Altitude and ANs

[Nancy Drew]

Hi Robyn,

I guess we have hyjacked this page as they say, but that is OK.  I live close to Park Meadows Mall.  Since I never considered surgery, and I am not sure which surgeons you are referring to at Swedish.  I know that both of the AN docs I have seen do surgery, but I don't know their reputation.  I have only heard that they are really reputable with the GK there.  The neurosurgeon, Dr. Paul Elliott, who will be a part of the team was super nice.  And, I really like Dr. Feehs.  He is a laid back kind of guy who talks in non-medical language.  He also has the most experience with GK in the area.  I guess you have to go with who you feel comfortable with and sometimes that means putting up with not so great bedside manner in exchange for a really topnotch doctor.  Just nice when you can get the whole package.  I hope your son is getting good follow-up care.  I think it must be hard on a kid to have to deal with a doc who doesn't have a great personality.  Did he have his surgery at Children's Hospital?  Just curious.  I do volunteer work there.

Nancy

[robynabc]

Yes,  We have hijacked this page but since you started it,  I will try not to feel bad.  I don't know the first thing about GK so really I am sure your docs are great.  As far as like actual surgery I think it is really important that they have done hundreds and hundreds.  I am so glad your tumor is small.  I am sure this will work great.  Dr. Jenkins and Lillihei are good.  Alot of my decision with Eric stemmed from the fact that I didn't want any of the tumor left if possible.  The younger you are the more of a chance of regrowth and I felt like our other option really wanted to leave part of the tumor. 

As far as Cass.  He was never an option and I would not have had him do surgery.  It was hard to have Dr. Jenkins but he is a fantastic surgeon and after everything was over he really did care alot about Eric.  He went out of the country a couple days after Eric's surgery and called many times to see how he was doing.  He just was very blunt.  And it was funny after the surgery was over he seemed to have a better sense of humor about everything.  I think he is just very serious about it. 

Park Meadows is such a nice area down there. 

I am so glad your tumor is small so you can avoid surgery,  and I know it is going to go great.   
'

What do you think is going to happen at Mile High tomorrow with all this DNC stuff.  Traffic is going to be a nightmare.



Robyn

[Nancy Drew]

Hopefully Mile High will be peaceful.  They will have to be respectful of our wonderful Bronco stadium.  Broncos is a religion out here, and God or our higher power would be mad if they had something go wrong there.  Hopefully people on the outside will see what a beautiful state we live in, but then they will just come drop some of their $$$ here and leave.

I can totally understand why you wanted your son to have his tumor removed instead of having it zapped.  At his age, he doesn't need to worry about that bugger still being in his head.  I hope once mine is zapped, it will just sit and be happy  and show no problems in the future.  Does your son have the NF2 kind of AN?  If so will he have more worries down the road?

Keeping you in my thoughts and hoping that all goes well for you and your son in this journey.  Take a deep breath of the Rocky Mountain Air and relax!!! Peace to you.

Nancy

[robynabc]

Broncos are a religion and I am devout.  I am still mad at this city for tearing down my beloved and true Mile High Stadium.  There was a period in the late 80,s and through the nineties that they went through a "let's tear up this city"  thing.   I will never forgive them for tearing down an ICON!   My family laughs when I get started.  I had to deal with losing Mile High,  John Elway,  and Patrick Roy all in just a few years.  I still throw fits when I see the New Mile Stadium.   Eric just laughs because I still think Elway might come back someday.  LOL

Eric was not a candidate for CK or GK.  We were totally under the gun and had to find a surgeon quickly.  He had surgery a month after we picked our surgeon. I don't know if he has NF2.  Lord,  I hope not.  I admit the chances are higher because he is young.  I don't have any family on my paternal side,  I mean I do but I don't know them.  But when I met my family once when I was young,  I remember them saying that my real father died of leukemia at like 30 and my paternal grandfather dying of a brain tumor . It was probably cancer but back then Surgery was not what it is today so that is probably unlikely.   I know nothing more than that but sometimes that worries me.  The doctors think it is unlikely because Eric's tumor is so large and they think it has been growing for a long time I think they think that another one would of shown up by now.

This is strange but a year before Eric was Diagnosed,  My 22 year old was getting really bad headaches and it is a very long story but she lost part of her vision and actually had a blind spell.  It was terrible and after going to doctor after doctor,  I think it was the 8th one she went to,  they found out that she had a reaction to some meds she was on.  It is really, really rare.  It was called Psuedo Tumor Cerebre,  and it makes the spinal fluid increase and put pressure on the brain.  Basically, an ophthalmologist sees it and we had to take her to an ophthalmologist. It basically mimics a brain tumor.   Once she got of the meds in a few months she was all better.  I feel bad for the people that have this condition because the ones that have it and it is not caused by meds, it doens't go away.  These people lose their vision permanantly in some cases.  It is terrible.  But at the time Kirstin had this,  there was something like 200 hundred cases of it caused by meds.  So in a year we had two rare things and they both had to do with the brain.  How strange. 

Thank you for the thoughts and we will keep you in ours too.  I don't know alot about the CK or GK but I think it will be fairly easy for you from what I see on this board.  I sure wish we could have caught it that early. 

[Nancy Drew]

Wow!  You are a true blue Bronco fan.  I've only lived here for 16 years so I didn't have much invested in the original Mile High Stadium.  The new one is kind of funky looking, but I am not upset like you are.  Hopefully you are getting past the anger!!!  I was actually hoping Terrell Davis was going to come back.  John Elway is a legend, and I hate that he retired.  Hopefully we will get a quarterback one day who wiill do Elway proud.  However, I'm not sure there will ever be anyone who can stand in Elway's shoes.  Must be a tough act to follow.

I haven't heard of any kid as young as Eric getting an AN.  All of you must have been freaked when it was discovered, and then brain surgery on top of it all.  That is weird stuff with your daughter, too.  I am glad the docs got to the root of her problem.  I only have one child, a son (24 years old), and he has always been healthy, and I can't imagine what it would be like to have a sick child.  I volunteer at Children's Hospital, and I can honestly say that the parents often look more worn down than the kids.  Seems like kids can be little troopers through the worst of times, or at least that is what I have seen at the hospital.

Interesting about your daughter having problems with the medication.  A bad reaction to a medication I was taking is what led to the discovery of my AN.  I was getting bad vertigo that the ENT could not figure out.  Thought it was an ear infection, a viral infection.....he just had no clue.  He sent me for a MRI, and that is when they found the AN.  However, the vertigo hung on, and my AN doc said it probably wasn't a symptom caused by the AN.  He said maybe a migraine headache without the headache.  I have heard of these kinds of headaches, but in my long history of having migraines, I had never had one like this.  The vetigo would start in the morning and usually continue on until noon, and then completely disappear.  I hated my life.  Couldn't imagine having to live the rest of my life with the spinning every morning.  Finally, my psychiatrist got to the root of the problem.  I had been taking the same bipolar medication for over 12 years.  I started getting depressed and over a period of time he raised the dose.  I split the dose, but the a.m. dose is where he increased my meds.  He had an idea to get a med level, and it turned out that my Lamictal level was way too high.  Once I went back to my regular dose, the vertigo stopped.  So, I guess you can say that is how my bipolar met my AN.  In a way, it is great that that happened because it allowed me to find the AN while it was small.  I am on top of my bipolar now, but the anxiety is out the roof.  I think once I get the GK, things will settle down.  I feel pretty confident that I will have a positive outcome.

Take Care,

Nancy

[robynabc]

Hi,

Wow Nancy.  I have PTSD and an anxiety disorder.  I have anxiety alot.  I have my good days and bad days.  I know how it feels.  I am sorry that happened to you. 

I am watching the speech right now and I can live with the DNC coming to Denver and taking over my stadium but I am having a hard time with them covering up the ring of fame with Obama signs.  LOL. 

I am a true sports fan.  And Broncos is still my first love. 

I hope you feel better.  Just know I am right there with you.  My Eric is having a rough night.  He has a cold and it is upsetting his throat.  I hope we all are better tomorrow. 

I think he is feeling a little weary right now.  I am too.  It is very hard to be a parent of a child that has had these issues. 

Robyn

[Nancy Drew]

Hi Robyn,

I am so sorry to hear that your son is not feeling well.  I am sure he is glad that he has his "mommy" to take care of him.  I don't care how old our kids are, they are still our little babies.  Hope he feels better soon.

I was watching the DNC also and noticed they covered up the ring of fame.  How disrespectful of them.  At least they didn't tear the stadium apart, but that sure was a lot of confetti.  I feel sorry for the folks who have to clean all of that up.  Hopefully it was recycled paper!!! 

I also have PTSD along with other anxiety issues.  You should have seen me during those two Super Bowl seasons the Broncos had.  I thought I was going to die, especially the first one against Green Bay.  My husband had to step outside a couple of times because it was just too much nervous energy for him.  I bet you know a lot of the stats and players names, etc. so you have me beat there.  Please don't tell me you have a blue and orange room in your house!!!  If you do, then I will know that you are really "sick"!!!  Just kidding.  People know not to call or knock on my door on game days. 

I am getting more used to the Oct. date, but it really pisses me off that they sort of implied the Sept. date several times.  "We try to schedule the procedure as soon as possible so the patient doesn't have to experience anxiety after making their decision."  Yeah, right!!!  Oh well, it will happen, and I won't get my feathers in a ruffle.  And just think, the BRONCOS will be well into their winning season so that will make the time go by faster.

Thanks for writing Robyn.  You are a hoot!  Cheers for the Orange and Blue and may John Elway and the others get "over it" that their names were covered up.  Still, shame on the DNC.  And isn't Elway a Republican?  He should be really pissed!!!

Nancy

[robynabc]

Hi Nancy,

Saw that you are going on vacation.  Have a good time.  I can tell you, GK is by far easier than the surgery.  The waiting is the hardest part.  It will be over soon.  Go on a well deserved Vacation!  The work is over.

Waiting for Eric's surgery was not pleasant.  We were all having problems sleeping.

It is much better after.

On the Broncos note.   I want to declare I do not have a Blue and ORange Room or painted automobile.  I will admit that I have a very gaudy Blue and Orange boot for a Christmas stocking.  It has bells and is very ugly.  But I love it anyway.  I will also report that we have something called a hockey shrine during Hockey playoff games and a red light just like the light on the nets.  We praise the hockey god and light candles around an Avalanche hockey puck on playoff games.   This is true. I am not sure how this got going.  I remember it starting during a redwings playoff game. 

You have no idea what I went through on the Super Bowls we won.  You have to remember I went through 4 losing super bowls.  I am embarrassed to admit this and now the whole ANA board is going to know but we had a huge Bronco Party and we all drank,  ALOT!  Then after the Green Bay super bowl, we went to a friend of ours house that is an obnoxious Green Bay Fan (is there any other kind?)  Just kidding,  we went to his house and lit fire crackers on his driveway.  It was hysterical.  That is when I used to drink.  I don't anymore.  We did butter baby shots on touchdowns and field goals.  Then I think it changed to first downs later.  LOL   If the Broncos go to another super bowl I am going to have to start drinking again.  The Rockies last year were  crazy for me and Eric.  I wanted to start drinking during that too. Not to mention all the other tumor stuff. 

Anyway,  now you all know about my past Super Bowl Bronco Parties and our Hockey God as we call him.

I sure hope Eric is better tomorrow.  I had to call the Asthma Doc.  He is really frustrated and sick of coughing.  I am hoping to get this physical therapy locked down soon.  I sure hope they can help him.   I am going to have to get the insurance to cover the one I want.  So this will be fun. Being sarcastic, of course. 

Peace and have fun this weekend.    Sorry for the hijack guys. 

[Nancy Drew]

Hi again Robyn,

You are an officially "sick" sports fan, and I love it.  No wonder you love CO so much because we have every major sports team here.  If you ever moved, you would have to go into some serious heavy duty therapy--maybe even put in a padded room.  The drinking stuff just happens when you' re watching the game with friends.  But, glad to hear that you quit drinking if that is what you needed to do.  Hard to do, and I admire you.

As for hyjacking, I don't think anyone cares.  Have you noticed that we are now the only ones posting here.  We have scared everyone off with our Bronco jibber.  I was just thinking this morning.  If the DNC had wanted to be sensitive to our BRONCOS home field, they could have at least added orange confetti to the mix.  That would have been a sign of respect in my book!!!

Hope your son gets better soon.  I am looking forward to my vacation.  It will help give me some distraction that I so badly need.

Take Care,

Nancy

[ppearl214]

As for hyjacking, I don't think anyone cares.  Have you noticed that we are now the only ones posting here. 

oh, we're watching...we're watching.... so, what is this about Altitude and AN's, huh? 
Phyl

[robynabc]

HI Nancy,

I am sure everyone is sitting back and eating popcorn and watching about what I am going to spill next.

I did not mean to say that I am an alcoholic and it was hard to stop drinking.  I just had some crazy Bronco parties.  LOL. 

It was all in fun.    Let's see next time maybe I will talk about when I used to go camping before I got divorced and we used to shoot potato guns and what we used to do around the campfire.  Oh this is only about "high"  altitude and not AN's.   Just kidding. 


Eric is doing better.  I hope you all have a great weekend.

Robyn

[Nancy Drew]

Hi Robyn,

OK!!!  Good to clear up the beers and cheers issue.  I am getting excited about the season opener with Oakland.  What a way to start out!  We will have to start a new post now that Phyl has caught up with us.  Maybe we could call it BRONCOS fans with ANs Only!  Maybe we could get a few to join in!!!

As for the altitude,  Oops. . . . it did it again!!!  (Sorry, that was bad humor!)  Just got back from Oklahoma yesterday, and once back in Denver, the mile high city, my ear started acting up again.  Ear pressure and pain, loud tinnitus......gotta have something to do with the altitude since this keeps happening to me.  It will be interesting to see what happens once I have GK in Oct.  Glad your son is doing better, Robyn.

Phyl,

Welcome to our nightmare!!!  Glad you caught us.  I don't feel so guilty now!!! 

Nancy  

[robynabc]

Nancy,

I have that same issue with the coming back to Denver thing.  I don't like it either.   I hate actually.  BUt I would deal with that anyday over high humidity. 

I doubt we could get many to join our Broncos club.  But I would love to know how many are out there.  I can't wait for football.  I love Sundays. 

[Nancy Drew]

Robyn,

I grew up in the south, and I never knew anything else but humidity.  Once I moved out here to CO, I thought I was in heaven (CO is heaven, right?).  When I go back to humidity, I just about die.  It just zaps my energy, and I hate it when the sweat sets in.  Don't forget that it's MONDAY NIGHT FOOTBALL this coming week.  Yes, Sundays are nice.  Except don't give me a losing game before bedtime.  It just ruins my sleep.  And my mouth can get pretty "dirty" during the games.  I would hate to take my blood pressure on game day!!!

Enjoy the game.

Nancy

[Nancy Drew]

Robyn . . . .

Back to the altitude issue.  Seems like the BRONCOS were on a Rocky Mountain high last night in Oakland.  We know that Oakland is a really, really bad team, but I hope the Broncos are going to be a really, really good team this year.  They sure did look good last night.  I wonder if people with ANs who come here from out of state to attend the game have problems with the altitude affecting their ANs.  Seems like the visiting team always wants to blame everything on the altitude when things aren't going their way.  Have you noticed that?

Nancy