Author Topic: Just found out have late tumor.  (Read 1876 times)

Toncin

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Just found out have late tumor.
« on: May 28, 2018, 01:48:08 pm »
I have just found out I have a acoustic neuroma. It is 4 centimeters by 2.3 centimeters in my right ear. I have severe pain in my throat and jaw bone . Chewing is a pain. My throat is swelled very much. Have had a cat scan Friday. Now waiting for tomorrow to get scheduled for a MRI. My E N T Dr. Said it has to be surgery. We will know if it is cancer until it is out and biopsy. I am just so lost..do not know anything about this if the surgery is a long stay in hospital or what to expect..so many questions..and the way they are talking surgery will be soon. Thank you if there is anything you can help me with. Toncin

Director

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Re: Just found out have late tumor.
« Reply #1 on: May 28, 2018, 04:50:03 pm »
Dear Toncin,
  I know you will get lots of information here but just want to encourage you to get more than one consultation with surgeons- it is very important to choose a surgeon who is experienced with large ANs. Acoustic Neuroma is not normally malignant but this is brain surgery and you want to be in good hands.
Let us know if we can send you information - email support@anausa.org and we will be happy to get you a free patient kit.
Allison Feldman
director@anausa.org

shari99

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Re: Just found out have late tumor.
« Reply #2 on: May 29, 2018, 09:17:55 am »
Good Morning,

I am 4 weeks post-op of an acoustic neuroma on my right side. I understand it is a shock to you. however I agree with having a second opinion from surgeons. I was on board and scheduled with one team of doctors for surgery and did not feel comfortable at all. I finally got the courage to ask for another opinion even though my surgery date was set at Kaiser in Anaheim. I had a consultation with a team in San Diego, Kaiser and it turned out to be the best day of my life! They met me as a team and discussed every possible avenue and outcome. I re-set my surgery for  3 weeks later then originally planned  with the new team as they had more experience with this type of surgery. They had done 825 acoustic neuroma removals to date prior to me. Thank God I did this as I truly believe my great outcome could have been completely different as their level of experience was far superior to the first team.
Acoustic Neuroma is not a cancerous tumor, but it sits in a difficult position effecting your hearing, balance, facial nerves. Gather all the information prior to meeting with surgeons on Acoustic Neuromas so you feel ready to ask important questions, first being how many patients have you operated on and outcomes.

Toncin

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Re: Just found out have late tumor.
« Reply #3 on: May 30, 2018, 12:51:37 am »
Thank you so much for the advice. Right now , I am waiting for my MRI . I had a cat scan but my Dr called and wants it as soon as my insurance okays it. So I will probably hear about it today.