Author Topic: My story...3cm AN.  (Read 18189 times)

Jim Scott

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Re: My story...3cm AN.
« Reply #30 on: January 13, 2010, 07:54:07 pm »
Ram ~

I wish every newbie could read your last post to see that an AN diagnosis isn't a terrible tragedy, even though some AN patients do have it rough. I applaud your dedication in posting a 10-year update (at 6 month intervals) and I wish you continued success in your post-AN life.  :)

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.

Vivian B.

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Re: My story...3cm AN.
« Reply #31 on: January 14, 2010, 10:35:55 am »
Ram.


I had preivously read your story and wanted to express my appreaciation to you for posting and keeping us updated and to know that you are there for us for support. I am glad that you are doing o.k.

Sending you thanks from Canada

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

RamAir

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Re: My story...3cm AN.
« Reply #32 on: February 24, 2010, 11:04:19 am »
Well, after 10 years post op, looks like we may have an issue. 


I've been experiencing severe head and neck pain for many months.  Kept thinking it was stress from work and family...but now I'm not sure.  Finally went to the doctor and will have to undergo a battery of tests.  After all these years, and my bi-annual ramblings, where I've tried to always be a positive as for others...I find myself in the difficult position I currently am in.

The pain has become almost unbearable, and has started radiating into my right ear canal, down my back, and into my arm.  My doctor thinks it may be a herniated disk, or arthritis in my cervical vertebrae, but I can't discount the neuroma is growing/spreading. :-[

Anyway, I suddenly find myself right where I was in 1999 - scared, nervous, all these thoughts going through my mind...

I'm hoping for the best...but can't ignore the possibility.   It's not easy being positive at times like this...but I'm trying.  My emotions are are a mess right now...with ups and downs every few minutes.  However, just knowing that a message board like this exists is comforting....

If you believe in the power of positive thinking...I sure can use some directed my way.  The next few weeks of waiting are going to be rough.

Thanks for listening... :(


moe

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Re: My story...3cm AN.
« Reply #33 on: February 24, 2010, 11:45:16 am »
Ram,
Just now reading all your posts from 2005. What a great recap of everything. I joined about a year ago.....

Of course you are thinking that your new symptoms could possibly be the AN re-growing and I know how the subconscious works- I think we all tend to "think the worst" when new symptoms come around.

You have such a positive outlook and great faith and  hopefully this is a disc related issue. Sounds like it to me. The AN symptoms would present themselves a little slower, and you mentioned it was a "black spot" where the AN used to be. PLUS the fact that you are very active/athletic with your kids sports and whatever else- the body sometimes pays for it.

So I am optimistically thinking it is NOT the AN :) :) :) 

Let us know what the docs say. When are you having an MRI of your neck(I hope that is one of the things they do first).

Thinking positive for you :)
Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Jim Scott

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Re: My story...3cm AN.
« Reply #34 on: February 24, 2010, 01:48:30 pm »
Ram ~

I'm sorry to learn of your recent pain issues and, like you, I hope and will pray they are not AN-related.  Like Maureen, I suspect that your pain is disc-related but of course, that's just a supposition.

Please remember that you'll be in the hearts, minds and prayers of many people as you deal with this latest challenge.  You have a large contigent of folks 'rooting' for you.  :)

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.

sgerrard

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Re: My story...3cm AN.
« Reply #35 on: February 24, 2010, 10:49:24 pm »
I have to say, those symptoms don't sound very ANish. Herniated disk sounds more like it, not that that is a good thing.

It is possible that you can still blame it on the AN, though. Some studies suggest that one way we compensate for lost balance function is to hold our head and neck tighter and stiffer all day, to avoid movement. Doing that for ten years may have led to a pinched nerve situation. ANs really can be a pain in the neck.

Ram, we are certainly hoping this is something that can be fixed up in a reasonable way. We want you back as our 10 year veteran!

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

suboo73

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Re: My story...3cm AN.
« Reply #36 on: February 25, 2010, 05:21:48 am »
Ram, 

I just re-read this whole thread - your story IS amazing!

Now i am sorry to hear your are having some pain issues and hope they are resolved after some valuable testing!
Thank goodness for the type of diagnostic testing that is available today.  Many of us would still 'be in the dark' without it.

And here's a fact i don't like - i am not getting any younger!   :o 
So i have those aches and pains i don't want to admit, and have to sometimes re-invent the way i do things or ask for help. 
[Not because of my AN!]

We are all so glad you have expressed your concerns here - giving us a chance to send lots of good vibes your way!

Many thoughts and prayers to you and your extended family.
I know you will get through this...  Stay strong!

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

lalehjg

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Re: My story...3cm AN.
« Reply #37 on: February 25, 2010, 09:45:39 pm »
Hi Ram.

I'm no doctor, but your symptoms really don't sound like they're from an AN.  If the AN were growing, it may have caused hearing loss, tinnitus, vertigo, dizziness, balance issues.  Head and neck pain just don't seem to fit the bill with an AN.  I know you went through such a rough time in 99 when you were diagnosed, and, after a shock like that, we're really not totally the same.  So it's understandable that you are scared.  In your shoes, I would do this:  get my tests done, try not to think about it or worry about it until results come BECAUSE, those symptoms just don't sound consistent with a growing AN.  Take comfort in that right now.  I'm sending you good vibes.  Your story has inspired me to seriously look at CK for treatment of my AN 12 mm x 5 mm.  So keep on keeping on.

Laleh
12 mm x 4 mm diagnosed 1/25/10
CK at Stanford 4/7-4/9/10 - Drs. Chang and Soltys
Measured 14 mm x 6 mm at time of treatment

RamAir

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Re: My story...3cm AN.
« Reply #38 on: November 03, 2010, 09:15:55 am »
Hello all...sorry for not updating sooner.

Well, the pain I've been experiencing does not appear to be related, in any way, to my AN.  So, thank you to everyone for your positive thinking and prayers. ;D

I spent the last 6 months working in the Gulf on the oil spill. Unfortunately, the pain still lingers.  It seems to be stress related and may be due to a pinched nerve.  I manage to ignore it on most days, and have learned to cope.

Anyway, I'm doing fine overall. My hearing has continued to remain unchanged, as has my balance issues (very, very minor).  I have started working out pretty steadily again, as I'm anticipating as I get older, my balance may become more of an issue.  Keeping myself in top physical shape will help to compensate for the bad days.  I continue to have MRI's when necessary and have yet to see any changes.

Once again, I'm always willing to listen if anyone wishes to contact me.  The least I can do is share my experience with others and be a source of inspiration for someone suffering form a recent diagnosis.   Positive thinking is the first step in healing, and hopefully, I can offer an ear and a shoulder to lean on. ;D

Talk to you all soon...

{Edit}  Almost forgot - As it is once again November, I am now 11 years post-op.    ;D  As always, I will continue to check in from time to time, just to say hello and update you all.  Stay strong - stay positive AN Family.  You are not alone...
« Last Edit: November 04, 2010, 12:23:17 pm by RamAir »

Jim Scott

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Re: My story...3cm AN.
« Reply #39 on: November 03, 2010, 02:12:13 pm »
Ram ~

Thanks for the update and congratulations on your steadily continuing recovery!

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.

jbbrown15

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Re: My story...3cm AN.
« Reply #40 on: November 13, 2010, 11:03:27 am »
This is great to read, as a 33 year old currently undergoing fractionated stereotactic radiation therapy for a 2.9 cm an.  Thanks for sharing!

Jean
Jean
2.9 cm AN on left side diagnosed 9/9/2010
Finished 26 sessions of fractionated stereotactic radiation on 11/22/2010
Symptoms of increased intracranial pressure since summer of 2010. Trying to determine if related to AN.  Some good doctors say yes, some good doctors say no.

RamAir

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Re: My story...3cm AN.
« Reply #41 on: March 13, 2013, 01:53:11 pm »
Hello all...just stopping by to report - I am still healthy and happy!  Have had another round of MRIs just to make sure, and all is well.  Still have some hearing left (thank God) and have had no further hearing loss.  As I am aging, I do find I have a few more days where balance is an issue, but luckily, it's minor and only happening once or twice per month. 

Anyway, just wanted to say - I am always available to talk.  As long as I have breath, I will help those in need with any advice I have.   ;D

Cheers!

 


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