ANA Discussion Forum

General Category => AN Issues => Topic started by: dwilliams35 on April 24, 2017, 04:03:56 pm

Title: Another new guy...
Post by: dwilliams35 on April 24, 2017, 04:03:56 pm
Got diagnosed about a month and a half ago,  10mm x 5mm at this point.   I had a sudden almost total hearing loss in the right ear,  went to the ENT.  They prescribed an MRI and prednisone, I got the majority or all of my hearing in that ear back about five days later, and an MRI and subsequent diagnosis later that week..   

I already had hearing aids,  although this was my GOOD ear..  Too many years of shooting and power tools..

I went and saw their associated neurotologist a few weeks later,  and moved basically into a wait and see mode with a second MRI supposed to happen in September.  During that visit,  he did a "drunk test" and that was the first time I noticed my balance was affected.  I may very well have just not noticed a problem before that, but I dang sure do now.  I sent an e-mail to that neurotologist's office saying "is this what I can expect"?  (dizzy spells quite often through the day, balance issues, etc.: I haven't "wiped out" yet from losing balance, but it's certainly noticable.)   They then recommended another Audi test and an ENG test.  I'm not sure just what that will tell them besides "take another MRI"?  It's scheduled for week after next, but everything I've read about that leaves me with "just what good is that going to do?  We already KNOW what the problem is"..  Anybody have any revelations for me on that?

This has certainly occupied a healthy dose of my thoughts since the diagnosis,  and my few days as 1/2 deaf have left me thinking that I REALLY, REALLY don't want to lose that for good..  I'm sure I'm overreacting there, there's a lot of people that have handled it better than I'm giving myself credit for, but that was an eye-opener..  Fortunately it is apparently quite small and I've got some time to think about this.  Unfortunately, I've got some time to think about this.... ::)

Title: Re: Another new guy...
Post by: ANSydney on April 24, 2017, 07:21:05 pm
What is important is the size and growth rate. If the tumor is not growing, you've achieved what radiosurgery is aiming to achieve.
Title: Re: Another new guy...
Post by: dwilliams35 on April 24, 2017, 09:06:07 pm
Well, it will take a second MRI to tell if it's growing or not, right?  I'm just not sure what this ENG test will prove besides that my balance is affected, which I already knew.
Title: Re: Another new guy...
Post by: voron999 on April 25, 2017, 08:15:50 am
Well, it will take a second MRI to tell if it's growing or not, right?  I'm just not sure what this ENG test will prove besides that my balance is affected, which I already knew.

Correct:  once you have your initial MRI and have an established baseline, then the second MRI should tell if there is significant growth taking place. I am in the same boat. My second MRI is to be in September.

Balance: this is just a theory, but physical activity involving balance training *might* mitigate the issue. This is one of those things where "if you don't use it - you lose it" logic may be working. By the balance-involving exercise brain is actively pressured to compensate and readjust if the issue is present; the brain is a really, really powerful thing and is vastly underused and so needs to be taken advantage of (purely theorizing here, but I do believe into my own intuition).  I myself walk a lot (this is my daily commute), run, play soccer with the kids (this is my way of coaching). Nothing to lose - everything to gain!
Title: Re: Another new guy...
Post by: gary.s on April 25, 2017, 09:56:11 am
I am also waiting for my second MRI to determine if my tumor is growing or not. I am scheduled for the MRI on May 8 and then the neurology appointment on May 11. We are establishing a baseline to see how stable the AN is. Watch and Wait is what I am doing.

My balance has been an issue for a few years now. I have episodes where I am off kilter for weeks at a time, then it improves. I walk each day and find when I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.


Title: Re: Another new guy...
Post by: voron999 on April 25, 2017, 12:47:26 pm
........... I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.

The balance is really an automatic function of the brain and best left alone to do what it does , I would think.
Think of it, the body reacts intuitively much, much quicker on its own than if you try to process the situation.  Just walk/run/play as much as practical and force the stimulation that way, and let the brain thing adapt on the background.
Title: Re: Another new guy...
Post by: dwilliams35 on April 25, 2017, 01:42:36 pm
I am also waiting for my second MRI to determine if my tumor is growing or not. I am scheduled for the MRI on May 8 and then the neurology appointment on May 11. We are establishing a baseline to see how stable the AN is. Watch and Wait is what I am doing.

My balance has been an issue for a few years now. I have episodes where I am off kilter for weeks at a time, then it improves. I walk each day and find when I focus on my balance, I am off balance a lot. When I don't think about it when walking, I do much better. Mind over matter.
  It's hard to tell whether my balance was previously an issue or not: I really, really didn't notice a problem until such time that the doctor did the "drunk test" and showed me that yes, I had some balance issues.  It may be just a function of the fact that now I know I'm supposed to have a problem and thus recognize it when it shows up,  but ever since that appointment I have had the balance issues.  The only other possibilities is that it's growing faster than I hoped, or that initial inflammation that killed my hearing for a few days (solved by the prednisone)  did some lingering damage that I'm seeing now that I'm off the steroids...   I'm still just trying to figure out the upside on this ENG test: I don't see anything it is going to prove besides that I've got symptoms of something that the MRI has already pretty much established..
Title: Re: Another new guy...
Post by: TomB66 on April 29, 2017, 03:19:53 pm
Other than the recent 'drunk test", think about your balance in the dark.  Have you noticed in recent years that when you get up out of bed in a dark room you are well balanced?  And at that time did you blame it on just being tired and not awake?  I have to say once I found out I had an AN, I looked back at that symptom that I had for a couple of years prior.
Title: Re: Another new guy...
Post by: Blw on April 29, 2017, 06:51:39 pm
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.
Title: Re: Another new guy...
Post by: dwilliams35 on April 30, 2017, 03:27:56 pm
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.
Electronystagmogram.  It's definitely aimed right at the balance issues that got this going, but I'm just still wondering just what they're trying to prove; they already have the MRI that shows the AN, this just seems redundant.
Title: Re: Another new guy...
Post by: dwilliams35 on April 30, 2017, 03:29:54 pm
Other than the recent 'drunk test", think about your balance in the dark.  Have you noticed in recent years that when you get up out of bed in a dark room you are well balanced?  And at that time did you blame it on just being tired and not awake?  I have to say once I found out I had an AN, I looked back at that symptom that I had for a couple of years prior.
there might have been some of that before, but not to this level.  Back then I just blamed it on the wife's cat I just tripped over, however..  now I've got a cat AND an AN to lay the blame on..
Title: Re: Another new guy...
Post by: Blw on April 30, 2017, 05:35:13 pm
I had every test at the clinic. I think ENG could be ENoG, which is looking for involvement of the facial nerve. It is possible the tumor is coming of the facial nerve. If so, surgery is a bad choice because if you cut that nerve, you are in for a lot of trouble. Mine did involve that nerve, so I went radiation, specifically, Gamma knife, which has fantastic outcomes for facial nerve schwannomas. I would not worry about balance. That was my first symptom and I couldnt walk without my head down, looking only 5 feet ahead of me. In the dark, I had to hold something because you don't have the visual cues. It will come back as your brain adjusts.
Electronystagmogram.  It's definitely aimed right at the balance issues that got this going, but I'm just still wondering just what they're trying to prove; they already have the MRI that shows the AN, this just seems redundant.

Had that one too, plus warm water in the ear, and had my head jerked to follow eye movement. Had the spinning chair and the movable floor. I even had one not covered by insurance, about $400. About three hours altogether. The combination of tests may help them pinpoint the issue. If your MRI would have been negative, there are a number of other pathologies with overlapping symptoms. I think a lot of ENTs think AN late in the game.
Title: Re: Another new guy...
Post by: dwilliams35 on May 10, 2017, 08:46:04 pm
Heading in for that VNG test tomorrow; they went from calling it eng to VNG in the interim; same thing, but with goggles instead of electrodes to check your eye movements..  it's supposed to do some things better than the ENG.  maybe I'll also get to find out just what they're trying to figure out with this exercise...
Title: Re: Another new guy...
Post by: MarkS on May 11, 2017, 10:28:54 am
As I understand it, these things growly only very slowly - on the order of 1mm per year - so it seems unlikely a second MRI could accurately determine growth rate unless it's a LONG wait between MRIs.  Do I have this right, y'all?
Title: Re: Another new guy...
Post by: juliawilson on May 11, 2017, 04:37:25 pm
One thing I have learned is to ask questions---about everything. If you don't know why a test is being ordered, ask why and what it is supposed to do, and why it is necessary at this point. I also keep a list of questions to ask---written down so I don't forget!
Title: Re: Another new guy...
Post by: ANSydney on May 11, 2017, 07:53:47 pm
The reason for regular MRI's is that you want to catch rapid growth. For those that don't grow or grow very slowly, you can get a series of MRIs to see the long term trend. So, MRIs every 6 months, at least initially, will tell you if there is rapid growth or not. The series of MRIs will tell you if you have slow growth or no growth.

BTW, rapid growth and small size may warrant further MRIs to get a more complete picture.
Title: Re: Another new guy...
Post by: dwilliams35 on June 06, 2017, 09:51:46 am
It looks like I'm going back for round two:  the VNG was really no big deal the first time, at least not for me; sounds like some people have a hard time with it.  I've sent some messages to the doctor's office asking just what they're looking for, it's been fairly cryptic: just trying to "detect other issues":  I think the issue's pretty obvious, still.  The second round of prednisone helped, but once I got done with that I've still got some dizziness.  Now they want me to do ANOTHER VNG test next week when I go back..  IT's kind of a "whatever" at this point,  I'm going to have to be a bit more clear that I really want to know what they're trying to do with this;  the answers I've gotten to my questions so far are the standard stuff where the nurse is answering the questions and doesn't want to say anything specific; just saying that I can talk to the doctor when I come in.  I am pretty happy with the doctor besides this, so I don't want to get all sideways with him over this. It still seems either redundant or just "fishing":  I think it's pretty obvious where the dizziness has come from, just not sure what else they're trying to dig up here.
Title: Re: Another new guy...
Post by: EricC on June 06, 2017, 03:47:44 pm
As I understand it, these things grow only very slowly - on the order of 1mm per year - so it seems unlikely a second MRI could accurately determine growth rate unless it's a LONG wait between MRIs.  Do I have this right, y'all?

1mm a year is average.  So there are some that grow fast, some not at all.  Upper limit is closer to half cm a year.  In that case, cut it out.  Placement is also an issue.  Is that 1mm a year toward something important?  Facial paralysis goes way up after 10mm statistically.  Its often about where it is and how easy it will be to treat.
Title: Re: Another new guy...
Post by: ANSydney on June 06, 2017, 06:12:11 pm
MarkS, the reason for 6 monthly or yearly MRI, at least early on, is to catch rapid growth that is getting "too large". Two-thirds don't grow, its very rare to have any grow after 4 years from diagnosis and the average growth rate is about 1 mm/year. So, the frequent MRI are to look for the case of rapid growth.
Title: Re: Another new guy...
Post by: dwilliams35 on September 17, 2017, 03:15:55 pm
Got the results back from my 6-month "wait and see" MRI.    Went from 10 x 5 mm to 13 x 6 x 4mm.  ( different MRI facility than the first).   I'm supposed to go see the doctor on Tuesday.  Any thoughts?
Title: Re: Another new guy...
Post by: ANSydney on September 17, 2017, 06:08:26 pm
Go to a place that will independently look at both MRI images and get the same radiologist at the same time to tell you the size now and 6 months ago. 2 mm is considered measurement error.

Have you looked at the images yourself and compared. You can get a CD and they include a measurement tool.

Take a look at http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf . Figure 1 shows that in Denmark, 95% of tumors under 20 mm are observed. Table 1 shows that growth slows as the time goes on, roughly halving each year and that no growth was observed after 4 years of observation. I probably already asked how long you've had symptoms, but can I ask again. The cited paper is quite old, but Stangerup has not changed his stance over the year https://www.bhtinformatie.nl/pdf/ingrijpen.pdf .
 
If they were my reported measurements, I would go for another three MRI before declaring growth. I would also look at the CDs and study the growth.
Title: Re: Another new guy...
Post by: dwilliams35 on September 18, 2017, 09:42:40 am
The first symptoms that I really ever noticed were what led to the first MRI,  so it's been six months.  It does seem like they've gotten worse, and I've "picked up" some of the other symptoms that I didn't really have before (or at least never noticed until this was an issue):  facial numbness primarily..


Edit;  I also just happen to have gotten the cd in the mail today...

Title: Re: Another new guy...
Post by: dwilliams35 on September 19, 2017, 08:30:57 pm
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.

He said that the symptoms I have probably are there for good, so I'm thinking go ahead and kill this thing one way or another before it grows further and the symptoms progress.  After all the pluses and minuses were presented, I'm leaning hard toward the GK.  He referred me to another doctor who apparently deals with GK: I haven't yet set an appointment date but have a call into his office: hopefully that will happen tomorrow.

He didn't really push me toward one or the other, (despite being a surgeon himself)  but here's my reasoning:
1. the obvious outpatient treatment of GK vs. some significant downtime for surgery
2. He mentioned a slight possibility of recurrence with GK, as opposed to surgery, and that surgery on once-irradiated tissue being more complicated than just doing it the first time around.  I'm thinking that my odds are fairly good against that to begin with, and that surgery in several years may be more advanced than surgery now, and I may be in a better position to take a month or two off at the time.
3. side-effects and possible side-effects of major surgery vs. the GK: unless there's something I missed, I like my odds better with the GK.

Any thoughts on those developments?
Title: Re: Another new guy...
Post by: ANSydney on September 19, 2017, 09:16:58 pm
Have you had one radiologist compare the two MRI images at the same time. Different radiologists will measure it differently. Neurosurgeons just take the radiologists measurements without checking. I think this step is very important.

You can always get every set up for Gamma Knife to occur in 4 months time and just before the Gamma Knife go to an independent radiologist and get a third measurement.

Measure twice, cut once.
Title: Re: Another new guy...
Post by: dwilliams35 on October 17, 2017, 10:04:14 pm
Well, I’ve neglected posting in the last few weeks-I did have the MRI’s double checked, and I’m scheduled for a gamma knife a week from today.  The AN is in the bone “canal” leading from the ear into the skull, so the GK is apparently preferable, as it’d be a tough one to get to surgically.   Sounds like everybody’s in agreement that it is growing, and it sounds like it doesn’t have much room to grow in there without compressing the nerves further.  The recommendation was sooner rather than later as a result, and after hearing all the details I’m good with that.  Wish me luck.  The docs too.
Title: Re: Another new guy...
Post by: ANSydney on October 17, 2017, 10:19:16 pm
Glad you independently checked for growth. What were the size figures for the first and second MRI from the original radiologist and the independent radiologist? Did they match?: Was there much growth? I've probably already asked, but apart from hearing loss, what are your symptoms?
Title: Re: Another new guy...
Post by: dwilliams35 on October 17, 2017, 11:24:10 pm
They agreed on the 3mm growth between the two, 10mm to 13mm.  Dizziness, Tinnitus, and some hearing issues.  (I was already wearing hearing aids before the AN). I was thinking I had some facial numbness, but the Dr. a couple of weeks ago said he didn’t think that was a result of the AN at this point.  That may have been just the power of suggestion.  The dizziness has worsened since this all started, for sure.  The more I learn about my case, the more I really just think that apparent location is the real issue here, it simply doesn’t have room to grow without causing me some real problems. 
Title: Re: Another new guy...
Post by: ANSydney on October 17, 2017, 11:34:34 pm
Did the second radiologist see the first radiologist's results, or where they independlty arrived at meassuements or conclusions. There's a video by Charlie Teo where he describe being castigated by the medical governing body for giving a second opinion that was contrary to the the first. https://www.youtube.com/watch?v=ZeC4dHVMCfU
Title: Re: Another new guy...
Post by: dwilliams35 on October 17, 2017, 11:44:50 pm
I honestly couldn’t tell you whether they were aware of the other reports or not.

  I did spend several hours poring over the two myself, measuring, etc, and it really does just jump out at you, I am getting the same measurements they did on both of them as well, for what a junior assistant amateur radiologist’s opinion is worth.. 
Title: Re: Another new guy...
Post by: ANSydney on October 17, 2017, 11:53:28 pm
The fact that you also did the measurement is great. You now now what is going on. When's your next MRI due? This will give you not only the rate of growth but the change in the rate. Strangerup ( http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf ) found that no tumor grows after four years from diagnosis (FIG. 3) and that they slow down with time (TABLE 1).

May be worth talking to a vestibular therapist to see what they think about dizziness. Nothing can fix tinnitus and hearing loss is only accelerated by intervention (plenty of references to articles in this forum).
Title: Re: Another new guy...
Post by: alabamajane on October 18, 2017, 06:30:04 am
Hi,
It’s good to hear you have made a decision on GK. I hope it goes well and that you get relief from the dizziness. 

You are right that the location of the tumor is as important as the size and or growth rate. Also one’s  symptoms and their impact on your daily life are also an important consideration.

If you and your doctor are in agreement that this is a good path forward,, I’m sure you will have good results.

Best wishes and peace to you,,
Jane
Title: Re: Another new guy...
Post by: ANSydney on October 18, 2017, 04:31:32 pm
dwilliams,

It appears that your main concern i dizziness. What odds does your radiosurgeon give for improved, unchanged and worse dizziness following radiosurgery? What about if you did nothing.

(When it comes to tinnitus there's nothing that can be done and hearing loss is only accelerated by active treatment.)

Not sure if you got as chance to talk to a vestibular therapist.
Title: Re: Another new guy...
Post by: dwilliams35 on October 18, 2017, 08:45:55 pm
Really, my main concern is my hearing, I can deal with the dizziness better than I can handle losing an ear.  We’ve pretty much settled that this is the best course, and given the tumor location waiting it out isn’t really an option, both in my view and the doctors’.  The basic prognosis is that whatever’s done is done as far as damage to the hearing, and while the brain could make some new connections on its own, that’s not a given.  They had a better outlook for the dizziness going away, at least partially.  I believe all of that hinges on it being in that canal- it’s simply got nowhere to go and any growth is going to be putting pressure on the nerves; and it’s already shown a propensity for growth well beyond the margin for error.  From the way I understand it, if it was further down the nerves and outside the canal the program would be much different.

I pretty much asked any and every question I could think of, including bringing up the “growth slowing” studies;  the answers I got all led me to the same conclusion, that further sitting and waiting presents higher risks than doing this procedure now.  I’m good with the decision, am comfortable that the doctors have done everything they could to give me all the information needed to make that call, and I’m looking forward to making the next step here.
Title: Re: Another new guy...
Post by: ANSydney on October 18, 2017, 10:34:02 pm
If you're main concern is hearing, you have you read: https://www.bhtinformatie.nl/pdf/ingrijpen.pdf . There are many more articles that are referenced here regarding hearing preservation.

Once a tumor fills the canal, it grows into the CPA.
Title: Re: Another new guy...
Post by: dwilliams35 on October 20, 2017, 01:57:51 pm
Hi,
It’s good to hear you have made a decision on GK. I hope it goes well and that you get relief from the dizziness. 

You are right that the location of the tumor is as important as the size and or growth rate. Also one’s  symptoms and their impact on your daily life are also an important consideration.

If you and your doctor are in agreement that this is a good path forward,, I’m sure you will have good results.

Best wishes and peace to you,,
Jane
Thank you, Jane:  The doctor flat-out said that wait and see was not a good option here, and presented a very good case for it: I'm confident we're doing the right thing here.  I just hope it goes as well as possible.

Title: Re: Another new guy...
Post by: ANSydney on October 21, 2017, 01:38:24 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.
Title: Re: Another new guy...
Post by: dwilliams35 on October 21, 2017, 03:03:55 pm
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.
Title: Re: Another new guy...
Post by: alabamajane on October 22, 2017, 04:31:51 pm
 >:D,,, cute last line,,, made me laugh,,

Being comfortable with your decision is half the battle right there.  It usually brings a sense of peace to one’s self,,

Jane
Title: Re: Another new guy...
Post by: rupert on October 22, 2017, 06:35:12 pm
Exactly. :)
Title: Re: Another new guy...
Post by: dwilliams35 on October 24, 2017, 05:20:33 pm
Well, I had my GK today: everything still seems to be operational afterwards.  I can’t really tell that I’ve lost any hearing, balance is about the same, etc..  The doctor (same one as last visit, not the two new ones from today) seemed to indicate that it just presented itself really well for this treatment with avoiding side effects..   I’m scheduled to be going back to him for follow up in 6 weeks.

I am, however, going to scratch that headframe installation off of my “things to do for fun” list.
Title: Re: Another new guy...
Post by: dwilliams35 on October 29, 2017, 11:47:05 am
Well, just for an update,  5 days post-GK..  everything still doing well,  I happened to be able to get in to my audiologist to reprogram/replace/whatever my hearing aids (neurosurgeon said go ahead and go ASAP rather than wait a while). So, I’m sportin’ a brand new set, I like them so far.  My right ear WAS my good ear, not anymore; the AN apparently fixed that little injustice for me.  I’m still in good shape for “correctable hearing”, however. 

Have just a twinge of pain on the pin sites every now and again, I would imagine that’s to be expected, given how severely they beat on me to get them in there... :).

The main thing I’ve noticed;  I’ve honestly felt better over the last 4 days than I have since this little episode started back 8 months ago or whatever it was.  I’m sure that’s just a release of stress and no real physiological issue, but I’ve really felt great by comparison, with the better outlook on life that comes with it.   Just getting something DONE that would allow me to move on to the next stage of this journey, wherever it takes me, has been utterly liberating.  I know I’m just into a new “wait and see”, anticipating side effects, multiple MRI’s in order to detect any hint of regrowth, etc, etc,;  I really am good with that, much more so than just “well, how big is it up to this week, and how much more is it going to screw up” that I was dealing with before.

I know these are all different, and “my” avenue through this isn’t the proper one for everybody.  For me, however, I’m glad I made the call I did, and I’m positively dripping with optimism about my post-GK life.  Laugh at my giddy naïveté all you want, I really don’t care right now. 

Title: Re: Another new guy...
Post by: alabamajane on October 30, 2017, 01:26:03 pm
GOOD for you! I’m so glad you made a decision and feel so elated about it,, I’m glad it has made you feel so liberated also. As you say, everyone’s journey and results are different , but for so many just making a proactive decision makes them feel in control and so much better. Sounds like you made the best decision for you and that is ALL that matters really.

I hope you continue to improve and have dealt with your AN for the last time.  But I know if you do have to deal with it again in the future,, you will do so just as optimistically as this time  ;D

Peace and well wishes,,,
Jane
Title: Re: Another new guy...
Post by: dwilliams35 on November 29, 2017, 02:25:19 pm
Well, one month plus in:  balance actually seems to be slowly improving, (which kind of surprises me)  hearing is stable, everything else seems to be going along well.   Follow up visit with the doctor next Thursday, I'm sure he'll set a date for a followup MRI then.   So far so good.
Title: Re: Another new guy...
Post by: Blw on January 24, 2018, 10:55:28 pm
I think you have about 12-18 months of fluctuation of the tumor after treatment so don't be surprised if you feel bad some days. In many cases the tumor will swell due to damage and push on stuff, but it settles down and things will get back to normal. Unfortunately hearing can be fried, but that depends on dose. How long were you in for? Those pin sites can hurt for months, so don't be surprised. Mine apparently were next to a nerve so the local did nothing and it hurt like a mother for the hours that I waited. When I was in, I had 10 songs I thing, so I counted down. I decided I was coming out one way or another after the last some because the pain was so bad. When they took that frame off, the relief was when they finally set a broken bone. 
Title: Re: Another new guy...
Post by: dwilliams35 on March 20, 2018, 02:10:22 pm
Sorry I didn’t get back to this for a couple of months, I guess that’s the nature of this forum: post treatment, you’re just not digging for info as hard. 

I was in for 39 minutes.  My biggest problem was the music:  they asked what I wanted to listen to, I just said “just some country”.  So be it.  About 20 minutes in, already having settled down from the initial semi-panic attack about “is this where I lose the ear???”, I was laying there watching the tiny movements of the machine and listening to George Strait telling me where all his exes lived.  Then, a tone, and zilch: couldn’t hear the music, nothing.  The panic was flooding back in like a tsunami, me thinking that the ear just got zapped, and took the other one with it.  Then a click, and the music came back.  They were playing the music off somebody’s phone connected to their music system, and they had gotten a text message notification tone.  If I wasn’t bolted in, all I could think of was getting up and yelling “Don’t you EVER do that to me again!!!”...

Anyway, going back for my 6 month MRI in two weeks.  All things considered, I can’t complain so far: I still get occasional dizzy spells, and the hearing has some short-lived spurts of seeming just somewhat deader than normal, but I really haven’t had any symptom that hasn’t improved since the GK.   I know I’m still right at the start of this, and won’t be shocked if I get something that pops up, but for now things are good.

The doc told me in my first follow up that he wishes he didn’t have to do that first follow up mri so soon, that people see growth as the tumor dies and swells, and freak out as a result: I’m ready for that if that’s what shows up, at least I’ve got my mind wrapped around that part pretty well.

Title: Re: Another new guy...
Post by: rupert 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.
Title: Re: Another new guy...
Post by: dwilliams35 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...”
Title: Re: Another new guy...
Post by: dwilliams35 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.
Title: Re: Another new guy...
Post by: golfguy49 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.
Title: Re: Another new guy...
Post by: dwilliams35 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.
Title: Re: Another new guy...
Post by: dwilliams35 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..
Title: Re: Another new guy...
Post by: dwilliams35 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.
Title: Re: Another new guy...
Post by: dwilliams35 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..
Title: Re: Another new guy...
Post by: golfguy49 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.
Title: Re: Another new guy...
Post by: PurrfectHappiness 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.  :)
Title: Re: Another new guy...
Post by: dwilliams35 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.   
Title: Re: Another new guy...
Post by: golfguy49 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.
Title: Re: Another new guy...
Post by: dwilliams35 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.
Title: Re: Another new guy...
Post by: dwilliams35 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..
Title: Re: Another new guy...
Post by: dwilliams35 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..



Title: Re: Another new guy...
Post by: waypoint on January 15, 2020, 02:51:42 pm
2Cool  ;)  Wishing you the best.  Tinnitus never goes away. Ever.
I was doing these MRI every 6 months, and then 1/yr. I think it was 5-7 yrs before was cleared my Dr. to not come back.