Author Topic: Opinions  (Read 3002 times)

KarenJ

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Opinions
« on: April 25, 2017, 03:06:39 pm »
Hello, I am looking for some opinions on treatment options and others' experiences.  Here is my story: 

I was recently diagnosed with an Acoustic Neuroma after sudden hearing loss in one ear, and the dizziness, etc... that comes along with that.  For 1 1/2 years I told my primary doctor that my ears started ringing, and at each 3 month appointment I told him it was getting progressively worse.  At my latest appoint with him I explained that the ringing was so loud I can't hear TV, I can't fall asleep, can't concentrate at work, I was dizzy, and a bit nauseous and have even missed work because of it.   He basically ignored it each time then finally said 'we should probably have you see an ENT.  The referral never came. 

On January 22nd this year I suddenly lost my hearing in my right hear.  I started calling around for doctors myself, but no one could see me for several months.  Everyone I called thought I had wax buildup, until I went to Urgent Care.  There they discovered there was no fluid or wax and said I needed to see an ENT.  Finally an ENT gave me an appointment, eventually got an MRI, and was diagnosed with a 9mm x 6mm tumor.  I was given a dose of steroids which helped a little with my dizziness and nausea.  Almost 2 months after that I noticed that I can hear slightly in that ear, but sounds like a blown speaker.  This ENT referred me to a specialist.

I went to see Dr. Woods in Syracuse, NY.  He educated me a little on my MRI, and treatment options.  He only does Radiation or Translabyrinthine surgery.  He was thorough in his explanation, but he never really answered me on how many AN's he has treated etc... He also told me that my hearing will never be restored to anything better than it is right now.  Is that true?

I know I need to get more opinions from neurosurgeons who are experienced in more than those 2 types of treatments...
Can anyone share their experience?  I'm having a hard time deciding if surgery is best or radiation.  A very nice man gave me the name of his doctor in NYC area, and I might call him as well.  But then I'm thinking maybe my tumor is small enough that I don't need surgery?  But then I don't like what this doctor said about Radiation either...he said that once you have that you can never have surgery?  I'm so confused...

Again my tumor was measured at 9mm x 6mm and I appreciate any advice or information anyone cares to share... thanks.


gary.s

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Re: Opinions
« Reply #1 on: April 25, 2017, 06:52:59 pm »
Hi KarenJ,

A large number of us are in a group called Watch and Wait. Our tumors are small enough that we can have additional MRI's over time to see if the tumor is growing or not. My tumor is 1.6 cm x 1.2 cm and I am in the Watch and Wait group. My next MRI will be on May 8 to determine if any change has occurred. I have lost most of my hearing on the right side, have dizzy spells once in awhile, and pressure on the side of my bad ear.

It is important to see a neurosurgeon who deals with acoustic neuromas. Going to a major neurological clinic/hospital is the best bet. I live in Phoenix, AZ and we have two hospitals that deal with AN's, the Mayo Clinic and Barrow Neurological Institute. They are some of the best in the SW USA.

Surgery and radiation both have their side effects. Depending on how large the tumor, where it is located, and symptoms, a neurosurgeon would tell you what the best treatment would be. Hope this was helpful.
1.70 cm x 2.07 cm AN on the right side
CK April 16-20, 2018 at Barrow Neurological Institute

ANSydney

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Re: Opinions
« Reply #2 on: April 25, 2017, 08:56:57 pm »
Karen,

Welcome to the club that nobody wants to be a member of, but everyone is friendly.

Your tumor at 0.9 x 0.6 cm is small. In some countries you would be put on wait and watch, however the US seems to prefer the surgery route. If you want to keep your hearing for as long as possible, observation has the best hearing outcomes ( https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf ).

You can have surgery after radiosurgery. Some neurosurgeons say its a more difficult operation, some say there is no difference. I personally feel that if you find a neurosurgeon who says there is no difference, then go for that option if need be.

“The best treatment is no treatment, if you can do it”. Dr Michael McKenna (https://www.anausa.org/resources/videos/support-group-video-library)



KarenJ

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Re: Opinions
« Reply #3 on: April 28, 2017, 11:58:46 am »
Just wanted to thank you both for the responses.  I can't even decide on dinner at at restaurant so this is a difficult decision!  I'm just very sick of being dizzy and deaf... Since the doctor told me I can't get any hearing back, I guess I'm not in a hurry, but I need to get appointments with other doctors for a few more opinions I guess...

TomB66

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Re: Opinions
« Reply #4 on: April 29, 2017, 03:06:48 pm »
Hi Karen. 
I live in Rochester and had my AN removed at Strong.  There are several factors that can come into play when dealing with an AN.  Size, location, and age seem to be what doctors will look at.  Even though my AN was within limits for radiation I chose surgery.  The location and surgical option provided me a chance to retain hearing.  Prior to my surgery, I did attend an Acoustic Neuroma Support Group Meeting here.  I learned quite a bit at that meeting. 
I am a current co-leader of our group.  If you ever want to learn more about our group, feel free to look us up on the AN page under support groups.  You can find my contact info there.  We are here to support you!
« Last Edit: April 29, 2017, 07:03:07 pm by TomB66 »
1.6cm retrosigmoid, 10/1/2015.  Living the dream....

Blw

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Re: Opinions
« Reply #5 on: April 29, 2017, 09:27:02 pm »
Keep reading this site. Lots to learn, and your opinion is going to go back and forth as you learn more, but that is ok. First, whatever you do, look for places that are actually acoustic neuroma centers. You want people who have done a lot of these and if they won't tell you how many, move on. Your first doctor clearly screwed up. I was lucky since I went to a doctor who ran a large ear clinic and he ran every test (not really happy about it at first) they had, but he diagnosed it right away. To treat, after considering the different approaches, I looked up the best doctors for each approach (depends a lot on your insurance). Your age will be a big factor. If you are young (less that 50) most people will recommend surgery because even though there is lots of data on 10 year control for radiation (it is excellent), there is not as much data on 15-20 or longer. You don't want these things coming back because treatment is harder by any method. The major treatments are surgery and the best surgeons are in LA (House clinic, Dr. Friedman), but other places are excellent, and radiation. There are generally three types of radiation, Gamma knife (the oldest), cyber knife (very recent) and proton therapy (newest). Gamma knife has an outstanding track record, with 40 years of data. Cyber knife has very similar outcomes in terms of control (>90%), and is a little easier to take as there is not a head frame involved, and the imaging is a little different. Proton therapy is very new, and it is something I would be inclined to let others go first until there is substantial data. For gamma knife, one of the best places in the world is University of Pittsburgh (Dr. Lunsford, trained with the inventor), which may be close to you.  For Cyber knife, go to Stanford and Dr. Chang. Not sure who the expert is on Proton therapy. But each of those doctors has been discussed here at length so just search the threads.

KarenJ

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Re: Opinions
« Reply #6 on: June 04, 2017, 08:18:59 am »
Thank you everyone for your replies.  I'm still in the 'deciding' stage.  Also I found out I won't get paid while I'm out of work, if I decide to have surgery.  So, that is serious!  I also wonder how to afford travel expenses if I want the better AN centers.  Does insurance cover that? 

Cityview

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Re: Opinions
« Reply #7 on: June 04, 2017, 09:13:25 am »
Watch and wait is an option with one that size. If you want surgery there are great doctors in NYC as well as LA.(or even other places) 

Insurance does not cover travel expenses.

If you want to travel you need to have insurance that will cover the providers you want.

I think you might have a good amount of time to figure things out without putting yourself in any danger over it.

recovery time seems to vary case by case so it's good to plan for some time off in the case of surgery.

In any event, good luck with your decision.

« Last Edit: June 04, 2017, 09:25:21 am by Cityview »
Small AN
Successful watch and wait for over 4 years!

EricC

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Re: Opinions
« Reply #8 on: June 05, 2017, 09:14:40 am »
I'm watch and wait for about 3yrs now.  I'm lucky enough to work for the University of Washington, which is one of the better medical schools in the world.  I happen to have an inhouse insurance program and take advantage of some really cool doctors.  I also have a small tumor but its all about placement.  My hearing went fast as its on my cochlea.  My neurosurgeon told me that when when I start getting dizzy or when my hearing is 100% gone, then its time to cut it out.  Sounds like you are pretty miserable.  Watch and wait is really for people that are not having bad complications. 

If you are happy with your surgeon then great.  NYC and Boston both have top notch neurosurgery programs.  Depending on your insurance, shop around.  I went through 2 other surgeons before I settled with my current one. 
4.6 x 3.4 x 2.9 mm (2017)
4.3 x 2.4x 2.5 mm (2016)
3.9 x 2.1 x 2.5 mm (2015)

Dabenefi

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Re: Opinions
« Reply #9 on: June 28, 2017, 11:45:48 am »
Hi, I've just received my diagnosis of an AN and mine is the exact same size as yours, .9 cm x .6 cm. I had no other symptoms other than a pop in my left ear and sudden hearing loss. Called my ENT and saw him two days later. He said it wasn't stopped up and did a hearing test which confirmed no serviceable hearing in that ear. He also ordered an MRI and gave me a round of steroids. After about four days my hearing came back, starting with loud ringing and sounds first. I went back to get my MRI results and he also retested my hearing. My hearing is back to the normal range but I have a constant ringing in that ear, not as loud as it was initially. I'm now seeking options for treatment and doctors too. I am a 55 years old and otherwise very healthy.

KarenJ

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Re: Opinions
« Reply #10 on: January 26, 2018, 01:25:34 pm »
I just revisited this discussion.  I decided not to decide right away!  But here I am, 1 year after my diagnosis, and I made an appointment with a neurosurgeon,  Dr. Deshaies,  in Syracuse.  I'm going to see what he has to say, perhaps I'll need another MRI to see if it's growing?  Anyway, my symptoms are sometimes bad, I get very dizzy or "wonky" sometimes, I notice it especially if I don't get enough sleep or if I'm very active (walking around, bending over, etc...), or in narrow dark hallways etc.. It's bad in the mornings a lot too.  My tinnitus is extremely loud all the time, and I feel like I'm in a fog a LOT of the time.   I get very tired doing normal things like housework etc...And after working all day I am extremely tired when I get home.   I work in Information Technology and sometimes it's very difficult for me to do my job.  I was diagnosed because I had sudden hearing loss in my right ear.  But I did get a lot of hearing back for some reason - Yay!!   Anyway, I'm really sick of feeling dizzy, wonky, foggy, etc... I worry about the symptoms getting worse and finding it difficult to work, drive etc...
Just venting I guess.  I'll see what the Syracuse doctor has to say... thanks for listening...

Kjayhill

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Re: Opinions
« Reply #11 on: February 05, 2018, 10:23:00 am »
Hi,
I also work in Information Technology and I was struggling when I was first diagnosed.  I had a very small AN but it was irritated and I had constant vertigo, tinnitus and wonky head.   I chose to have surgery immediately at Duke in North Carolina.   However, I ended up with a cancerous thyroid nodule and had to get it removed prior to any brain surgeries.
Long story short, I am a strong believer that you will know when the time is right for you to come off of your watch and wait.   For me, my quality of life was deteriorating so there was no other choice in my mind.  I am now 11 months post op from Middle Fossa and I have recovered fantastically.   I  was glad to get the Middle Fossa as there were such great chances of saving my hearing.  Good luck to you in your upcoming visit!
Kathy
Kind Regards,
Kathy

AN Warrior since March 28, 2017
(Middle Fossa)
PONTO BAHA since November, 2017

KarenJ

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Re: Opinions
« Reply #12 on: February 09, 2018, 01:51:26 pm »
Thanks for this post.  It helps me to hear what others are deciding or have been through.  And I'm sorry for all you've gone through... What's that saying?  "... I complained about my shoes until I met a man with no feet..? "  I that is?  The more I hear about others, the more I feel like that...I'm pretty lucky considering...