Author Topic: Is this NF2?  (Read 8312 times)

10347616

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Is this NF2?
« on: July 15, 2014, 06:22:11 am »
Hello everybody.
I'm Luca from Italy, 22.

In short, I have an AN in my right ear (5mm).
My main concern is, I have the same symptoms in both ears (can't hear very well, whistle, kind of little electric shocks inside the ear, strange sensation in the cheeck).

So I guess I have two options:

-I have one AN, and for some strange reason both ears suffer from symptoms (as for the whistle it sounds possible, but I would not say the same for losing my hearing)

-I have 2 AN, of which one is too little to be seen through RMI, but big enough to give me these problems.

Which sounds more possible to you?

Thanks.
Be strong. Luca

BoedyGirl

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Re: Is this NF2?
« Reply #1 on: July 17, 2014, 05:13:34 pm »
Hi Luca,

I would guess that it probably is NF2 or mosaic NF2 which is what I have which is a milder form of NF2  and is only in part of the cells of your body rather then all of them. I was 23 when they found my AN and it was 5 cm. I was gene tested because of my age and how big the tumor was and it came back as Mosaic NF2. If I were you I would get gene tested just because with this disease it is better to monitor it and catch the tumors when they are small because mine was huge and I am now deaf in my left ear but dont have any other side effects thank goodness. I only have ringing in my left ear and not both so I would also encourage to continue getting MRI's to see if another one develops. I am now almost one year post op and feel great. Best of luck to you!

Beth

10347616

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Re: Is this NF2?
« Reply #2 on: July 19, 2014, 02:39:09 pm »
Thanks for your reply.

Does this kind of NF2 also generates tumors along the spine or in the brain, as far as you know?

Hugs,
Luca

BoedyGirl

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Re: Is this NF2?
« Reply #3 on: July 20, 2014, 08:08:53 pm »
Yes Mosaic NF2 could generate tumors anywhere depending on how many cells in your body have the mutation. The only difference between regular NF2 and Mosaic NF2 is that a person with regular NF2 has the mutation in every cell of their body because the mutation was passed on by a parent. In my form for example the mutation occurred after I was conceived and was my cells were dividing and increasing. So the number of cells in my body is dependent on at what point in my development the mutation occurred. I could have tons of cells with the mutation or only a few mutated cells. Mosaic NF2 generally is milder then the regular form, but there is no way to know how many cells are mutated so you have to be ready for tumors to grow anywhere. Symptoms of NF2 include tumors growing anywhere in the spinal column or brain so those are the general symptoms of mosaic NF2 just with a lower chance.
 

10347616

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Re: Is this NF2?
« Reply #4 on: July 22, 2014, 11:28:52 am »
Thanks.
I hope this is not my case, but I have to be ready.

Can I ask you where you had your huge neuroma operated without having facial issues?

Hugs, let's be strong.

Luca

BoedyGirl

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Re: Is this NF2?
« Reply #5 on: July 23, 2014, 08:39:00 am »
Ya NF2 can be shocking but the reality is that once you find out they will monitor you for the rest of your life and if any tumors develop they will never be as large as the first tumor they found. My AN was removed at Oregon Health and Science University in Portland Oregon by Dr. Aclan Dogan. He is my hero because he was sure I would have some facial weakness and would need a weight put in my left eyelid after surgery because I wouldnt be able to shut it all the way, but none of those things occured. He was able to get 99 percent of my tumor without damaging anything aside from my hearing, but that is unavoidable because AN's originate and grow around the hearing nerve so they had to remove it. I would reccomend Dr. Dogan to anyone with a AN to have removed.


Mark H

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Re: Is this NF2?
« Reply #6 on: July 25, 2014, 08:16:50 pm »
Hi Luca,
it's been a while since I've visited this site. I'm an NF2'er. I'm 61, wasn't diagnosed with NF2 'till not too many years ago. My AN's are both tiny, about 2mm each as of my last MRI a few years ago. They first started showing up some time ago on MRI's but were too small to identify, or even be sure there was anything there. For a long time it was thought I had NF1 but I finally convinced the little buggers to grow enough to be sure what they were. At my age and given the tiny size I'm really not figuring on ever having to do anything about them. I'll probably break down and get another MRI next year just to check up on them but I hate to spend the money. Like BoedyGirl said OHSU is a good place. They did my neck surgery several years ago (got a titanium rod and 4 screws). House Ear Institute in California is also good.
Mark   

10347616

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Re: Is this NF2?
« Reply #7 on: July 29, 2014, 07:36:26 pm »
Beth, yeah that's true. Once you know it, you can check your body periodically.
Though, as little as they can be, acoustic neuromas can be tough to remove
On the other side, from the expetiences I have read, if you manage to have them treated succesfully, most of the job is done.
I mean, you can grow tumors in your spine, but they are much easier to take out, and (I pray what I am saying is right) meningiomas in the brain are usually only a problem of poor kids who have NF2 since they're very young. We should feel so lucky if we think bout those little creatures.

MARK,  I'm glad to hear doctors already suspected the presence of the ANs even before they were 2 mm big.
This means that, if I happened to be another one, it would be maybe smaller than 1 mm, since they cant see anything.
Though, I guess it largely depends on the quality of the equipment they scan you with.
I hope you will live long enough to have to consider your neuromas as a problem :) but yeah, they're tiny so dont worry at all.

Can you guys  satisfy my curiousity? Why do you talk about neuromas in centimeters,is that because in medicine you use the metrical system, or are you just being kind to the rest of the world reading you? :)

Sorry for typos (writing from cell phone) or for bad English.

Good thing about this disease is I am visiting lots of cities to  have my rmn seen by the best surgeons.
You guys... I live in Italy and never been to Rome. Will go next week for my AN. WHAT A SHAME.

Ciao and be strong!

BoedyGirl

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Re: Is this NF2?
« Reply #8 on: July 30, 2014, 05:13:12 pm »
Honestly I'm not sure why the size of an acoustic neuroma is referred to in the metric system that is just what my doctor told me when they found it and I never really questioned it  :)

Susan A

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Re: Is this NF2?
« Reply #9 on: September 09, 2014, 06:22:27 am »
Luca,
NF2 usually involves 2 ANs, tho as BoedyGirl said, people with the mosaic form might only have one AN. With noises in your 'good' ear, it could be something like Meniere's.

As for why American doctors measure tumors in cm or mm  - that's because scientists in the USA use the metric system even though the general population does not.
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

10347616

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Re: Is this NF2?
« Reply #10 on: October 28, 2014, 01:59:04 pm »
Hello everybody, I have big news.
I've had my AN operated, that may sound weird as it was 5 mm, but I trusted so much my surgeon (dr Fukushima) that I decided to try to save the hearing, that was almost perfect.
The operation was on 30/09 and it went great: everything was removed, no facial issue at all, after 8 days I was home.
Hearing is very good: today, one month post-op, I can hear very well on the phone, have a conversation in a not-very-noisy place shutting the other ear, and they told me that the ABR (that they used during the surgery to check the acoustic nerve) did not get worse during the operation, and in 2 month I should get back all the pre-op hearing.

So everything perfect, except the other ear, that now should be the one working well and letting me have a normal life, is not doing his job.
I had already written that my hearing did not sound very good in the good year neither (despite the good audiogram, that does not mean anything to me), and now that the other year is still recovering, I'm realizing how I cannot understand words in the good year, even though I hear them.

I know I should just be happy about my surgery, but the thought of having another one freaks me out. In Jan I'm having a 3 Tesla MRI, that is the most powerful used on man nowadays, and should see anything if it's there. Actually, today I'm pretty sure I have NF2.
Worst thing is my family doesn't seem to realize how bad this would be. I'm terrified about my mum, who I noticed doesn't hear very well, and has been having dizziness for like 20 years (no f***ing doctor prescribed her an MRI), and consequently about my brother.

This things sucks.
The only thing that comforts me is that, except for regrowth, I'm not going to be deaf.

Luca

Mark H

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Re: Is this NF2?
« Reply #11 on: November 19, 2014, 08:23:42 pm »
Luca,
I'm glad the surgery went well. Just remember, every day is a good day as long as you're looking at the grass from the top side.
Mark

10347616

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Re: Is this NF2?
« Reply #12 on: December 08, 2014, 02:52:26 pm »
Hi everybody,

I'm going to update my situation with another symptom that confirms NF2 suspects: lately I've been having ocular issues, that are seen straight lines curvy and a black spot in my central vision (only at night).

These are usually  caused by a macular damage: at first I was terrified of having AMD (that leads to central blindness), but my eye doctor says patients affected by NF2 (that now I think I am VERY LIKELY to have) get very often something called macular pucker, that has same symptoms but is fortunately fixable through surgery, that, if well performed, leaves almost no damage.

This is still a theory because I have to do some tests.

DID ANYONE IN THIS FORUM HAVE EYE ISSUES (NOT RELATED TO THE AN) ? WHICH KIND?

I'm not very scared about my eye issues, as they can probably be fixed.
I'm not very scared about the possible AN on the other side, because if it's there it's very small.
But I'm 100% worried about growing new tumours in the brain.

This thing totally sucks, but yesterday my 18-year-old neighbour had his leg cut because of cancer.
I still have a normal life, so I guess I should not complain.
Let's all be strong.

Goodnight (from Italy)

Luca

 


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