Author Topic: facial hemangioma doing same surgery procedure as acoustic neuroma need advice  (Read 4143 times)

Kendra

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Hello,
I am having surgery for facial nerve hemangioma on Sept 6th. I would really love to speak with someone regarding this.They said it is the same surgery typed as acoustic neuroma Feeling very overwhelmed and alone.

 I will be having surgery at Loyola hospital with Dr. Leonetti and Dr. Douglas Anderson. Can anyone recommend things to do to prepare and for recovery? Sorry for all the questions.

Kendra

« Last Edit: August 12, 2016, 06:12:06 pm by Kendra »

Cathy64

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Kendra,
I can only imagine how anxious you are, as I am just starting with my evaluation and treatment planning for a facial nerve hemangioma. I wish I could be helpful, but will still follow along on this discussion board.

PranaRN

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I just posted my experience with trans-lab. It has some suggestions that may help. Awaiting approval
Best wishes!!

DebV

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Hi Kendra,
I'm sorry your having to go through this, I know how overwhelming it is. My tumor is an Acoustic Neuroma like most everyone else on this forum,  but from what I can tell we are all dealing with more or less the same treatment and recovery. I am scheduled Sept. 7th for a Middle Fossa Craniotomy with Dr. Wilkinson and Dr. Schwartz at House Ear Institute in LA (a 2 1/2 hr flight from my home). Are you traveling for your surgery or are you close by?  I consider myself very blessed to have family in close proximity to the hospital where I will be treated, so for me it's comforting. As for my recovery, I'm told I will be off work about 8 weeks. I will have some Balance issues as my balance nerves on my left side (the side of my AN) will both be cut and removed during surgery. I have read many posts regarding members who have facial weakness and partial paralyzes after surgury, i hope they can help answer some of your questions and concerns. I'm seeing a Vestibular therapist when I come home to help me to regain control of my balance. My husband will be here to help and my parents live only a few minutes away. These are the things I did to prepare,  however there is nothing that can prepare you emotionally except faith in knowing that you have the best possible surgical team and then just put yourself in their hands.  I hope you find as much comfort from this forum and from your Surgeons as I have. I wish you only the best.

DebV
« Last Edit: August 17, 2016, 12:57:32 am by DebV »
0.6 x 0.4 x 0.4 Left side AN diagnosed 5/27/16
Consult w/House, Dr. Wilkinson 07/21/16
Middle Fossa craniotomy  9/07/16 by Dr.Wilkinson and Dr. Schwartz of House Ear Institute Los Angeles

Sheba

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Hi Kendra

I just had AN surgery in July. 

To prepare, you should focus on being healthy -- sleep, exercise, good nutrition.  Treat yourself to a nice massage or nice meal !!

For when you come home, ideally you have someone to take care of food (shopping, preparation) and any bending or lifting required, for several weeks  - you just want to putter around your house, and then be able to take walks outside, but stay totally away from any kind of lifting else you may spring a CSF leak.   If you have to prepare your own meals, maybe get some good Amy's frozen meals (my fav!) and/or prepare and freeze some now.

My first few days out of the hospital I needed a walker and a shower chair - they brought us the walker in the hospital, and my husband got a folding camping chair for $10 that we used in the shower. 

 I also bought "slip on sneakers" - sketchers makes some - so I could have good footwear but not have hard time putting them on.  I only ended up using them the first week, and then was walking in regular running shoes.

I bought anti-bacterial soap for washing my incision area daily, but the hospital said any soap was fine for that.  I also needed bobby pins to pin my hair away from the incision, to help keep it clean.

If you need reader glasses or sun glasses, it helps to have cheap ones that you don't mind taking an "arm" off of, so that nothing touches your incision.

If you want to cut or color your hair, good to do that just before surgery since you won't want anyone touching your head for a while post op.   you don't need any special hair cut - they don't take much off for the surgery, and ideally your hair can "cover" the wound after surgery when you go out.

My two cents !
Sheba
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

Sheba

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thought of two more things:

1.  I chose to have a chiroproctic adjustment to my spine week before surgery - i rarely do this but did not want any muscle knots aggravating recovery

2.  A nurse gave me the tip post op, to get some peppermint oil to reduce nausea - there are solid studies apparently showing its effectiveness.  it seemed to help me.  we just put it in a bowl to waft into the air;  and i put it on my wrists when we went outside
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.