Altitude and ANs

[Nancy Drew]

Hi!

I live in Denver, the mile high city.  The past three times I went to the mountains (up to 11,000 feet above sea level), I have had some weird things happen in my AN ear.  The first two times I went up for day trips to snowshoe.  My AN ear was fine going up, but when I came down from the mountains my ear plugged up and I could hardly hear out of it.  It returned to normal in a couple of hours.  A couple of weekends ago I went up for an overnight trip.  While I was there my ear gave me no problems at all.  In fact my ear felt better than ever.  Coming back down the tinnitus became louder than ever, and I had bad ear pain which lasted for several days.  Does the altitude affect ANs?  I am almost scared to go up in the mountains again.  And on a side note, when I went to the AN doc last week he did the usual look in the ears with that instrument they use.  My ear hurt for several days after.  My AN seems to be saying, "Don't mess with me." 

Thanks,

Nancy

[Jim Scott]

Nancy:

I believe (but don't know for an absolute medical fact) that acoustic neuromas can be aggravated by high altitudes (pressure).  That your ear pain would be inconsistent is not surprising as inconsistency is a trait of ANs.   

The doctor's ear-poking may have been a bit over-enthusiastic or perhaps the ear is over-sensitive.  I doubt the doctor's pokes came close enough to the AN to disturb it.  These are really good questions for your AN doctor.  I'm just guessing.   

Jim

[cindyj]

Hi Nancy,

This past December, I flew to Key West and I thought my right ear was going to burst while on the plane!  For the next day or two I could not hear out of that ear, but then things cleared up.  I did not know I had an AN at the time, just thought it was another weird ear thing for me.  Did the AN cause it?  Who knows, but sure seems suspicious to me

...I'll catch up on your PM to me in just a bit!

Cindy

[Dog Lover]

Hi Nancy,

I lived in the Denver area (Arvada, Thornton) for 10 yrs before moving back to IA last year. The first time I ever had problems with my AN ear, was similar to what you described. My ear totally plugged up, couldn't hear out of it for several days. That's when the tinnitis started. That happened a few times in a year before I moved.

I've been told that I've probably had this for 5 or more years. We used to have mountain property by Canyon City (approx 8,000 ft.). I don't remember having any symptoms then, but maybe it wasn't big enough to even notice then?

Sometimes I did (and still do occasionally ) notice that my ear would just ache for a few days. Then would be fine. Didn't know why then. Now I suspect is was the AN. 

Cathy

[robynabc]

Hi,

I have  lived in Colorado  my whole life and my son was the one with the AN.  I have been over so many passes since I was a girl I can't even count.   But I have tons of trouble with my ears when I go in the high altitude.  When I go over 10,000 feet I have trouble and sometimes my ears are so bad that it takes hours to get them unplugged.    I know that when I was pregnant they told me not to go over 10.000 feet.  So,  If it were me I would just know your limits and maybe just decide if you want to go too high until you know how it affects you. I don't know if it is anything beyond discomfort for the AN.   I have always hated going above tree line.  I can tell as soon as I hit tree line.  That might be in my head but I always thought if the trees can't breathe then I don't know if I can.  Also,  it was always worse for my ears when I had a cold.  Of course you should always take it slow.  If in a car going over a pass it is always best to maybe stop and let your ears adjust.  I always have trouble going down passes because you go down so fast.  Taking a break helps my ears.  I hope that helps.  I hate that high altitude feeling but oh do I love the mountains.   Always have. And it is the worst going down the big hill into Denver. 

Just know it is the same for alot of people without ANs but I suspect the AN makes it worse.  I don't know how many people have AN's and live near high altitude so I don't know if they know how it affects them.  Eric has not been in the mountains since the surgery so I wonder how it will affect him.

Robyn

 

[Nancy Drew]

Hi Robyn,

Sorry to hear that your young son has had to go through so much with his AN.  Glad to hear that he is having success post surgery.  Darn that altitude.  I am so sorry to hear that you have problems with the altitude here in CO.  I have never had problems with the altitude except motion sickness and maybe an occasional slight ear pop.  I have lived in CO for 16 years, and I go up in the mountains often.  My AN ear has had problems the past three times I have been in the mountains.  Makes me think that something is going on with my AN.  I am having GK mid-Sept.  It will be interesting to see how my ear reacts once I have GK under my belt.  Hope your son will not have any problems when he goes in the mountains.  I might fear what my AN ear might do in the mountains, but it won't keep me away.  We live in a beautiful state.  I love looking at the Rockies, but I love hiking, snowshoeing and camping in them more. 

Nancy 

[robynabc]

Hi Nancy,

I do feel fortunate for growing up here.  I am a rare native.  I know I could never live anywhere else.  Maybe by the ocean but I know I would have to come back.  I really think that taking your time coming down would help.  I have more trouble when we are up there for a few days.  I doubt that it is more than a discomfort thing but maybe your doc will know more.  Is your doctor in Denver?  If so I would be curious who.

I remember hiking with some girlfriends years ago and we got a little lost up by Golden Gate State Park.  I started getting really upset and I just wanted to get out of there after walking around for 2 hours.  I will never forget my friend saying that would be a beautiful place to die.  I thought that she was nuts but you know,  I am thinking that we  will go do that stuff anyway no matter what it does to us.  The mountains just call you.  I really feel like they look at me and call me and once they hypnotize  you can't stop. You just go up like a zombie.   You feel close to God up there. 

Good Luck Hon.

Robyn

[Nancy Drew]

Hi Robyn,

I grew up in Mississippi so moving out here was a total culture shock.  But, I could never go back now that I am here.  The mountains and this lifestyle here have captured me, and I am hooked.  I hope to be here for many years to come.  My doctor is Dr. Robert Feehs, and I will be having GK at the Swedish Gamma Knife Center.  I feel very comfortable with the team at Swedish, and I think since my AN is so small it will respond well to GK.

Nancy

[robynabc]

Yes,  Nancy.  No offense but it is so hard because Eric and I have laughed about it before.  Once you go Colorado you never go back.  And it is all you guys that move here and get hooked that has grown Colorado so much.  I am getting better about it but it is hard for me to see the changes that growth brings.   It is funny I never realized it until you said that but I guess COLO is a culture.  I am trying to figure out why the natives leave?  There are so few of us.   

I have never been to the south.  I hear that is quite a culture too.   There are some that can't handle the dryness here.  And there is a sick period with the altitude.  Did you have that?  We had some neighbors that moved here from Alabama and they made it 6 weeks and moved back.  They hated it.   

Good luck with GK.  How many GK places are there here?

Robyn

[leapyrtwins]

I traveled to Denver 6 weeks post op and was concerned that the altitude would be an issue for me.  Fortunately, it wasn't.

I even took the cog train to Pike's Peak and no problems whatsoever.  I don't know if that was because my AN was gone by that point, or not 

Jan

[Nancy Drew]

Hi Robyn,

I am sorry us foreigners have taken over your state.  I have definitely seen the negative effects of growth since I moved here 16 years ago.  I can't imagine anyone moving away from this beautiful place.  Maybe I can justify my move here by sayiing I have taken the spot of someone who left.  Now I don't feel so guilty.  I have oily skin so the dryness is great for me.  My husband has dry skin, but it is his problem since I tell him he should just use lotion.  I don't want to get in trouble with any of my southern friends, but I will tell you that it is definitely a different kind of culture down south.  A lot depends on where you go as well.  The big cities are more diverse, and the small towns are more unique.  I am from a really small town, and I love to go back to visit.  But, my heart is here now.

Back on subject--there are two GK facilities here in CO.  The one at Swedish and one at St. Anthony's Hospital.  The GK machine at Swedish is newer.  There is also a CK facility in Boulder, and one of the doctors I spoke to said they plan to get a CK center in another hospital here in Denver.  My original AN doc was David Kelsall, M.D.  He also uses the GK at Swedish.  He is an excellent doctor, but I just decided that Dr. Feehs was a better fit for me based on personality.  I also had a second opinion from Dr. Cass at University Hospital.  I do not recognize the names of the doctors who treated your son.  Of course, I was never going the surgery path from the beginning since my tumor is so small, and I think it will respond better by going with GK.  Just a personal decision for me.

Here's to Colorado!

Nancy

[robynabc]

Hi Nancy,

Dr. Cass is with the same office that Dr. Jenkins is in.  With Eric's size issues I would have never gone with anyone but Jenkins.  If he were not available then we would have gone to house.  NOt that Cass is not good but since Eric had such a large tumor we needed the best and I didn't settle for anything less.  Even if it was just a little less.  IMHO,  Dr Jenkins and Lilihei are the only ones in Denver that we would go to.  House was next.  That's as far as surgery.  I think that CK and GK doctors are different. 

I am glad that your tumor is so small I know it doesn't feel like it because you do have a tumor but comparatively you are lucky.

I am from a small town here in Colorado too.  But a mountain town, Craig.  We were always 20 years behind the city.  I miss living up there but it is alot different now.  I can't believe how expensive it is.  At any rate.  When you grow up here or live here as long as you have you know you could never live anywhere else.  This is Gods country.  LOL.

And the reason we have blue and orange sunsets is because God is a Bronco fan.  LOL  I couldn't resist.


Robyn

[robynabc]

OT even more.  Nancy is your name really Nancy Drew?

Robyn

[Nancy Drew]

Hi Robyn,

My first name is Nancy.  I just did Drew for the fun of it.  Also seems like everyone remembers who I am when they see my name come up.  And, my name comes up often.  I hear Craig is pretty.  I haven't been there, but maybe I'll make it one day.  There are so many places to see and things to do in CO.  I live in Centennial, a burb of Denver.

I wasn't impressed with Dr. Cass to be honest.  He gave me his opinion initially from looking at the written MRI reports only.  He said my AN had not grown and to just continue to W&W.  I asked him to please look at my MRI CDs, and he said he didn't have a disk player on his computer.  He went down the hall to find one, and he said the computer was broken.  Finally the assistant suggested he go down to the basement to see if the computer room could send my MRI up to his computer.  Once he got to look at it, he said it had definitely grown and changed in shape.  Then he said to go either way--radiation or continue to W&W.  Then he said I should just continue to W&W.  To be honest, I wouldn't let him go near my AN.  Some other people I have met here said they were not too impressed with him either.  Sounds like you did the right thing going with the doctors you did.  I think the GK Center here has an excellent reputation.  My doc trained at Pittsburg which is one of the top GK centers in the country.  He has a good team working with him.

I agree with what you said about the sunsets, and I am a HUGE Bronco fan.  Colorado does get in your blood.  It is a beautiful state with many things to do.

Best Wishes to your son.  You sound like a loving and caring mom.  You son is fortunate to have you on his "team".

Nancy 

[robynabc]

Hi Nancy,

I am in Centennial too.  Around Smoky Hill and Buckley.

I have not met Cass but I have heard stuff too.  I have to say that Dr Jenkins wasn't exactly easy to talk to.  I had to remember that they are surgeons and surgeons are weird.  No offense.    i wasn't there for his bedside manner.  His bedside manner was terrifying.  But he is a fantastic surgeon.  It took some time to figure that out.  I called almost every ENT I could find in Colorado and they all said he was fantastic and same with Lillihei.   I will caution you though.  I would not go to the Swedish team for surgery.  I am sure the CK or GK is different. 

I am sure you are going to do great and I am glad your tumor is so small. 

Robyn