is it or isn't it brain surgery?? & friends & family NOT being supportive

[MDW]

I've with wondered the same thing! I'm scheduled for surgery in July, so what I've decided to tell people (if I choose to share with them at all) is the straightforward clinical terms "retrosigmoid craniotomy." Then they can Google away if they want to know more.

[MDemisay]

Dear am2lady,

Seek all validation for your symptoms here.  Don't listen to well meaning "friends" who seem to want to help but in the end fall short by trying to minimize this AN we have. It is serious because if you do nothing, it keeps growing. Yes, you are fortunate that it is not metastatic because that is the type that spreads to other parts of your body. But mark my words it does grow! Dit's probably best to go with someone who will be supportive to an appointment or follow up.

Benign is not really benign -----if you leave it alone it can affect your balance and make you fall!

If you need support, after you do your interview, you can come here and vent about online.

or you can PM me or others.

Watching and Waiting can be hazardous! Get another opinion if you need to.

Regards,

Mike

[Kat From Indiana]

Aaarggg! Today I was talking to a co-worker and referred to something I had heard her say last week.  She quickly asked me "How could you hear that from your office if you really had hearing loss?"  Like I am faking this?   I answered her:
A. I was sitting at the same table with you when you said this. and
B. The hearing in my other ear still works. ( In fact it works a bit too well, which is why loud noises is uncomfortable.)

This is the same woman who asked me, if I really had a "tumor" in my right side, why wasn't it affecting my left side?  I just looked at her.  I had already explained the tumor was crowding and squeezing the nerves in my ear canal.  Specifically the hearing, balance and facial nerves.  As many have said, I wish that I had never said anything. 

I agree that it is great to have a forum where you can vent, or just tell everyone that you have had a really crappy day and know that they will give you support and ((hugs)) and not tell you that what you are feeling is really all in your head.
Oh wait, it is in your head, or at least in your ear (snicker). 

[keithmac]

Dear am2lady,

Seek all validation for your symptoms here.  Don't listen to well meaning "friends" who seem to want to help but in the end fall short by trying to minimize this AN we have. It is serious because if you do nothing, it keeps growing. Yes, you are fortunate that it is not metastatic because that is the type that spreads to other parts of your body. But mark my words it does grow! Dit's probably best to go with someone who will be supportive to an appointment or follow up.

Benign is not really benign -----if you leave it alone it can affect your balance and make you fall!

If you need support, after you do your interview, you can come here and vent about online.

or you can PM me or others.

Watching and Waiting can be hazardous! Get another opinion if you need to.

Regards,

Mike

Benign in doctor-speak implies non-cancerous but benign to this ordinary Joe means not harmful etc.  And there's no way that a vestibular schwannoma isn't harmful!  I do wish the adjective 'benign' was substituted by 'non-cancerous' or something similar in such situations....

[gracey79]

I am responding to original post without reading other replies.  I totally get what you are saying, in many ways.  I watched a youtube video where the guy said don't tell people and made it seem like the reason for telling people would be to get the "oh you poor dear", I haven't done that, but I did tell a few people and it IS because I just want SOMEONE to care...to SHOW they care.  I don't know what they could do to make me feel better, but it seems like just a sincere "oh man that stinks" and then silence instead of " How about them Bears??" that would be great.  My mom understands because she has one too...but that is a hard situation too, cause she has one and I am her daughter. She feels bad that her daughter is going to need brain surgery and she feels bad because she is too...I talk to her a lot, but it makes me feel rotten.  I do not want to burden her...I don't want to burden anyone, but like you it seems like my husband thinks I am exaggerating. It is like " HELLO...part my skull will be cut OFF, not replaced...instead of the skull there it will be belly fat"...yes I have had four children and have belly fat to spare...but it is like I get the blank look and then the "what's for dinner?" I am learning not to expect ANYTHING from anyone...from emotion, concern and care, to physical help.  I really have never felt more like becoming a "hermit" in all my life.  Sometimes...like right now, I dream of winning the lotto and escaping to a secluded house with my children and just living off the land.  I know there are way worse problems in the world, and I try to focus on them, but my mind drifts back to AN world and here I sit. 

I am dragging my feet on surgery due to help with the children and the common side effects of surgery that are pretty scarey, but I know the side effect of no surgery is comma and or death if left...plus the facial paralysis and hearing loss.

So from cyberland, I am sending (((Hugs)) and letting you know you are not alone in your "aloneness".  I am praying for you to have the best possible journey through this.

[Karenk]

Gracey79
I feel so bad for you, your anguish is clear. You brought a tear to my eye. As other posters have suggested, your husband may be struggling to cope himself. When you can't turn to the 2 people you would normally turn to it must be extremely difficult. Please be kind to yourself, do what you need to to help yourself through until you feel stronger. Hugs to you too.
K

[mesafinn]

I had AN treatment (GK) 15 months ago, and it was still helpful to read this post and everyone's responses!   Even having "gotten used to" my new reality, it was helpful to read of others' experiences.

Hang in there!!!  You are not alone.