Author Topic: Newly diagnosed  (Read 1142 times)

Meemaw

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Newly diagnosed
« on: July 03, 2022, 01:26:17 pm »
     Hi, I was diagnosed in June of this year and have had one consult with Dr. Arriaga in New Orleans. I went to see him last Friday, he seems to be very educated on these type of tumors as he said he sees about 250 a year. The visit was so fast it’s all kind of a blur, I felt rushed in and out. He is scheduling me for a CAT Scan, other test and balance therapy. My next visit with him is not until October. I have another visit planned with Dr Masters also in New Orleans but my gut tells me to sick with him even though I felt rushed. Any words of advise would be greatly appreciated.
     Does anyone suffer with severe exhaustion, I have been struggling with it for about a year. Thank you

TrueKnits

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Re: Newly diagnosed
« Reply #1 on: July 03, 2022, 04:53:07 pm »
Hi! I was diagnosed in May.
I have read good things about Dr. Arriaga. If feeling rushed left you with unanswered questions I encourage you to contact his team.
I too have been experiencing severe exhaustion. I had a very active life until the AN symptoms hit hard in April.
Now I can barely do anything without needing to stop and rest.
I have surgery scheduled for August 12th and am looking forward to recovery.
Wishing you well as you explore your options and move forward!
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

Meemaw

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Re: Newly diagnosed
« Reply #2 on: July 03, 2022, 07:25:29 pm »
   I also have read really good things about Dr Arriaga, I think I will contact the office. Thanks for the advise.
  It’s good to know I’m not the only one with exhaustion, good luck with your surgery. Please keep the site up to date on your surgery and recovery.

alabamajane

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Re: Newly diagnosed
« Reply #3 on: July 04, 2022, 06:45:21 pm »
Sorry to hear about your diagnosis,, I think some of the best advice I could give you ( as someone who has been through surgery 10 years ago and has been on this forum for about 15-16 years),, you need to be your own advocate and research, research, research,, 

the first appointment with a doctor can be overwhelming. I had someone with me at all appointments who could ask questions but mostly could listen and take notes for me. One of the most important things is for you to feel comfortable and confident in the  doctor you decide to go forward with for treatment ,, if you decide to treat it and not just watch and wait for awhile.

How were you diagnosed? What is the size of it?
Have you had an MRI WITH contrast? That is generally the way the diagnosis is made. ( BTW,, I don’t know anything about Dr Arriaga and I’m not a medical person so I can’t speak to him ,, just generally speaking here) ,,,

One other suggestion is to send a copy of your MRI and any audiologist tests, to The House Clinic in Los Angeles,, they will provide you with a complementary phone consult with one of their doctors after looking at your situation. I did it and it was VERY informative and helpful in figuring out what I had and what another doctor thought about treatment. You don’t have to plan to go out there for treatment,, it’s just a service they provide. They are a premium AN Center along with several other clinics around the country that provide this service.

Any way,, just some thoughts to help you move forward. Best of luck to you. It’s a hard journey but you can do it. Take your time and be confident with your plan of action.

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Meemaw

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Re: Newly diagnosed
« Reply #4 on: July 06, 2022, 03:33:55 pm »
   The AN was found because of hearing loss in my left ear, soon after the hearing loss I started experiencing balance issues. They did an MRI with and without contrast on 6/4/22. I got the call on 6/6/22 that said they had found an Acoustic neuroma, here is why the report said  “On the left there is a contrast enhancing mass extending out from the internal auditory canal into the cerebellopontine angle, an acoustic neuroma. The extra canalicular portion of the mass measures 1.3 cm front to back and 9 mm transversely. In the canal it extends to the cochlea however the cochlea displays normal signal”. Still not quite sure what all that means but I’m learning as I go.
   The doctors office called today, they have me scheduled for vestibular testing and balance therapy. They also said they will be scheduling my CAT scan soon, so I guess I’m moving in the right direction. But I still my take your advice and reach out to The house clinic in Los Angeles just to get another opinion, thank you.
   

 


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