ANA Discussion Forum
General Category => AN Issues => Topic started by: bikerguy on July 07, 2015, 05:30:50 pm
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house of ear , dr. freeman called and said small an, says surgery is the best route. hershey med center dr. says dont worry unless the mri reads over 4mm. that its possible its nothing. just looking for someone who cares enough to study this small thing in my ear!
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Although I did not have my surgery at House I know that they are very well respected. I am not sure how experienced in Acoustic Neuromas the Doctor from Hershey is. Possibly this is a situation where a third opinion would be a great idea for you.
This is hard enough to go through when you know what to do but when you get conflicting advice it is even harder. But I am sure you will find the information you need.
Good luck.
Kerry
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House always recommends surgery. That's what they sell.
I got the same pitch when I sent my MRIs a few years ago.
I'm fortunate to live in Phoenix where the famous Barrow Neurological Institute is located. BNI has an Acoustic Neuroma Center and does both surgery and radiation. I had a consult with a neurosurgeon, a neuro-otologist, and radiation oncologist, reviewed all the options and opted for radiation since I no longer had any hearing on the AN side.
I recommend that you be evaluated by a facility staffed by acoustic neuroma specialists that do both radiation and surgery and explore all of the options.
By the way, it is possible to have tinnitus in both ears and have an AN on one side. I had tinnitus in my good ear for about ten years before it started on the AN side.
Your bilateral tinnitus might have more to do with 28 years working in a noisy environment and might be unrelated to the AN.
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oh, yes! i feel like im being robbed,kicked in the butt, and left out in the cold. did anyone ever hear of anything less then 4mm could be nothing? has to be something in my opinion! i live in pennsylvania. from the research i was doing, pittsburg or philadelphia is the better hospitals around for treating these an's. research, research and more research!!!
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Obviously, the Hershey Med Ctr Dr is not the one you should be consulting about this.
Mine was under a centimeter and the shape of a Tic Tac when I was diagnosed and it took out my hearing and caused me balance issues.
Even a small AN is problematic.
Check out this facility that was listed on the ANA website:
Jefferson's Multidisciplinary Brain Tumor Center
909 Walnut Street, 2nd Floor
Philadelphia PA 19107
Telephone: 215-955-7000
Fax: 215-503-7038
Website: www.jefferson.edu/neurosurgery
Statement about the Center
Our multidisciplinary team has worked together for over 18 years in the management of acoustic tumors. We believe in the integrated care of acoustic tumor patients, utilizing the most suitable tool(s) available. The team evaluates between 40 to 60 acoustic tumor patients a year with a cumulative experience of over 750 acoustic tumor patients. Among our innovations:
- William A. Buchheit was the first to establish neurophysiologic monitoring of the VIIth nerve during acoustic neuroma surgery.
- Development and ongoing refinement of fractionated stereotactic radiotherapy.
https://www.anausa.org/resources/medical-resources/medical-center-directory/39-menu-articles/medical-centers-1/165-jeffersons-multidisciplinary-brain-tumor-center
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Hi Bikerguy!
Definitely check out Pittsburgh, they have an outstanding reputation and are mentioned many times on this forum. I know of two Canadians who travelled there for their treatment.
If you haven't already done so, listen to the Webinars on this site. They were extremely helpful in providing me with info when I was going through the early decision process.
Cathie
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I live in Philadelphia. I have a 1.2 cm AN right side. Minor hearing loss, balance issues and tinnitus. I went to see Dr. David Andrews at Jefferson Hospital. He said I didn't need surgery and recommended radiation (I should add that he is the Director of the Stereotactic Radiation Dept, so I am not surprised he told me I should have radiation). Anyway, I was all set to have radiation and at the last minute I changed my mind for multiple reasons and have decided to go to USC in LosAngeles with Drs. Friedman/Gionatta. My surgery is scheduled for August 19. I know Phila has great hospitals (I work in one), but I feel that they just don't do enough of these surgeries on a weekly basis for my comfort level. My feeling was, if I am going to have this thing taken out, I want it taken out by someone who can pretty much do it with his eyes closed.
If you should decide on surgery, you must find out how many AN surgeries they do per week. Other neuro surgeries don't count. Same goes for radiation.
Good luck.
Linda
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thanks for the replies! was wondering if jefferson hospital has a dr. to where you can send your mri to without a visit? kinda like the losangeles hospital-dr. friedman. was on there site and coulnt find anything but to make an appointment!
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The doctor is right something less than 4mm could be nothing. Saw a friends MRI a while back with a something that was possibly 3mm x3mm x1mm. It was too small to call.. It only appeared on one frame of the MRI and they weren't prepared to diagnose an AN on just a single slice
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now i feel like i'm getting somewhere. PAUL W i need to ask, what was the outcome of your friend? anyone else on here that was diagnosed, then mis diagnosed? i am still on the watch and wait.
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They were never diagnosed because the blip on the MRI was too small.
They had balance issues, which lead to the MRI. I believe the report said possible vestibular schwannoma.
Their balance issues went away.. don't know what happened after that. They haven't contacted our support group again and that was about 4 years ago. So assuming all is well. Mind you even if it did grow at the rate of 0.5mm per year (this is the average rate of growth for AN's inside the Internal Auditory Canal) as opposed to ones outside which grow faster. The tumour would only be 5mm x5mm x 3mm still less than one tic-tac
In my humble opinion, getting your head cut open for something, slow growing and smaller than a tic-tac, just isn't worth the risk.
For hearing and facial nerve preservation they regularly leave behind far bigger chunks.
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From what I've heard about House, 99% of the time they say surgery - because after all surgery is what they do. They are the pioneers of AN surgery and they do lots of them.
Most people with an AN the size you are describing (which is small) have radiation or watch & wait as an option; so I wouldn't rush into surgery.
It's possible there could be something that makes surgery a better decision in your case, but I'd definitely get a 2nd opinion at the very least. Some people get many more opinions; depends on your comfort level.
Jan
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Hi bikerguy .....
See: http://acousticneuroma.keckmedicine.org/ for the address for where to send your MRI, etc. to Dr. Rick Friedman for a free consultation.
Clarice
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i had 5 opinions, opinion 1, neoro dr. lancaster pa. says too small cant be sure what it is. opinion 2 &3 lancaster pa. ent dr.s say my tinnitus is work related and didnt want to hear me talk about an,s!requested counceling. opinion 4 dr. freedman said yes i have an an, said surgery is the best. opinion 5, hershey med center hershey pa said too small, not to worry. really, all i want to know is, if i have this an or i dont! thanks for all your replies!!!
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I don't know if a true "yes or no" answer is available to you. I do have two strong opinions at this point and keep in mind these opinions are not based on any kind of science or great wisdom on my part, they are just my opinion. One, I would discount the the ENTs that are so sure you don't have an AN and that you need "counseling" unless by that they mean some kind of tinnitus retraining therapy. They may be correct that you don't have an AN, but I don't see how they could be so sure. I also wouldn't get my brain cut open at this point with so much uncertainty as to whether you have an AN or not.
Whether you have one or not, at this point, I think WW, also know as "observation" is the way to go. IF you do in fact have an AN, and it grows, it will be apparent over time in subsequent MRI's. If the time comes that you are certain you have an AN, you can THEN decide on the best course of treatment. Keep in mind I am WW myself, that I support the idea of WW and am somewhat bias in that regard.
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Confusion often happens because too many people seem to think that there is one single answer to a problem. When one gets different opinions about what should be done, that only reflects the background and training of that particular physician. There is rarely one single answer to any problem and people need to see that and not become confused because no one is giving them one answer. The saying that if you only have a hammer, you tend to see everything as a nail applies to physicians also. Each physician will recommend options that he is most familiar with, has the most experience with, and is most up to date with. That is only natural. What one needs to do is learn about each treatment option presented, find out about the pros and cons of each, know what the post op affects may be, and determine whether you want to be subjected to that. That answer will be different for everyone and only you can answer that.
One needs to keep in mind the size of an AN does not necessarily correlate to the severity of the symptoms. In other words, small ANs can cause severe symptoms and large ANs can be asymptomatic. A growing AN may also show no symptoms while a non growing AN can exhibit severe symptoms. It is a common recommendation to wait to see if small ANs show growth before undergoing definitive treatment because most physicians rather err on the conservative side. However, watch and wait can be a double edge sword in that if symptoms develop or worsen during this period, those symptoms will likely not go away after treatment, whether it be surgery or radiation.
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WW can be a double edge sword, as can treatment. To suggest otherwise is a bit inaccurate. It is entirely possible to worsen, or bring on new, symptoms through treatment that could have been delayed through WW.
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I was diagnosed in May 2015 with a 3mmx6mm AN Left Side. I have had severe hearing loss in that ear for the last 20 years but never knew why. It has gotten worse recently leaving me with a permanent damage of only 20% hearing left & No directional hearing. They found the Neuroma after I went to the ENT due to waking up one morning and hearing sounds and voices in a distorted form. Things sounded robotic. Like people were talking into a fan. Even my own voice has a vibration and reverb when I speak. My voice sounds raspy to me, like my throat is sore, but does not sound that way to anyone else. The deeper the voice the more reverb I hear and the harder it is for me to make out the words. Music tones sound morphed, like a guitar out of tune. They put me on a round of steroids, couldn't explain it, looked at me like I was nuts and sent me on my way. Finished the steroids, no change, sent me for an MRI, Found the tumor, But said that wasn't why I was hearing the way I was hearing.
I am being treated by a Neurotologist, Dr Hirsh, UPMC Ear Institute, Neurosurgeon Dr Gardner, UPMC, and have my 1st up coming long awaited appointment with Neurologist Dr Lu UPMC on Sept 4th.
My Next MRI is Sept 15th immediately followed by an appointment with Dr Gardner to go over the MRI and schedule my Trans Lab Surgery.
I have done extensive research on these tumors and have 2 other Neuro's going over my case right now. I am well aware that my tumor is quite small compared to some. But I also agree that location can play a huge factor!
My tumor is 3x6mm but sits directly in the internal auditory canal which they are telling me is approx. 1x5mm. So that leaves my facial nerve being completely compressed.
My symptoms are:
Distorted Hearing (Also In my 'Good' ear, and yes, its good, I have had ever test imaginable)
HORRIBLE Migraines, DAILY
Twitching in my left eye, daily. Sneezing and yawning brings on eye spasms.
Quivering of my lip on left side or cheek upon smiling, especially if I'm tired.
Numbness and tingling across my forehead and on the left side of my face and down my neck and shoulder.
Heaviness, dull aching pain, fullness, pressure in my ears/head.
ringing in my ears, both.
My tongue and throat will get numb on occasion on the left side and I will have a difficult time speaking.
My hands are numb (have no idea if this is related)
I am EXHAUSTED!
All of these symptoms can be better or worse depending on the day. If I'm around a lot of noise or over stimulated or tired they will all get worse. If my hearing gets worse (meaning sounds reverbing) it will last several days like that and will only go away if I am not around any noise for a few days. and I mean NO noise... like no radio, no tv, no work, no nothing, and I live in the country so when I say no noise I mean no noise other than the ringing in my ears that comes and goes.
I know this was lengthy but I just wanted to let you know that my tumor is small, at least it was in May, and it is wreaking havoc on me!! I will know Sept 15th if it has gotten any bigger.
I hope you are able to get some answers!
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please keep me informed,an guy! just wish a dr. would take me serious! dont know if i mentioned, i went to my family dr. because of the ringing in my ears are sometimes unbearable. told him i cant sleep, im exhausted and feel like im never again going to have piece and quiet! he gave me prozac and sleeping pills and told me to get use to it! i dont know what to do, im running out of dr.s . i was acually thinking of going to see a psychiatric dr. any thoughts guys?
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First and foremost, tinnitus (ringing in your ears) is literally all in your head. No, that doesn't mean you are crazy - it actually exists - but it's being caused by your brain, not your ears. And while some AN patients have tinnitus, some don't (I am a prime example of this) - so it is NOT necessarily a symptom of an AN. Lots of people with tinnitus don't have ANs.
At the present time there is no cure for tinnitus, but there are things you can do to alleviate it. Changing your diet can be one - eliminating caffeine is one of the suggestions. There are other things you can do, but I never paid much attention since this isn't an "issue" I have. Perhaps Google "tinnitus" - just don't sign up for any cures (they are scams).
The only definitive way to diagnose (or rule out) an AN is with an MRI with gadolinium contrast.
In my experience most ENTs don't know much about ANs - other than what they are. In my case, my ENT knew enough to test my hearing (mine was "diminished"), look in my ear (where he saw nothing) and order an MRI (to see if there was something inside my inner ear canal). He called me and told me the results showed "something" in my inner ear canal and promptly referred me to a neurotologist - which quite frankly was the best thing he ever did for me.
Make sure you're seeing someone who is qualified to treat (and diagnose) an acoustic neuroma. There are some very good suggestions on the ANA's main webpage (they don't come right and recommend anyone - but do list Centers of Excellence and doctors who subscribe to a certain list of AN "rules" that the ANA establishes).
If your AN is small you may want to watch & wait (just make sure you "watch" via the occasional MRI because even though ANs are typically very slow growing not all of them follow this (mine didn't)). It's also very important to opt for treatment sooner rather than later if you find the symptoms you have are getting worse and/or you're experiencing more symptoms. Lots of people W&W for years, but it takes a certain kind of personality to do this. Personally, I'm too much of a worrier and a control freak to be able to watch & wait. I greatly respect those who have the fortitude to do it.
Although I chose surgery, and it was the best choice for me, I have to say that radiation is a great way to treat an AN, especially if it's small.
Sometimes too many opinions muddy your thoughts. I'd discount the doc who wants you to seek "counseling" and find a doctor who does both radiation AND surgery for ANs. Most doc's who treat ANs say surgery or radiation based on what they personally do (if the do surgery, they say surgery; if they do radiation, they say radiation). My neurotologist does both so he gave me the pros and cons of each. He didn't "push" one over the other.
Don't jump into anything - you have time to figure this out. Follow your heart, your head, and your gut. You'll get "there".
Best,
Jan
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Hi Bikerguy,
I have been wondering why you would want to remove, treat or get a definitive answer, on a 3mm dot....
Its just so small.
Now that you have told us you have severe tinnitus, I understand how you are feeling, your reaction and the doctors reactions too.
Tinnitus is annoying, sometimes very annoying... no lets use stronger words totally disabling
My tinnitus shortly after I received radiation was rock concert loud.... It was as annoying and disorientating as the screeching of an indoor burglar alarm... Fortunately it did not last and went away.... You just cant function with a Rock Concert in one ear, and trying to do normal stuff with the other ear
Acoustic Neuroma symptoms can come and go especially when they are very small.
My tinnitus is virtually zero now...
A hearing aid can help, many have tinnitus suppression programs.
As for getting the operation to remove a 3mm Dot..... it probably makes as much sense as Vincent van Gogh cutting off his ears to relieve his meneares symptoms... Seems good in theory.
A course of steroids may help the nerve if it is somehow affected by something... but Steroid use should not be taken lightly.
Good luck hopefully the tinnitus will reduce over time.... mine did.
Has anybody here had tinnitus reduce?
Mine went from minimal pre-treatment, to outrageous, back to virtually zero.
What are other peoples experience with tinnitus pre and post treatment?
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What are other peoples experience with tinnitus pre and post treatment?
Thankfully, I've never had tinnitus. And yes, from all I hear (no pun intended), I consider myself blessed.
Jan