Newly diagnosed

[servantm]

Hello ANA members!

This is really a great Web site!

I was recently diagnosed with an AN (14 x 15 x 13.4 mm) this past October. I am on the W&W protocol as my ENT said it is too late to preserve my hearing on the left side. It is just a matter of time before translab… Anyway, meanwhile, in addition to my balance issues (which I have been dealing with for the last 5-6 years and give my a weird sensation of not really being there…foggy brain...), I am suffering from great fatigue, weakness in the legs (mostly in the knees…), hands tremor as well as blurred vision. Are these symptoms shared by other members?

Thanks for the help.
Marc

[lauralynn]

Hello Marc,

Welcome!  Sorry to hear of the issues you are having.  I had a 4 cm AN removed by translab in 2009.  I also had 3 sessions of Gamma Knife shortly after that.  The issues I had prior to surgery were very few.  I had very slight balance issues and tinnitus in the AN ear.  I did not notice anything else really.  Everyone is different though.   No two AN stories are the same.  This forum is absolutely wonderful and the people are very caring and very knowledgeable too.  I pray for all ANers, so I will be praying for you as well.

Take Care,

Laura

[james e]

I had translab 44 months ago. I  had vertigo, balance issues, 85% hearing loss, tinnitus, and my ear felt full. Never any fatigue.

Let me ask you, what are you waiting for? I was going to W&W, however my hearing was all but totally gone, my balance was all but gone, BUT my facial nerve was still fully functional.  I decided to go ahead with the surgery to save my facial nerve from the tumor. If I still had most of my hearing in my AN ear, I  would have stayed on W&W...great to have two ears. My surgery was pretty straight forward and my facial nerve was preserved.

Welcome to the forum. Sorry you are here (due to your tumor) but glad you are here to hear our experiences. I am not trying to influence your decision about when to have your surgery. I am suggesting you set some type of target, and when you hit it , get your surgery.

James

[joanna_an]

Hi Marc,

I have been diagnosed on the 17th of October this year. Mine is 18 x 16 x 13 mm which is a bit bigger than yours. I have hearing loss.. I actually have a 87% word recognition at 30dB and it drops to 47% at 50dB, which is interesting I think. My tinnitus is mild. I can live with it. A bit of tingling here and there in the face, but my both face sides feel the same at touching.

I don't know how much you researched but there are alternatives to surgery. I am not telling you what to do. It's up to you, but I am looking for Gamma Knife or Linac as well for mine. I am 10.000 km from family, so no family support for me. I don't have much choice. I found that "older" doctors tend to go with surgery haha.. They're a bit conservative. My GP didn't even know that radiation can treat ANs. He actually thanked me later for educating him. My hope is that GK will buy me 5 to 10 years and maybe surgery will have better results by then or maybe there will be other alternatives. Technology advancement goes exponential.

Please do your research first and make an informed decision. You still have time.

Joanna.

[Derek]

Hi Marc...

A warm welcome to the Forum and pleased that you found us. Conservative management (W&W) of your AN is a worthy treatment option just as long as you have regular MRI scans and have a consultant whose advice and guidance you can completely trust. As part of your on-going research do browse the many posts on the 'Watch and Wait' sub forum where you will find lots of advice and encouragement.

Best Wishes

Derek

[arizonajack]

Hello ANA members!

This is really a great Web site!

I was recently diagnosed with an AN (14 x 15 x 13.4 mm) this past October. I am on the W&W protocol as my ENT said it is too late to preserve my hearing on the left side. It is just a matter of time before translab… Anyway, meanwhile, in addition to my balance issues (which I have been dealing with for the last 5-6 years and give my a weird sensation of not really being there…foggy brain...), I am suffering from great fatigue, weakness in the legs (mostly in the knees…), hands tremor as well as blurred vision. Are these symptoms shared by other members?

Thanks for the help.
Marc

If those symptoms really are related to your AN, consider this.

Your AN is roughly spherical, about 1/2 inch in diameter, which is about the size of a marble or the diameter of a .50 caliber bullet (and about as friendly).

It occupies a space in your skull that doesn't have space for the extra baggage so your marble is putting pressure on the rightful inhabitants (cranial nerves and other structures) and that might account for your symptoms.

What you do is up to you, but I suggest you consider radiation (gamma knife or cyber knife) in addition to the invasive surgery option.