with vestibular schwannomas were treated at the Harvard Cyclotron Laboratory with proton beam stereotactic radiosurgery in which two to four convergent fixed beams of 160-MeV protons were applied. The median transverse diameter was 16 mm (range, 2.5–35 mm), and the median tumor volume was 1.4 cm3 (range, 0.1–15.9 cm3). Surgical resection had been performed previously in 15 patients (17%). Facial nerve function (House-Brackmann Grade 1) and trigeminal nerve function were normal in 79 patients (89.8%). Eight patients (9%) had good or excellent hearing (Gardner-Robertson [GR] Grade 1), and 13 patients (15%) had serviceable hearing (GR Grade 2). A median dose of 12 cobalt Gray equivalents (range, 10–18 cobalt Gray equivalents) was prescribed to the 70 to 108% isodose lines (median, 70%). The median follow-up period was 38.7 months (range, 12–102.6 mo).

RESULTS: The actuarial 2- and 5-year tumor control rates were 95.3% (95% confidence interval [CI], 90.9–99.9%) and 93.6% (95% CI, 88.3–99.3%). Salvage radiosurgery was performed in one patient 32.5 months after treatment, and a craniotomy was required 19.1 months after treatment in another patient with hemorrhage in the vicinity of a stable tumor. Three patients (3.4%) underwent shunting for hydrocephalus, and a subsequent partial resection was performed in one of these patients. The actuarial 5-year cumulative radiological reduction rate was 94.7% (95% CI, 81.2–98.3%). Of the 21 patients (24%) with functional hearing (GR Grade 1 or 2), 7 (33.3%) retained serviceable hearing ability (GR Grade 2). Actuarial 5-year normal facial and trigeminal nerve function preservation rates were 91.1% (95% CI, 85–97.6%) and 89.4% (95% CI, 82–96.7%). Univariate analysis revealed that prescribed dose (P = 0.005), maximum dose (P = 0.006), and the inhomogeneity coefficient (P = 0.03) were associated with a significant risk of long-term facial neuropathy. No other cranial nerve deficits or cancer relapses were observed.

CONCLUSION: Proton beam stereotactic radiosurgery has been shown to be an effective means of tumor control. A high radiological response rate was observed. Excellent facial and trigeminal nerve function preservation rates were achieved. A reduced prescribed dose is associated with a significant decrease in facial neuropathy.

2.Fractionated Proton Beam Radiotherapy for Acoustic Neuroma http://journals.lww.com/neurosurgery/Abstract/2002/02000/Fractionated_Proton_Beam_Radiotherapy_for_Acoustic.7.aspx

OBJECTIVE : This study evaluated proton beam irradiation in patients with acoustic neuroma. The aim was to provide maximal local tumor control while minimizing complications such as cranial nerve injuries.

METHODS : Thirty-one acoustic neuromas in 30 patients were treated with proton beam therapy from March 1991 to June 1999. The mean tumor volume was 4.3 cm3. All patients underwent pretreatment neurological evaluation, contrast enhanced magnetic resonance imaging, and audiometric evaluation. Standard fractionated proton radiotherapy was used at daily doses of 1.8 to 2.0 cobalt Gray equivalent: patients with useful hearing before treatment (Gardner-Robertson Grade I or II) received 54.0 cobalt Gray equivalent in 30 fractions; patients without useful hearing received 60.0 cobalt Gray equivalent in 30 to 33 fractions.

RESULTS : Twenty-nine of 30 patients were assessable for tumor control and cranial nerve injury. Follow-up ranged from 7 to 98 months (mean, 34 mo), during which no patients demonstrated disease progression on magnetic resonance imaging scans. Eleven patients demonstrated radiographic regression. Of the 13 patients with pretreatment Gardner-Robertson Grade I or II hearing, 4 (31%) maintained useful hearing. No transient or permanent treatment-related trigeminal or facial nerve dysfunction was observed.

CONCLUSION : Fractionated proton beam therapy provided excellent local control of acoustic neuromas when treatment was administered in moderate doses. No injuries to the Vth or VIIth cranial nerves were observed. A reduction in the tumor dose is being evaluated to increase the hearing preservation rate.

3. Long-term results of stereotactic proton beam radiotherapy for acoustic neuromas http://www.sciencedirect.com/science
Abstract
Background and purpose

A retrospective study evaluating the role of hypofractionated stereotactic proton beam therapy for acoustic neuromas.
Materials and methods

The data of 51 patients treated with hypofractionation (3 fractions) and followed up for a minimum of 2 years, were analyzed. Mean dose prescribed to ICRU reference point (isocenter) was 26 cobalt gray equivalent (CGyE) in 3 fractions. Mean minimum tumor dose was 21.4 CGyE/3. Cranial nerve functions were evaluated clinically. Serial MR Scans were used to evaluate local control.
Results

With a mean clinical and radiological follow-up of 72 and 60 months respectively, the 5-year results showed a 98% local control, with a hearing preservation of 42%, a facial nerve preservation of 90.5% and a trigeminal nerve preservation of 93%.
Conclusion

For those patients harboring large acoustic neuromas that are inoperable, hypofractionated stereotactic proton beam offers long-term control with minimal side-effects./article/pii/S0167814008006166

4. Proton beam stereotactic radiosurgery of vestibular schwannomas http://www.sciencedirect.com/science/article/pii/S0360301602029103
Abstract

The proton beam’s Bragg peak permits highly conformal radiation of skull base tumors. This study, prompted by reports of transient (30% each) and permanent (10% each) facial and trigeminal neuropathy after stereotactic radiosurgery of vestibular schwannomas with marginal doses of 16–20 Gy, assessed whether proton beam radiosurgery using a marginal dose of only 12 Gy could control vestibular schwannomas while causing less neuropathy.

Sixty-eight patients (mean age 67 years) were treated between 1992 and 1998. The mean tumor volume was 2.49 cm3. The dose to the tumor margin (70% isodose line) was 12 Gy. The prospectively specified follow-up consisted of neurologic evaluation and MRI at 6, 12, 24, and 36 months.

After a mean clinical follow-up of 44 months and imaging follow-up of 34 months in 64 patients, 35 tumors (54.7%) were smaller and 25 (39.1%) were unchanged (tumor control rate 94%; actuarial control rate 94% at 2 years and 84% at 5 years). Three tumors enlarged: one shrank after repeated radiosurgery, one remained enlarged at the time of unrelated death, and one had not been imaged for 4 years in a patient who remained asymptomatic at last follow-up. Intratumoral hemorrhage into one stable tumor required craniotomy that proved successful. Thus, 97% of tumors required no additional treatment. Three patients (4.7%) underwent shunting for hydrocephalus evident as increased ataxia. Of 6 patients with functional hearing ipsilaterally, 1 improved, 1 was unchanged, and 4 progressively lost hearing. Cranial neuropathies were infrequent: persistent facial hypesthesia (2 new, 1 exacerbated; 4.7%); intermittent facial paresthesias (5 new, 1 exacerbated; 9.4%); persistent facial weakness (2 new, 1 exacerbated; 4.7%) requiring oculoplasty; transient partial facial weakness (5 new, 1 exacerbated; 9.4%), and synkinesis (5 new, 1 exacerbated; 9.4%).

Proton beam stereotactic radiosurgery of vestibular schwannomas at the doses used in this study controls tumor growth with relatively few complications.

Also, please keep in mind that there are about 5 known individuals at this Acoustic Neuroma  Forum who could speak of their positive experiences with Proton Therapy. I believe we also have one individual here who may not have been pleased with the outcome.

There are so many individuals at this forum who have had various treatments and have endured many struggles with amazing grace. Our hearts go out to all of 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.

mcrue

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #12 on: July 24, 2015, 05:08:37 pm »
Thank you so very much ECHO, PaulW, and Keep Smiling!!

I really appreciate the wealth of information that is available courtesy of this beautiful forum.

I know my thoughts may sometimes come across as "strongly-worded" (for lack of a better adjective) but it's because I have a lot of anxiety and even more questions. So please take my words lightly, as I mean no harm.

So much info to digest for such life-changing treatment options.

KeepSmiling...I have had your posts saved as of last week, and I have been reading through them daily. It's a wealth of knowledge.
Thank you for pointing me in your direction.

The more my hearing in the high-tones declines, the more my Tinnitus increases. The only reason my ENT recommends a hearing aid is so that my Tinnitus might improve.  We will be discussing Tinnitus "maskers" as well as Tinnitus Retraining Therapy TRT,  and also Sound Therapy with Neuromonics.

If those treatments don't help my Tinnitus then I don't know what other options I have??

Today I spoke on the phone with a "world famous" radiation oncologist for Proton Beam Therapy, and to make a long story short he claimed that Proton Beam Therapy over several weeks (6 - 8 weeks) provided the best option for saving my 100% speech recognition in my AN ear. If I recall correctly, he claims that since treatment is done over a 6-8 week time-frame that I have 85% chance that my facial nerve will be unaffected and 95% chance that my hearing nerve will be unaffected. He also indicated that Cyber Knife can be done over an extended period of time but Proton Beam Therapy directly targets the tumor.

The thing is, if PaulW is correct that CK offers nearly 100% facial nerve preservation and a better chance for hearing preservation compared to Proton Beam Therapy, ..then I don't know what to believe. It's maddening.

Obviously, scientist, doctors ,and patients believe the stats. In the end I will go with the stats.

My biggest concerns are preserving my  facial and hearing nerves (since balance is already gone by 97% in AN ear), and also AVOID horror stories like permanent headaches and dizziness/vertigo.

Plus, I am wondering if some of the people who chose radiation have pre-existing facial nerve problems that existed BEFORE they even had radiation treatment? And perhaps they're wrongly attributing their facial nerve issues to their radiation treatment?

Thanks again to everyone who has contributed to my thread and to this forum. I will let you know what the other doctors have said after they call me. I have until January to make up my decision. At that point I will know if my AN is growing and by how much, if at all.

Of course I could still act today if i wanted, but I think I owe it to wait until January.

Best wishes!
« Last Edit: July 24, 2015, 05:21:52 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Echo

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #13 on: July 24, 2015, 05:25:39 pm »
Waiting till January is an excellent choice.  It will give you time to do your research, meet with several Dr.s, and let the knowledge you learn sink in.  When you finally do make your decisions, I'm quite sure you will be at peace within yourself.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

MG

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Re: Newly diagnosed - CyberKnife or Proton Therapy
« Reply #14 on: July 25, 2015, 06:21:20 am »
Hello again,
I too am on the same journey as mcrue. Thank you all for the info. I am at wits end myself to decide which is best. It is mind boggling to say the least. I am going to my first appt. with a radiation specialist next week. He offers something in the line of GK. After that I am going to one who offers CK.

Thanks everyone!
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016