My story...3cm AN.

[Jim Scott]

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

[Vivian B.]

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

[RamAir]

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]

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

[Jim Scott]

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 

[sgerrard]

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

[suboo73]

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!    
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

[lalehjg]

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

[RamAir]

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.

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.

Talk to you all soon...

{Edit}  Almost forgot - As it is once again November, I am now 11 years post-op.      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...

[Jim Scott]

Ram ~

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

Jim

[jbbrown15]

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

[RamAir]

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.   

Cheers!