Author Topic: Newbie just diagnosed  (Read 8372 times)

kejac

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Newbie just diagnosed
« on: August 14, 2012, 01:02:46 pm »
Hi all, I have been recently Diagnosed with a 10mm x 5mm AN left side.

Was on my way to the doctor on 8/6 and an overwhelming feeling came over me, decided to turn around and head to the ER.
Symptoms were numbness left side of face accompanied by alot of anxiety, I was freaking out.
They did a ct scan and an mri w/o contrast, im just learning now what with and without contrast means.
Anyways, neurologist entered my room and told me that there was an incadental finding, acoustic neuroma.

To tell the truth I am actually relieved something was found, I have been to the doc several times and a neurologist once, always being dismissed and saying i was having an anxiety attack or stressed out.

I do have a question. I am an active person, work outside doing light construction and like to keep fit.
In anyones experience can exercise or being over exertive (bringing heart rate up) trigger symptoms?

I have been referred to UCSF and am waiting for a call back from them to schedule an appointment. Untill then I thought I would ask here and introduce myself.

Thanks,
Kejac
Diagnosed with AN left side 8/6/2012
10mm x 5mm
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

Jim Scott

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Re: Newbie just diagnosed
« Reply #1 on: August 14, 2012, 02:46:31 pm »
Hi, Kejac ~

Although I'm sorry you've been diagnosed with an acoustic neuroma, I'm glad you found the ANA website discussion forums.

I'm not aware of any specific physical activity 'triggering' AN symptoms via an increased heart rate but I'm not a doctor or an expert and could be mistaken.  That will be a good question for the doctor during your consultation.

Welcome to the forum and good luck with your upcoming consult at UCSF.  Please stay connected here and let us know how the consult goes.  Thanks.

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.

kejac

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Re: Newbie just diagnosed
« Reply #2 on: August 14, 2012, 03:46:09 pm »
Hi Jim,

Thanks for the reply, I appreciate it.

Ill make sure I have my list of questions when seeing my doc. As of right now I am trying to stay in good spirits, breath in breath out. Im glad I found the site its been a wealth of info. Also appreciate folks posting about their personal experiences, its been really helpful in understanding about all of this.

I will stay connected and post whats happens with UCSF.

Kejac
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

leapyrtwins

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Re: Newbie just diagnosed
« Reply #3 on: August 14, 2012, 08:26:45 pm »
Hi, Kejac and welcome to the Forum.

Like Jim I've never heard that any specific physical activity triggers AN symptoms. 

Being diagnosed with an AN is pretty nerve-wracking and it takes some time to digest.  But rest assured that 99.9% of all ANs are benign.

I'd like to suggest that you contact the ANA and ask them to send you their informational literature.  You'll find it very helpful in answering just about all questions AN - and the literature is written in layman's terms;  very easy to comprehend, which is helpful since most of us aren't medical professionals   ;)

Good luck with your consult @ UCSF.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

kejac

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Re: Newbie just diagnosed
« Reply #4 on: August 14, 2012, 09:49:12 pm »
Hello and thanks,

I'll take your suggestion and request the info.

These symptoms ive been experiencing have been coming and going since late last year. Dizzyness, numbface, metal taste in mouth...  Im glad something was found with the mri, it explains everything! I know its not going to be an easy road but, I have confidence with todays medical technologies and so many success stories.

Im still waiting for the phone call from UCSF for the appointment. Dr Parsa only sees patients on thursdays I guess due to a tight schedule, so its looking like the end of the month or early next month. Ive read here on the forums folks send their info to HEI and receive a free consultation? I will look into it.

Anyways, thanks for the post and info on contacting ANA.

kejac

Just a quick edit: I found the info about the House Clinic and will be asking for a free phone consultation, thanks forum board.
« Last Edit: August 14, 2012, 10:15:07 pm by kejac »
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

millie

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Re: Newbie just diagnosed
« Reply #5 on: August 18, 2012, 02:13:51 pm »
When I am busy running lots of errands under time constraints, or when I am feeling pressured, I think my  balance symptoms increase.  Sounds like yours are similar.

kejac

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Re: Newbie just diagnosed
« Reply #6 on: August 20, 2012, 12:16:55 am »
So, I work part time (second job) at an automotive store stocking auto batteries. When Im moving these things I get the numb face from the left eye socket to my jaw. Also, been been getting a dull headace above the ear and at the base of my skull, left side. If I relax for a bit it subsides. Hmmm, wonder if I have a secondary issue. Maybe a pulled neck muscle or pinched nerve? Other than that sysmtoms are minimal.

Anyways, millie, thanks for posting.

kejac
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

kejac

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Re: Newbie just diagnosed
« Reply #7 on: October 01, 2012, 06:07:42 pm »
Hello all, 

Just a quick update. I went to see Dr Parsa at UCSF. He seems to think that with the size and current symtoms I'm having that we wait 6 months and do another MRI. So, come March we will see if there has been much growth and go from there. My symptoms come and go. Mostly tingly feeling around my left temple and eye. Hearing on the left side has diminished a little but, nothing out of the ordinary. That's according to the ear Dr.

That's all for now,
Kejac

Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

jockieau

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Re: Newbie just diagnosed
« Reply #8 on: October 01, 2012, 09:24:45 pm »
Hi Kejac

Did the doctor explain why you have the feeling of numbness around the eye? I have the same thing (I also have a twitch in my eye, nice!) and the same pain behind my ear. I'd be interested to know where your tumour is located as well - mine is (well at last MRI) in the IAC. I worry mine is all involved with the facial nerve, but am not sure why the eye would be affected....?

Regards
Jockieau

Suu

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Re: Newbie just diagnosed
« Reply #9 on: October 02, 2012, 12:27:33 am »
Hi, Kejac.  Welcome to the best place on the net for any ANers
I'm 2 years post op and find that strenuous activity prior to surgery didn't produce warning signs.  I got those only on the day I was diagnosed with a 4cm AN hiding in my head  :o
Please keep us updated on your progress so we can cheer you up or help in any way that we can.

Jockieau - How have you been going lately too?

Cheers and hugs,
Suu xx
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

kejac

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Re: Newbie just diagnosed
« Reply #10 on: October 03, 2012, 12:32:53 am »
My tumor is located in the internal auditory canal. I think my headaches are more related to sinus pressure and allergies but, I could be wrong. The mri also located a small cyst in my nose left side and I do get clogged up on that side. I asked why I get the tingly feeling around my temple, he said the tumor is pushing on the facial nerve. Thats pretty much it, wish I had more info for you.

As for how I'm going, I can remember what the date is again and im not forgetting things like I was when first diagnosed, I was out of it and confused. I just keep myself busy to make the day go by and when the symptoms come on I try to chat it up with who ever is close to me... seems to help.

Take it easy,
kejac

Just a quick edit: i think it was the ENT that discovered the cyst in my nose. He poked a tool up there and discovered it. Guess i'm still forgetting things... lol
« Last Edit: October 03, 2012, 03:36:57 pm by kejac »
Tumor discovered 8/2012 10x5x5
WW 6 months tumor grew 12x6x6
CK treatment Stanford 3/2014
6 month scan swelled to 15x9x9
1 year scan tumor reduced to 14x7x6
2 year scan tumor reduced to 12x6x5
3 year scan tumor stable 11x6x5
5 year scan no change 11x6x5

skipg

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Re: Newbie just diagnosed
« Reply #11 on: October 03, 2012, 11:02:00 pm »
I may be the odd man (person) out here but I do notice a change when I do any strenuous activity. On the treadmill today and elevated at 5% and 3 mph. After 30 min Pulse and BP were elevated and head and ear felt pressured. Happens with lifting weights or anything that causes bp and pulse to rise. Good thing is at least I am staying active. If I keep it up long enough maybe my "thing" upstairs will surrender and leave.
Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

GaleWynne

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Re: Newbie just diagnosed
« Reply #12 on: October 04, 2012, 11:00:47 pm »
I am not sure how much this will help -

My small AN (was a little over 2MM, has actually shrunk to 2MM in 12 months) gives me some very subtle vision problems, similar to my sister (she had a 3MM removed over 10 years ago - it caused disabling balance symptoms).  Before I was diagnosed, I wound up in the ER since my eyes couldn't track lines on a spreadsheet and I was worried I was having a stroke.  I was diagnosed with a panic attack, while of course ticked me off, and didn't explain my issue. Several months later, I had an MRI which showed the AN.

I have several symptoms; however, I will focus on vision here.  I have subtle problems with viewing patterns, my problems have diminished over time as this tumor has apparently shrunk (which I attributed partially to having regular myofascial massage done every week over the past 6 months which improves circulation). 

However, I bring this up since it could be possible that part of what you are experiencing are some vision issues caused by the AN- that are so subtle you may not actually notice them.  For example, I was doing well this year and then I happened to use a restroom in June that had "ivy wallpaper".  It was moving on me.  Now, I had to really look at it to see it.  I just knew something was off in that room and then when I looked closer at the paper, the patterns were moving. If I didn't know about my AN and if I didn't know that my sister has things move on her (this still happens to her now), I probably would have rushed to the ER. 

There are some other weird things that this AN can do to vision  - shiny wet surfaces bothered me for example. I had no idea until after I was diagnosed that my sister experienced issues with shiny wet surfaces.  Her doctor has taken out a number of ANs and told her that his other patients experienced similar types of things. Now that I know this, I have regained my confidence in walking on shiny wet surfaces.

I happen to be an accountant,  I do sometimes have problems tracking lines even after my tumor has shrunk.  Even with reading glasses, I have to use a ruler or my finger to run along a line on a spreadsheet printed out.  It doesn't happen all of the time, but it is just an annoyance when it does. 

Our carpeted beige basement stairs "shimmer" a little bit.  I have to take a bit of extra care going up and down them, hold the rail. Not a big deal, just a little adjustment.

We use those plug in emergency lights and have two of them in our bedroom so it's not pitch black when I get up for whatever reason. I need a little light.  Evidently, when the vestibular gets pressed by the AN, it can be harder in the dark since your eyes help with your balance.

Maybe the patterns on the batteries - or the rows they are in forming a pattern - coupled with the AN equals a bit more strain on your eyes as your brain processes the information. 

I don't have a solution, it's more of an explanation.  But once we realize there is an explanation, then it makes it a bit easier to deal with.  So when I realize those vines were turning/moving/the wall appeared to be breathing, I thought - its the AN, it's causing my brain to not  possess information correctly from my eyes, and it's okay and I went along with my day, instead of letting it turn into anxiety. Perhaps in stacking the batteries, you may need to periodically take a break or two - more breaks than you used too, and then your strain will pass. Perhaps going for a massage may help too. 

Also, I feel that what we deal with is like a brain injury.  We have something pressing on the vestibular that then messes up our brain processing and affects our balance and vision.  I got a lot from Laura Bruno's book "If I only had a brain injury" that helped me last year as I was coping with this.  I also researched how balance works and how vision can be affected and got an understanding of how my body works.  I also got an eye doctor who said that she would treat me like a person with a brain injury.  She actually got the whole picture and has a vision therapist that I saw when I was suffering a lot last year. Again, my symptoms have overall subsided (thank goodness) and I am hoping that my continual massage therapy along with various oils that I am using will continue to bring a positive result and my tumor will shrink again in 12 months. (I am also declining all dental xrays now, my dentist did them every 6 months, bitwings, and a full set every 5 years. Who knows if it has anything to do with the fact that both my sister and I have ANs but I'm erring on the side of caution).

Sorry I started rambling and it's been a long day so my editing on this posting isn't the greatest but I hope it helped in some fashion.

Sincerely,

Gale
Sister 3MM surgically removed 11/2001.
Me - Tinnitus Jan 2011. MRI April 2011 almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE Oct 2019: STABLE!

Mickey

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Re: Newbie just diagnosed
« Reply #13 on: October 05, 2012, 09:33:02 am »
Hi Kejac! Welcome to our club.... It`s amazing how so unique everyone`s ANs are. I think its so important to evaluate your own situation in time. Some people don`t have that luxury with a large AN but most do with at least a 6 mo. W+W til next mri. Give youself time to make the decisions you need. I for one have been fortunate enough to be stable over 5 years W+W 12x06 an. My all around symptoms have improved where I fuction pretty normally(tinnitus has always been with me). Of course I try to stay as healthy as possible ( take a look at W+W brigade posts.) I like to look at things optomistic and with todays technology am sure everthing will be fine whatever your choices. Best wishes, Mickey

millie

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Re: Newbie just diagnosed
« Reply #14 on: October 07, 2012, 08:28:46 am »
Just wanted to say I had root canal and a tooth pulled and xrays recently and have trans-lab surgery coming up October 17th.  Praying for us all.  Millie