Newly Diagnosed and Overwhelmed

[Pattib]

Hello everyone,  I have recently been diagnosed with a lft sided acoustic Schwannoma and am feeling over whelmed with everything that I have been reading about this.  On June  26th, my ENT gave me the news.  He was unable to give me a size or location but provided a name of a neur otologist in Knoxville for me to see.  In trying to make an appointment, I found that the earliest I would be able to meet with him would be mid August.  Getting frightened and panicking I knew I had to have more information on just what this AN thing was about.   

I am so grateful I found this forum.  The information that is found here is truly amazing.  I had absolutely no idea what all was involved with this AN thing.  I must say there was a lot of information that I read that I was not emotionally ready for however, it is always best to know what you are dealing with no matter what the circumstances. 

After reading much info on this forum about getting more than one opinion and since my ENT was unable to give me a size or location,  I decided it might be in my best interest to goto Vanderbuilt for a consultation while in wait to see the Dr in Knoxville.  I am scheduled to go to Vanderbuilt next week.  Thanks to this forum, I also sent out the MRI & Audiogram to the House Clinic as so many have advised.  I sent it out 1 wk ago, next day air, and have not heard anything yet?  Is there any timeframe on hearing from them?   I’m just wondering whether I need to check with the post office to make sure that the package made it to the destination. 

Right now I'm just trying to fight the anxiety of not knowing what the MRI is saying and what it all means.  On the written results of my MRI  the "Impression:" only states "left sided acoustic Schwannoma".  Another statement on the MRI results reads  "There is a single subcentimeter focus of TV signal in the white matter of the left centrum semiovale".  Another statement reads "There is linear enhancement within the left IAC on the post contrast images consistent with acoustic Schwannoma".  Should anyone know what any of that might mean and care to comment I would appreciate it.

Sorry for the long post.  Thank you all for sharing your information and being there!!

[CHD63]

Hi Pattib and welcome to this forum .....

Most of us can relate completely to the feeling of being blind-sided and overwhelmed upon hearing the diagnosis of having an acoustic neuroma (aka vestibular schwannoma).  Take a deep breath.  We are all here to support you as you walk through the decision-making process ..... which, in many ways, is the worst part.

You are off to a good start with seeking additional opinions.  It helps to be able to make the best decision regarding treatment and/or which kind of treatment.

In the meantime, if you have not already done so, send for the free informational materials from the ANA.  There is a wealth of accurate information in the materials.  See:  https://www.anausa.org/contact-us

Although I went to House four years ago for my surgery (when Dr. Friedman was still there), I would also urge you to send your MRI CD to Dr. Rick Friedman at USC for a free consultation.  He will personally call you, usually within 24 hours of receiving your materials.  See:  http://www.keckmedicine.org/doctor/rick-a-friedman/

Many thoughts and prayers.

Clarice

[arizonajack]

Right now I'm just trying to fight the anxiety of not knowing what the MRI is saying and what it all means.  On the written results of my MRI  the "Impression:" only states "left sided acoustic Schwannoma".  Another statement on the MRI results reads  "There is a single subcentimeter focus of TV signal in the white matter of the left centrum semiovale".  Another statement reads "There is linear enhancement within the left IAC on the post contrast images consistent with acoustic Schwannoma".  Should anyone know what any of that might mean and care to comment I would appreciate it.

Hi Pattib,

Welcome to the club that nobody wants to be a member of. You'll get lots of support and information here.

When I sent my MRI to House a few years ago it took about a week to be contacted so you ought to hear from one of the doctors within the next few days.

As for the terminology you posted:

"left sided acoustic Schwannoma"

That one's self explanatory. :-)

"There is a single subcentimeter focus of TV signal in the white matter of the left centrum semiovale". 

I've never seen that in any of my reports so all I can say about that is "subcentimeter" means less than one centimeter. A centimeter is about 3/8 of an inch.

"There is linear enhancement within the left IAC on the post contrast images consistent with acoustic Schwannoma". 

That's the easy one. IAC is the bony Internal Auditory Canal where most ANs get started.

Check out the following article that I posted the other day. It gives you all the basics in an easy-to-read format.

http://www.stlukeshospital.com/workfiles/patient_resources/hospitals/acoustic_neuroma.pdf

If you have (or can get) the CD with your MRI images you can compare your images with other AN MRI images on the internet so you can see the location and size.

https://www.google.com/search?safe=off&site=&tbm=isch&source=hp&biw=1000&bih=586&q=acoustic+neuroma+mri&oq=acoustic+neuroma+mri&gs_l=img.3..0l6j0i30j0i5i30j0i8i30j0i24.2702.6846.0.7111.20.12.0.8.8.0.100.1053.11j1.12.0....0...1ac.1.64.img..0.20.1143.87DOD9Nbnik

MRI images often have a centimeter scale on two sides of the image so you can get an idea of two of the measurements.

A small AN of less than one centimeter could look like this one:

http://www.dizziness-and-balance.com/disorders/tumors/images/acoustics/acoustic%20r0002-cropped.jpg

Were you having any symptoms that prompted the MRI?

[Pattib]

Actually it was back in Oct 2014 that I had gone into my ENT for very loud hissing in my left ear.  He gave me some medication at that time and it seemed to help at least making the tinnitus not be so loud.  I needed to go to my ENT for my checkup regarding my allergies in June and that's when he asked me about the tinnitus.  I actually had to stop and listen but yes I could still hear the hissing in the left ear.  That prompted the MRI.  I have had some dizziness once in a while but that seems to be when I get up suddenly  or turn my head quickly to one side or the other.  Never gave it two thoughts.  I have had some tingling in my left cheek but I only started to feel that since I found out about the AN and started reading about it.  One of my big fears would be the involvement of the facial nerve.  I can't help but wonder if my nervousness about this whole issue isn't causing me to feel things that are not contributed to the AN.   

Thank you Arizonjack and Clarice for your responses.  It is so helpful to be able to reach out to others in this time of uncertainly.  I am so gratefull!!

[PaulW]

I am not a medical professional so please do not accept anything I say as true..
"There is linear enhancement within the left IAC on the post contrast images consistent with acoustic Schwannoma".  The good news the IAC is small so your AN is small.. Probably 10mm or less. A good size for Watch and Wait. So it's not urgent..
The other enhancement can be a lot of things, most are nothing to worry about.
Migraine is the most common cause. Infection as well. i wouldn't worry about that unless you have other problems. It would appear from the report that the radiologist has made no attempt to identify what the "focus" is.. White spots are common especially as we get older, and very common for migraine sufferers. Do you get migraines?

[Pattib]

I do get headaches often enough however I have always felt they were more of tension headaches.   Your comments Paulw are very welcoming.  Thank you for the info.
I am certainly hoping that the AN is small where there are options available in terms of treatment.

I have got to say, I've been so focused (anxious) on trying to retrieve information on the AN that in my last post, when AJ asked if I had any symptoms, funny how I neglected to mention that my hearing in my left ear has certainly been affected as well.  I can hear but what I hear seems to have a tinny sound to it. 

[mac84]

Pattib,

I'm in Alabama but travel to Vanderbilt and am on the Watch and Wait. They see a lot of patients like us over at Vandy and I've been pleased to have found them. I see Dr. Alejandro Rivas there and also Dr. Reid Thompson. 

Let us know how it goes!

[Pattib]

It's really nice to hear that Vandy sees alot of patients with this.  I'm scheduled to see Dr Revis and Dr Thompson this coming week.  I can't say that I'm looking forward to it but I'm certainly anxious to hear their opinions on what to do with this.  I'm hoping just hearing something will at least help with the nervousness I'm experiencing.  In your post you say that you are on the wait and watch.  May I ask when you first met with these doctors and when they want to see you next?  Thank you Mac84  for commenting.  It's conforting to know that someone has had some experience with these doctors.

[mac84]

Pattib,

I was first diagnosed in October 2014 and saw Dr. Rivas in November 2014. We planned an MRI for this past April 2015 and there was essentially no change so now am scheduled to go back April 2016.  Just the usual wonky head occasionally and then tinnitus each day.  Rivas is very quiet but will spend lots of time with you. Great bedside manner from Dr. Thompson as well. Each will sit with you and take a look at the MRI and make a plan. I predict you'll feel more at ease when you talk to them!

Tell Dr. Thompson that I was the one w/ the crazy socks...he'll remember them.   His staff suggested he get on that bandwagon. He and I are roughly the same age (49) so I told him he may as well not dress like an old man. HA

[Pattib]

Hi Mac84 I have seen both Dr Thomson and Dr Revis this week.  Unfortunately I did not see your post prior to seeing either doctor so I didn't ask him about the socKS lol.

 Right now they have put me on a wait and watch.  I'm  being told that the size is small enough to wait and watch.  Size they are giving me is 1.5 cm x .5.  Dr Revis told me that sometimes they don't grow and he wanted to wait and watch to see what this thing was going to do.  ( no name for tis thing yet). )Unfortunately he told me if a surgery was indicated and chosen,  I would loose my hearing in the left ear.  I believe that radiation would be an option.  Right now it looks like I've got some good hearing out of the AN ear.  However where this thing is located it doesn't allow for any procedure to remove it outside of loosing the hearing in that ear according to Dr Revis.  I had sent my MRI to the House Clinic and their recommendation also is to watch and wait also.  They have said that radiation would be a way to go.  I'm 63 soon to be 64 and obviously matters.

  I'm grateful I've been given time to look at whatever options are there

Thank you for responding.   Any comments are appreciated.

  I will hope it doesn't grow and I hope and pray that during this time that I will get a direction I will be comfortable with.  As I'm sure everyone on this site can relate deck on making on something like this  should I have to make that decision.  Again right now I'm grateful for having

[rupert]

A couple of comments.  I don't think the doctor should be telling you what he wants.  I believe he should present the facts and figures so to speak and the treatment options available and it should be your decision on when,  and which treatment should take place.  These things can certainly grow and after years of watching these forums I can say there is a better chance of successful treatment,  and less complications when these things are smaller.  I know the watch and wait are a courageous group, but it is just my opinion that it should be used only as a time to research the different treatment options.  IE, the sooner you get treated the better. Again this is just my opinion.
Good luck to you.

[Pattib]

Thank you for your comments Rupert.  I do intend to use this time to get as much information that I can so if there comes a day that I'm told it is growing I will have made my decision as to what I want to do and move forward with it.

[rupert]

I'm sorry you missed my point.     Your statement that you hope it doesn't grow led me to my comment.  If your hoping it doesn't grow, why wait on a treatment?  Growth is likely at some point. When and how much, no one  could ever predict.  Treatment when smaller usually produces better outcomes and less complications.  I will add that at your age and size of the AN,  radiation would certainly be an option.  Please don't think I'm advocating rushing into anything. You need to do your research but, once that is done I would  get it taken care of before more choices of treatment fall away.  Just my opinion disclaimer.

[Pattib]

I understand what you are saying Rupert and I do feel like I would rather be doing something now rather than wait.  I guess because all three doctors have told me in their opinions the best thing to do for right now is to wait and watch because 30 to 40% of these things don't grow in people of my age so it kinda makes sense to wait a bit while I'm trying to gather information.  Right now my thinking is that when I go for the next mri (whether it be 6 months or sooner),  I would like to have made my decision on what I want to do and then move forward whether there's any growth or not.   I am not really  looking at staying on the wait and watch.  I'm just trying to understand the pros and cons of the procedures that are available and which one would give me the best outcome.  Thank you again Rupert for your comments.  They are much appreciated.

[Pattib]

In beginning to look at options on treatment for my AN, I'm wondering whether anyone has any information about whether Vanderbuilt has a vast amount of experience in GK.   Any comments are appreciated.