Author Topic: New To ANA  (Read 5747 times)

sherry2626

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New To ANA
« on: August 23, 2006, 07:29:04 pm »
Hi to everyone :) 
 Well I'm New to this site I have been checking it out. I feel like it will be very helpful for me. Or I hope so.
I was diagnosed July 30th 2006. Everything is still so confusing. But my AN is 1cm in length on the left side. I had some hearing loss
3 years ago. It had a big drop but it got better. Then in June it dropped again just suddenly. But the ENT Dr. I was sent to both times just treated it with a steroid shot I had really no other symptoms. But like the 2nd week in July I started having trouble with a gland on the left side of the neck which started sending pain to the ear which I thought was wierd. Everytime I would swallow it would hurt. (But only in that spot) & I have a fullness feeling in my ear always. I went onto the Dr. & he did send me on for a MRI.
So I saw the ENT he was great he was very helpful explaining things about what options I would have this & that....
But he did send me onto a neuro surgeon which he was just rush me in rush me out....yep its there lets watch it...for 6 months..ok...

Well here is the Deal....Here is where I need your Help Advice Etc......

I'm a Scrub Tech @ the Hospital where all the Dr.'s are and work...My Ins. like covers 100% using them you know.
But my Question is....
Should I get a second opinion?
Since I have been to the Dr.'s my Balance has gotten worse?
& seems like when I have a headache even a slight headache balance is worse?
could it be from the AN.....
Diagnosed July 30th 2006
AN Left Side 1cm Length
35% Hearing Loss
Wait & Watch

Captain Deb

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Re: New To ANA
« Reply #1 on: August 23, 2006, 07:42:38 pm »
Hi sherry and welcome to the forum.
ANs cause all kinds of weird symptoms in some people and almost none in others and are found by "accident." Your headaches and balance problems are very likley caused by your AN.  The important thing is that you research your options. Did your doc even mention the word radiosurgery? More and more people with small ANs are choosing this route.  If you do go the surgery route, down the road, and you will hear this one over and over again, a lot of the time your outcome is proportionate to the skill and experience of your surgeon, so make sure you choose someone who has performed hundreds of AN resections.
Post your particulars in your signature if you want--it gives us a frame of reference for when you post again--see how in Tips" in the welcome message category.

Captain Deb 8)
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50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Battyp

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Re: New To ANA
« Reply #2 on: August 23, 2006, 07:47:21 pm »
Hi Sherry and welcome!,
  I didn't read what Capt Deb said but if I was you I'd get a second opinion.  In the 6 mos that my ENT MISDIAGNOSED ME I lost all my hearing in my left ear, my balance was severly compromised and my brain stem was involved.  By the time they diagnosed the problem I had 6 weeks to make a decision and get on a table.  Had I now of waited that 6 mos I'd still have hearing in my left ear that was serviceable (could hear a dial tone and hold a conversation). 

I was never told to let my doctor know if my symptoms got worse and I so wish I did!  That 100% is great but ask yourself is it worth the wait?

Best of luck to you!

Windsong

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Re: New To ANA
« Reply #3 on: August 23, 2006, 08:02:15 pm »
Hi Sherry,

You will have lots to read and lots of support here.

Your An sounds small enough to have a number of choices, so i think that's good.

I am curious  about the neck thing and what you yourself noticed.... is this from that steroid shot in your neck or was this there before you got that?

Best wishes,
Windsong

Hi to everyone :) 
 Well I'm New to this site I have been checking it out. I feel like it will be very helpful for me. Or I hope so.
I was diagnosed July 30th 2006. Everything is still so confusing. But my AN is 1cm in length on the left side. I had some hearing loss
3 years ago. It had a big drop but it got better. Then in June it dropped again just suddenly. But the ENT Dr. I was sent to both times just treated it with a steroid shot I had really no other symptoms. But like the 2nd week in July I started having trouble with a gland on the left side of the neck which started sending pain to the ear which I thought was wierd. Everytime I would swallow it would hurt. (But only in that spot) & I have a fullness feeling in my ear always. I went onto the Dr. & he did send me on for a MRI.
So I saw the ENT he was great he was very helpful explaining things about what options I would have this & that....
But he did send me onto a neuro surgeon which he was just rush me in rush me out....yep its there lets watch it...for 6 months..ok...

Well here is the Deal....Here is where I need your Help Advice Etc......

I'm a Scrub Tech @ the Hospital where all the Dr.'s are and work...My Ins. like covers 100% using them you know.
But my Question is....
Should I get a second opinion?
Since I have been to the Dr.'s my Balance has gotten worse?
& seems like when I have a headache even a slight headache balance is worse?
could it be from the AN.....


sherry2626

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Re: New To ANA
« Reply #4 on: August 23, 2006, 08:18:40 pm »
The shot wasn't given to me in the neck,... it was just a gland that was inflamed. ....But when I would turn my head to one side it would be like some one had shot me in the neck.... ;)   It just so happen to be on the same Left side.....
Thank you for your support....
Diagnosed July 30th 2006
AN Left Side 1cm Length
35% Hearing Loss
Wait & Watch

Crazycat

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Re: New To ANA
« Reply #5 on: August 23, 2006, 08:46:33 pm »
Hi Sherry and welcome!

 Ã‚   What part of the country do you live in? You have a 1cm growth and they're telling you to watch and wait? That just doesn't sound right to me. Many of us here have been through the mill with growths smaller than that. Mine was huge at 5cm x 5cm. You don't want the thing to get to get even close to that size, believe me! I started to lose my hearing in 1999. Thinking it was due to loud music because I'm a professional musician, I let it go. In Jan. 2002 I started seeing double - all day, every day and especially when I shifted my eyes to the left - I had a left side tumor. This symptom indicated to me that I had a brain tumor. I began to feel constantly lightheaded and malaised as if I was on the verge of coming down with the flu or maybe even hypoglycemic. I had my blood checked, my sugar as well as my CBC - complete blood count - were both normal. The normal CBC indicated to me that what I had was not cancerous be- cause if it was, my white blood count would have probably been really high. Not having insurance, all I could do was see an audiologist, an ENT, a GP, and even a chiropractor, in an effort to officially diagnose what was happening to me. They were all stonewalled without the conclusive proof an MRI could provide.

 Ã‚   In 2005 my symptoms worsened. My equilibrium went on me. I was staggering around like a drunk. Now, everyone could see that I had a problem.  My handwriting deteriorated. I began to think I had M.S. There were a number of times in early summer 2005 that I knew and could feel that I was going to die. It was like something from a Carlos Castaneda book. My whole equilibrium and depth perception were becoming altered in such a way that it is difficult to explain.

 Ã‚  I finally obtained insurance and had an MRI scheduled immediately. The next day the phone was ringing off the hook.
I not only had problems with the tumor, but also the fluid, building up in my cranium and compounding my equilibrium problems. The tumor was so big it was blocking the flow of csf. I had two surgeries: the first for the shunt and the second, a month later for the tumor resection. I was lucky. I had great doctors and we got to it in time.  

My advice to you is to get those guys to move on your situation ASAP! Your beginning to to feel the gentle pawstrokes of how bad it
will eventually get. These things don't go away, they only get worse over time. The good thing is that they are typically non-cancerous.
The bad thing is that they can wreak havoc with the cranial nerves. How they effect the nerves usually varies from person to person and that is something you will become quite informed about by particpating in this forum.

 Ã‚ Should you get a second opinion? YES!! Don't go to sleep on it or supress this. The only reason I went as long as I did without treatment was because I had no insurance!!

 Ã‚ Please keep us informed of how you're doing..........Paul

 Ã‚   
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Windsong

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Re: New To ANA
« Reply #6 on: August 23, 2006, 09:09:42 pm »
The shot wasn't given to me in the neck,... it was just a gland that was inflamed. ....But when I would turn my head to one side it would be like some one had shot me in the neck.... ;)   It just so happen to be on the same Left side.....
Thank you for your support....

did the neck thing happen before or after the knowledge of your An  or maybe it happened after the steroid?

It's good that you had a rapid response for your whole An situation. I think 6 weeks or so is good news.... so many here have had to wait so long even after knowing something was wrong.

Not many people here write in about necks and synptoms, but I've had my neck swell up and do weird things
but only after a " needle-like" blood-sucking mosquitoe did a  big number on me, and that was  a few years ago.  I assumed as did my doctors that I had an "allergic" reaction" and that is how it was treated... That's why I asked....

I wish you the best in all,

Windsong



« Last Edit: August 23, 2006, 09:19:00 pm by Windsong »

Larry

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Re: New To ANA
« Reply #7 on: August 24, 2006, 02:06:34 am »
Sherry,

Agree - get a second opinion. Also, search out the posts on gammaknife and cyberknife treatments (radiosurgery). If you have symptoms then treat it, otherwise sounds small enough to ignore.

3 surgery oprions. 1. Translab - seems most successful surgery in removing AN but guarantee full hearing loss.

2. Retrisigmold (spelling) and

3. Middle Fossa

From what I understand, 2 and 3 are similar. I had 3. It's less invasive surgery but depending on where the AN is, they may not get full access to removing it. There also seems to be a high degree of post surgery issues - headaches mainly.

Other potential issues with surgery is dry eye. This is where you can't blink and ned drops and goo to keep the eye lubricated. Facial paralysis is also there. If they nick the facial nerve then you end up with droopy mouth etc.

radiotherapy appears to have fewer post issues and the "risks" seem lower than surgery.

Having said all that, surgery is appropriate treatment it depends on personal preference. Do you ant the AN out now or are you prepared to wait and see if it shrinks. Big emotional issue this one.

Read up on the different approaches and make sure you ask the beurosurgeon or whoever, how many have they done.

cheers



laz
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Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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DeniseSmith

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Re: New To ANA
« Reply #8 on: August 24, 2006, 06:54:52 am »
Welcome Sherry,


If you would feel more comfortable with a second opinion then get one.  You said your symptoms seem worse.  After i found out about my AN my symptoms seemed worse too.  i think I  had spent so much time trying to compensate for my symptoms prior to diagnosis, that once I found out i did have a problem, then i just gave into them.  (Not sure if that makes sense in writing, in my head it makes perfect sense!)

Get a second opinion, your AN is still small, and you have so many options for treatment.   I wish you much success in your search for treatment. There are alot of smart, helpful, caring people on this site, who can help you.  If you need information, do not be afraid to ask, no matter what.

Take Care,
Denise 8)

msuscottie

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Re: New To ANA
« Reply #9 on: August 24, 2006, 07:41:54 am »
Welcome Sherry,

If for no other reason, a second opinion will at least set your mind at ease. It sounds like you're already wondering if the first diagnoses was accurrate, so a second opinion should remove that uneasy feeling.

Do what makes you most comfortable.

pattibobatti

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Re: New To ANA
« Reply #10 on: August 24, 2006, 07:52:19 am »
Goodmorning Sherry,

Sorry to hear your news.  You will find that we care very much for you.  The good part is that  we have much to say on this subject... I'm sure you are scared but soon things will make better sense to you.  Please read all the info on the doctors that are available...It's so important. 

Keep posting and take good care,
Pattibobatti
17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

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Sue

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Re: New To ANA
« Reply #11 on: August 24, 2006, 12:35:50 pm »
Somebody is bound to tell you eventually, but I guess I'll beat 'em too it.  House Ear Clinic in Los Angeles does free consultations on AN's.  They are one of the most well respected institutions for dealing with ANs.  AND they now have Gamma Knife, so if radiation is your best option, then they can address that issue also.  I didn't go there, my AN was treated in Portland, Or, but other's on this Forum can tell you all about this hospital and the good care and treatment they received there.  If you search for HEC or House you will probably see many posts about this place. Follow your instincts.  If you feel you need a 2nd opinion...then seek it!!  It isn't always easy when money has to be the determining factor in our health care, but sadly, that is the case with most of us.  Good luck and let us know what happens. 

Sue in Vancouver
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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sherry2626

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Re: New To ANA
« Reply #12 on: August 24, 2006, 06:11:24 pm »


 Ã‚   What part of the country do you live in? You have a 1cm growth and they're telling you to watch and wait? 
 Ã‚   

Hey Paul Thanks for your Advice.... Well I live in the South.... Sweet Home Alabama....
I'll keep you posted....Thanks
Diagnosed July 30th 2006
AN Left Side 1cm Length
35% Hearing Loss
Wait & Watch

sherry2626

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Re: New To ANA
« Reply #13 on: August 24, 2006, 06:26:59 pm »
The shot wasn't given to me in the neck,... it was just a gland that was inflamed. ....But when I would turn my head to one side it would be like some one had shot me in the neck.... ;)   It just so happen to be on the same Left side.....
Thank you for your support....

did the neck thing happen before or after the knowledge of your An  or maybe it happened after the steroid?

 
It was before. That was one of the reason I went to see the Dr. in the first place That and the fact I thought I might Have had an ear infection... Or something...Because just that gland on that side (L) of my neck was swollen. That's the day he sent me for the MRI. That was Friday....I found out the report that following Monday....I got into see the ENT specialist for my ear that same Day...he had a cancellation in surgery...How lucky was I.  He spent like an hour and a half talking with us and calming me down. He was great. That Thrusday I got into see the Nureo Surgeon he wanted me to see. So everything just went so fast. SO many Questions.
But thanks so much for the care & concern.
Sherry



Diagnosed July 30th 2006
AN Left Side 1cm Length
35% Hearing Loss
Wait & Watch