I need to know the steps you go thru as the tumor starts pressing on brain stem

[Razor]

  I have a 2.5x2.1x2.0 tumor in my right ear an the Dr. said after looking at the MRI that it starting to press on my brainstem. I got the message yesterday that there is a problem with my insurance an the ball was dropped there. I am on Medicare A & B with Choice PPO. Is there a web site that will walk me thru the steps of progression of what can happen if I can't get it taken care of, so I am aware of what to look foward to. I really thank all for the help an have a great an safe day.

[Patti UT]

Razor,
  I am sorry you are having to deal with this, and especailly an Insurance problem.  Mine was 2cm and just "kissing" the brainstem but not pressing on it yet.  My understanding is that once it starts pressing on it, you need to do something pretty soon. I would think though that at 2.5cm you still have some time to research and find your best option for treatment.  ALso, at 2.5 you may still be a canidate for radio surgery.  You will find lots of good information here. DO  allot of research, and get on Medicare ASAP.  Perhaps there is an advocate for Medicare patients in your area that can help you with this.  Call you local health dept and ask.

Good Luck,  make sure you get yourself informed before making a decision on what to do.

patti UT

[Yvette]

Hi Razor, I'm sorry you have to deal with these frustrations on top of dealing with having an AN! My AN was 3cm, and was set a little further back apparently than the usual placement. I had perfect hearing until the translab surgery:-(     My progressive symptoms were tingling on my right cheek, then lips, then numbness of the right side of my face, balance issues/vertigo, tongue numbness on the AN side, then my right arm felt asleep off and on, then problems with my right hand. I kept dropping things. Occasionally I would feel pressure at the base of my skull on the right side. My neurologist (who sent me to the neuro surgeon at Mayo Clinic) said he feared that it would begin to affect my ability to swallow. So I stopped putting off treatment. I'm recovering and doing well now-SSD though:-(     I hope you get your treatment back on track, let us know! best wishes, Yvette

[Raydean]

Hi Razor

Your medical doctor should be able to assist you in appealing the insurance decision if the problem is denial.  (not sure what you meant by the ball was dropped).  If it's a case of one of your Doctor not accepting your insurance that that's another problem, as is pre existing conditions. 

Could you share some of the details of the problem with the insurance so that we might be able to assist you more.  A good number of ANer's has ran into Insurance problems and I'm fairly certain that they would have valuable information to share.

Best to you
Raydean 

[Battyp]

Razor I haven't read anyone else's posts but wanted to chime in...
For what it's worth....
My brain stem was highly involved by the time I was diagnosed.  2.54 CM and my brain stem was twisting. My symtpoms progressed from slight tinnitus to LOUD tinnitus and motion sickness.  I was real sleepy all the time, had trouble walking without leaning to one side and had a headache that never went away.  I know they say AN's don't cause headaches but I say they do! Head pressure headache it's all the same to me..either way my head hurt  LOL When driving my car when I turned my head left to right to check for traffic I'd get disorientated and start to lean to the right. I went from hearing on the phone to not hearing on the phone in months.  My advice: do not get on any roller coasters, go in rough surf, climb a ladder, and watch out for smaller airplanes as those things can impact you in different ways and none are pleasant.  Not trying to scare you just giving you a guideline.  If you notice constant headache ask for decadron which should help relieve the head pressure, hearing issues, balance issues, call the doctor!

All my best to you!

[Pembo]

My an was also pushing on the brainstem. My dr said that was the cause of my constant fatigue. I was taking 2-3 naps a day and was still tired. I was only 35 at the time. I could out-sleep my baby. Definitely keep on your doctors office to get those insurance issues resolved.

[satman]

not to freak you out  razor but the doc told me that in 6mos i would be a dead man if i didnt have surgery . granted it was the size of a lemon.needless to say i  had it removed on april 9 2007,stay on top of it i had headaches with dizziness,sometimes i had trouble walking.now im doing the rehab thing,using a walker.slight droop with lips on left side,my eye blinks and mostly closes,have to use this lubricant every 4 hrs,getting depressed over all that, wondering when will i be somewhat normal again?its hard to deal with at 41years old,as with any age i imagine.  STAY ON TOP OF IT!

[Jim Scott]

Hi, Razor:

Despite the relatively small size of your AN tumor, if it's pressing on your brain stem, I would follow your physicians advice and consider treatment as soon as possible. The insurance issue is another matter.  I'm no expert, but as this is a potentially life-threatening situation (if not treated), your doctor should make that fact known to both the Medicare administration and your PPO.  It can't hurt your claim but it might help.

You may well be a candidate for radiation instead of surgery, depending on the exact position of the tumor.  I would get a second opinion - at least- from another doctor before committing to any form of treatment.  In any case, try not to panic.  That won't help.  We all wish you the very best as you deal with this situation.  Stay strong.

Jim

[TP]

Hi Razor, first of all I am sure this seems very confusing. You find out you have a brain tumor and BOOM you have so much going on and decisions to make and then you find out your insurance company is not behaving! Assuming you have an AN more than likely you have had this for sometime. I had pain in my neck and arm for almost a year and was treated by a pain DR to finally learn that my hearing was going bad and I started to get head aches. My pain Dr scheduled a Brain MRI (I initially had a neck MRI but the radiologist missed seeing the AN-it was visible) . Within one day of my brain MRI I was seeing a neurosurgeon. He reviewed my MRI and said my AN was on my brainstem and I had to have it removed. I had to cancel my yearly trip for a karate tournament because he said I needed to have the surgery within the month. I was not a happy camper. When an AN is on the brainstem or pushing it - it has a sense of urgency.

However, I would contact your Dr, ask him/her what the diagnosis is and when they suggest you need to do something. More than likely you have time to get all the facts and resolve any problems with your insurance company. However, I would "assume" your Dr's office will help you in understanding why your insurance company dropped the ball.  It may just be your Dr is not on their "list" of approved Dr's.

This is a great website. Please feel free to post any other questions. We have some very knowledegable folks who will help you thru this time. I didn't find this website until about 9 months after my surgery. I wish I had found this site before, I would have learned so much more! 

You are in our prayers!

[tony]

I saw your note and understand your concerns
a couple of thoughts - ONE the brainstem is a soft cord like material
that can be displaced (slowly) at 2mm per year without
too many serious consequences - providing the displacement
is removed it will usually return to the straight and narrow
So yes deal with it - but time may yet be on your side
TWO - practical advice
you may find your balance starts to become unreliable
so basically now is not the time to fix the roof,
or paint the house - or any ladder work.
Basically dont put yourself in a situation where
a sudden giddy spell would cause a heavy fall
- think safety, think careful for a while
It will get better once treated - but meantime
with care...
Best Regards
Tony

[Obita]

Hi Razor:

My AN was 2.5 cm and just touching the brainstem when I was diagnosed.  I couldn't get in to see the Neurotologist for three weeks, radio consult a week later, then I decided on surgery, surgeons booked 7 weeks out etc.....I was not worried about how long it took to get it out at that point because my surgeons were not worried.  The "brainstem" thing sounds scary but a medium size AN touching the brainstem is not uncommon.  If you want to see what a huge AN looks like and what it does to the brainstem, look at Crazycat's film:  http://anausa.org/forum/index.php?topic=2345.msg25251#msg25251  Hi Paul!!  His makes our 2.5ers look pretty small.

Good luck, Kathy

[pearchica]

Hey Razor: Everyone else has done a really good job on addressing the brain stem thing so I am going to make a small attempt to address the insurance issue.

I would get as many opinions as possible-are you located somewhere close to a University Hospital?ie. academic institute either private or public associated with a college).  I had a really good experience with Stanford- specifically for the insurance portion as I was Blue Shield PPO.. one of the local doctors here in Sacramento didn't accept my insurance plan. I had no problems with Stanford and I'm wondering if academic institutes are more flexible with insurance. I see that you have PPO Choice so you should be able to go where you want.

Good luck. Please know you (and all AN'ers) are in my thoughts and prayers.  Take care, Annie

[Razor]

  I want to thank all of you wonderful people out there that took the time an answered my questions. Its really helpful to have you rock solid people out there to help waylay the high fears and thoughts of all this. Im not one to see Drs. very much in fact I don't unless I have to. One thing that really stagered me was the bills I recieved JUST for setting down and talking with the Drs. The first bill was $310.00 for thirtyfive minutes, the second one was $398.00 for 45 minutes. Now that scares me when its only a consult for my problem. Im going to stop comlaining now before I get started, It just seems that this is the problem with our Medical System. What ever happened to Dr. Marcus Welby? Thanks again all and all have a great day.

[tcrnko]

Another quick reply on the brainstem thing.  My tumor was just at 2cm when diagnosed.  I didn't get concerned until I saw the barain stem displacement, probably about 2-3cm from mid-line.  My neurosurgeon told me I really had nothing to worry about since the tumors grow so slowly.
My symptoms were primarily hearing loss, tinnitus, and balence.  Had my surgery on Jan 10 and was back to work on Feb 28.  SSD, but otherwisk OK.  I was scheduled for a retrosigmoid approach, but that changed on the day before surgery.  My hearing had diminished to almost nothing in my left ear, so It was decided to sacrifice the nerve.  REally actually glad I did because the tinnitus that I had is almost gone, I have full facial function, and minimal balence issues.
Fight like a madman about the insurance.  No-one wants to cover this, but none of us know that it was a pre-existing condition either.  Find tha patient advocate at your local hospital.  They can help you with your rights to care.