Author Topic: New guy  (Read 14004 times)

golfguy49

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New guy
« on: April 03, 2018, 07:04:02 am »
Hello everyone,

I am a new guy here.  I was told 10 days ago that my MRI showed AN, so I had another MRI focused on the ears and there it was, a 1cm left-side AN that is a bit elongated like a kidney bean.  I have so far consulted with Dr. Fishman at Northwestern Medicine in Chicago.  I have had constant tinnitus since August 2017 and my balance is little off.  He said at some point in my life this will need to come out.  Middle fossa is likely the best option, as I still have about 80-90% hearing in that left ear, and I am 46.  Has anyone been treated by Dr. Fishman and his team?  While I don't need to make an immediate decision,  taking it out at this size seems to be the safest choice before it gets bigger because recovery only gets more difficult and risks go up.  Gamma Knife doesn't sound like a great option for someone my age.  Clearly, the facial nerve is most concerning and it seems I would have a 90%+ chance of preserving that if we do this soon.

I look forward to any thoughts out there.  Thanks.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

KeepSmiling

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Re: New guy
« Reply #1 on: April 03, 2018, 11:44:29 am »
Welcome to the discussions about this unfortunate affliction. Having a Vestibular Schwannoma (VS), which is also called an Acoustic Neuroma (AN), is not an easy situation and we feel for you.  After you read about this, you may realize there is a lack of consensus about optimum treatment. It also appears that there is often a lack of truly informed consent. Doctors often inform the Acoustic Neuroma (AN) patients of only that which is their own specialty in medicine -and it seems that perhaps the risks are often underplayed.  The end result is that true informed consent isn't alway available to the patient, unless the patient researches this independently.

MySuggestions:

Definitely get more opinions. Send your MRI of the Brain to specialty doctors and respectfully request their review.

Maybe you could watch and wait, while staying hyper-vigilant- by scheduling frequent MRI's of the brain?   One incentive to watch and wait is that  new developments could be underway. For example: https://stankovic.hms.harvard.edu/files/konstantina-stankovic-md-phd/files/ren2017.pdf

 A reason to take action now and not to watch and wait is that the Acoustic Neuroma doesn't always have slow growth. (Do a search about "rapid growth" at any relevant discussion forums you find)

Rarely is Proton Therapy ever mentioned as an option by mostly all doctors who see patients about Acoustic Neuromas. Suggestion: Research about Proton PENCIL BEAM Radiation. It is the newest innovation with Proton Therapy.  Here is one of the best videos I've seen on the basics of proton beam therapy; prepared by a medical physicist:  https://www.youtube.com/watch?v=DFKAFXDguFo. Please watch it until the end. It gets detailed but it is worthwhile. (By the way, my husband had a very good outcome with Proton Beam Radiation in 2013, which is not the same as the newest Pencil Beam Radiation. We were very impressed with Massachusetts General Hospital Francis H. Burr Proton Therapy Center http://www.massgeneral.org/radiationoncology/Proton_FAQs.aspx. Do a search under my alias "Keep Smiling" or look at the profile description, to understand my husband's good outcome.  )

Good luck-Sending you best wishes!


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.

ANSydney

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Re: New guy
« Reply #2 on: April 03, 2018, 04:46:38 pm »
Why not do a repeat MRI 6 months after the diagnostic MRI to see it is still growing? Mine has been a stable size since it was diagnosed in August 2016. I've had four MRIs so far spaced 6 months apart and will keep having them every 6 months for the foresable future. The neurosurgeon that I consulted with said that if it doesn't grow, there is no need to do anything.

You can see my story at https://www.anausa.org/smf/index.php?topic=23197.msg979772502#msg979772502

golfguy49

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Re: New guy
« Reply #3 on: April 03, 2018, 05:41:59 pm »
Thanks for the replies.  I guess there are 2 main reasons I am considering surgery soon:  (1) with a middle fossa procedure it seems I have a chance of retaining some hearing in the left ear, so I don't know that I want to wait until the hearing is one day all of a sudden gone, and (2)  I have some mild balance issues that seem to really sap me of energy.  It seems my eyes work extra hard to navigate the world around me and keep me upright (no falls yet), and I thus get tired very easily and quality of life has declined in the last 4-6 months.  It is also nearly impossible to work out without quickly finding the room spinning a bit, so concerns for my overall health in other ways creeps in - I don't want to be a couch potato for the next XX years because I am so wiped all the time.

I realize recovery could be just as difficult, if not more difficult, than what I am experiencing now, but I am hoping that if I did this at 1cm the recovery might be more manageable with less risk to the facial nerve.  If I wait until the tumor is 2cm, the facial nerve risk goes up by 20-30%.  With 15-18 years of career work left in me, that's not something I want to really risk.  I'm not an actor or anything, but symmetry matters in many types of careers, I am very honest about that.

So I am considering being proactive.  If I was 60, I would absolute wait, but being 46 leaves me a lot of time to deal with issues such as tumor growth, my career (sole family breadwinner), private health insurance issues, etc.  I also understand that new treatments could save the day for us all in 5 or 10 years, so that carries a heavy weight in the decision as well.  I am going to consult with at least one other Dr. (sent MRI disc today) and listen to what they have to say as well, but I appreciate the thoughts of everyone on the forum as well.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

rupert

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Re: New guy
« Reply #4 on: April 04, 2018, 06:20:48 am »
In looking at your user name I take it that you might golf a bit.  Having a brain tumor is a great excuse to your buddy's after a somewhat off round. ;D   I like the way you're thinking about this. I consider the watch and wait group very courageous but,  I myself cannot understand why you would want to wait until it grows and possibly  cause more damage before getting it treated. Other than the proton treatment KeepSmilling mentioned I haven't seen evidence of any new or remarkable treatment advances in the last ten years but yeah, who knows what the future holds. Keep doing your research, get some other opinions and go with your gut feeling.  What ever treatment you decide, the outcomes are usually excellent.  Good luck to you.

Director

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Re: New guy
« Reply #5 on: April 04, 2018, 06:46:30 am »
Golf Guy- I have a great article on Middle Fossa for our June newsletter. Let me know if you are not an ANA member and I can arrange to get you a copy. We will also have an article on observation (ANSydney!) in the September issue.
Allison
director@anausa.org

golfguy49

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Re: New guy
« Reply #6 on: April 04, 2018, 07:50:27 am »
rupert - yes, I play some golf but not as much as I used to.  I played 5 rounds in Phoenix last week on a buddies trip, and this balance issue definitely affects me.  I have not played since last fall when the symptoms were first coming on and were more guesswork, but I sure do notice it now.  Most people take for granted that they can stand perfectly still and the world remains steady as well.  It is a bit saddening to think things may never be the same again, but I also understand this is not the worst thing that could have happened.  After all, this could have happened to one my kids instead of me, and that would be far worse.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Greece Lover

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Re: New guy
« Reply #7 on: April 04, 2018, 07:53:04 am »
Welcome to the club.  One of the things you find on this site is people who tend to recommend the treatment option they've chosen, which makes sense.  Anecdotal stories are helpful, but are no substitute for your own discernment with your doctor.

That being said, I"ll offer my own anecdote.  I was quite similar in size and age to you and had middle fossa and I"m glad I did.  Saved hearing.  Recovery is not easy, but there's nothing I can't do today that I did two years ago.  And, I don't golf much, but I think it actually made me golf a little better!

Again, I'm biased, but if you're in Chicago, you might check out the University of Iowa.  Would only be about 4 hours from you and they are a high volume center with some of the best rates of hearing prevention in the world.  Worked for me!  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!

mac84

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Re: New guy
« Reply #8 on: April 04, 2018, 11:23:25 am »
Golfguy, I'll go the other direction: Mine is 1.4CM and I still run 4 times a week and mountain bike. I have lost 50% of the hearing in that ear and have very loud tinnitus but have read to many bad stories on having the head cut open so will stay on the W/W as long as I can....getting MRI's each year. If I have to do something I'll opt for Gamma Knife.

But all this just underscores that everyone is different....affected differently and also affected by what they read. Some want it out right away, some are scared off from that.

You'll know what the right thing is for you once you read and study. Good luck sir!

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANSydney

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Re: New guy
« Reply #9 on: April 04, 2018, 05:09:33 pm »
Golf Guy- I have a great article on Middle Fossa for our June newsletter. Let me know if you are not an ANA member and I can arrange to get you a copy. We will also have an article on observation (ANSydney!) in the September issue.
Allison
director@anausa.org
I look forward to the September newsletter. Observation is one area that I'd like to see more information on.

ANSydney

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Re: New guy
« Reply #10 on: April 04, 2018, 05:14:29 pm »
Golfguy, I'll go the other direction: Mine is 1.4CM and I still run 4 times a week and mountain bike. I have lost 50% of the hearing in that ear and have very loud tinnitus but have read to many bad stories on having the head cut open so will stay on the W/W as long as I can....getting MRI's each year. If I have to do something I'll opt for Gamma Knife.

But all this just underscores that everyone is different....affected differently and also affected by what they read. Some want it out right away, some are scared off from that.

You'll know what the right thing is for you once you read and study. Good luck sir!

Cary
Hi Cary,

I look forward to hearing the results of your 4 years follow up MRI sometime this month. Great to see that after 3 years of observation, there has been no growth.

I'm up to the 1.7 year mark and after 4 MRIs (every 6 month) there has been no growth as well. My next MRI is in August 2018.

golfguy49

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Re: New guy
« Reply #11 on: April 05, 2018, 06:51:08 am »
Golfguy, I'll go the other direction: Mine is 1.4CM and I still run 4 times a week and mountain bike. I have lost 50% of the hearing in that ear and have very loud tinnitus but have read to many bad stories on having the head cut open so will stay on the W/W as long as I can....getting MRI's each year. If I have to do something I'll opt for Gamma Knife.

But all this just underscores that everyone is different....affected differently and also affected by what they read. Some want it out right away, some are scared off from that.

You'll know what the right thing is for you once you read and study. Good luck sir!

Cary

I am quite scared of the surgery as well.  I am not generally afraid of surgery in concept, but in these AN situations, picking the right type of surgery/treatment (or W/W) and the right surgeon leaves a lot of choice on the plate of the patient, and I suppose most people would just rather there being one answer and one clear solution so "choice" would not not really part of the equation.   It's so ironic that we spend so much time and energy focusing on our diets and keeping our bodies healthy, and then something like this comes along.  We are indeed all different and I hope that I can settle in on the best decision possible after taking in all of the information available.  Thanks for all the comments from everyone.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

WhiskyJoe

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Re: New guy
« Reply #12 on: April 06, 2018, 06:46:41 am »
Golfguy49, I was diagnosed with a 8 x 4 x 5 mm AN in September 2016 at age 55.  My initial reaction was to have it excised through microsurgery ASAP and move on.  Both of the surgeons I consulted recommended the middle fossa approach and said that undergoing surgery sooner rather than later gave me the best chance of preserving hearing in that ear.  I scheduled the surgery for late January 2017 and was all set to go until an MRI I had just before the surgery showed no growth in the tumor.  I cancelled the surgery as a result of that.  I've had three MRI's since then, the most recent of which was in March 2018, and none of them has shown any growth in the tumor.  The three audiograms I've had in the last 18 months do not show any further decline in the hearing loss revealed by the first audiogram.  My symptoms seem to have improved lately - the side of my face with the AN used to seize about once a day, but hasn't done so in several months.  I still have constant tinnitus,  occasional feelings of imbalance, and a buzzing feeling in my head, but those things affect the quality of my life only minimally.  I'm able to work full time and run, ski, hike, bike, and lift weights like I always have.  My tinnitus will not improve in any way through surgery, and my balance would actually get much worse, at least initially, since the surgeon has to cut the balance nerve in order to remove the tumor. 

Studies show that the great majority of these tumors don't grow.  One study I read shows that the quality of life of patients after surgery improved for only about 25% of them, stayed the same for about 50% of them, and declined for about 25% of them.  Based on all that, my thinking is this:  if it's not growing, and if my symptoms are tolerable, why go through a procedure that will put me out of work for probably a month, at a minimum, probably won't result in my feeling any better than I do today, and could result in my feeling substantially worse.

Deciding what to do is tough due to there being so many variables.  Good luck with yours.
- 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

golfguy49

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Re: New guy
« Reply #13 on: April 06, 2018, 09:00:36 am »
Thank you for that, WhiskeyJoe.  Your tumor size and symptoms/situation sounds very similar to mine in so many ways.  I received the official report now that says the size is 10mm x 5mm x 5mm.   I also have not noticed a further reduction in hearing since August 2017 (though tinnitus is louder) and perhaps I am more cognizant to the balance issues and how that has been affecting my energy level, so there could be a bit of a psychological effect I may be able to manage better.  I also picked up some special computer glasses because I work on my computer much of the day, and hopefully that will help as well.

I understand that generally these things grow about 1-2mm per year, but I am also learning more about ANs that do not grow at all.  Makes me wonder if this thing has been there for 10 years and basically has been the same size.  If only we could know that through imaging...like rings on a tree.  This surgery is a real doozy in terms of recovery and potential long-term impacts, so I am starting to lean more towards having a scan in late 2018 (assuming current symptoms remain unchanged) and see what we are looking at then.  Of course, I worry about the "growth spurt" potential as well, but I may have some room to spare right now.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

mac84

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Re: New guy
« Reply #14 on: April 06, 2018, 10:52:26 am »
I believe you're thinking right on it. I had the option last April of going to an MRI every 2 years and that's what the Dr recommended....but I wasn't comfortable because I wondered "what if" if grew during the next year, then I waited a whole other year to find out that it was in a growth mode.  It would be easy if an increase in symptoms correlated with growth but there's no real evidence that that happens. I'll stick to every year and then if I'm forced to make a decision then I'll do it!  Hang in there.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

 


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