Author Topic: "but it's just a small neuroma" (how many times will I be told this)  (Read 973 times)

Buchaired2

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Not in best mood today even though glad to have the GK behind me 10 days ago.

My AN was 13x7 mm when diagnosed March 2nd, probably a bit bigger by GK time recently... but...
How many times do I have to hear that it was a small tumor?  I still have 100% hearing loss on that side.  What consolation is there in being told it's "small" - ??
They act like I just won some sort of prize when they say it.  Obviously, this is not as bad as a huge cancerous tumor, I fully understand and appreciate that.  But for whatever reason, this "small" neuroma has been no walk in the park.  It might be relatively small by medical clinical standards, but I am still just as 100% deaf on my left side from it... and that is permanent.

Jill Marie

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #1 on: January 21, 2020, 08:44:51 pm »
I totally get what you are saying!  So the tumor was small, it's still a BIG deal, a lot to deal with and has left you forever changed.  I had my tumor removed in 1992 but still remember the letter from a close high school friend.  She got my letter telling her how I was doing after having my Facial Nerve Tumor removed, she replied, "Oh, thank goodness it was just a Facial Nerve Tumor, I heard you had a Brain Tumor!  Glad you shared your feelings, hope it helped.  The first few years after my surgery I use to throw pity parties, the first one was a biggie.  I destroyed everything my husband brought home for me from the hospital, I felt better afterwards.  :) Take Care of yourself, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

chrisabbott

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #2 on: January 22, 2020, 12:48:16 pm »
I think it is fair to say that size doesn't always matter, and everyone that thinks its great yours is small, has not considered for one second how they would feel if they had even a microscopic tumor in their head.

I'll never forget when I got that call so fast after my MRI, I hadn't taken my coat off - the neurologist told me 3 cm and I remember wondering whether there's much room in there for a 3 cm blob, then she said "It's not in a good place". I said my big toe would be a good place to have a tumor.  She thought I was joking....

I'll go against the grain here, because I've seen so often people point out small is good, they grow slowly, you got lots of time to mull it over.  But in reality, that's how it is for most folks, not everyone.  Some do grow quickly.  Some tumors are found very small because they caused symptoms that led to the diagnosis.  All of these tumors may be non-malignant, but they're only benign if they don't grow and they don't start pressing on stuff that impacts or threatens your life.  The choices ahead of you are important - the only great thing I see about a smaller tumor, is more choices about how to deal with it since some are no longer an option beyond say, 2 or 3 cm.  Gee, what a benefit!  Most people don't grow up just knowing they'd prefer translab over middle fossa or GK should they happen to have a brain tumor later in life!

I hope that doesn't sound too gloomy, or my humor offends - but I'm afraid you're in for a good deal more eye-rolling before you're done, you might entertain yourself by coming up with a few wise cracks yourself.  I prefer to feel people are laughing with me than at me if you know what I mean.  All the best.
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

Isla247

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #3 on: February 17, 2020, 12:39:04 am »
I feel your frustration. I have a doctor who tells me the symptoms I feel can't be caused by my tumour, however, most of my symptoms are listed on information websites and by patients throughout these forums. My tumour is similar in size and is currently growing and the dizziness and nausea I feel is taking over my life. I am spending more and more days feeling like I am on the verge of vomiting and not being able to drive because of this damn "small tumour".

Greece Lover

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #4 on: February 17, 2020, 08:29:45 am »
I hear ya!  One thing I've learned is that very few people have any idea how to respond or what to say when they meet someone with a serious or rare diagnosis.  They need to find something to say. Often it comes out poorly.  I've tried to learn a lesson from that, and don't try to find some sort of "silver lining" when I talk to others about their own suffering.
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!

notaclone13

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #5 on: February 17, 2020, 11:23:28 am »
Isla, I posted previously about studies showing that ginger is very effective for dizziness and nausea. I find it very helpful on the days I feel semi-dizzy. If you enter ginger in the search bar you will find many posts about it. Many people on the forum report it helps with dizziness. You can take it in pill form, dried candied ginger or my new favorite, Prince of Peace Ginger packets. Mix them with hot water to make tea or add it to a water bottle. Unfortunately Prince of Peace Ginger packets are imported from China, so the Coronavirus issue may affect their availability.

Isla247

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #6 on: February 17, 2020, 03:38:22 pm »
Not a clone,Great idea! Thank you so much. I am very much into using as many natural things as I can possibly use.  I have a bottle of ginger essential oil here at home so I will research how I can use it best for my nausea. When I am in the midst of a bad day, my muddled brain doesn't think about these things. Thank you again. 

notaclone13

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #7 on: February 17, 2020, 07:45:10 pm »
I should also mention there are many good ginger beers. The stronger the ginger the better.

Isla247

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #8 on: February 18, 2020, 01:13:35 am »
I should also mention there are many good ginger beers. The stronger the ginger the better.

Thanks

Kathleen_Mc

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Re: "but it's just a small neuroma" (how many times will I be told this)
« Reply #9 on: March 15, 2020, 02:15:07 am »
I remember the years of worry in "watch and wait" for my tumor regrowth, kept being told it only grew a tiny bit and it was small and not medically necessary to have removed however it was causing me great anxiety because I wanted it out before it got big. I was very relived to get the sucker out.
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)

 


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