My Story

[JamesP]

Hi everybody!  I'm a brand new member (not something I would have ever thought I'd be a member of...) and wanted to post up some information about me to start this journey.

I am a 30-year old active duty Air Force member stationed at Ramstein Air Base, Germany.

For about 6 weeks, I was experiencing persistent, dull headaches.  The HAs were almost always unilateral, with the majority of pain on the right side of my forehead.  I had also been experiencing dizziness and sharp headaches upon standing with a pulsating feeling in my left ear.  I would also get pretty sharp neck pain at the same time.  Most of the time, these symptoms would subside after sitting down; occasionally, the pain wouldn't subside and I would get tinnitus and, sometimes, fullness/hearing loss, also in my left ear.

I saw my PCM on 16 October about these symptoms.  She thought the dizziness and ear problems were caused by increased fluid in my ears/sinuses and put me on seasonal allergy medication in hopes of clearing that up.  The headaches bothered her, and she sent me to get a CT scan around lunchtime.  By 3:30PM, I was sitting back in her office as she explained that my CT scan showed a tumor that was consistent with a vestibular schwannoma.  Thus, my journey began.

I ended up having an MRI this past Tuesday, 22 October, which is super fast for military medicine.  Unfortunately, the neurosurgeon that I was referred to here is on leave this week, so I can't speak to him about it until 30 October.  However, I have been able to track down the radiologist's reports.

The CT scan showed a "rightward midline shift of the brainstem and suggestion of a left CPA mass".  My left internal auditory canal is also enlarged.  The MRI results went further to indicate that I have a 2.7 x 2.5 x 2.3 cm mass that is pressing on the brainstem and is displacing the trigeminal nerve.  The radiologist noted that, while this is most likely an AN, neither a meningioma nor a facial nerve schwannoma can be excluded.

So, for the last week or so, I've spent hours pouring over every resource I can find and understand to figure out what I'm dealing with, what my options are, etc.  Without having talked with a neurosurgeon, I feel that microsurgery is my preferred choice.  As I've spent time looking through everything on these forums, I'm seeing that a 2.7 cm tumor is on the high side for radiotherapy.  The fact that the tumor is pressing on the brainstem also indicates to me that waiting is out of the picture.  However, I'm perfectly fine with getting surgery done.  Since radiotherapy is not as established as microsurgery for this type of tumor, I am worried about the long-term effects of radiation since I am only 30 years old.  Of course, these feelings could all change after I talk with the neurosurgeon.

My biggest concern right now is dealing with the military medicine network.  TRICARE, which handles all of our civilian referrals, can be cumbersome to deal with.  Plus, being stationed overseas means that I have to deal with the TRICARE Overseas region, which is separate from the other TRICARE regions in the US.  I've heard that getting a referral outside of region can be pretty difficult.  Normally, what happens here in Germany is that the member can get referred to a German doctor for a second opinion, but I'm not super comfortable with that.

The reason this is such a big deal for me is not that I don't trust the neurosurgeon.  I will still be giving him the benefit of meeting and discussing his proposed treatment plan.  My concern is with getting a second opinion, which I keep reading is something to be done no matter my feelings of the first neurosurgeon consult.  Also, being single, I don't have the full-time support system here in Germany that I feel I need to have the best possible recovery.  So I'm hoping to get a referral out to the doctors over at Vanderbilt Skull Base Center in Nashville, TN, my hometown.

So, that's my story thus far.  I've come to terms with having this tumor and am ready to determine a treatment plan and get this sucker taken care of.  The only thing that keeps me up at night is what the future holds.  Can I get a referral to go back to the US for treatment?  Will I be able to stay in the military after this is all over?  Things like that...

If anyone has any experience dealing with TRICARE referrals or any comments/suggestions on what I'm dealing with, I'd love to hear them.  Thanks!

James

[PaulW]

Hi James,
I live in Australia but was treated for my Acoustic Neuroma at the European Cyberknife Centre in Munich.
Because Australia did not have a Cyberknife or Gamma Knife at the time, I actually chose to be treated in Germany.
It was very easy.
I have nothing but praise for Dr Muacevic his English is excellent. He started his career doing microsurgery and switched to Gamma Knife in the nineties and then to Cyberknife in 2005. Dr Muacevic is currently the Chairman of the Radiosurgery Society, and very highly regarded by his peers. The European Cyberknife Centre have installed the latest Cyberknife M6 which has the ability to shape the beam to match the tumour. If you are looking for a second opinion I can highly recommend this doctor and facility.

On tumour size, its actually tumour volume which determines the cutoff size. the 3cm rule is a little simplistic and is done for our purposes. I believe the cutoff size is typically 12.5cm3. A 2.5cm sphere is 6.13cm3. So you are in fact only half way to the cutoff size.
Complications and total radiation exposure are related to the treatment volume. 

Some links

http://www.accuray.com/pressroom/press-releases/first-patient-treated-worldwide-new-cyberknife%C2%AE-m6%E2%84%A2-system

http://www.cyber-knife.net/en.html

[MarlaB]

Maybe this is a stupid question for me to ask you, but did you ask the doc you are not satisfied with how many AN surgeries he does a year?  I think it's a reasonable expectation that your doc should do 1 to 3 a month, and that he or she has done at least 200.  At least, that's what most insurance policies should cover...a reasonable expectation of beneficial treatment.

Good luck!  Keep us posted.

Marla B.

[JamesP]

Thanks for the responses thus far!

Paul, my biggest concern is the fact that the tumor is, as far as I can tell, pressing on my brainstem.  At least, it's touching the brainstem.  The doctor should be able to tell me more on Wednesday.  I haven't completely ruled out radiotherapy, but I just don't know that I feel comfortable with it.  I'll probably still try to talk to someone about it, either the surgeon on Wednesday or a consult with a different doctor.

Marla, I haven't yet talked with the surgeon.  However, that is one of the questions I plan on asking.  My assumption is that it's probably fairly low, as the military hospital here sees a relatively young population.  But we'll see.  This is one of several reasons I want to be referred to Nashville.

[deborahgordon]

hi James, i served in the USAF and first want to say thank you for your service and protection.  I know how hard it is being at the mercy of the care system in place.  I will keep you in my prayers.  I have finally been able to change doctors, as i didn't care for my first one at all.  my surgery is scheduled for dec 3rd.  I know it will be hard to get through the red tape, but find out how many surgeries your doctor has done.  find out his qualifications and training.  If he isn't qualified enough or have enough training you can put in a request for a second opinion.  I know being out and using VA benefits is easier,(and I say this with a chuckle because using any military benefits isn't easy by any definition), but after asking for a second opinion and finally being granted one I was able to go to another VA hospital with another group of docs who are so much more qualified.  good luck with your quest.  you are still at a size that you have time to make decisions you are comfortable with.  the internet makes available to us the ability to research the doctors and you have found a great place to find answers.  if you post again try asking in the key words germany:doctors? it might help with people who skim over the new post section to reach out to those with info you are looking for.  keep us updated, deborah

[Jill Marie]

Hi James,

It's been 20 years since my surgery so any info. I have is very outdated.  Just wanted to say Hi and thank you for serving!  I was at Ramstein in 2005 when our son was at Landstuhl Hospital.  Is that where you would have your surgery if you don't get to come back to the states?  Any possibility they would would fly a family member or two to Germany to help you recover?  I'm assuming they only do that if you are in the hospital do to combat issues but thought you might check on that. 

Good luck with working through the Military system, I know it has frustrated my son for years.  Please keep in touch through your process, even if we can't help it usually helps to have a place to vent. 

Take Care, Jill 

[Suu]

G'day from another Aussie.
You sound so calm!  I'm glad you found us here and hope that we can be as much of a support as you need.  Lean on us because we have at least one good ear, and one good eye but 2 great shoulders! 
Suu xxoo

[JamesP]

Suu, I'm a very logical person, so data and statistics calms me.  I'm at the point now where I know there's nothing that can be done but to take care of the tumor, one way or the other.  There's nothing I can do now that changes the fact that I have a tumor, so, for me at least, there's no sense in freaking out.  That said, I've had a few freak out moments, especially when reading some difficult outcomes that I've seen.  But I believe that I can have the best outcome available, and, if something goes wrong, I believe I can persevere.  *Cue George Michael's "Faith* 

Jill, Landstuhl is where I'm being treated thus far.  I talked with my PCM who thinks I'm rushing things thus far and should wait to talk to the neurosurgeon.  I can't help it when they give someone like me 10 days to do research!  But I see the neurosurgeon on Wednesday, and we'll take it from there.  Talking with my leadership, there is a way for my parents to be flown out.  The surgeon just has to code me a certain way.  If surgery here in Germany is the direction we take, I'll start working on that soon after the decision.

But I'd really love to go back to the States for surgery.  I'm hoping I get a good idea, one way or the other, what will happen on Wednesday.

Thanks again for the replies!

[mesafinn]

James,

I read your post the other day and wasn't sure what to write--but I've been thinking of you since.   Just wanted to first say thank you for your service.

I am several years older than you, but I, too, was concerned about the long-term effects of GK.   I then read an article about the first person who had had GK treatment in the U.S., twenty-five years later.  He was doing just great and living fully.  I found that encouraging and promising and took the plunge myself.

But it's such a personal decision and all circumstances are different.   You are a fighter and survivor, and I know you will continue to approach this well:  reading about all the research you have been doing is fantastic.  Take your time to learn, think and discern.

I wish you only the best.

Patrick

[JamesP]

Hey, guys. So I talked with a neurosurgeon here at Landstuhl yesterday. He told me that they don't do any AN treatment out here, so I'm being referred back to the US. I talked with someone today to start the referral process. As it stands, they want to send me to Walter Reed Medical Center in DC. I also talked with a Tricare nurse about a referral to Vanderbit University. He's working on getting me set up with a case manager to talk about the referral.