Author Topic: AN Specialists in Sydney AU  (Read 10619 times)

donjehle

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Re: AN Specialists in Sydney AU
« Reply #15 on: March 24, 2022, 06:55:54 am »
Excellent post, DodgeAU, describing your experience for those of us who are waiting to have GK and are wondering what it is like.

I'm so thankful that the procedure went well.  I hope the hot Vietnamese food tasted as good!

I am anxious to hear how you feel for the next few days.

Thanks again for posting your experience!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #16 on: March 25, 2022, 10:54:36 pm »
Thanks Don, hope you are doing well.

Loved the Vietnamese food especially in Melbourne!

Had a long sleep after the procedure probably due to the Lorazepam they gave to me 😊

Woke up with mild head ache, feels swollen on the puncture sites in my head so had to take some Tylenol for the first day after the GK.

Today is the second day and no more head ache but still feeling sore on the puncture sites though the wound starts to dry and heal. I use a neck support travel pillow when sleeping as this avoid contact of puncture sites which is pain when touching the pillow or bed head.

There is some numbing in some parts of my scalp and some tightness in my forehead - which are common symptoms after head frame procedures. From the hospital booklet, these symptoms should last within 1-2 weeks.

My balance is fine and just trying to go for walk for half an hour in the morning.

When I left the hospital they put some metal staples in one of the puncture sites to prevent infection.  Now I feel it’s healing and I have to go to my local doctor in the next few days to remove them.

Now we are flying back to Sydney after 4 days stay in lovely Melbourne 😍

I’m looking forward to check the progress in the next 6 months and will going to update you all.


Regards
« Last Edit: March 25, 2022, 11:07:21 pm by DodgeAU »
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

donjehle

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Re: AN Specialists in Sydney AU
« Reply #17 on: March 26, 2022, 12:04:52 pm »
Thank you for that wonderful update!  It really helps those of us who have not done the GK yet know what we might expect (realizing, of course, that everyone's journey can be different.  I will be looking forward to your next update!

Let me ask one question: How soon do you think you could have driven an automobile after your GK?  I could possibly be driving, instead of flying, after mine, and I don't know how long to plan to stay in the hotel, and how soon I can plan to drive normally?

Thanks again, DodgeAU!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #18 on: March 27, 2022, 04:57:43 pm »
I was able to drive after 53 hrs but only short distance (less than 40km / 25 miles) from airport to home (I left my car in airport car park). If you have someone to drive your car that would be much better.

I would not recommend driving long distance after GK, best to rest for few days (2-5 days) or until the side effects have slowed down or completely gone

How far do you plan to drive after the procedure?
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

donjehle

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Re: AN Specialists in Sydney AU
« Reply #19 on: March 28, 2022, 03:20:34 pm »
Thank you!  You just convinced me to rest for a few days.  I was planning on driving 1,000 miles or 1,600 km from where I had planned to have my GK to my home.  But now I realize I will either need to rest a while in a hotel or fly back.

Thanks for the reality check!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #20 on: October 10, 2022, 11:25:10 pm »
Hi everyone, hope all of you are doing well!

I have an update few months post GK procedure.

2nd month: mild side effects of the GK have disappeared, but left 2 small scars on my head. I barely noticed them only when I go for a skin fade haircut :)

5th month: mild facial spasms on the AN side, max 3 times a day for 5 secs each lasted for about couple of weeks. I was told by Oncologist that it was typical result of the AN due to inflammation. They gave me steroid but did not take them as it was very mild.

6th month: MRI showed 2mm reduction in size (no growth) which is good news!! Thank God.

Life goes on. Next MRI is after 1 year (September 2023).

So far no other symptoms aside from pre-GK ones which are mild tinnitus and total hearing loss on the left (AN) side.
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

SP

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Re: AN Specialists in Sydney AU
« Reply #21 on: October 11, 2022, 03:07:22 am »
Hi DodgeAU,

So glad to hear that you are doing well!
wishing you the best that life has to offer as you continue on your healing journey

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

DodgeAU

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Re: AN Specialists in Sydney AU
« Reply #22 on: October 12, 2023, 02:39:35 am »
Hi Stella

Hope you are well. Just want to give an update on my side post GK treatment. I am happy to say that my facial spams on the AN side has totally disappeared last June 2023. Now I understand that the facial spasms were caused by swelling of the AN post GK as side effects.

The latest MRI in September shows shrinkage of the AN by about 2-3mm. Will be continuing monitoring yearly for the next 4 years.  Looking forward to the next phase of my healing journey.
« Last Edit: October 13, 2023, 01:49:58 am by DodgeAU »
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

donjehle

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Re: AN Specialists in Sydney AU
« Reply #23 on: October 15, 2023, 10:57:04 am »
Thank you for that great update!

Blessings upon your continued recovery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.