Author Topic: Greetings Everyone. New member with a few questions...  (Read 145 times)

redleg25

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Greetings Everyone. New member with a few questions...
« on: September 12, 2019, 03:19:57 pm »
Hello All,

I'm new to the "club" with my 1.1 cm AN and I'm 41 years old.  I have some of the usual symptoms, including hearing loss, tinnitus, and mild vertigo. I also have developed a troublesome sensitivity to some high pitched sounds. I'm currently in W&W mode and have my second MRI in a couple of months.  My doctors seem to be pushing surgery, but that doesn't sound like a great option to me, especially when compared to Gamma Knife.  I've been reading through the forums for a while now, and I still have a million questions.  However, in the interest of brevity, I'll just hit the highlights...

1).  It seems that no matter what I do, it's about 50/50 that I'll lose all hearing in my AN ear.  Is that about right?  I know everyone is different, but it seems that between surgery, radiation, or W&W that my odds are about even.  Preserving my hearing is my top priority.
 As I am leaning towards radiation, is there anyone here that has had Gamma Knife and preserved their remaining hearing?

2).  After doing lots of reading, I don't see many people complaining about noise sensitivity.  Is that an unusual symptom?  High pitched sounds (like my infant daughter screaming) are piercing and almost force me out of the room. 

3). Has anyone noticed a correlation between blood sugar and AN?  I have been dieting recently, trying to keep the dad bod in check.  By lunchtime most days I am really hungry and I've started getting the shakes, which never used to happen when hungry.  Anyway, on those days, about an hour after eating a reasonable meal, my vertigo kicks in.  That's really the only time it happens.  I haven't seen much discussion about food/blood sugar affecting symptoms, so I was just wondering if I missed those topics.  Obviously, I've altered my diet to keep this from happening, but I find the possible correlation interesting. 

Thanks to anyone who takes the time to read this and offer any answers. 

Sharky

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Re: Greetings Everyone. New member with a few questions...
« Reply #1 on: September 12, 2019, 05:52:21 pm »
Hi redleg25 :-)

I am also kind of a newbie, having been diagnosed this past May with a small AN. I'm sure other veterna posters will chime in but I wanted to at least say hello. :-)

I went to an initial ENt appointment in my city with THE guy who everyone refers to, and he said to do watch and wait for six months, get a followup MRI, and then we would discuss treatment. Meanwhile, he referred me to this site, and to a zillion other physicians for various things, which I have taken no action on.

I got a second opinion from a center of excellence for ANs out of state,a dn they don't even operate on small ANs, because they believe the risks outweigh the benefits at this stage. So, different physicians have different approaches. I like this second one better.

My symptoms are very mild--tinnitus in the affected ear, a feeling of fullness, and mild balance issues mostly when I am over-tired or when I've been driving for a while and I just get out of the car. It always takes several seconds for me to get my bearings. About the noise sensitivity--I definitely have it, but it is hard to describe. I just get edgy when confronted with high-pitched sounds or when stuck in a loud, crowded room with bad acoustics.

I, too, have a response to sugar. If I have a blood sugar spike or eat a candy bar, I immeditately get a higher-pitched, different kind of ringing than I typically live with. It lasts anywhere from a few seconds to part of the day. I noticed that connection early on.

I wish you the best and this is a great place to come and read and learn. It can also be overwhelming, so pace yourself. :-)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

bfoley

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Re: Greetings Everyone. New member with a few questions...
« Reply #2 on: September 13, 2019, 05:49:35 am »
Redleg25 -

Welcome to the club no one wants to join.

Everyone's AN journey is different.  That being said, here is what I can tell you about my journey that may be reassuring?

I had definite sensitivity to certain pitch sounds.  I practice yoga once a week as one of my challenges to my balance.  At one class, the instructor had on music, and at once point (during shavasana), it became so intolerable that it brought tears to my eyes.  I basically had to run out of the class to get away from that pitch.  So you are not alone.  Unfortunately (or maybe fortunately!) my tumor had a growth spurt and now I am left with no serviceable hearing in the  AN ear.

As far as hearing outcomes with Gamma Knife, I found this medical study. 

Outcome of hearing preservation related to tumor morphologic analysis in acoustic neuromas treated by gamma knife radiosurgery
https://ro-journal.biomedcentral.com/articles/10.1186/s13014-017-0875-z

I had Gamma Knife in July, but my hearing was already gone at that point.  In 5 months it grew 2mm in one dimension and 1mm in another.  I am kind of dreading what will happen in January when the dying tumor swelling hits.  Steroids are not fun, but I also need to be able to walk around!

I wish you success on your journey.  You have a great resource here with all our collective experiences.

redleg25

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Re: Greetings Everyone. New member with a few questions...
« Reply #3 on: September 13, 2019, 08:31:41 am »
My thanks to both of you, Sharky and bfoley.  It sounds like you both have it pretty rough with balance issues.  Fortunately, I have been spared that part, so far anyway. 

Thanks for the link! Very interesting read.  I was already leaning towards Gamma Knife, and this article definitely supports that direction.  Sounds like I have a good shot at hearing preservation if I nuke this thing while it's still small and I still have some hearing intact.  I also really like the part about possibly decreased tinnitus.  To me, that is probably the biggest kick in the pants about this whole thing - even if you lose all hearing, you still have the tinnitus!  Thanks nature.   :-\

Greece Lover

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Re: Greetings Everyone. New member with a few questions...
« Reply #4 on: September 13, 2019, 10:40:29 am »
Hi redleg.  Sorry you had to join our club.  This site can be helpful, but remember its always anecdotal and never substitutes for a doctor's advice.  I'll respond to a few things you mentioned:

I'm not sure about the 50/50 chance.  It can depend on tumor location and size and surgical approach.  For example, a middle fossa surgical approach is usually the best for hearing preservation.  I think you and I might be pretty similar.  I was 40 Y.o. and had a 1.2 cm tumor.  My Dr. said I had maybe a 60 - 65% chance to save my hearing.  He did and I'm elated that I chose to have surgery. The problem with middle fossa is that a lot of places to not do it very often, but I'd definitely ask your doctor about it.

I also have a lot of problems with sound distortion and discomfort.  My family is big into classical music and when we go to a concert, the flutes kill me!  I also have a lot of sounds that are distorted. 

Finally, diet can definitely effect balance.  It amazing how many things go into the vestibular system: eyes, legs, feet, light/dark, terrain, etc.  I often feel the most dizzy after a long day of teaching and only a light lunch.  I'm real dizzy before I get my dinner.

Good luck. Feel fee to DM me if you want to converse more about this, especially since it seems our tumors/age/symptoms might be pretty similar.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

Enri

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Re: Greetings Everyone. New member with a few questions...
« Reply #5 on: September 13, 2019, 08:35:56 pm »
Welcome to the club.  The important thing is to find what you are comfortable with.  I chose surgery, retrosigmoid.  I had surgery nov 2016.  My symptoms post-surgery are about the same as before.  That is to say, about the same level of hearing loss and tinnitus.   
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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

redleg25

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Re: Greetings Everyone. New member with a few questions...
« Reply #6 on: September 14, 2019, 07:13:19 am »
I guess my concern regarding surgery is that my doctor said he basically guarantees full hearing loss. I had to prod him about doing the middle fossa approach. He basically couldn’t care less about it. Sadly, there aren’t a lot of doctors near me to choose from, but I do have a second opinion scheduled in about a month.

Sharky

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Re: Greetings Everyone. New member with a few questions...
« Reply #7 on: September 14, 2019, 10:27:40 am »
Hi Greece Lover~
Could I hijack the thread just to ask you why you say doctors don't do middle fossa that often?

That is the approach my original surgeon recommended for my small AN.
Thank you!
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

chrisabbott

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Re: Greetings Everyone. New member with a few questions...
« Reply #8 on: September 14, 2019, 01:15:14 pm »
Hi - my understanding is that the tumor needs to be fairly small as there is less room to get it that way, and also harder to protect the facial nerve.  It may be less common since there are more options available to patients while the tumor is still small.
VS = 3.1 x 2.8 x 2.5 cm diagnosed 3/2019
Translab June 13th Dr Bien & Dr Dunn in OKC
No change in facial numbness, dry eye (not worse!)

mistasteve

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Re: Greetings Everyone. New member with a few questions...
« Reply #9 on: September 15, 2019, 02:53:10 pm »
Hi - my understanding is that the tumor needs to be fairly small as there is less room to get it that way, and also harder to protect the facial nerve.  It may be less common since there are more options available to patients while the tumor is still small.

I ended up going with the translab for that reason and was glad I did. The situation with its placement relative to the facial nerve was really bad. So it sucks that I can't hear in my left ear, but I like that my facial nerve was intact and I have full motion with my facial muscles.

Sharky

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Re: Greetings Everyone. New member with a few questions...
« Reply #10 on: September 15, 2019, 04:57:28 pm »
Wow guys. Well, preserving my facial nerve is my #1 priority...

Thank you for replying.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

redleg25

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Re: Greetings Everyone. New member with a few questions...
« Reply #11 on: September 15, 2019, 05:23:09 pm »
My doctors haven’t discussed facial paralysis much. They made it sound extremely remote. Are they sugar coating the odds? Either way, Gamma Knife still seems safest.

mistasteve

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Re: Greetings Everyone. New member with a few questions...
« Reply #12 on: September 15, 2019, 05:50:48 pm »
I had two surgeons, an ENT and a neurologist. ENT said 'only 10% chance of a problem' (well, they are pretty good odds). He also said 'you've essentially lost any useful hearing already, so choosing non-translab to try to save it is not wise. Neurologist certainly didn't sugar coat anything. 'You might have facial paralysis, it probably won't be permanent though, might last a few months. We can put this weight thing on your eyelid to help you out if it won't close.' He was the one who pointed out via that translab (and due to specifics of my case, YMMV) there'd probably be better visibility and workability, although he wouldn't really suggest one over the other. Translab did mean a longer procedure. Anyhow I was quite pleased after surgery when my facial nerve was OK.

Doctors sometimes like to do a hero thing: 'yours was the worst case of X I've ever seen'! This is something I've observed over the years with friends and family who've had surgery. Maybe 9 out of 10 times the doctor will tell them that. I don't think this was going on, but can't be certain. I was fortunate to have 2 very excellent surgeons, at any rate.

Mark Ruffalo had facial paralysis, in his case obviously he eventually got over it (after a few months). The prospect was still pretty scary, though.
« Last Edit: September 15, 2019, 05:56:34 pm by mistasteve »

Enri

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Re: Greetings Everyone. New member with a few questions...
« Reply #13 on: September 15, 2019, 07:02:10 pm »
Whether you choose surgery or radiation, it is important to find someone that handles AN cases frequently. 
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Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

redleg25

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Re: Greetings Everyone. New member with a few questions...
« Reply #14 on: September 15, 2019, 07:34:21 pm »
I had two surgeons, an ENT and a neurologist. ENT said 'only 10% chance of a problem' (well, they are pretty good odds). He also said 'you've essentially lost any useful hearing already, so choosing non-translab to try to save it is not wise. Neurologist certainly didn't sugar coat anything. 'You might have facial paralysis, it probably won't be permanent though, might last a few months. We can put this weight thing on your eyelid to help you out if it won't close.' He was the one who pointed out via that translab (and due to specifics of my case, YMMV) there'd probably be better visibility and workability, although he wouldn't really suggest one over the other. Translab did mean a longer procedure. Anyhow I was quite pleased after surgery when my facial nerve was OK.

Doctors sometimes like to do a hero thing: 'yours was the worst case of X I've ever seen'! This is something I've observed over the years with friends and family who've had surgery. Maybe 9 out of 10 times the doctor will tell them that. I don't think this was going on, but can't be certain. I was fortunate to have 2 very excellent surgeons, at any rate.

Mark Ruffalo had facial paralysis, in his case obviously he eventually got over it (after a few months). The prospect was still pretty scary, though.

Ha! My doctor said the same thing about “useful hearing”. Pretty easy for him to say. I’ll go ahead and try to save whatever I can, thank you very much. Comments like that are why i’m getting a second opinion. If I lose the fight, so be it, but i’m going down swinging.

Changing the subject, what does the research say about increased symptoms during W&W? If I do nothing and the tumor doesn’t grow, what are the odds of increasing symptoms?

 


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