ANA Discussion Forum
General Category => AN Issues => Topic started by: Pattib on July 07, 2015, 06:48:41 am
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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!!
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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
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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?
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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!!
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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?
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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.
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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!
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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.
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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
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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
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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.
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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.
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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.
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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.
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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.
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I was diagnosed in Knoxville on July 6 and spoke with a neurologist. Radiation treatment was suggested and I decided to go for a second opinion at Vanderbilt. This past week I met with Dr. Kyle Weaver and Dr. George Wanna (separately). My AN is almost 2.5cm and has many cysts, so it seems radiation is not a viable option. I haven't made a decision yet, but I think I'll be doing Retrosigmoid/sub-occipital approach. I really liked both doctors and have a sense of trust in their abilities. I'll be making decisions over the next couple weeks.
Good luck with your journey!
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Hi Pattib,
I too was diagnosed last fall with a left AN. It is considered small, less than 1 cm, but I have
very little useful hearing left in the affected ear. I had hoped to be on watch and wait for
the rest of my life, but my second MRI in May showed a bit of growth. I am scheduled for
another MRI in September and my doctor said that if it grew at all I should consider treatment.
I have some slight balance issues, constant hissing in the ear, and the hearing loss.
Like you, I want to be ready with a decision about what sort of treatment would be best and I'm
leaning toward gamma knife. I just turned 60, so our cases sound similar. I wish you the best of
luck as you work through this decision. God bless you!
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Pattib,
I agree with rupert. I have been on W&W for 3 years. My last MRI showed 4mm of growth. My hearing has deteriorated quite a lot. I am 65 and I have to have radiation of some sort sooner then later. If you want to save your hearing you may want to have GK or whatever you choose while it is small. Do your research on it. Positive thoughts and prayers!
Good Luck,
MG
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Thank you all for each of your responses:
GaryWNT: Thank you for your comments. I have heard some very good things about Dr Weaver. Best of luck with whatever decision you make.
Janey: Yes, our cases do sound very similiar. Right now I don't think I am leaning any particular way, just trying to look at each option and determine what I feel is right for me. Best of luck to you as well in your decision making.
MG: Thank you for your comment. I really do want to get as much info as possible so that whatever I decide and whatever the outcome I will at least know that I did all that I could do to inform myself before making the decision. Best of luck in your journey as well.
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I sent my info to House as well and it took almost a month for Dr. Slattery to call me. Dr. Friedman at USC called me within a few days.
Linda
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I've sent my MRI and diagnosis to both USC and House. I have great trust in the two doctors from Vanderbilt, but I thought it was worth the effort to send off the discs and ask for another opinion. I've been researching retrosigmoid surgery. It seems to be used less frequently than other treatments. My AN is 2.3x2.1. I have some hearing loss in the AN ear, tinitus, and very subtle balance issues. No headaches or other symptoms. However, the AN is pressing on the brain stem. It' so difficult knowing there's something in there causing this and wanting it out . . . but the after effects of the surgery are frightening!
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Thank you Linda for your comment. I did receive a response from the House Clinic. It took about 10 days to hear back from them. I also sent the MRI to Dr. Friedman and received a response back from him in about 3 days.
GaryWNT with dealing with this AN thing it is extremely important to have great faith in your doctor's for sure. For me I am looking to get as much info that I can which includes opinions of other professionals in this field whether it be surgery or radiation. The after effects of surgery are as you said frightening to say the least but I'm hoping with the selection of what I feel would be the right procedure for me combined with the right doctors that some of the fright can be lessened somewhat. At least that is what I'm hoping for. I think that you did the right thing by sending your disc to the House and USC. I don't feel it hurts to get another opinion for sure.
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Patti,
In re your question about Vandy and GK experience, I asked that exact question to Rivas and Thompson. If I remember correctly both said that they do around 30-40 per year. I could be remembering that wrong but the takeaway for me was that if I had the GK I was going to go elsewhere.....not near the experience that I was looking for. They have a clear preference for handling with surgery. If I do the GK then I'm going to UPMC and Dr. Lunsford.
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Patti,
In re your question about Vandy and GK experience, I asked that exact question to Rivas and Thompson. If I remember correctly both said that they do around 30-40 per year. I could be remembering that wrong but the takeaway for me was that if I had the GK I was going to go elsewhere.....not near the experience that I was looking for. They have a clear preference for handling with surgery. If I do the GK then I'm going to UPMC and Dr. Lunsford.
Where's the like button. :)
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I sent my MRI to House Clinic on Monday via overnight . . . got a call last evening (Tuesday) from Dr. Luxford. I had a very good conversation with him and he offered a call-back if I had further questions. I am amazed and impressed with the lightening fast response to my request for a consultation!
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MG
I appreciate your comments. I certainly understand the importance of wanting to do something about the AN while it is still considered small enough. It's that "what to do" thing both with when is the right time and what is the right method that I am struggling with and trying to get as much info as I can.
Mac84
Thank you. I believe the patient coordinator had told me when I was there for the office visits that she would be able to provide some information for me in terms of how many AN's per year had been done and what was the general outcome (issues after surgery). So I believe I'll see if she can provide me the number of radiation treatments that they do annually along with a general outcome. I too would want to feel that i have chosen the right place and Dr's for radiation if that's where this goes.
Rupert
I tried to find the like button but I couldn't find it either!
GaryWNT
Yes I too have found it surprising how both the House & USC have responded and have been willing to take the time and speak with me on my issues. It took about 10 days for the House to get back to me and 3 days for USC, but just the thought that they are willing to review and discuss the MRI with me I find amazing in it's own.
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I also sent my information to USC. Dr. Friedman called me this afternoon! It was comforting to
know that his opinion on my situation matched what my local physician advises. I too find it amazing
that a well-known physician across the country would consult with me, answer questions, and
offer to give me his opinion again after my next MRI. He was awesome, and without this website
I would not even have known such a consult was possible.
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Janey I'm glad to hear that Dr Friedman was of the same opinion as your local doctor. Certainly gives one a sense of confidence in how one is handling their issues. I am very grateful for finding this site. It has provided so much information as well as support which is so needed.