How to decide a surgery?

[ykp3]

Hi,

I am diagnosed with a medium size tumor in the intracranial area on the left side. In the Shield MRI report, they mentioned it could be Acoustic Neuroma(most favored one) or meningioma. I have been having headache in the back of my head on the left side. I have been having ringing in my left ear and my left side of my face is numb (tongue, cheek, chin, head and forehead). Suddenly in a week my symptoms seem to get worse.

I immediately requested to see a surgeon in Tufts, Mass General and Brigham women's.

Mass General assigned my case to Frederik Barker who is booked 3-4 weeks out. And I don't know when he will be available for surgery.

Brigham women's automatically assigned my case to Doctor Omar Arnaout. In his appointment he mentioned that surgery is needed quickly. He has a good bedside manner. He said some of my symptoms like the burning feeling I am getting on my lips and under my lips near the chin area are atypical to Acoustic Neuroma. And this could be a cause for concern(it could be something besides AN, very slim chances of being cancerous) and a surgery is needed immediately. Also, when I asked him if he could preserve my hearing, he said it is 50-50.

In Tufts, I have an appointment with Carl Heilman booked two weeks out for consultation. I am not sure when he will be available for a surgery.

At the moment, Dr Arnaout seems like the only earliest option. Does anyone have any idea about him? Do you think I should patiently wait for other doctors?

Also, was anyone else in the same position where initially it was diagnosed as AN but turned out to be something other than AN or a malignant tumor?

Edit: I was able to get an appointment with Dr Barker. It got moved up. Dr Barker said the same things as what Dr Arnaout mentioned. Only thing I found unconvincing was that Dr Barker did seem casual about my symptoms. My symptoms like tinitis and facial numbness have been there for 6 months, but last few weeks they aggressively became worse. However, Barker didn't seem to be concerned by it. Also surgery with Dr Barker would be booked out for atleast 45 days to 2 months.

I am concerned about my academics as these symptoms seem to be affecting my ability to focus and study. I have paused coursework for my Masters this semester. I am thinking that it's better to get surgery as soon as possible so that I can get back to my studies. I am confused between waiting and getting it done early

[donjehle]

Hi ykp3!

Thanks for making your first post on the ANA forums!

I want to commend you for getting three consults with surgeons in Tufts, Mass General and Brigham women's.  Some people just get one consult with one surgeon, and that opinion is often prejudiced by what procedure the surgeon likes to do.  It is also important to find out how experienced the specialists are with treating Acoustic Neuromas.  I would avoid anyone who just does 1 or 2 acoustic neuroma treatments in a year as opposed to someone who treats many acoustic neuromas in a year.

I am not familiar with Dr. Arnaout.  He might be very good at treating Acoustic Neuromas for all I know.  However, it makes me a little concerned that you were able to see him so quickly and he is ready to do surgery quickly and thinks that there could be a cancer.

I am not a physician so I cannot give you medical advice.  I can say that Dr. Arnaout is correct when he says the burning feeling is atypical for acoustic neuromas.  But that alone does not mean you might have a cancer.  I had a very severe burning sensation on my tongue (not on my lips like yours), and my neurosurgeon said such a burning sensation was not typical of acoustic neuromas.  However, the MRI did show that I had an MRI and nothing revealed any cancer.  Your experience is a little different from mine, but I am skeptical that you have cancer.  Again, I am not a doctor and cannot give you a diagnosis.  But I think it is wise to check out the other consults before you make a decision for surgery with Dr. Arnaout.

I wish you the best in your journey, and I hope you continue to post here and let us know what you decided to do.
Don

[marybodah]

Hello!

I met with Dr Barker at MGH 16 years ago due to the 1 cm rt sided AC I had removed via retrosigmoid at UMass Medical, Worc, Mass was continuing to grow 3 years after surgery. Dr Barker has well over 20 years experience. He will tell you if your surgery can wait for his schedule. Dr Barker would be my choice and I am sure others will confirm his expertise.  This is serious surgery and you really want the best...of the 3 you listed it's certainly, in my opinion, Dr Barker.  (And from other AN friends I have made and met thru this forum I believe would agree).

I decided to have Stereotactic radiation at MGH as my tumor was small and I didn't want to go thru neurosurgery again.  15 years and counting after radiation my AN is stable... (I have an MRI every 3 years).

Best wishes in your decision and for the best possible surgery outcome. (If I had known what I know in the years since my surgery I would have had surgery at MGH... Am doing okay but just saying...)

Regards,

Grammy Mary

[Greece Lover]

I would second the idea that any one pushing for surgery immediately and who is immediately available might be someone with whom to be cautious.  I have no idea, of course, but it would be a concern. Ask this doctor how many AN surgeries they do per year.  That might give you some indication of how much experience they have.

Good luck.