Author Topic: Just diagnosed  (Read 6953 times)

Eeeber35

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Just diagnosed
« on: January 26, 2014, 09:50:18 pm »
I am 41 and was diagnosed with an AN on Thursday. It is 1.8x1.2x1.2cm on my left side. I have hearing loss. Still waiting to meet the surgeon I've been referred to. I have been reading a lot about the different options. I am also overweight and diabetic.

I guess I'm just looking for some advice and insight. 

Thank you.

arizonajack

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Re: Just diagnosed
« Reply #1 on: January 27, 2014, 11:47:18 am »
I am 41 and was diagnosed with an AN on Thursday. It is 1.8x1.2x1.2cm on my left side. I have hearing loss. Still waiting to meet the surgeon I've been referred to

Welcome to the club that nobody wants to be a member of.

What options are you considering? Some go for surgery, some go for radiation. How much hearing have you already lost?

I guess I'm just looking for some advice and insight. 

This is a great place to get both.

Read the stories that other have posted and you'll be amazed at how differently ANs affect people.

I am also overweight and diabetic.

Well, that'll kill you before an AN ever will.

I was overweight and hypertensive and have lost 90+ pounds since last March and I'm still working on it. Feel free to send me a PM and I'd be happy to discuss weight management with you off-site. Of course, I won't give you medical advice. I'll just tell you what I've been doing.


3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

kcarloy

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Re: Just diagnosed
« Reply #2 on: January 27, 2014, 03:57:15 pm »
You have options to consider. Do not feel rushed to make a decision. First make sure the medical people you consider doing treatment  or having surgery with take care of a lot of ANs. In this case you want to be one of a crowd and not the single "big case" they have in a month! There is a lot of great info on this site, some will apply and some not. Good luck in your journey to recovery!

v357139

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Re: Just diagnosed
« Reply #3 on: January 27, 2014, 06:45:43 pm »
I agree with Carloy that experience is very very important.  Also, get several opinions.  Keep in mind that doctors opinions can vary, and some doctors may favor what they are most comfortable with.  At that size, you may have all the options - watch and wait, radiation, or surgery.  Let us know if you have any specific questions.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

lystgl

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Re: Just diagnosed
« Reply #4 on: January 27, 2014, 09:26:53 pm »
I was just diagnosed with one on the left side. 1.4 X 1.4 X 1.6 cm. I've had tinnitus now for over four months and it seems to be getting worse in that, it would disappear for four or five hours every couple of days usually in the evening but would be back full tilt when I woke up in the morning but now it is constant. I've been referred to an ENT from the ENT my family doctor originally sent me to. When the MRI came back with the vestibular schwannoma, he almost guaranteed me not to be there, he sent me to another doctor. I have yet to get an appointment to see that doctor but hope to firm something up this week. Given the state of our Canadian health care system, I probably won't get in to actually see him for a month or two, then hopefully another MRI and then a decision to make. I have some hearing loss in my left ear but with tinnitus ringing in your ear, who doesn't? Even if your hearing was still 100%, how can you tell with all that in-head sound crowding out real sounds? I would like to know what you decide and how you make out. I don't know what to do? Nothing is fool proof, all are fraught with the potential for bad endings. I know the initial advice will be "watchful waiting" but what if I have one that doesn't adhere to the slow growth protocol?

v357139

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Re: Just diagnosed
« Reply #5 on: January 29, 2014, 08:16:43 pm »
Mine grew fast, but others grow slow.  You can find out by getting another MRI in six months.  Mine grew from 2.7cm to 3.5cm in 10 months.  It was removed 99.5% with very few problems.  While I would NEVER recommend waiting so long for one my size, the moral of the story is the 2nd MRI told me mine was fast growing and that information helped me finally decide.

I see you focusing on the negative, as I did.  That is part of why I took too long.  Focus on the positive.  You probably do have some time, and more options than I did (eg, wait/watch, Gamma Knife, Cyberknife, etc).  Get several opinions from experienced teams.  If you don't like the Canada system, traveling is an option.  I traveled from NY to House Clinic in California, and got an excellent result.  You can send MRI to them for a free phone consult, which you can get very quickly.

We all wish we had a guarantee but we had to accept there is none.  But you can absolutely give yourself a great chance by getting several opinions from experienced teams.  Let us know how it goes.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

kcarloy

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Re: Just diagnosed
« Reply #6 on: February 01, 2014, 10:41:55 pm »
The good thing is, now you know what the problem is, the hard part is being patient and figuring out what to do. If you can go out and walk every day to get rid of some of the stress you must be feeling. Keep sorting through this site, you will continue to  find friends and helpful information. Karen

lystgl

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Re: Just diagnosed
« Reply #7 on: February 04, 2014, 09:25:36 pm »
Will you let me know what you find out? The chances of you seeing a neurosurgeon and or ENT / otolgaryngologst sooner than I are pretty good. I think I'll be looking at months before my first visit as I'm Canadian eh! I don't know what to do either. I know they're big on watchful waiting up here and it sounds tempting. No bad thing really, a little upper frequency hearing loss, tinnitus but believe it or not I'm getting somewhat used to that. Surgery and radiation can cause more problems than a little with balance, facial muscles, hearing but I still think it makes more rationale to get it while it's relatively small(er)

Eeeber35

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Re: Just diagnosed
« Reply #8 on: March 06, 2014, 12:35:12 am »
Seen all the doctors. Radiation planning starts tomorrow. Decided to go with RadioTherapy. Best way to preserve the rest of my hearing. 25 treatments total. 5 days a week for 5 weeks.

Thanks.

Echo

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Re: Just diagnosed
« Reply #9 on: March 06, 2014, 11:35:56 am »
Congratulations Eeeber35!  Making the choice of treatment is one of the toughest decisions to make.  Now you get to move on and feel some relief - that part's behind you.

Best of luck over the next few weeks.  Keep in touch and let us know how things go.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

v357139

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Re: Just diagnosed
« Reply #10 on: March 06, 2014, 04:12:07 pm »
Seen all the doctors. Radiation planning starts tomorrow. Decided to go with RadioTherapy. Best way to preserve the rest of my hearing. 25 treatments total. 5 days a week for 5 weeks.

Thanks.
Congratulations on making a decision.  That is in some ways the hardest part.  Best of luck, I am sure it will go well.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

lystgl

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Re: Just diagnosed
« Reply #11 on: June 09, 2014, 09:49:27 pm »
Congratulations Eeeber35!  Making the choice of treatment is one of the toughest decisions to make.  Now you get to move on and feel some relief - that part's behind you.

Best of luck over the next few weeks.  Keep in touch and let us know how things go.

Cathie.

How is your treatment going if you don't mind my asking? I have just completed 21 of the 25 FSR sessions and can't wait to be done!
My tinnitus is much louder now than before treatment but I'm hoping that upon completion and a few weeks 'rest" it will again go down to a more normal level. Glad I made the choice I did, so far at least

keithmac

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Re: Just diagnosed
« Reply #12 on: June 10, 2014, 04:17:44 am »
I must have missed something somewhere - is a 25 session treatment regimen commonplace? 

Jim Scott

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Re: Just diagnosed
« Reply #13 on: June 10, 2014, 12:34:30 pm »
I must have missed something somewhere - is a 25 session treatment regimen commonplace?

Yes.  There are variations of radiation protocols.  FSR usually consists of a number of 'low-dose' radiation sessions about 20 minutes each over days or weeks. 

I underwent 26 FSR sessions (total 27Gy) over 26 days.  The radiation was uneventful, no side effects and the radiated (previously debulked) AN showed necrosis within a year.  That was eight years ago.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

keithmac

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Re: Just diagnosed
« Reply #14 on: June 10, 2014, 12:59:09 pm »
I must have missed something somewhere - is a 25 session treatment regimen commonplace?

Yes.  There are variations of radiation protocols.  FSR usually consists of a number of 'low-dose' radiation sessions about 20 minutes each over days or weeks. 

I underwent 26 FSR sessions (total 27Gy) over 26 days.  The radiation was uneventful, no side effects and the radiated (previously debulked) AN showed necrosis within a year.  That was eight years ago.

Jim

Well I'm blowed!  I thought I'd read up pretty well but I hadn't noticed that fractionation is used over such a long period of time.  Thanks for that - I need to study harder!

 


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