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General Category => AN Issues => Topic started by: voron999 on January 19, 2017, 10:26:04 pm

Title: Another AN case
Post by: voron999 on January 19, 2017, 10:26:04 pm

Hello!

I am 48 year old, generally healthy, physically fit, male newbie from Madison WI on this forum.

Here is my MRI case as of 01/11/2017:

Impression: 1. 4 x 3 mm enhancing nodule in the left internal auditory canal, intimate with 8th cranial nerve, consistent with an acoustic neuroma. 2. Otherwise normal MRI of the brain.

I have had ear ringing for the last 5 years, on and off.
Attributed it to my few years worked as a factory worker without proper ear protections during my younger age.

The ringing became consistent during the last 1-2 years and this has been my new normal and I pretty much lived with it.
Hearing specialist told me it was pretty normal for my age and so I carried on.

Since about June 2016 I started having echo in my head, muffled hearing and uncomfortable internal head pressure.
It all started very abruptly. In fact, so abruptly that I rushed into ER to check my head for a possibly contusion issues (I coach kids in soccer and had a very hard "header" about 4 weeks prior). They did the CAT scan and found nothing fatally wrong with me and sent me home.

Shortly thereafter, the same hearing specialist checked me, prescribed a nasal steroid spray for my "allergy" that plugged my auditory canals into the middle ear  and sent me home. (allergy - a typical conclusion they do now days for just about anything; I digress...)

Meanwhile nothing changed with my symptoms, and I started searching the web on my own and one of the immediate source was this forum.
I called my PCP for an appointment and reported on my web search results.
I did a good sales job and she scheduled me for MRI for the very next day.
So here I am.

Next appointment is on March 6 to see ENT specialist at UW hospital and we go from there.
Unsure what is next but what I have now is not really ideal case and something must change.

I have OK days and not so good days and just trying to carry on as usually the best I can (job, working out, family, thinking about the spring ahead - garden/bees/etc).
Meanwhile I will be reading this forum, searching more, and listening to advice.
Thanks for reading!

Title: Re: Another AN case
Post by: mac84 on January 20, 2017, 10:25:02 am

Voron, the good news is that it's very small and you'll have plenty of time to simply watch and wait. No rush to do anything.

Hang in there and continue to ask questions and read all you can as you go through this. You'll find that once you get comfortable with the idea of the AN that it's just something else to get through.  ;D
Cary

Title: Re: Another AN case
Post by: voron999 on January 20, 2017, 11:11:34 am

Quote from: mac84 on January 20, 2017, 10:25:02 am

Voron, the good news is that it's very small and you'll have plenty of time to simply watch and wait. No rush to do anything.

Hang in there and continue to ask questions and read all you can as you go through this. You'll find that once you get comfortable with the idea of the AN that it's just something else to get through.  ;D
Cary

Thanks!
It is small by the examples I see here.
Though, looks like the symptoms vary case by case.
Some people with large ANs don't even know they have them.
I have this tiny AN and yet I feel it well, like about now, while trying to work.
Could be worth still, I guess.

Title: Re: Another AN case
Post by: Willbur on January 20, 2017, 12:45:37 pm

Hi voron

Welcome to the club. I'm originally from Madison WI. My buddy works in the neurosurgeoy Dept at UW Hospital. They only do retrosigmoid according to him.  That is beneficial in your case since it is so small.

Title: Re: Another AN case
Post by: voron999 on January 20, 2017, 04:01:42 pm

Quote from: Willbur on January 20, 2017, 12:45:37 pm

Hi voron

Welcome to the club. I'm originally from Madison WI. My buddy works in the neurosurgeoy Dept at UW Hospital. They only do retrosigmoid according to him.  That is beneficial in your case since it is so small.

Good to know, Willbur.
Thanks.

Title: Re: Another AN case
Post by: jim j on January 21, 2017, 05:27:58 pm

Dear Voron 99,     I am not an expert but I will let you know what I did. I first went to an ENT after my wife said I was going deaf. I had ringing in the ear for years and thought nothing of it. The ENT did a MRI along with test that check to see how much hearing has been lost. Thats important! It can be on the 8th cranial nerve but my ENT sent me to a Neurosurgeon ASAP mine was large 2.5cm x 4 cm x 7cm and pushing on brain stem. A neurosurgeon is the best to get to not an ENT as they do more of these surgeries then an ENT and know more about the nerves in the Brain cavity which that is where the nerves come from the ear into the skull and there is a fluid filled cavity that the nerves pass through to the brain stem. The 8th cranial nerve known as the  vestibulocochlear nerve lies next to the facial nerve and and is responsible for balance and hearing. Yes yours is small but you don't want it to grow and connect to the facial nerve. Usually when it is a small tumor they are very sticky hard to remove surgically. I had 11 hr surgery in NYC I ask the Surgeon to please leave my facial nerve in tact. He said he would try but the nerves are so delicate they are similar to a wet tissue paper. He completed the surgery I had lost my hearing and balance and as an Ironworker in NYC going up 50 floors was difficult. I was told to watch it as it might grow back and it did. In 12 years I had a 7x5x5 tumor again. So I went for Gamma Knife so to avoid surgery. I returned for my 6month checkup and i was told there was another piece that grew on my facial nerve on the brain stem. Well what do I do I thought research research that is what I did the first time. This is your life don't let anyone tell you it will be fine everyone is different. It's not fine. I lost my balance my hearing my job and still have that feeling like I got off the scrambler at a park I work with it but sometimes I can't go out to loud places and ride in a car looking around a lot gets me dizzy. Please take this serious it is. It effects your life forever.. Get the right Neurosurgeon not and ent. My last ENT in 2015 told me to wait if I did not do the GammaKnife I would be worse. I will say you need opinions from 3 neurosurgeons. Get a paper right down questions you need answered and what they say. Do not wait as if you get that facial nerve involved it is hard to look in the mirror and talk and more. So please get  3 opinions and help yourself from Dr's with a 4-5 star rating and does these surgeries every week. This is a Brain Tumor and does effect your brain. Some people get off lucky but I wasn't one of them so I hope you look and listen Good Luck Good Bless. I will be having microsurgery thats what they can do now less invasive. But I will loose my facial nerve and hope I can get rid of the terrible feeling in my head that never leaves.

Title: Re: Another AN case
Post by: ANSydney on January 21, 2017, 06:53:25 pm

Quote from: Citiview on January 21, 2017, 06:40:28 pm

All six MRIs measure the tumor differently. It's possible it has grown 2mm depending on the measurement you want to believe.

Citiview, I'm interested in your statement that "all six MRIs measure the tumor differently". Did you go to the same place for each measurement? What measurements were you given?

Title: Re: Another AN case
Post by: sandyinwisconsin on January 21, 2017, 07:29:57 pm

Hi,

I was treated in Madison by Dr. Steven Howard. I sent you a PM with my email.
Dr. Howard treats with radiation and it would be very worthwhile to meet
with him. He would probably see you ASAP instead of waiting until March.

Basically, the ENT will tell you the three options you have, surgery, radiation, or Watch and Wait.
Your tumor is so small, you don't have to rush into surgery, however it is better to radiate when
the tumors are small to help preserve any hearing you have. The larger they grow, the more
chance you will lose more hearing and possibly run into other problems with balance, etc.

Please send me a PM or email.

Thank you!

Sandy

Title: Re: Another AN case
Post by: jim j on January 22, 2017, 12:00:45 pm

sandyinwisconsin,
    I agree you need to go to the same MRI imaging place with the same machine I go to a place with a T2 machine as it gives better images. There are some T3 machine but the key is same place same radiologist. I was told for 12 years my tumor was fine yet every year it was 1mm bigger in 2 directions. When I asked it seems to be growing i was told it depends on who is reading it. Well a ruler is a ruler and if they can't measure and it is larger each time your tumor is growing. I let mine grow for 12 yrs and finally went to NYU and asked my first surgeon his opinion . I brought all my disc so he can look at them and not just a radiologist. He concluded it was growing and is at a point I need to do something. Lesson learned a neurosurgeon should be looking at the disc's not the reports. I was told they can be off by the MRI placed.  I was a  Superintendent in the construction field if I was off by by that many cm each wall built or tile installed i would have been fired. So Take your time don't rush it but go to at least 3 neurosurgeons for opinions. That is so important information to gather. It is your life and all Dr's are different. Good Luck

Title: Re: Another AN case
Post by: voron999 on January 22, 2017, 08:54:25 pm

Thanks to all for the responses.
I will be digesting this forum for a while... 
Much to understand

Well, today was a so-so day.
The ringing was above average all the while I was trying to watch at the loosing Packers here...
Sad day today if you are a Packers fan.
But also I realized the ringing was actually getting through the TV noise (usually, the noise cancels out the tinnitus).
Moving along...

Quick questions to the experienced here - do you think (from your experience) regular exercise should help to preventively suppress and/or compensate for potentially worsening balance? 

Key word is preventively.
By exercise I mean - regularly walking, running, working out with kettle bells?
With these workouts one depends on balance a lot and so I imagine the brain must be regularly adapting and compensating for any ongoing losses.
This way the brain should be more resilient to what is potentially to come.

Title: Re: Another AN case
Post by: mac84 on January 23, 2017, 10:12:08 am

Voron, I run 20 miles a week and am convinced that this is what helped my brain compensate for the balance loss on that side.

Title: Re: Another AN case
Post by: jim j on January 23, 2017, 10:22:18 am

Yes exercise does help and google this "Images for vestibular rehabilitation exercises patient ..."   I went for 6 months to Therapy but you can do it on your own. If you have good insurance and your Dr can write a prescript for Vestibular therapy you will benefit from it.  I still believe in at least 3 opinions from Neurosurgeons that read the disc themselves and not reports. good Luck

Title: Re: Another AN case
Post by: voron999 on January 30, 2017, 11:50:16 am

I am also noticing the ringing and head discomfort have some connection to the weather.
Today the ringing is above average, and the head discomfort reminds of itself.
Pretty sure this is connected to the weather swing - cold, high pressure system came here for a short stay.
Seems as if high external pressure creates more discomfort for me.

Title: Re: Another AN case
Post by: voron999 on March 06, 2017, 09:53:51 pm

Well, finally made to the ENT specialist.
Short resume:
* I have a way to go yet before being too concerned (under 10mm is fine to wait-and-see he said)
* will check back in 6 months to see the rate of growth (the rate of growth - that is what to be concerned with)
* he up front discouraged me from doing radiation (GK) as at this point the potential side-affect on the hearing could out weight any gain for me (elimination of that annoying tinnitus in my case would be nice, but....);
* spoke about the permanent scarring caused by GK in the AN and I may want to wait just yet since there is no way back once that is done
* surgery - he could do it if I insisted; but he discouraged to be rushed
* regarding the tinnitus, echos, head discomfort he wants to consult another ENT specialist who works with such cases, but without invasive ways

In short, wait-and-see for me. At 48 I am young and healthy.
If can tolerate the symptoms, maybe should try to mitigate them for now and take the gradual path.
All for now.

Title: Re: Another AN case
Post by: ANSydney on March 06, 2017, 10:38:00 pm

Congratulations voron999. Of the three options, the best appears,  if you can, to be observation. Best outcome.

Title: Re: Another AN case
Post by: Willbur on March 15, 2017, 07:02:18 am

Quote from: voron999 on March 06, 2017, 09:53:51 pm

Well, finally made to the ENT specialist.
Short resume:
* I have a way to go yet before being too concerned (under 10mm is fine to wait-and-see he said)
* will check back in 6 months to see the rate of growth (the rate of growth - that is what to be concerned with)
* he up front discouraged me from doing radiation (GK) as at this point the potential side-affect on the hearing could out weight any gain for me (elimination of that annoying tinnitus in my case would be nice, but....);
* spoke about the permanent scarring caused by GK in the AN and I may want to wait just yet since there is no way back once that is done
* surgery - he could do it if I insisted; but he discouraged to be rushed
* regarding the tinnitus, echos, head discomfort he wants to consult another ENT specialist who works with such cases, but without invasive ways

In short, wait-and-see for me. At 48 I am young and healthy.
If can tolerate the symptoms, maybe should try to mitigate them for now and take the gradual path.
All for now.

Good choice.

Title: Re: Another AN case
Post by: voron999 on March 19, 2017, 10:20:25 am

I have a sauna room (proudly - self-made) and enjoy using it during the cold season.
I was told recently that sauna is bad for my AN (coming from some more general idea that heat is bad for tumorous growths).

Can anyone comment?
Any reliable discussions about this anywhere?
I did google and nothing useful so far came up.
Nothing on this forum either that I can find.

Thanks in advance!

Title: Re: Another AN case
Post by: Willbur on March 20, 2017, 09:13:47 am

Quote from: voron999 on March 19, 2017, 10:20:25 am

I have a sauna room (proudly - self-made) and enjoy using it during the cold season.
I was told recently that sauna is bad for my AN (coming from some more general idea that heat is bad for tumorous growths).

Can anyone comment?
Any reliable discussions about this anywhere?
I did google and nothing useful so far came up.
Nothing on this forum either that I can find.

Thanks in advance!

I workout quite a bit. I always use the sauna regardless. Can't comment on growth.

Title: Re: Another AN case
Post by: jim j on April 12, 2017, 05:05:40 pm

Hello Everyone I hope everyone is getting better. I have a question? I had my 1 year post Gamma Knife meet with my Dr. I had a MRI of Brain and MRI of cervical spine has the Dr thinks i have lost a lot of strength on my left side unrelated to the second acoustic neuroma. I also have a feeling of pressure in my head and at times I told him the headaches are so bad on the side of my surgery and Gamma Knife surgery I get nausea debilitated. He stated its not related. I know I need surgery of my spine has I had L4-L5 fused in 1999 and my cervical spine is been bothering me. But when they did the cervical spine MRI they noted a "chronic ischemic lesion in the right cerebellar tonsil. Please correlate with dedicated brain MRI scheduled for the same day."
.He never mentioned it to me. I called and send 3 letters asking him to advice me as it is part of the brain and should have been picked up he is a neurosurgeon. But I was told I needed to see his partner another neurosurgeon that deals with that he does Gamma knife. He told me to get to him ASAP and I am a little taken back has a neurosurgeon my neurosurgeon I believe he could have given me a little time to explain it. All I was told my Tumor and Cyst are stable and not growing but i need to get to the other Dr. I look it up and it is on the bottom of the cerebellum and it can be caused by a few different things. I have had 3 MRI done before on my C-spine and that was never mentioned yet after Gamma Knife that is mentioned and also this “There are hazy confluent areas and scattered punctate foci of increased FLAIR signal in the white matter bilaterally, nonspecific, but likely related to mild microvascular disease.”  again never there before? so why not tell me that all I was told 2 weeks later it could be just from getting older. I am 58 and had to many MRI of the brain to mention and never had these spots. Has anyone ever had this or heard of this?

Title: Re: Another AN case
Post by: ANSydney on April 12, 2017, 07:00:29 pm

jim j, I see you've had a rough ride since 2003 when you had surgery for a 5 x 2 cm (or was it 2.5 x 4 x 7 cm) tumor followed by gamma knife February 2016 for a 0.7 x 1.3 cm tumor. Now it looks like you have a 5 cm cyst. From what I can gather, the current MRI report is confusing. Perhaps a meeting with a neurologist to go over your history and to explain what is going on would be good - no discussion on treatment yet, just understanding what is going on. He may in turn refer you to others that can help to understand where you are at.

Sorry that none of this helps, but clearly recording your history on paper and getting the latest status may help you move forward.

Title: Re: Another AN case
Post by: ColleenS on April 13, 2017, 12:07:52 pm

Although we all wish we were not in this club, your W&W status is good. That gives you time to explore all the options if there is a time that you have to decide. Enjoy your summer  ;)

Title: Re: Another AN case
Post by: Crazycat on April 13, 2017, 07:55:13 pm

48 years-old? That's how old I was when I was diagnosed and treated! And I'd been suffering from it for close to 5 years before.

Title: Re: Another AN case
Post by: jim j on April 14, 2017, 09:59:16 am

Thank you AnSydney, I agree and I have already sent all my reports to a Neurosurgeon specializing in the Brain not just tumors. She is at Yale New haven and a Top Doc. I am waiting to hear back as to guidance and what I should do next. She did get on the phone after I faxed over all my tests from 2003 and her concern was the chronic ischemic lesion to the right of midline within the cerebellar tonsil. She stated no surgery no anything until we figure out what that is has it is in a very dangerous area and if disrupted can cause serious issues. So I am waiting for her to direct me to a Dr that can guide me through this now what I call a maze of issues. Thanks For answering Jim

Title: Re: Another AN case
Post by: voron999 on September 07, 2017, 08:18:21 am

OK, back from my 6 month check - no growth.

The ENT specialist feels I had this tumor for long time in this present state and this is how I lost some of my hearing on the left side (due to the growth).
Unsure, but fine. The hearing is about the same.

My tinnitus became more pronounced and more general (not just one side now).
But I can live with this and the "no growth" is good news.

Next check in 12 months now.
Moving on.

Title: Re: Another AN case
Post by: ANSydney on September 07, 2017, 05:06:55 pm

Congratulations voron. No growth since diagnosis 8 months ago. Hope you're travelling well.

Title: Re: Another AN case
Post by: voron999 on September 11, 2017, 07:57:49 am

Wanted to mention - I have been taking a daily baby aspirin pill close to a year now.

I started this when I found a mention of a baby aspirin pill on this very forum as a possible way to slow tumor growth.
I don't know if it does anything, but I don't think it hurts.

Besides, my bosse's Grandma has been taking a daily baby aspirin pill for long time.
This is the only pill she is taking.
She is turning 102 soon, if I recall.
What is good for 100-year old Grandma can not really hurt a 50-year guy.  :)

Title: Re: Another AN case
Post by: mac84 on September 11, 2017, 12:55:05 pm

I've been taking 2 80mg aspirin each day since 2014.....no growth on mine. I'm going to keep doing it!

Title: Re: Another AN case
Post by: ANSydney on September 11, 2017, 04:54:02 pm

I've had no growth for 12 months since diagnosis and I'm taking daily 75 mg aspirin (regular tablet broken into a quarter). All very anecdotal, but there's really no downside. I may even live to 102!

Title: Re: Another AN case
Post by: JLR on September 11, 2017, 07:17:44 pm

I watch and wait from 2000-2010. The small AN was growing but it was still small enough to do CK which I did. That gave me 6 years then it started to grow.  Was leaning on the trigeminal nerve as well as the brain stem.  No additional radiation as I would have the probable chance of severe swelling and then major problems within my brain. My choices were limited to only who is the best surgeon within the best hospital who has the best neurosurgical floor and staff.  I saw 3 surgeons. Each one said I should have had surgery when it was still small.  I had the surgery on a radiated tumor and with that a host of complications. Although my walking my balance is better. My right side of face is swollen. My mouth droops, hard to put makeup on, I'm totally deaf in my right ear, I still have that very annoying tinnitus although that comes from brain.  I have that wobble head back its all not perfect. Should I have had the surgery in 2010. Would I have retained my hearing, would my face be symmetrical. Could a would a should a.  Stay well friends,  joan.