Author Topic: Newly Diagnosed  (Read 4477 times)

Curly Jo

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Newly Diagnosed
« on: March 19, 2008, 11:59:02 am »
I was initially thought to have Bell's Palsy since my initial symptom was facial paralysis.  The MRI on January 8, 2008 showed a small acoustic neuroma so my journey began.  I was referred to an ENT who ordered another MRI that had higher resolution to make sure that the neuroma was indeed on the acoustic nerve and not the facial nerve.  I do not have any hearing loss and only the facial droop.  The second MRI on Feb 21, 2008 confirmed that the neuroma is on the vestibular portion which explains some of the dizziness and touches the facial nerve.  Since it is small, he advised to wait and watch.  I will be rechecked in August and if I have any growth, he wants to remove the tumor so that my hearing might be saved as well as reduce the damage to the facial nerve. 

I want to thank you all for this wonderful site.  This site has provided me with a lot of valuable information and comfort.  I am someone who has worked in the medical field all of my life and the last eight years in Oncology.  My bright note is knowing this is not malignant.

I do know that with the research, it seems strange to me that my presenting symptom was the facial paralysis with such a small tumor.  My tumor is only 3mm at this stage.  Anyway, again thanks so much for the support this site has offered to me.

ppearl214

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Re: Newly Diagnosed
« Reply #1 on: March 19, 2008, 12:07:04 pm »
(LOVE the screennic!) :)

Hi CurlyJo and welcome. Good to have you hear and thrilled the site is providing you with helpful info.    Looking forward to your further partiicipation here... and if you need help with the site or with answers during your "journey", just let us know... always glad to help.

Again, welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Newly Diagnosed
« Reply #2 on: March 19, 2008, 01:55:04 pm »
Hello, Curly Jo and welcome -

I'm so glad you found this forum - because like you say, it's a great place.  If you haven't already, I'd like to suggest that you contact the ANA and ask them for some literature - I found it to be very valuable.

It does sound strange that you would have facial paralysis from such a small tumor.  It's also interesting to me that your hearing hasn't been affected but your face has.  I've never heard of that before, but then again I learn something new here every day.

Your treatment plan sounds like a good one. 

Wishing you the best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Curly Jo

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Re: Newly Diagnosed
« Reply #3 on: March 19, 2008, 02:22:54 pm »
Thanks to you both for your reply.  I have already received information from the ANA forum and I have also made a donation.  The information from the ANA has been helpful and I am sure that I will be doing additional research if and when I would need surgery.

leapyrtwins

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Re: Newly Diagnosed
« Reply #4 on: March 19, 2008, 04:02:44 pm »
Curly Jo -

glad you got the ANA info and thanks for making a donation - that's what makes the ANA possible.  I try to give what I can, when I can, but I always wish it could be more.  Oh, well, one day when I win the lottery, I'll give the ANA a few million  ;D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Omaschwannoma

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Re: Newly Diagnosed
« Reply #5 on: March 20, 2008, 09:43:40 am »
Hi Curly Jo,

My tumor was relatively small, 1.5 cm, located on the vestibular nerve.  I too had facial issues for about 2 years.  Excessive mouth watering, aching feeling on left side when I smiled that progressed to weakness.  I noticed the difference in symmetry on my face when I look back at pics, albeit very slight.  Also, I was biting my tongue, lip and inside of my mouth.  I've said this before and I'll repeat, "Size doesn't matter."  It's the location on the nerve that seems to cause problems for some, but not others.  The protocol for me was "wait and watch" but I was not happy with this as I knew my facial nerve had been compromised for a few years and made the appointment to have surgery three months from talking with my neurotologist.  At the time of surgery, other signs began showing and most notable was leg weakness, poor balance, extreme nausea with vomiting.  On the day before surgery after hearing about what was new, he told me that the time had come and glad I set the appointment when I did.  So, at 1.5 cm some will wonder why my facial nerve was involved, and glad I didn't "wait and watch" any longer.  As it was, my tumor destroyed alot of my bone before poking it's head out the canal.  Had lots of fat packing and waxing to seal off the large area.  Don't wonder any longer why you experience this and not others as it's been stated on this site before our AN journies are unique, and difficult to put us (our symptoms) in a box and tie it up with a bow. 

It is now over three years since my surgery having had to go back in recently for a labyrinthectomy, and I'm doing GREAT.  My facial nerve is intact, with only a slight eye twitching. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Curly Jo

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Re: Newly Diagnosed
« Reply #6 on: April 02, 2008, 03:50:43 pm »
Hello,

Today, I experienced what it's like to be off balance.  I almost walked into a wall at work.  I have had the dizziness but never the balance issue.  At my last visit, I was told to watch for changes that may indicate growth.  My daughter is concerned but I am not wanting to overreact.  My follow up visit is scheduled for August 21st.  I know many of you deal with balance issues so I know it's not an uncommon symptom.  For now, I am going to just see if I continue to see changes.  Due to the location of my AN, I know that I will see issues related to dizziness and balance along with the increase of my facial drooping.  I am glad for this site and appreciate seeing how everyone has dealt with and are dealing with their ANs. 

Julie