Author Topic: New to the forum - Just diagnosed two weeks ago  (Read 12591 times)

ampeep

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #15 on: January 15, 2015, 09:15:04 pm »
jtwarrin5,

Suggest you try to get a second (or third) opinion and definitely don't rush into a quick decision.  Does your doctor also perform GK (or other radiotherapy)?  If not, he's probably biased toward surgery, the site of which is located right at base of the skull.

How's your hearing in your AN side?  If you go the translab route, you will definitely lose hearing on that side. 

I can sympathize with your love of music!  I have a mid-fi system (definitely not high-end), but have not been able to get myself to listen to it much after getting my diagnosis.  I also have Etymotic earphones and a Headroom headphone amp that i haven't used either.  It's like, why  do I need a stereo when I can only hear mono......  2 months post GK my AN hearing went to zero.  It's been 11 months & some hearing has returned.

Keith

8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

Susang8

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #16 on: January 18, 2015, 09:57:47 am »
Yes...thanks jtwarrin5...my recovery from Translab surgery has been, in a word, uneventful.  Surgery was my only option due to size (2.8x2.6cm) and location (pressing on my brain stem and cerebellum). 

My surgery was 9 hours long, they were able to remove the entire tumour, and other than SDD, I have had no other issues from the surgery. No facial or eye paralysis, no balance problems, no dizziness, no headaches, no pain.  I was driving again a week after surgery and at 3 weeks post-op, I was back at the gym doing my regular workout.  I had lost most of my hearing per-op so the adjustment to SDD has been a non-event.

At this point, I usually forget that I had major brain surgery 11 weeks ago. 

I hope that whatever treatment you choose, it goes as smoothly for you.

Susan
Diagnosed with 2.8cm AN May 15, 2014
TransLab surgery completed October 27, 2014
No eye or facial problems, balance good, no dizziness
SDD and some tinnitus
Tumour completely removed
Life is VERY good!

jtwarrin5

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #17 on: February 11, 2015, 06:51:21 pm »
Well, I had my appointment to test my hearing, balance and facial nerve. My hearing has been impacted by a 50% degradation for voice and today's test showed that the nerve is very weak. The facial nerve is in great shape. The doctor said that numbness in my lip, tongue and face is due to pressure on my trigeminal nerve being pressured by the tumor. The balance nerve is already shot. No response when they did the cold and warm air test. Actually, they did the warm air test twice in my left ear and then ice water. Still no response. He said that may indicate that my recovery could be less severe, since my body has already adjusted to the messed up balance in my left ear. Now the waiting game until surgery in six weeks.

KeepSmiling

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #18 on: February 12, 2015, 10:46:36 am »
I just came across the message board and thought I would join to share in the discussion. I was diagnosed about two weeks ago after about a month and half of thinking I was allergic to something in my food, pulled a muscle lifting weights, or that I was just getting older and my hearing was being impacted. Unfortunately, none of those were the case and I was told after an MRI that I had a 2.1 cm Acoustic Neuroma on my left side.

Obviously, I was pretty surprised. I have invested a tremendous amount of time over the last 2.5 weeks studying as much as possible to educate myself. I've had good days and not so good. I have a positive attitude about it all, yet I am concerned about the operation and post-operative challenges. I live music and really don't like the thought of losing the hearing in my left ear. I live in Ohio and have an appointment with the Michigan Ear Institute on January 6th.

I look forward to learning and sharing as I discover the new normal for me.

Welcome to ANA.  Sorry about your diagnosis.

My husband also has an acoustic neuroma and we've been pleased with his outcome. You can read my posts by doing an advanced search for the word "proton". He ended his last proton treatment in August 2013 and my husband is doing fine, although he is still deaf in his AN ear.

My husband had  a form of radiation called Proton Beam Treatment, which seems to be  favored by many doctors to treat children with benign and malignant tumors of the brain. Proton Therapy does not have an exit dose. In other words, with this specific form of radiation known as proton therapy the tumor is zapped but the "zapping" ends inside the tumor and does not continue to zap the normal tissue in the brain. It should not be confused with photon therapy. I suggest you read about this yourself. Read about this and all treatments and ask lots of questions.

You will get lots of differing opinion as you talk to various doctors. When anyone warns you that a certain treatment  is problematic, try hard to gather evidence about that warning. Sometimes it is not too easy. Look for medical studies to substantiate concerns. Learn how to read those medical studies. The language is a little odd, but you can use google and look up the language used in the study.
 
Take good care of yourself and stay optimistic.  If you feel stressed out- go for a walk and move around. Do what you can to bust the stress. Attitude is always important.

I am not  sure whether your tumor size is still possible for Proton Treatment. You might be on the cusp.

I'd suggest that you read up on Proton Therapy here: http://www.proton-therapy.org/backgrou.htm

Then I suggest that you your MRI of the brain (with and without contrast) along with the MRI written report to a Proton Center of your choice. You may want to include a medical record from the diagnosing doctor too.

I sent all my husband's MRI's to doctors , along with a short cover letter. I sent them via a quick delivery method that required a signature of the doctor.

You can easily research which doctor to send it to simply by calling the Proton Center and asking for "the name of the medical doctor who treats benign brain tumors using Proton Therapy. " Then send a letter with your MRI to that doctor and he and his team might do a case review and give you an opinion as to whether you are a good candidate for this treatment.

At the the Proton Center that we ultimately selected, a team of doctors reviewed our case (for free), and then we got a call with their decision that my husband was a good candidate for Proton Beam Treatment.  Whether they believe you are a good candidate is case-specific.

We send you our warmest wishes and sincere hope for a great outcome. Welcome and best to you! :)


 

12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

KeepSmiling

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #19 on: February 12, 2015, 10:58:59 am »
Not sure why, but my last post was published without including some of what I wrote.

Here is the rest:
 I suggest that you your MRI of the brain (with and without contrast) along with the MRI written report to a Proton Center of your choice. You may want to include a medical record from the diagnosing doctor too.

Take a look here for info about where the Proton Centers are:
http://www.proton-therapy.org/index.html
The National Association for Proton Therapy (NAPT) is a non-profit organization supported by proton center members and is the Voice of the Proton Community. The NAPT promotes education and public awareness for the clinical benefits of proton beam radiation therapy. Founded in 1990, NAPT is an advocate for the advancement of proton therapy. It serves as a resource center for patients, physicians and health care providers, universities, academic medical centers, hospitals, cancer centers, the Centers for Medicare and Medicaid Services (CMS) and other health care agencies, the U.S. Congress and staff, and the news media.

We are strong advocates for patient access to proton therapy as a superior form of radiation treatment for cancerous tumors that can result in less morbidity and minimum to no side effects.

Supporting operating center members:

    Willis-Knighton Health System, Shreveport, Louisiana

    Scripps Proton Therapy Center, San Diego, California

    The Provision Center for Proton Therapy, Knoxville, Tennessee

    S. Lee Kling Proton Therapy Center at the Siteman Cancer Center

    SCCA Proton Therapy, A ProCure Center in Seattle, Washington

    The Roberts Proton Therapy Center at University of Pennsylvania Health System

    ProCure Proton Therapy Center in partnership with Princeton Radiation Oncology Group and CentraState Healthcare System, Somerset, N.J.

    James M. Slater, M.D. Proton Treatment and Research Center at Loma Linda University Medical Center

    The University of Florida Proton Therapy Institute

    M.D. Anderson Cancer Center's Proton Center, Houston

    ProCure Proton Therapy Center, Oklahoma City, located at the INTEGRIS Cancer Campus

    CDH Proton Center, Chicago

    Massachusetts General Hospital

Supporting members under construction:

    University Hospitals Seidman Cancer Center, Case Medical Center

    Texas Center for Proton Therapy

    UF Health Cancer Center at Orlando Health

    The McLaren Proton Therapy Center, Flint, Michigan

    Mayo Clinic Proton Beam Therapy Program with locations in Rochester, Minnesota and Phoenix, Arizona

    Ackerman Cancer Center; Jacksonville, Florida


    Maryland Proton Treatment Center, Baltimore, Maryland


    Emory Proton Therapy Center, Atlanta, Georgia


    Dallas Proton Treatment Center, Dallas, Texas

I sent all my husband's MRI's to doctors , along with a short cover letter. I sent them via a quick delivery method that required a signature of the doctor.

You can easily research which doctor to send it to simply by calling the Proton Center and asking for "the name of the medical doctor who treats benign brain tumors using Proton Therapy. " Then send a letter with your MRI to that doctor and he and his team might do a case review and give you an opinion as to whether you are a good candidate for this treatment.

At the the Proton Center that we ultimately selected, a team of doctors reviewed our case (for free), and then we got a call with their decision that my husband was a good candidate for Proton Beam Treatment.  Whether they believe you are a good candidate is case-specific.

Even though you already were told that the tumor is too large for other radiation, you may want to consider sending your MRI for a (usually free) medical review at a Proton Center. You don't know what you will discover and it seems worth  a try.

We send you our warmest wishes and sincere hope for a great outcome. Welcome and best to you! :)
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

MMusella

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Re: New to the forum - Just diagnosed two weeks ago
« Reply #20 on: February 13, 2015, 05:45:11 pm »
I am 4weeks post op of a large tumor(all out) '.I have minimal facial weekness that gets better.everyday.I had the translab (13hour of surgery) I just started driving and my life is back to normal..I also dont have hearing in my right side but with the excellent vestibular rehabilitation I have adjusted well..I go back to work in a couple weeks and everything is going good.
40 years old, was diagnosed with a 3.5cm.(right side)AN in Nov, 2014 and having surgery on January 13th 2015, live in upstate NY..had a 13 hour surgery. .100%tumor removal. I did 8 weeks of vestibular rehabilitation and went back to my life and career,  with no side effects :)... life is great!!!