ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: jtwarrin5 on December 29, 2014, 08:49:53 pm
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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.
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Hi jtwarrin5 and welcome to this forum .....
I am glad you found us and the wealth of accurate information on the anausa.org website.
There are several of us currently active on the discussion forum who are professional musicians so we can identify with your valid concerns over the possibility of losing your hearing.
First question I have is: do you still have good hearing in your AN ear? If so, you may want to seriously consider looking for the most experienced AN treating physicians you can find to maximize the chances of maintaining your hearing.
Many thoughts and prayers as you walk through the treatment decision-making process.
Clarice
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Thanks for the welcome! I still have decent hearing in my AN side. Voice recognition is worse than the right side. I prefer to use the cell phone on the right side now, because I have to listen with such focus with my left ear. In loud areas, I struggle to her what my wife is saying, if she speaks in my left ear.
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I have to listen with such focus with my left ear. In loud areas, I struggle to her what my wife is saying, if she speaks in my left ear.
That's how my AN loss of hearing (right side) progressed and my tumor was a shade less than half the size of yours.
I thought it was age creeping up on me (I was 65) because both my parents had hearing issues as they got older.
One day I realized that voice recognition in my right ear was about 90% gone and by the time I was diagnosed it was 100% gone.
Even if surgery can preserve what's left of your hearing, you'll still need a hearing aid and may eventually lose the hearing in that ear completely (just being realistic) in spite of the surgeon's efforts. For that reason, you might also want to look into the possibility of radiation (gamma knife or cyber knife) as an alternative to surgery.
I'm almost two years post gamma knife and, other than still being deaf in my right ear, I am free of symptoms.
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HI I am CMC but you can call me Tina and I live in Michigan. I recently posted on watch n wait status for the first time.
I thought I would share my experience with Michigan Ear Institute. The doctor there left me feeling very confused and uneasy. After several long visits I made the decision to look elsewhere. I went to a local anausa support group meeting and got several referrals from patients who had very good results at the University of Michigan. I am now being supervised by Dr. Steven Telian at U of M and will continue to wait as long as my tumor isnt growing and I can maintain a semi normal lifestyle. If the time comes I have already decided surgery. They work as a team and I really felt like that place has their **** together lol. You will know what I mean if you are able to compare the two places.
While making decisions keep in mind your age, lifestyle, tumor growth rate and current symptoms. I say this because surgery and/or radiation may have same result as if left alone. For me at age 43 and a financial provider its not the right time to turn my life upside down BUT I am fortunate that the tumor hasnt grown in 5yrs with only some annoying symptoms with fatigue.
Lucky these things grow slowly in most cases. I hope you find the right doctor that makes you feel confident with whatever you decide.
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@arizonajack - thanks for the reply. I've been doing a lot of research on gamma knife after your post and it may be an option for me. We'll see what the appointment brings on January 6th. My AN is 2.1cm x 1.8cm x 1.9cm. Every option has ups and downs. We'll see...Thanks again!
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@CMC - Thanks for the feedback on the Michigan Ear Institute. My wife has a friend that had an AN about six years ago and he went to the MEI. They seem to of had a good experience, but I'm not sure how many places that they went for consultation. It weird that we live in a town of 35000 and my wife and his are friends and we both have an acoustic neuroma. I'll provide feedback after my appointment on January 6th. Btw, who was the doctor that you met with?
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Hi jtwarrin5,
I'm another Gamma Knife advocate and have had great success with the procedure. If it is an option for you, give it some consideration. When I was first diagnosed in 2012, the ENT told me to buy one hearing aid only for my good ear. I was starting to show signs of hearing loss in the high tone range due to age. He said I'd be loosing all hearing in my AN ear so don't waste my money on buying two hearing aids. The first neurosurgeon I met with offered surgery and told me I'd loose all hearing in my AN ear. I then met with a neurosurgeon who offered surgery or GK. I chose GK and still have usable hearing in my AN ear! My AN was 1.8cm when diagnosed. It grew to 2.4 within a year, so I decided to move ahead and have treatment. One year post treatment and it has reduced in size back to 1.8cm and hopefully will continue to shrink. My word recognition has drifted around from 40% down to 10% and back up to 20%. I do wear a hearing aid (Phonak BiCros) which helps tremendously, but at least with having GK, I'm one of the lucky ones who has so far retained some hearing. I expect it will completely go at some point, but for now I still have the benefit of some hearing ability in my AN ear.
You mentioned you have some good and some bad days. That's normal. Things do get much better once you've gone through the consult stage and made your treatment decision. While you will read many posts here of people having problems, there are many of us, who are doing quite well.
Best of luck!
Cathie.
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Hi to answer your question. ..the doctor I saw was Dr. Dennis Bojrab. He may have experience but he was very wishy washy answering questions, in and out of the room, seriously annoying. I spent alot of time there and left feeling like I wasnt letting them touch me with a ten foot pole. I actually felt like I was schooling him. Weird like I was answering my own questions. He then proceeded to dictate his notes on a recorder like I wasnt even there. It was a gut instinct for me which started a huge research journey for me. Soon after I had an audiologist friend tell me not to stay at MEI and rcmd university of Michigan/ Dr. Telian or Dr. Arts. That was later confirmed by several patients I met at a support meeting. Anyway it was night and day experience switching but I guess there is never certainty with brain tumors:/ I hope it goes better for you but still a good idea to get several opinions. Keep us posted! CMC (Tina)
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@ Tina - thanks for sharing your experience at MEI and the doctor's name. I'm seeing Seilesh C. Babu in two days. I'll report back on my experience.
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@ Echo - Thanks for sharing your experience with the gamma knife! I'm really interested in looking into this option. I don't know how much the location of the tumor has to do with gamma knife being an option. I'll be asking all of those questions on January 6th. I appreciate your insight about good and bad days. I'm sure once we meet on Tuesday, I'll have more clarity.
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Well, I had my appointment today and the Dr. Babu classified my tumor as medium to large. He said that it's pressing on cerebellum. I have 50% voice recognition in my left ear, but my ear was in pretty good shape when given the test for tone frequencies. With the location, size and my age, he is not recommended gamma knife and believes that translab procedure. He believes that will provide the greatest opportunity to prevent any facial nerve issues. He is booked for 2.5 months out, so I have to wait a little while.
I have to go back on February 11th, for three test to check balance, facial nerve and some other hearing related issues. I walked away from the appointment feeling very good about Dr. Babu. The only thing that made me feel a little weird (besides the obvious brain surgery) is that they don't put anything over the opening except fat and close it back up. He said that their experience says that the risk of infection is not worth putting the bone back in or using a mesh.
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With my first surgery, translab, they didn't even put in fat....just stapled it up! The incision line filled in somewhat with bone but the bur hole remains unchanged since that surgery....no issue's though.
My second time around I had the fat plug put in
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I am 10 weeks post-op Translab surgery - they used a fat plug to close the opening and it is fine...no issues whatsoever....
Good luck and best wishes for a successful outcome....
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I am 10 weeks post-op Translab surgery - they used a fat plug to close the opening and it is fine...no issues whatsoever....
Good luck and best wishes for a successful outcome....
Thanks for the response. I'm glad to hear that things went well with the fat plug. That was just a little strange for me. With you being 10 weeks post op, how is everything going. I hope you're recovering well.
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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
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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
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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.
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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! :)
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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! :)
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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.