Author Topic: just been diagnosed  (Read 2784 times)

smiffy

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just been diagnosed
« on: December 03, 2018, 03:44:09 am »
hello from the UK i have just been diagnosed with a 1.5cm AN. to be honest still very overwhelmed and since i know what is cuasing my deafness and tinitus after being able to block the latter out it now seems louder than ever. its nice to find this forum and a community of others in the same boat good luck to all.

ANSydney

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Re: just been diagnosed
« Reply #1 on: December 03, 2018, 04:08:11 pm »
Deafness and tinnitus are not improved by intervention. At 1.5cm I would say there is no rush to do anything. Have you considered a followup MRI in 6 months? Have you taken a look at your MRI CD?

smiffy

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Re: just been diagnosed
« Reply #2 on: December 03, 2018, 04:21:50 pm »
yes got another MRI in 6 months it was going deaf in my right ear is how i found out  i have a AN. i have been fitted with a hearing aid and that makes a huge difference. basically they said just got to see how fast it is growing before anything can be decided.

MT

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  • Hoping to recover from facial palsy...
Re: just been diagnosed
« Reply #3 on: December 03, 2018, 07:50:14 pm »
Hi,

I would beg to differ and advice considering cyber-knife to toast the tumor because if AN grows beyond certain size, cyberknife may no long stay on your options list. An invasive surgery will become a compulsion.

Aftermath of surgery is not so good feeling IMO. I had mild hearing loss which is now fully deaf, facial palsy (which will take its own time to recover) and inability to close eye-lid (and blink it as a normal function) is a major pain in the butt. Now I am driving around town like "Danger Mouse" with one eye patched up. I only wish if my ENTs had told me to see neurologist 4 years ago when I went to them (3 different ENTs) instead of just telling me "it's just wax, nothing to worry"...

Discuss all the options you have with your neurologist and pros/cons of early/delayed treatment. In the end, it's your life and your decision.

Good luck.
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

ANSydney

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Re: just been diagnosed
« Reply #4 on: December 03, 2018, 08:22:42 pm »
MT, was the hearing loss and facial palsy pre or post surgery?

MT

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Re: just been diagnosed
« Reply #5 on: December 04, 2018, 11:15:48 am »
I had only mild level of loss as per audiography tests (about 20%-25% loss in my layman classification). I could still hear phone calls on affected side.

Facial palsy is post-op, I had no other symptoms. You may read my story in link given in my signatures.
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829

janerioux

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Re: just been diagnosed
« Reply #6 on: December 10, 2018, 08:57:19 pm »
I was diagnosed last February and it still is overwhelming.  Just keep reading and the webinars on this site are helpful.  I am looking for a second opinion and it is not easy to decide where to go.   
Jane

MT

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Re: just been diagnosed
« Reply #7 on: December 11, 2018, 01:04:07 pm »
Dear Jane,

While forums or webinars are good to create self-awareness but are in NO way equivalent to medical advice by a professional. If you are looking for opinion, better seek another neurosurgeon. We only share our experiences to help each other and stay motivated.

Remember that AN cases are as unique as our DNA. Good luck!
No symptoms except mild hearing loss
RS procedure on 26-Oct-18 (2.7 x 2.5 cm AN)
Deafness and facial palsy on right side
26-Feb-19 MRI showed 0.8 cm of leftover tumor
Slight movement on ~7-Jul-19 but mostly paralyzed

Full story:
https://www.anausa.org/smf/index.php?topic=24255.msg97977829