Author Topic: Another new guy...  (Read 5672 times)

alabamajane

  • Hero Member
  • *****
  • Posts: 583
Re: Another new guy...
« Reply #30 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
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

  • Hero Member
  • *****
  • Posts: 582
Re: Another new guy...
« Reply #31 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.

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #32 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.

ANSydney

  • Hero Member
  • *****
  • Posts: 582
Re: Another new guy...
« Reply #33 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.

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #34 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.


ANSydney

  • Hero Member
  • *****
  • Posts: 582
Re: Another new guy...
« Reply #35 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.

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #36 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.

alabamajane

  • Hero Member
  • *****
  • Posts: 583
Re: Another new guy...
« Reply #37 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
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

rupert

  • Sr. Member
  • ****
  • Posts: 334
Re: Another new guy...
« Reply #38 on: October 22, 2017, 06:35:12 pm »
Exactly. :)

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #39 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.

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #40 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. 

« Last Edit: October 29, 2017, 12:02:27 pm by dwilliams35 »

alabamajane

  • Hero Member
  • *****
  • Posts: 583
Re: Another new guy...
« Reply #41 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
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #42 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.

Blw

  • Full Member
  • ***
  • Posts: 159
Re: Another new guy...
« Reply #43 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. 

dwilliams35

  • New Member
  • *
  • Posts: 29
Re: Another new guy...
« Reply #44 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.

« Last Edit: March 20, 2018, 03:29:10 pm by dwilliams35 »

 


anything
anything