Author Topic: Another new guy...  (Read 17831 times)

rupert

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Re: Another new guy...
« Reply #45 on: March 20, 2018, 03:19:00 pm »
I wasn't having any symptoms at 6 months so I just skipped the MRI until 1 year out.  Quite frankly as was mentioned,  it really doesn't tell you much at 6 months but, emotionally it does help some people and it surely doesn't hurt.

dwilliams35

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Re: Another new guy...
« Reply #46 on: April 03, 2018, 07:52:20 pm »
Well, did my MRI yesterday,  I haven’t seen the actual report (says in the online portal that it is “pending” until tomorrow), but I did get the disc.  It’s still there, surprise surprise.  I can’t see that it’s made any huge strides toward swelling, but my career as an amateur radiologist is still in it’s infancy, so I’ll wait to see what they have to say tomorrow.  Back to the doctor on Friday afternoon for that part of this 6 month followup game...

Everything’s still functioning at semi-reasonable levels, so about all I can say at this point is “so far,so good...”
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #47 on: April 06, 2018, 09:43:45 pm »
I went to the doctor today after the MRI:  the AN has swelled a bit, as I knew it could/would.  Went from 13.7 x 5 x 7.4 on the MRI before my GK, to 14.6 x 6.2 x 7.5 on Monday.  The doctor says that while it’s swollen some, it has lost some definition, which may be the start of it breaking down..   he wanted me to go back to my previous doctor to see exactly where my hearing is at now, and another round in six months.  He did say he’s pretty confident everything is going our direction, anyway.
Diagnosed 2-2017,  GK 10-2017.

golfguy49

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Re: Another new guy...
« Reply #48 on: April 07, 2018, 11:33:22 am »
Went to the Doc today,  he's of the opinion that the 3mm growth is beyond the margin for error, and that it IS growing.   Gave me three options,  a further 4 month wait MRI, Gamma Knife, or Surgery.  Of course I already knew that was the options.
I thought one of your options given to you by your doctor was a further 4 month wait MRI.
. The existence of the option doesn’t necessarily imply it being a viable, or good option.  That quote was from an earlier visit, different doctor, who really didn’t consider that the best option either, but wasn’t going to any great ends to push me away from it.  He referred me to another doctor who made the case that it wasn’t a good option in my case.  I also had the option to walk out the door and crawl in a hole somewhere, I didn’t do that either.

I'm sure we have all had our own thoughts about your last line, especially right after a diagnosis.  I saw great sign posted outside a local business THE DAY I was diagnosed when I was driving home - "Throwing in the towel just makes more laundry".    I couldn't help but think that message was put there for me on that very day, and I think about it every single day now.  It helps keep this situation in perspective.  I hope your GK comes out great for you.  Mine is a little smaller and I have not yet consulted with a GK-focused doctor - I've only talked to surgeons thus far who say I am too young (46) to consider GK as a better option than surgery.
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

dwilliams35

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Re: Another new guy...
« Reply #49 on: April 07, 2018, 01:01:42 pm »

I'm sure we have all had our own thoughts about your last line, especially right after a diagnosis.  I saw great sign posted outside a local business THE DAY I was diagnosed when I was driving home - "Throwing in the towel just makes more laundry".    I couldn't help but think that message was put there for me on that very day, and I think about it every single day now.  It helps keep this situation in perspective.  I hope your GK comes out great for you.  Mine is a little smaller and I have not yet consulted with a GK-focused doctor - I've only talked to surgeons thus far who say I am too young (46) to consider GK as a better option than surgery.
. Well, so far so good, at 6 months post-GK.  In my case, it was really just presented as a “take your pick”:  I initially leaned toward the GK mainly to minimize the downtime, for lack of a better phrase.  Once I started talking to the surgeon that actually did the GK (he would have been involved in a “regular” surgery as well) he told me that my AN was just a much better candidate for GK than surgery based on location, anyway.   I’m 53 (52 at the time all this was going on) and there really wasn’t much mention of “at my age” in the decision one way or another. 

The real problem here is the either or choice here:  we don’t have anybody out there that has done both in the absence of some real problems which would muddy the results of such a survey.   You can’t go back and see if the other one works better for you.  All I can say is that so far I’m glad I had the option.  I wasn’t looking forward to any of the surgical options. 

The doctor seems to be quite confident that everything’s going according to plan, and so far I haven’t seen anything on my end to really doubt that.  Time will tell.

Good luck.
« Last Edit: April 07, 2018, 01:07:10 pm by dwilliams35 »
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #50 on: April 15, 2018, 08:33:00 am »
When I went to the doc last Friday, we were talking about my hearing “degrading” somewhat as the AN swelled:  not as much a constant decline, just an intermittent issue now, I’d get a few days’ worth of inner ear pressure and the hearing would “deaden out” with it.  I asked him about just another round of prednisone, as it had helped with such conditions early on in this operations. He wrote me a prescription for some dexamethasone pills, and after part of the way through the course of that, the hearing/pressure seems to have subsided.  Again, so far so good..
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #51 on: April 22, 2018, 12:47:42 pm »
Just for the record,  dexamethasone isn’t all it’s cracked up to be after getting deeper into a course of treatment.  I hate this stuff.  Jacks with pretty much every system you’ve got to operate in a normal fashion, sleep, appetite, etc. etc. etc....   that, and my tinnitus has now turned from the standard hiss to a 24/ x about 5 days replay of one little horn riff that sounds something like Herb Alpert and the Tijuana Brass.  At least they were courteous enough to have laid off the percussion track after a day and a half.    I was honestly thinking I was picking up the radio in my head at first, until I realized the song never changes.

The hearing pressure pressure and deadness did subside, though, so there’s that. 

Will be more forceful in specifying the prednisone if the need arises in the future.
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #52 on: June 11, 2018, 09:09:22 pm »
Okay, another two months, another doctor visit:  this time, back to the neurotologist that had been seeing me up until I decided to go with the GK.  The neurosurgeon wanted me to just go back to him (they’ve got something of a partnership on AN’s). to compare hearing symptoms, etc.   the good news is, my base hearing score is identical as of right now to my last test with him pre-GK.  The bad news is that there’s a second part of that score,  speech understanding or something like that, where I was down 50% from what I was.  To be honest, I really think I would have done better on that if I had opened my mouth and told the Audiologist  to turn the dang thing down during that part of the test, that it was rattling my brain.  She had gone the whole time acting like I was basically without hearing, positioning herself right in my face, speaking loudly and distinctly, all I really wanted to say was “I.can.hear.you.fine.”   That assumption of a higher level of hearing loss may have translated to the test as well.  Or, maybe I just can’t understand as well any more and I’m grasping at straws.

Bygones.  We’ll see what it turns out next time around.   One way or another, in my own opinion, my “downturn” in hearing of a couple of months ago seems to have reversed itself,  and the doc agreed that my balance was improving as well.. 

Next MRI, and follow up visit with the neurosurgeon, in early October... I’m still hearing somewhat effectively with both ears, still haven’t wiped out with any balance episodes,  and Herb Alpert has gone down to just playing inside my head on occasional weekends, rather than a nightly gig..  the regular tinnitus is still around for the most part,  however.  So far so good..
Diagnosed 2-2017,  GK 10-2017.

golfguy49

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Re: Another new guy...
« Reply #53 on: June 13, 2018, 09:02:10 am »
Oddly enough, I feel some improvement as well. I don't have my tests until late August, but my balance feels much better than it has in months (in fact, I don't even notice any balance issues) and my hearing is stable.  Tinnitus is there, but I have learned to live with it so much I almost never notice it.    I wonder if any of this "improvement" we experience has to do with a combination of weather and seasonal changes that not only affect temperature and barometric pressure, but also mood and distraction levels.  I, for one, am far more busy in the spring and summer of the year than I am in the winter, and I think it does my health a lot of good to keep busy and moving, even for the tumor in my head.
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

PurrfectHappiness

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Re: Another new guy...
« Reply #54 on: June 22, 2018, 01:42:54 pm »
Hi there.

I’m a Newbie as well, diagnosed 3 months ago (9x5x5mm) left side.

I too had Sudden Hearing Loss (in 2014). I woke up in the wee hours of the night as I felt the pressure change when it occurred, and in the morning, I noticed a significant difference in hearing and immediately went to my ENT.  I was prescribed steroids and anti-viral meds and fortunately regained my hearing a couple weeks later.
I was fine after that although started noticing some tinnitus and fullness in my ear in 2017 and finally got an MRI done in March 2018, hence the AN diagnosis. I noticed an “off” feeling in 2017 but couldn’t put my finger on what was causing it.
I too underwent balance testing (ENG and caloric test). I had abnormal results immediately with the caloric testing and had to do an additional cold water test in my right ear to confirm. I had the water administered 5x during that session, awful to go through for me as I hate water in my ears, but we can all do it and get through it!!!! 
After the AN diagnosis, I have experienced balance issues which worsen as the day goes on with increased fatigue. 

I was told by my Dr after the balance tests that my left side is still sending distorted signals to my brain and that my right side has not taken over.  I researched this and discovered this is called “decompensation”.  I am doing vestibular exercises to assist my right side in compensating for the left side.  It is wearing me out and causing increased fatigue being in mixed signals mode.

It is frustrating but I am managing and adapting to the imbalance symptoms.  I sometimes walk into a wall and trip over my own feet but fortunately not to the extent of falling.  I just laugh at myself and keep positive and keep marching on. 

I cannot drink any alcoholic drinks anymore as just a couple sips of wine or beer make my imbalance much worse. Please keep this in mind if/when you have an occasional alcoholic drink.

I am responding to share my experience with you as a Newbie and learning how to adapt and cope.
I am still driving and keeping myself active and busy and pushing through this imbalance issue as best as I can. Doing exercises help and keeping physically active with a positive frame of mind.

I was told by another AN patient who has been in W&W mode for 12 years now that her balance issues lasted for 2 years, and she said hers got worse before they got better. 

Best wishes and kind regards to everyone on this journey.  So grateful we are able to support each other through this.  :)

dwilliams35

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Re: Another new guy...
« Reply #55 on: August 18, 2018, 09:09:36 pm »
Another two months in... I’m kind of getting “variable” hearing in my AN ear..  occasional pressure feeling, which knocks the hearing down, then it subsides and the hearing improves a bit.   I’m not quite sure what that would be attributed to.  Balance is pretty good now:  no real issues with that in some time.  The tinnitus is still there, but it’s just garden-variety ringing in the ears; Herb Alpert seems to have exited stage right..    My next MRI is the first week of October, with a visit to the doc scheduled a few days later.   
Diagnosed 2-2017,  GK 10-2017.

golfguy49

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Re: Another new guy...
« Reply #56 on: August 19, 2018, 01:28:54 pm »
I'm on the same path as you and same types of symptoms now.  Hearing seems a little worse, with some pressure from time to time.  I also get dizzy and fatigued very easily with any physical expression.  I used to walk playing golf - now I really have to ride because I get dizzy within a few holes from walking, especially if it's warm out.  I also have a sore neck often and a bad right shoulder that has sharp and constant pain, but I have no idea if this is related to my AN as possible referred pain or if it is some other ailment that is getting worse with age.  My next MRI is also in October, or anytime sooner if I prefer.  I have a standing order from the doc to go in and get it done when I want before November.  The goal of waiting to get an MRI is to see if this bugger is growing at all, but my sense from these various symptoms is that it is in fact growing, just a matter of finding out how much.  I know all of that is guesswork without an MRI.
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

dwilliams35

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Re: Another new guy...
« Reply #57 on: December 31, 2018, 07:47:47 am »
Haven’t checked in in a while;  got through the October MRI okay, went to both docs for follow up afterward.  They both told me the same thing, of course.  No growth, and signs of it breaking down.

Dizziness is all but gone, just have an occasional few seconds of lightheadedness, probably weeks apart.  It’s really insignificant enough that if you told me it wasn’t AN related, i’d have no problem believing you..There is still some variable hearing issues in the AN ear: the hearing aid folks cranked that one side up 20 decibels or so and it’s usable again, but the “full” feeling comes and goes: just annoying if nothing else.

Altogether, I guess I’m “stable”: just not much changing.    I believe I’m up for one more 6 month MRI cycle, then they’ll switch to yearly.
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #58 on: April 19, 2019, 07:40:34 pm »
A year and a half post-GK now....  apparently I was wrong about one more 6 month MRI,  they’re going to wait a year....   meanwhile, balance problems are pretty much gone.  Hearing is pretty much stable, about the only really objectionable thing is tinnitus.  At least it’s now down to just a high hiss, and Herb Alpert seems to have put his horn up for good..
Diagnosed 2-2017,  GK 10-2017.

dwilliams35

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Re: Another new guy...
« Reply #59 on: January 15, 2020, 11:29:28 am »
One more update... Not much to update.  Did another MRI back in October,   AN is pretty much the same size and basic configuration,  I went back to the neurologist that did the GK and he said everything was going along fine and according to schedule.  Balance issues are pretty much gone now,  the hearing is still an issue, of course.  That ear is still my problem child, I went back and got the hearing aids turned up there a month or so ago too.  Still some occasional "full" feelings in there, just very similar to just having your ears get clogged up when you've got congestion.    The real cause of this is hard to decipher, though: how much of this hearing loss is from the AN, and how much is just me being an idiot with assorted firearms and volume buttons when I was younger..   

Main reason I thought about this, going back for the post-MRI checkup with the neurotologist that I started with on this tomorrow; it took me the 3 months or so to get an appointment with him..  I really don't expect anything earth shaking from that appointment, but I'm just going through the process..

All in all, I'm doing pretty well with it.   I need to confirm this, but I believe the neurologist pushed me to 2 year intervals on the MRI/checkups now..



Diagnosed 2-2017,  GK 10-2017.

 


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