Author Topic: Extremly worried about NF2  (Read 3501 times)

Willbur

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Extremly worried about NF2
« on: January 10, 2017, 08:25:58 pm »
Hello All,

Back in October I was diagnosed with a 2.3cm acoustic neuroma on my right side. I was recently tested for NF2, however it came back negative. Needless to say, I'm about two weeks out from my surgery and I've been getting this bad tinnitus in my left ear (similar symptoms to right) and I won't have another scan until next week. Is it possible for me to still have NF2? All of the doctors and genetic counselors say no at this point it would not be possible and it might be because the right ear is pushing on my brain stem, thus causing similar symptoms in my left ear. Any insight would be helpful.

Thanks,

Willbur
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Kathleen_Mc

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Re: Extremly worried about NF2
« Reply #1 on: January 11, 2017, 03:57:43 am »
I would think if you have a tumor causing symptoms it would have ben seen when the other was found back in Oct.
I have tinnitus in my non-AN ear, this didn't develop until years after my first surgery, had it all checked out and nothing found. Tinnitus happens for reasons other than AN's. My specialists were proposing the functioning auditory nerve was developing tinnitus to give stimulation to the brain to make up for the loss of hearing on the effected side.....now I don't know that I buy that however I remain tumor free with tinnitus in my un-effected ear.
Don't now if this helps, hopefully  the scan will bring you peace of mind.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Willbur

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Re: Extremly worried about NF2
« Reply #2 on: January 11, 2017, 08:43:58 am »
I would think if you have a tumor causing symptoms it would have ben seen when the other was found back in Oct.
I have tinnitus in my non-AN ear, this didn't develop until years after my first surgery, had it all checked out and nothing found. Tinnitus happens for reasons other than AN's. My specialists were proposing the functioning auditory nerve was developing tinnitus to give stimulation to the brain to make up for the loss of hearing on the effected side.....now I don't know that I buy that however I remain tumor free with tinnitus in my un-effected ear.
Don't now if this helps, hopefully  the scan will bring you peace of mind.
Kathleen

Thanks for the help Kathleen. I was also sleeping on my non-AN ear side last night and woke up and it was pretty damn bad. As you mentioned, they told me the same thing. They said I would have had another one already at this point in life if I did have NF2. I was just reading about Mosaic NF2, etc. and was worried. Again, thanks for the insight.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Kathleen_Mc

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Re: Extremly worried about NF2
« Reply #3 on: January 13, 2017, 11:37:52 pm »
Willbur
It is understandable that any change would make you worried, heck who wouldn't be....
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Susan A

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Re: Extremly worried about NF2
« Reply #4 on: January 16, 2017, 11:49:45 am »
Willbur, I'm curious as to why you were tested for NF2? You only mention one AN and no other tumors. Most people with an AN don't have NF2, and most people with NF2 have multiple tumors. Even if someone with mosaic NF2 only has one AN, they almost always have other tumors (tho obviously it is possible to find one before the others appear.) Honestly, I think your chances of having NF2 are very, very, small! Hopefully you are reassured by Kathleen's comments and by the fact that, even with one AN, you will have regular follow up MRIs, so your docs will be able to look for any signs of other tumors.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Willbur

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Re: Extremly worried about NF2
« Reply #5 on: January 16, 2017, 02:09:28 pm »
Willbur, I'm curious as to why you were tested for NF2? You only mention one AN and no other tumors. Most people with an AN don't have NF2, and most people with NF2 have multiple tumors. Even if someone with mosaic NF2 only has one AN, they almost always have other tumors (tho obviously it is possible to find one before the others appear.) Honestly, I think your chances of having NF2 are very, very, small! Hopefully you are reassured by Kathleen's comments and by the fact that, even with one AN, you will have regular follow up MRIs, so your docs will be able to look for any signs of other tumors.

Willbur, I'm curious as to why you were tested for NF2? - Anyone under 30 is considered at risk for NF2 or at least from what I read and what the genetics counselor told me.

Most people with an AN don't have NF2, and most people with NF2 have multiple tumors. - I know they can grow in other parts of the body, but I've never had a scan done on any other parts of my body.

Honestly, I think your chances of having NF2 are very, very, small - I think between her and my doc my worries have subsided. The doc told me statistically speaking he is about 100% sure I don't have it.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Kathleen_Mc

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Re: Extremly worried about NF2
« Reply #6 on: January 24, 2017, 04:15:11 am »
Willbur: Did you have your scan yet?
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Willbur

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Re: Extremly worried about NF2
« Reply #7 on: February 09, 2017, 08:47:16 pm »
Willbur: Did you have your scan yet?
Kathleen

Yea had it a week before Jan 24th. Nothing appears on my left side.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Kathleen_Mc

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Re: Extremly worried about NF2
« Reply #8 on: February 20, 2017, 09:17:54 pm »
Great news !
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Susan A

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Re: Extremly worried about NF2
« Reply #9 on: March 02, 2017, 08:35:42 pm »
That's great news Willbur! Glad to hear your scan was negative and that the doc is so sure you don't have NF2 :-) An AN alone is enough to deal with!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

ANSydney

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Re: Extremly worried about NF2
« Reply #10 on: March 02, 2017, 08:43:47 pm »
Wilbur, would love to hear a progress report, when you're up to it.

Willbur

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Re: Extremly worried about NF2
« Reply #11 on: March 16, 2017, 10:07:28 am »
Wilbur, would love to hear a progress report, when you're up to it.

Had another scan on March 6th (both MRI w/ contrast and CT scan) and nothing.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

ANSydney

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Re: Extremly worried about NF2
« Reply #12 on: March 16, 2017, 05:09:38 pm »
Hi Wilbur, good to see you up and about and active on the forum. Good to see that your scan was all clear.

How's your facial paralysis coming along?

Willbur

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Re: Extremly worried about NF2
« Reply #13 on: March 24, 2017, 06:27:53 am »
Hi Wilbur, good to see you up and about and active on the forum. Good to see that your scan was all clear.

How's your facial paralysis coming along?

Coming pretty good although when I move my eyes left or right (no head movement) my tinnitus kicks in my right ear really badly.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

CHD63

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Re: Extremly worried about NF2
« Reply #14 on: March 24, 2017, 10:12:30 am »
Hi there .....

This is called gaze-evoked tinnitus and is very common in AN patients.

All the best to you .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011