ANA Discussion Forum

General Category => AN Issues => Topic started by: golfguy49 on April 03, 2018, 07:04:02 am

Title: New guy
Post by: golfguy49 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.
Title: Re: New guy
Post by: KeepSmiling 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!


Title: Re: New guy
Post by: ANSydney 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
Title: Re: New guy
Post by: golfguy49 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.
Title: Re: New guy
Post by: rupert 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.
Title: Re: New guy
Post by: Director 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
Title: Re: New guy
Post by: golfguy49 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.
Title: Re: New guy
Post by: Greece Lover 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!
Title: Re: New guy
Post by: mac84 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
Title: Re: New guy
Post by: ANSydney 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.
Title: Re: New guy
Post by: ANSydney 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.
Title: Re: New guy
Post by: golfguy49 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.
Title: Re: New guy
Post by: WhiskyJoe 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.
Title: Re: New guy
Post by: golfguy49 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.
Title: Re: New guy
Post by: mac84 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.
Title: Re: New guy
Post by: golfguy49 on April 09, 2018, 07:17:36 am
Thanks, mac84.  Good luck with your MRI this month.  Look forward to hearing about your results.
Title: Re: New guy
Post by: lablove on April 18, 2018, 05:28:12 am
Hello Golfguy,
This is my one year anniversary of middle fossa removal of a tumor your size and I am just a little younger. I am happy to be on the other side of surgery and am rid of the tumor. I am also very joyful with life today but it was a very difficult recovery. I wasn't quite prepared for how bad it could be. Prior to the surgery I had perfect hearing, feeling of cotton/fullness in ear, moderate fatigue, and a "floaty" sense of balance. My demeanor was very similar to your post. Removing the tumor sooner than later was to give me the best chance of hearing preservation, non disruption of facial nerve and chance for better balance recovery. After surgery I had complete facial paralysis, permanent and complete single sided deafness, complete removal of balance nerve, csf leak, inability of have eye exposed to air despite the ointments and drops for months, and significant persistent tinnitus. That being said, it was a long road to regain my life back. Despite the complications and difficult recovery I still think I am better off having had the surgery and being rid of the tumor. I don't think though based on everything I went through with all possible complications that you should rush into it. Not a big chance what happened in my case will happen in yours, and I will specifically pray that it does not, but there is a real possibility of significant life disruption. Pick the time it is best for you to potentially dedicate a year to getting better...and be relieved when you are healed much, much sooner complication free.
Title: Re: New guy
Post by: golfguy49 on April 29, 2018, 12:57:29 pm
Thank you, lablov.  I am sorry to hear how hard your recovery was, and that is what concerns me most.  Not only because of the pain and difficulty, but the idea of essentially ending my career and thus not providing for my family is, well, unimaginable.  It's all I have done for 30 years, and it is my purpose.  To think I could go through a 1-year recovery is not something I can contemplate without a better long-term medical and financial plan with my family and wife (so far no one else in the world knows about this except my wife and doctors), so I am willing to take the risk and wait for the next MRI to see what it tells me.  My hearing and the tinnitus remain stable.  Hearing is about 85-90% OK in that ear and my tinnitus and I get along.  I have recently had the balance tests done at my ENT and get results back tomorrow.  Hopefully that will give the doctors a better idea of whether or not middle fossa is even a feasible option (to save hearing).  If it is not, the doctors say why take the risk, and they would go with a translab instead. Your description of being "floaty" is a good one - it is so minor as to be able to get used to it, but I do know it is always there.  Sometimes it feels absent altogether.  Thanks again for your post and your prayers.
Title: Re: New guy
Post by: Cityview on April 30, 2018, 03:47:52 pm
I think if there's a choice between watch and wait and treatment, and a person is newly diagnosed, it's a good idea to watch it. The benefit of waiting gives the patient more time to understand the different choices. When you delay treatment and choose observation you always have the right to treat later when things seem clearer. Sometimes new information becomes available or you understand the risks more.
Also when you choose to wait it gives you a goal to reach - your next MRI. You can always use that as a focal point and as a time to reassess the situation and gather information in the meantime.
Sometimes we worry about the chances of rapid growth and sometimes it may happen - but rarely. More likely it will stay the same size or grow very slowly.


Nobody can predict the future and what the symptoms may be but we can only go on the information we have right in front of us.

Title: Re: New guy
Post by: mac84 on May 01, 2018, 11:58:57 am
CityView has it EXACTLY right. Well done.
Title: Re: New guy
Post by: ANSydney on May 01, 2018, 05:13:26 pm
I agree, Cityview is spot on.
Title: Re: New guy
Post by: Jakey on May 06, 2018, 10:53:26 am
If your hearing & balance issues are not worsening, then I would watch & wait as well.  That said, note that there are some limits to AN size & location when it comes to treating via radiation, so you just need to know how those relate to your situation before making a decision.  Don't wait so long that surgery is your only option. 

The other benefit to waiting is that if you can delay treatment for several years, you will have more treatment options than you have today, through advances in technology & medicine.  Just last month someone here posted an article about a Phase II study being launched on the use of the drug mifepristone to treat AN.  Now wouldn't that be nice if we could take an oral medicine to halt growth/shrink these things.
Title: Re: New guy
Post by: Abetpds on May 06, 2018, 02:18:42 pm


Computational repositioning and preclinical validation of mifepristone for human vestibular schwannoma Done by Mass Eye and Ear Institute.  I've done some reading and reached out to Dr Friedman in U San Diego for comment.  He said that this is a computational algorithm with no data on people done.  However, these tests were done on AN tumors taken out during surgery.  Would like your opinion/comments on this.  My tumor is pretty large and if this drug works to curb growth - I'd do it.   Thanks  Regina
Title: Re: New guy
Post by: notaclone13 on May 06, 2018, 06:57:06 pm
Hi Regina,
I am a retired scientist and read the paper about mifepristone.  I worked with many tumor cell lines through the years.  Unfortunately, drugs that look promising on cultured tumor cells may not work the same way when administered to patients with growing tumors. That is what the clinical trial will determine, however, it may well take a year or more to find the money to finance the trial and then recruit patients and run it.  Since ANs usually grow slowly, even when untreated, it will likely take a couple more years before the results of the trial are known.  Since your tumor is now near the brainstem, and apparently growing, you are probably going to have to make a decision in the very near future, before the trial can be intiated.  Are you a candidate for Gammaknife or Cyberknife?  It might be good to see if that is possible.  If not, than it would be wise to find the best surgeon available and I know that Dr. Freidman is one of the best.
Title: Re: New guy
Post by: Kaci on June 02, 2018, 06:57:16 am
You may have had the surgery by now but if not just putting my suggestion out there. l was diagnosed last year at 46, female. No symptoms other than a sudden change with a ringing noise in my ear. l am fortunate the ENT sent me for an MRI. l am in CT and saw many doctors ln my area, mostly Yale. l had consults over the phone with House in LA and Michigan Ear Institute. After extensive research l wasn’t satisfied with the CT doctors and the little experience they had with these tumors. l narrowed my search to NYC With Dr Golfinos and Dr Rowland, one the surgeon the other being the neuro surgeon. l chose them for many reasons but to highlight a few was the fact that they remove these tumors weekly, atleast two a week sometimes more. On the East Coast l believe they remove the highest number of them and l liked the fact they are partners. At Yale the neuro would of been whoever was on call and their removal was a few hundred not thousands. l had a long battle with my insurance but l won my case. My advice is to seek out the best of the best. My tumor ended up very sticky and more complicated then they thought. Had l not had experienced surgeons l do not want to think of what could of been. l will be a year post op in July still recovering. l was out of work for 3 months, way longer then l thought l would be. Take your time in your reasesrch and recovery, best of luck to you
Kaci in CT
Title: Re: New guy
Post by: Abetpds on June 08, 2018, 07:07:19 am
Thanks to all of you.  I decided to do surgery at UCSD with Friedman and Schwartz.   I paid them a visit in May to interview them in person and was happy with them and their patient advocate Kris Siwek.  Surgery scheduled for June 26th.  I opted for the BAHA 5 over the Oticon mainly because of the "feel" I got from my audiologist.  Wish I knew for sure which is the right one for me.  Only problem is that hotels are sooo expensive in La Jolla even with the hospital rate.  Looked into Air BNB and Home away --but they are mainly "vacation" spots and are not cheap.  Still looking. Suggestions anyone?
 Keep me in your prayers please.  Thanks  Regina
Title: Re: New guy
Post by: leapyrtwins on June 08, 2018, 09:37:11 am
Hey, new guy.  I live in Illinois and had my surgery on 5/31/07 with Dr. Robert Battista @ the Ear Institute of Chicago.  Look him up.  He's a phenomenal doc who really knows his stuff.  He does both surgery and radiation - and doesn't "push" either, unlike some doctors who only do surgery or only do radiation.  He's also low-key, very honest, and has a great bedside manner.  He will not sell you a bill of goods; like some.

I chose to have surgery (retrosigmoid) and my outcome was incredible - no facial paralysis or other permanent "issues" with the exception of being SSD (single-sided deaf) and that was only because my AN was wrapped around my hearing nerve and it had to be sacrificed in order to remove the entire tumor.  I opted for a BAHA implant 9 months post AN op and life is good.  BAHA's rock!

If you want to know more about my AN "experience", there are hundreds of posts on this forum.  Check them out - and if you have any questions, don't hesitate to PM  or email me (my email address is in my profile).

Good luck,

Jan
Title: Re: New guy
Post by: leapyrtwins on June 08, 2018, 09:39:59 am
Abetpds -

the BAHA 5 absolutely is the way to go!  I love mine - as I've loved all my other Cochlear BAHAs.  I've been a customer since 2008 and along the way have upgraded from the Divino to the BP100 to the BAHA 5 (that I currently wear).  All the upgrading wasn't necessary, I just wanted the newest technology - which is something Cochlear excels at. 

Jan
Title: Re: New guy
Post by: golfguy49 on October 06, 2018, 03:53:56 pm
Had my 6-month follow-up MRI this week.  Radiology concludes it has grown just a bit - 12mm x 5mm x 5mm now compared to 10mm x 5mm x 5mm at diagnosis 6 months ago.  I have no additional symptoms, and my other symptoms remain stable (tinnitus/hearing slightly impaired/some head pressure that results in late-day fatigue/balance seems OK compared to early days).  Won't see the Dr. for a couple of weeks to hear what these new MRI results could mean.  Is it possible that 2mm is within a margin of error for assessing the size and growth?  Or, is 2mm enough to signal the need to consider surgery?  Middle fossa has been the surgery discussed and multiple surgeons concurred on that, as with this size and placement it seems there is a possibility to save some hearing if the surgery is done soon enough.
Title: Re: New guy
Post by: golfguy49 on November 26, 2018, 01:19:11 pm
The Dr. referral process takes quite a while, and I finally talked to the 4 docs with whom I intended to discuss my October MRI results:  Slattery at House, Fishman in Chicago, Battista in Chicago, and Leonetti in Chicago.  Let me just say these doctors have all been great to speak with and I feel I can trust my noggin with any of them.  I have researched them all in various ways as well.   None seem too pushy about jumping in and doing surgery, but from all 4 I heard that:  (1) this thing will need to come out at sometime in my lifetime and (2) if I wait and growth continues, especially at this rate, the likelihood of saving hearing in that ear goes down pretty fast from here (3) I am not a good candidate for gamma knife.  How fast more rapid hearing loss could happen slightly varies among the Drs opinions.  My hearing test and balance did not come out good - I have less speech recognition in that ear than I had just 6 months ago, by quite a bit (15-20% or so).  The tumor is "most likely" on the superior nerve per the balance tests. 3 of the 4 docs also agree middle fossa is the way to go (one of whom doesn't even perform middle fossa), and the other one said he doesn't deal with middle fossa because of the need to retract the temporal lobe - too much risk in his mind, so he said he would do retrosigmoid, which I understand from additional research probably has a lower chance of hearing preservation.  I'd hate to do retrosigmoid and not have the best possible shot at hearing preservation.  I also read about CSF and headache problems a bit more with retrosigmoid.  Even the middle fossa docs call it 50/50 to save hearing right now.  My gut is telling me to schedule the surgery for January.
Title: Re: New guy
Post by: jami on November 27, 2018, 09:13:07 pm
Sorry to hear about the latest, but you sound like you are in good hands. All of what you mention matches what I was told as well. I never got to go through the watch and wait period - diagnosed in June, surgery in August (and it felt like a lifetime). If you are an ANAUSA member, I strongly recommend watching the Oct 17 webinar "The Patient-Centered Approach to Acoustic Neuroma". It felt like my months of research / google / dr appts were ALL covered.

For what its worth, I had to make a choice between "maybe" preserve some hearing but risk the facial nerve, or lose the hearing (and balance) and preserve the facial nerve. I went retrosigmoid, lost hearing and balance but face was in good shape by the time i went back to work @ 6 weeks. The hearing is tough, but I work with people with single sided hearing (its a random thing) and life is better without the neuroma than with the hearing.

Its different for everyone, take advantage of the time now to be as ready as possible for the surgery. I started walking 5 miles / day to prepare, wanting to be as healthy as possible. No CSF issues (yet?), no headache issues (yet?) BUT my life will always be a bit different.  BEST of luck!

Title: Re: New guy
Post by: kestes on November 28, 2018, 10:54:19 am
Hi, I just had GK 3 weeks ago for 14mm which I guess translates to about 1.4 cm or less, 24 hour tinnitus, balance issues and fatigue and about 10% hearing loss.  I just turned 51 and my husband and I are avid hikers, mountain climbers, runners, bikers, etc.  I chose GK because I did research and felt comfortable with the 50 years of procedures that doctors have done, PLUS I wanted to continue my lifestyle.  As a matter of fact, we leave next to hike THe Wave in Kanab, Utah, and are doing hikes in Zion and Bryce - all within one month of GK.  I have no idea how my hearing will be in years to come or if my symptoms will get worse.  I chose one of the best doctors Dr. Jason Sheehan UVA and Gamma Knife clinic in the country - actually many people from all over the world come to him.  I trust his experience and plan to live my life to the fullest as I still will get mris oftern.  I do not worry one second about the AN and what its future will be, if I lose my hearing I will get a hearing aid.  My AN grew from first diagnosis and I decided to go with treatment before it grew any larger.   

There are several facebook groups to join as well that are soooo informative and tons of people have had Middle Fossa.  That was suggested for me because I still have hearing, but I was not a fan of surgery when I could take a least invasive route first.

Good luck with your research and whatever you decide for you!

 
Title: Re: New guy
Post by: golfguy49 on November 28, 2018, 03:52:28 pm
Thank you for the replies, kestes, and jami.  I have now watched the webinar and that has added some things to my thought process.   This is not an easy decision without certainty of some hearing preservation.
Title: Re: New guy
Post by: lablove on December 27, 2018, 08:52:14 pm
Did you find out if the 2mm growth is within standard of error?
Title: Re: New guy
Post by: golfguy49 on December 28, 2018, 09:26:49 am
The last 2 surgeons I spoke with asked if the MRI was done on the same machine.  It was not.  I have 2 hospitals near me that are owned by the same network, so they send me to whichever one has the best schedule availability.  My most recent MRI was done on different machine in a different hospital than my first MRI.  I wish I had previously understood that using the same machine would be important.  Those surgeons both said this most recent difference "could" be due to differing machines, and not true growth.  They studied both scans in front of me very closely and they could not say for sure this represents "growth".

My balance issues have really improved over the past 45 days or so.  I haven't felt this good in probably 18 months.   I can even do some moderate exercise.  My plan is to do another MRI in May (on the same machine as my MRI from October) and see if growth is more evident.
Title: Re: New guy
Post by: golfguy49 on April 25, 2019, 08:00:32 am
My latest MRI says the tumor is 12.6mm x 7.3mm.  That is pretty substantial growth in 1 year (from 10mm x 5mm).  I am planning to schedule surgery with my Dr. when I meet with him in 10 days or so.  My balance remains quite good and and I have been able to do a lot over the last 6 months that I could not do in the year prior, so I hate to risk/ruin this run of feeling so good, but I know there is a ticking time bomb if I do nothing.  Time to act.
Title: Re: New guy
Post by: lablove on April 27, 2019, 09:58:40 pm
I am wishing for you a great outcome! Let us know your surgery day & I will specifically pray for you & your recovery.
Title: Re: New guy
Post by: notaclone13 on April 28, 2019, 08:31:56 am
Please keep us in the loop regarding your surgery. Wishing you the very best outcome possible.
Title: Re: New guy
Post by: golfguy49 on October 28, 2019, 05:17:33 pm
I am scheduled for surgery in early December.  My latest MRI showed further growth, with tumor now around 1.4cm.  That's about 40% growth in 18 months.  Middle Fossa no longer an option (too dangerous), so we are going with Retrolab.  Doc says 50/50 on saving some hearing.  NW Medicine in Chicago.
Title: Re: New guy
Post by: ANSydney on October 28, 2019, 06:28:10 pm
Rather than retrolab (which can be confused with translabyrinthine), I think you meant retrosigmoid.

Good luck with saving hearing.
Title: Re: New guy
Post by: golfguy49 on October 28, 2019, 06:51:49 pm
It is retrolab.  Not a lot of docs do it, but I don't know why not.  It is basically a hybrid between translab and retrosigmoid that allows for possible hearing preservation (whereas translab takes the hearing) but doesn't require such a large movement of the brain to get to the tumor.  My doc told me about it 5 months ago and I've researched it a bit.  He performs all possible AN procedures, including GK, so he went through all options and discussed the upside and downside of each.  This is a good option considering Middle Fossa is no longer a safe option.  I let too much growth occur in the last 18 months, so Middle Fossa is out because the artery "behind" the tumor is even that much less visible now.
Title: Re: New guy
Post by: ANSydney on October 28, 2019, 08:48:02 pm
Thanks golfguy. It's good to hear about this approach. Thanks for updating my knowledge.
Title: Re: New guy
Post by: mistasteve on November 03, 2019, 02:31:14 pm
Hi golfguy,

I'm about your age (49) and had translab in July. My hearing was about shot by then so the SSD while worrisome was not going to make a huge difference.

I'm now coming up on 4 months out. My experience was 'good, but with challenges'. Good because the surgeons were excellent, so there were no facial paralysis issues or CSF leaks or such. I was not ready for the challenges around balance and fatigue, though. As I'm writing it's Sunday afternoon and I'm feeling pretty wiped out. That said I started a weightlifting program a couple months back, and I'm definitely able to do it without room spins, and 'hope is alive' I'll be able to get back to the level of running I was at pre surgery, though I'm not there yet.

Overall I'm glad I did surgery, I'd say. Tinnitus was really bad before, now I don't have it. I was having balance and fatigue issues before - I just didn't know to make the connection. I was having pains in my face due to the facial nerve being increasingly compromised, now I know I'm past the danger there. I'm hopeful that although this is a slow process, although I'm at a 'new normal', I'll still be able to do stuff and feel gradually more and more 'like myself again'. Had I not had surgery, who knows, misfortune might have found me in a place where, some years in the future, I didn't have good insurance or a reasonably understanding employer. Everybody's experience is different, just throwing my experience into the mix. Definitely wish you well on your journey and that you get the best care for your particular case.
Title: Re: New guy
Post by: golfguy49 on November 07, 2019, 03:25:45 pm
Thank you for your comments, and it sounds like you are pretty happy with the overall results.  Could I ask what hospital you went (don't need to name the docs if not comfortable doing so)?  I don't have any facial nerve indications at this time and my Dr has totally downplayed the risk there - he says he just doesn't have those types of issue with his patients.  Very interesting that your tinnitus went away - many people I speak to (such as in support groups) would gladly give their hearing in one ear to get rid of the tinnitus in that ear.  For some, it seems unbearable, and I feel for them.  Mine is always there, but I have trained myself to focus on it very little.  Thanks again for posting.
Title: Re: New guy
Post by: mistasteve on November 11, 2019, 08:41:40 pm
Sure, no problem. It was Dr. Rick Nelson (ENT) and Dr. Mitesh Shah (Neurologist) at Methodist Hospital in Indianapolis.

With the tinnitus there's a discussion on one of the Facebook groups now - some people have less after surgery, some have more. Again guess I had a combination of luck and very skilled surgeons.
Title: Re: New guy
Post by: golfguy49 on November 12, 2019, 08:12:17 am
Thank you.  I have not heard of those docs before, and it is always good to hear of successful surgeries with docs I have not heard of before - to me, that has an implication that generally the quality surgery options are broadening.  It's not just a few surgeons out there who can do this...there are many who will do a great job, but that does not mean homework is not needed on a patient's part.  I also read medical journals and articles that say "saving" hearing through procedures can be a little misleading...because over time is is likely to degrade anyway.  Would love to hear from someone who had middle fossa or retro 20 years ago and still hears as well today in that ear.
Title: Re: New guy
Post by: golfguy49 on February 06, 2020, 10:54:39 am
Had my retrolab surgery Jan 30.  6 days in hospital. 100% tumor removed, currently deaf in that ear but hope some hearing will return after blood dries and canal clears out.  Technical indications during surgery are that hearing is still there.  Balance currently off but can walk without a walker (but need to be guided by a wall or person).  Tinnitus remains at about the same level - again, I hope that gets better as healing progresses.  My left side feels very congested right now, not just deaf, so I hope that feeling improves.  No facial issues.  Left eye seems a little light in closing, but it does close and I have no trouble sleeping.  Start PT rehab Monday to improve balance.
Title: Re: New guy
Post by: chrisabbott on February 06, 2020, 04:22:53 pm
Good to hear that your surgery appears to have gone well - fingers crossed that you were able to save your hearing.  If you find you have lost some, don't hesitate to look into hearing aids - I got to use them before losing the rest of my hearing and it was fabulous.  Five of my friends went and got their hearing tested; four of them got hearing aids and all are thrilled with the difference it is making in their lives.

I also hope you find the PT helps you manage the balance issue quickly - I'm blessed with some ability to instinctively deal with it.  Apparently years as a gymnast did that (even though I stopped at 16, and I'm now 57!).  Only places the world swirled on me post-op, was in large parking lots - I'd just step once sideways toward the "lean" and stare at something vertical and straight like a lamp post.  Worked a treat, but the few occasions it happened, had me thinking how hard it must be for people that get dizzy/unbalanced feelings.
Title: Re: New guy
Post by: golfguy49 on February 09, 2020, 06:59:23 am
Thanks.  I would love the opportunity to use a regular hearing aid.  Much better than BAHA or CI, though I am open to those as well, if necessary.  Hearing is the most important thing compared to vanity concerns of the devices, as far as I am concerned. 

3 days after coming home.  Double vision has kicked-in now after lying down or sleeping.  This started 2 days ago. Usually takes getting up and walking around (with help) for 15-30 minutes and then my eyes seem to reset and it goes away.  But as long as I don't get up and walk, it remains.  Head still feels very heavy and wonky.  Tinnitus is loud and feels like it has transferred to the other side as well, which I am hoping (like a head cold), means I still have some swelling and congestion, and once that subsides, maybe things will open up more.  Still no really good sign of remaining hearing on the operated side.  Balance is a little better when walking - not ready to drop my helper yet, but I can see that happening in coming weeks as I start PT in earnest.

Title: Re: New guy
Post by: golfguy49 on March 23, 2020, 10:09:45 am
I am 53 days post-op.  I feel pretty good most days, though some days I feel fatigued and more dizzy.  PT told me not to come back because they have done all they can for me and I hit all my goals.  I can drive, though I have not had much use for it with the coronavirus lockdowns.  I have no headaches (unless I push it too much) and the congestion I felt for the first 4-5 weeks post-op has cleared up, so my head feels normal weight again.  I still have some dizziness when walking but each day gets better in micro ways.  Tinnitus dropped back down to pre-op levels about 10 days ago and that is much more manageable, and I only get rushes of increased volume after long conference calls.  I do office work and work from home, and I started back 1 week post-op at about 10%, and each week I increased about 10%, so I am now able to work full-time with some long breaks sneaked-in during the day.  I could probably even travel and manage customer meetings if I needed to, though I know that would fatigue me.  Still working on my stamina by walking 1-2 miles each day.  Ok, so now for the hearing:  the doctor, of course, was right.  While I had great hopes that most of the hearing would return after my congestion went away, it did not.  I did get a little improvement and a cheap Amazon hearing amplifier has been useful when I need it, though I am anxious to get to an audiologist and test some quality hearing aids to see how they work for me.  I don't see the need for BAHA or CI in my case.  My surgery side helps enough with the other side to function just fine, but I will be avoiding loud places (concerts/sporting events) perhaps for the rest of my life to protect my best ear.

If I can get out of this with 100% of the tumor gone (MRI in 30 days to confirm what doctors said immediately after surgery), balance back to normal, no headaches, no facial nerve issues, and a simple hearing aid to give some help when I want/need it, I will feel like one of the luckiest AN people out there.  Plus I have a bad-ass scar to fabricate some stories about as an icebreaker.
Title: Re: New guy
Post by: Greece Lover on March 24, 2020, 01:46:56 pm
Thanks for the update.  Sounds like, all things considered, a very good outcome. I wish you continued luck in your recovery.  As time moves on, the improvements become more incremental. but they do continue.  Good luck!