Author Topic: Newly diagnosed with Vestibular Schwannoma (Acoustic Neuroma)  (Read 6928 times)

ChrisG

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Hello All,

I'm a 46 year old male from Scotland living in Gothenburg, Sweden who's just been diagnosed with Vestibular Schwannoma in the left ear. At the moment it only really effects my balance but I've also started noticing a ringing in my ear.

I was a little bit shocked to discover I had a tumour & probably didn't ask all the questions I should have! The doctor said that they will follow a "watch & see" policy & I should let them know if my hearing gets worse. She said that if they have to operate I will lose my hearing. It didn't seem there was any doubt there!

Could anyone help me with any questions I should ask & if it makes any sense to get a second opinion? I guess the first question is to ask what size it is? It seems everyone in this forum was automatically informed this info by their doctor.

Thanks for any comments. I appreciate it.
Chris

ANGuy

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Re: Newly diagnosed with Vestibular Schwannoma (Acoustic Neuroma)
« Reply #1 on: July 07, 2014, 07:59:48 pm »
You and I are in similar circumstances.  I am 47 and was just diagnosed, left ear.  Yes, you need more info.  Size is important, as is just where it is, the shape, what it is up against etc.  I have been able to learn a great deal about these things generally, but I also learned that that doesn't mean much about mine specifically.  For example, mine is "1 cm", yet I have some symptoms, while others don't have symptoms until they are 3 cm or more.  So it's not just about size.

I am having my records forwarded to Duke University as it is only a few hours away by car and they have a lot of expertise in this field.  I need to see my MRI and I want someone to tell me, as best they can, where mine is and how that effects the outcomes of surgery.  The placement of these things matters a lot as to whether it is in the canal, or closer to the brain etc.

I believe you need this kind of info to make your decision as well.  One thing that is weighing on me is that apparently your symptoms don't get better after surgery.  In other words, the surgery arrests the symptoms where they are, so you might not want to wait until symptoms get worse.  On the other hand, these things may take a decade or more to get big enough to need surgery.  So, by waiting, you are POSSIBLY giving yourself ten years of relatively healthy living before you have to deal with possible complications of surgery. 

In my case, I have two young children.  In ten years my son will be a 200 pound strapping man who could help me down steps, in and out of a car, etc if I have a rough recovery.  Right now, I would just be one more person needing care that my wife would have to deal with, in addition to loosing me for a period of time as a partner in the raising of our children.

Here is a link with in depth information that I found helpful.   It can be discouraging reading this stuff, but there is a lot to learn from it.  Read it in small doses so you don't get too worked up over all of this.  This is a very "glass half full" situation.  Yes, we have a "brain tumor", but, we have the luxury of being able to learn about it and plan solutions.  The outcomes of the various options are generally very good.  Things could be a lot worse.  Think about soldiers that literally get blown up and the head injuries they sustain.  Then see how much many of them are able to recover their quality of life after sustaining something that compromises their brain much more than what we are facing.

Nobody responded to my thread either, which is a bit discouraging.  But, with you and I in the same boat, it might make it a litle easier to navigate our way through some of this.

In short, I would definitely get a second opinion.

http://emedicine.medscape.com/article/882876-overview
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

jaylogs

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Re: Newly diagnosed with Vestibular Schwannoma (Acoustic Neuroma)
« Reply #2 on: July 07, 2014, 09:18:45 pm »
Hi Chris, and welcome to our little club!  I'm sorry you had to find it but you'll be glad you did!  This website is one of people who all have had or are having an experience with an AN.  We are not doctors, so just bear that in mind.  You said you are from Scotland, there's been a few people on here that have come from there...I suggest you do a search for "scotland" and see what turns up... Although I don't remember anyone that lives in Sweden have been on  here, but you never know!

One of the more important things to know about your AN is what size it is, because obviously the bigger they are the more problems it can cause.  And the bigger it is, the less options you have.  My An was 8mm, so it's considered small.  I had a lot of time to weigh my options.  I would think that if your physician suggests watching and waiting, that your AN is indeed small enough to do so.  But as ANGuy suggests, it is always good to get another opinion or two.  Although to be fair, I got three different opinions, one was for Middle Fossa and two were for Trans Lab (I went with Middle Fossa).  I didn't even consider radiosurgery, I wanted that bugger out NOW!  So just get as much education as you can, weigh your options and then when you do make your decision, if it feels good, then you know it was the right one! Take care and let us know how it goes! Good luck!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ChrisG

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Re: Newly diagnosed with Vestibular Schwannoma (Acoustic Neuroma)
« Reply #3 on: July 21, 2014, 11:21:18 am »
Hi ANGuy/Jay,

Thanks for the advice. I've just got back today from 2 weeks holiday & saw your replies now. Thanks for taking the time.

I will definitely check out more regarding size & location. Sweden closes down in summer so my doctor's not back till the middle of August! In the meantime I'll also look into getting a second, or even third opinion - in Scotland perhaps. I've been living here for 20 years & don't like to generalise on a whole nation, but although Swedes are thorough, logical & practical they're also very slow, would rather discuss than act & really lack any empathy. With most doctors it's like dealing with Spock from Star Trek.

In some ways it's good to finally get a diagnosis because at least you know where you stand. It's a very strange condition because everyone says I look great, as you probably do too, but I don't feel right at all. I've now mastered solid ground but slippy or moving ground (floating jetty's, etc) is a real problem. I already fell over twice whilst on holiday & I'm sure people thought I was just drunk :)

Like you, ANGuy, I worry about surgery and it's frustrating no-one knows why this condition develops, what effects the growth & what day to day actions you can do about it. It would be nice to know if diet, lifestyle, stress has any effect. I have 3 children so will follow your advice & start them on bodybuilding & nursing courses now in preparation for bad case future :) As you mentioned, it could be worse, and I suppose if you were to choose a brain tumour this is the one you would want to have!
Keep me posted on how you're doing & I'll do likewise. Thanks for the link. I'll start working my way through that.

I have to say it helps having a forum like this. I've found out more here than I have from my doctor so far & appreciate guys like you Jay who seem to be a really active member. You're doing a great job. Thanks! I read your blogg & seems you made a more or less full recovery which gives ANGuy & myself some positive outlook for the future.

Thanks to you both & take care.
Chris

CHD63

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Re: Newly diagnosed with Vestibular Schwannoma (Acoustic Neuroma)
« Reply #4 on: July 21, 2014, 02:05:09 pm »
Hi Chris .....

Adding my welcome to this forum, as well.  You will find loads of information here, but remember none of us are trained medical professionals so we are all sharing our personal experiences (some good, some not so good).  Also remember that many patients who have been treated for their acoustic neuromas successfully never post on this forum.

That being said, in your original post you were asking about what questions to ask a doctor.  The ANAUSA has a wonderful resource for possible questions to ask, but of course you will want to think about adding any more that are unique to your particular situation.

Check out:  https://www.anausa.org/pretreatment/questions-for-your-physician

Best wishes.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011