Author Topic: Newly Diagnosed - Sydney Australia  (Read 599 times)

Eardrops

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Newly Diagnosed - Sydney Australia
« on: April 25, 2020, 08:25:16 pm »
Hi Folks,
Its been wonderful finding ANA and this forum since my diagnosis earlier this week.  Busy reading post at cracking speed.

A bit of background.  4yrs ago I noticed my hearing was getting worse and went for the usual test.  Due to my right ear being worse off they recommend I see an ENT and get an MRI.  Well...I did'nt do that, nor did I follow up with hearing aid or anything for that matter  and just got on with things.  Fast forward and hearing a real issue in open plan office, meetings etc, so I went for another hearing test and followed through with first ENT visit, followed by MRI in February.  Then due to covid lockdown cancelled ENT followup thinking its not urgent etc.  The ENT office rang me insisting a telehealth session on Tuesday and he gave me the news 19mm x 17mm x 16mm AN, and continued to explain slow growth rate etc, however he is referring to another ENT Dr. Jonathan Kong who is more specialised in this area.  I will be seeing him in two weeks time. 

Meanwhile, I ask to see MRI report.  In hindsight probably not a good idea as I have Dr. Googled everything in report and looks grim!!!

Like a lot of folks this news has come at a terrible time in my life.  I am 58yrs old and do contract IT work, most of my contracts are 6months to a year.  I was due to start a new contract in mid march but that was axed due to covid.  As anyone my age would know you sometimes have to work harder to sell yourself in job market.   With the huge unemployment going on im really scared and now the AN diag on top of it.  I am also a single mother with a daughter still at home in her final year of high school, so my ability to work is paramount.  My extended family all live in the US.  Also my brother in states has Covid, but doing fine thankfully.  Needless to say I am hugely stressed with it all.  Apologies if I sound to woo-is-me.  Finding this forum and knowing I am not alone has been my only recent joy.

Would greatly appreciate any feedback in regards to your experience with the following;

1) From what I can gather in forum and other info it appears the size of 'grapey' (its name) im on that fine border of wait and watch/knife thing.  How did you deal with this phase?  Did the extra growth due to GK cause temporary additional problems?  Ive come to terms with my hearing lose.  What concerns me is balance and facial issues and the capacity to continue work.

2) How do you deal with stress of diag?  Im normally a tuff cookie and not a hypochondriac type (as witnessed by reluctance to act on MRI 4yrs ago) and usually resilient nature  with life hurdles, but this has floored me.  I have made an appointment with psychologist for later this week.

3) Should I drink bleach?  ::) also not helpful reading US news devastation and Trump erratic response with so much...  I was born and raised in states, so its close to my heart to see the idiot/bully attempting lead.  Obviously nothing to do with AN, but does add stress factors to those dealing with ANY health issue amongst  all the uncertainty his leadership brings.

4) Australians (Americans our health care system works differently, but feel free to inject thoughts..)  What has been your experience with health professionals?  I gather multiple opinions is advised how have you navigated this?  Any recommendations on doctors?  GK treatment facilities?

Thanks heaps for input and again thankful I found this forum.  I wish you all a great journey.





22/04/20 Diagnosed 19mm x 17mm x 16m right ear, 80%hearing gone, mild tinnitus, mild balance issues

Greece Lover

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Re: Newly Diagnosed - Sydney Australia
« Reply #1 on: April 29, 2020, 08:13:17 am »
so sorry to hear of your diagnosis. I'll offer my thoughts on your questions:
1. Waiting can be very difficult. Some people prefer and choose W&W, while others "want it out" right away. I chose surgery, and I'm glad I did. But one of the weird things about these tumors is that you have options. But you also have some time. Take the time to get professional opinions, including their center's percentages on various outcomes.
2. One of the things often neglected is a patient's mental health through all of this. I struggled, and still struggle, with anxiety. So that's to be expected and don't ignore it. I found a therapist to be very helpful.
3. DON'T DRINK BLEACH. I agree, it would be helpful to anxiety levels if we had better federal leadership.
4. I was going to go to Adelaide for a conference this summer, but its canceled, so I'll have to look forward to my first trip down under for a while yet.

Good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Eardrops

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Re: Newly Diagnosed - Sydney Australia
« Reply #2 on: May 07, 2020, 01:48:12 am »
Hi Greece Lover,
Thank you so much for taking the time to respond in somewhat hyper state in being newly diagnosed.
I idid see another specialist surgeon yesterday that took the time to explain my medium size 'grapey' , position and options.  Its 'watch and wait till August scan for now.   Which is somewhat stressful. 
Most my size doing GK so was a bit confused initially.  Obviously placement, age, symtoms determined decisions..   Not keen on surgery but would prefer to stop growth if grows more as feel my age not idea for surgery.

Thanks again for your support in comments.
22/04/20 Diagnosed 19mm x 17mm x 16m right ear, 80%hearing gone, mild tinnitus, mild balance issues

Greece Lover

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Re: Newly Diagnosed - Sydney Australia
« Reply #3 on: May 07, 2020, 08:47:47 am »
Glad to hear you've got some good opinions. Sorry you have to wait, but we're all waiting for something or another at this point, it seems.

Good luck and let us know what happens. Feel free to DM me if you have any other questions.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

dwilliams35

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Re: Newly Diagnosed - Sydney Australia
« Reply #4 on: May 13, 2020, 09:48:41 am »
For starters, there's not much you can do about the anxiety.  It's going to take you a lot of different places.   You're also going to hear a heck of a lot of different directions you can take, from holistic remedies to "just watch it and it'll go away" to "WHY AREN'T YOU ON THE WAY TO THE HOSPITAL!!!?!?!?!?"  Ignore them all.  People are going to second-guess your doctors, as well as your own decisions, as people will naturally do when it doesn't match their opinion on the matter..  Second opinions, etc. are great, but you really have to remember that there's different approaches for this, and any given doctor is likely to have their own favorite, their own opinion, etc.:  remember that favorite is probably what that doctor would be best at to begin with, so you've got to figure that into the approach.

Secondly,  remember that everything's all about worst case scenario here.  They AREN'T going to tell you that everything's going to be okay, then go in, find minor complications, and you get left with the impression that they screwed things up and made it worse.  They're going to give you something on the far end of that "outcome" scale, so they look like a hero when the actual outcome is much better.  Just remember that before you let any explained possibilities get you down..

I ended up doing a GK;  the next-to-last doctor in this process said it was basically 50/50, GK vs surgery, and whichever I wanted to choose.  I picked the GK for the reduced downtime involved in that vs. the "regular" surgery, which sent me to his colleague in this process..  That last doctor ended up explaining that an actual surgery would be really tough, and GK was definitely the way to go.  We did it, and I seem to be much better off than pretty much any of those worst-case scenarios that they all laid out for me beforehand.  Still have some hearing, balance problems ended up all but disappearing, and tinnitus seems to be my major lingering effect of the whole thing. 

MRI report: I got a lot more out of actually looking at the MRI myself than I did any of the reports..  again, nobody in the medical field wants to leave the ball short of the green. 

Stress of diagnosis: I guess we all go through that.  I just kept on going and did what I could to just keep my mind on something else.  Every so often I'd crawl in a hole about it, but just staying busy was my main method for keeping it from being anywhere near debilitating.

Bleach is okay in moderation.  remember, we chlorinate water.

Finally, and I'm sure I'll get some people here bent out of shape at me,  worry more about you and what you've got going on than you are about what doctor you select.  There's doctors all over the world that do this, and successfully so.  There's some that get a lot of "press" in the AN community, but there's plenty of others that are quite capable of handling it.  it's not like it's brain surgery.. oh.  never mind. it is.  My point is that a lot of people stress themselves out more trying to convince themselves that their doctor is the #1 AN doctor in the universe than they do about just how you can get this taken care of and fit it into your life: there's a lot of guys scattered all over the world that are pretty good at this, and the chances are really, really slim that whoever you  may end up with is learning how to do a Middle Fossa approach on Youtube the night before the surgery.. 

If there was every any encompassing advice I'd give after my own experience to try to make this process go better, smoother, more quickly, and less painful and stressful,  it's just to chill the heck out.  Have a beer or six.  Go play some golf.  You might fall over during a swing as a result of balance issues, but you just have to laugh at it rather than freaking out about it.  It's going to work out as well as it is going to no matter what you do, barring something really stupid and off the wall in your decision making.  Just listen to the doctors, your own gut feelings, and apply them to your life in general to make your decisions.

If nothing else, remember that you're going to be the foremost expert in just where the best and most comfortable MRI machines are in your area before this is over..

« Last Edit: May 13, 2020, 10:01:05 am by dwilliams35 »
Diagnosed 2-2017,  GK 10-2017.

Eardrops

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Re: Newly Diagnosed - Sydney Australia
« Reply #5 on: May 30, 2020, 08:21:13 pm »
Hi dwilliams35,

Thanks for feedback.   Ive calmed down heaps now and fine with the watch & wait scenario advised by surgeon.  August for next MRI and thats not so far away.  Being fitted with hearing aid on Tuesday.

 ::) ::) yes I realise often on ANY medical forums you get the extreme comments at times, which can be hysterical to read!   

If it does grow as im on that border now, hopefully just do GK as not keen on surgery at all!  How did your GK process go?

Kind regards,

Eardrops
22/04/20 Diagnosed 19mm x 17mm x 16m right ear, 80%hearing gone, mild tinnitus, mild balance issues

dwilliams35

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Re: Newly Diagnosed - Sydney Australia
« Reply #6 on: May 31, 2020, 06:57:01 am »
Hi dwilliams35,

Thanks for feedback.   Ive calmed down heaps now and fine with the watch & wait scenario advised by surgeon.  August for next MRI and thats not so far away.  Being fitted with hearing aid on Tuesday.

 ::) ::) yes I realise often on ANY medical forums you get the extreme comments at times, which can be hysterical to read!   

If it does grow as im on that border now, hopefully just do GK as not keen on surgery at all!  How did your GK process go?

Kind regards,

Eardrops
. In hindsight, pretty well.  When they were putting the headframe on, however, I can firmly attest that it was miserable.   Probably the worst pain in my life, probably exacerbated by the nasty side effects of the fentanyl they were giving me at the time.  I really can’t believe people use that stuff for fun.  I got through it, however, and as I look back now at it as a whole package, that was probably the most attentive, dedicated, and  professional group of medical personnel I’ve ever encountered.  I was “back in business” in a day and a half or so, mostly to let the effects of said fentanyl wear off, and it’s all been downhill improvement from there.   I won’t even hold what I call the “text message incident” against them.



(I was about 20 minutes into a 39 minute GK procedure, after having gone months hearing about my upcoming potential hearing loss.  Listening to music on the earbuds they had dutifully installed, and George Strait was musically telling me where all his exes lived.  Everything going along well, then a loud tone and everything went silent.  A few seconds of unadulterated panic, wondering if this was really it, I lost 100% of the hearing in my AN ear, and it took the other one along with it.   Then the music came back on and all was well.  Turns out they had been playing the music off somebody’s phone plugged into the system, and they got a text message during the procedure.   The notification beep was obviously the sign of doom for my hearing...  I’m sure I made a comical sight, sitting there with the headframe still pinned to my skull, telling them “don’t you EVER do that to me again”....  we all got a good laugh out of it...)
Diagnosed 2-2017,  GK 10-2017.

PaulW

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Re: Newly Diagnosed - Sydney Australia
« Reply #7 on: June 18, 2020, 03:54:11 pm »
GK is not a death sentence for your hearing.
I had radiation CK in Munich 10 Years ago and I still have my hearing. I live in Australia and there was no GK or CK Machine at the time.
I can still use my mobile without a hearing aid.
In fact I have not lost any hearing at low frequencies, but highs yes...
Wearing a hearing aid and I rarely notice the deficit.
Many say I have been lucky, but I went from diagnosis to CK in 3 weeks
There is some evidence that having radiation sooner, younger with a smaller tumour and using a machine that reduces cochlear dose to a minimum may give you a better chance of saving your hearing.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

 


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