rate of AN growth following de-bulking microsurgery

[leapyrtwins]

Through a recommendation from a forumite from another AN support group site,

Hmm.  There's another AN support group site    Who knew.

Jan

[morena_azra]

@ Pooter
What you say makes perfect sense actually. He probably needs another debulking surgery first. oh dear.

@dk

Thanks for the tip, I will look for Hrissy's story right now.

@ Jan

Yep, there is another one that I know of. it has a different form than this group, you subscribe to an AN list and then exchange emails with AN sufferers (all see all emails) and you can send them an email asking to join at ANlist@anworld.com

Thanks guys

Azra

[leapyrtwins]

Oh, right. ANWorld.  Been there once, but didn't find the info nearly as comprehensive as what's on the ANA's website so I personally saw no reason to return there.

Glad you found some help there though 

Jan

[morena_azra]

Just a quick update:

We finally managed to get hold of our illusive Dr who admitted that yes, it "looks" as if my brother does indeed need another surgery and that they do not feel competent enough to handle his case any more and that we should look at more specialized clinics with more expertise on AN surgeries. So there, another surgery.:-(
Probably best anyway as my brother lost his balance and fell twice in the past week, that is how much the brainstem is compressed still.

We are considering Slovenia, Hungary, Germany and the States. We might end up with Slovenia as it is the closest, just in case of further complications (God forbid!).

Fingers crossed. Will keep you updated.

Azra

[cyrmom2]

Azra,
I'm sorry to hear that your brother needs another surgery. Best wishes on finding an experienced surgeon that is not too far from you.

Take Care,
Cyndi

[alicia]

OK.  Let's view the positive...at least he is passing your brother to another doctor!!

I am so sorry he is going through all this.  I hope you all are able to find a true specialist that can take care of this tumor once and for all without any more complications!!  Alicia

[morena_azra]

Guys, thanks for your quick replies.

Alicia, you've gone to HEI, right? I was in touch with Dr. Shwartz about my brother, he should be in touch sometime next week after he's reviewed the MRI. I am now wondering what would craniotomy at HEI cost, do you have any idea? We do not have any insurance and would have to pay for this ourselves. That will also play a part in where/who we chose.

Cheers

[alicia]

Yes, I went to House for my surgery last May.  I had Dr. Friedman and Dr. Schwartz.  I am glad you are speaking with them, at least they can give you their opinion.  I will add up the numbers and get back to you.  I have a stack of bills right now that I "think" I am done with and need to officially file away.  They do not need to be on hand anymore!  This will give me reason to look at them and put them behind me!! 

I know many people say about $100,000 - $150,000 with no complications.  But I will give you exacts, hopefully in a few hours.

Make sure you discuss insurance issues with Schwartz.  Also, look up Donnalynn on the forum and PM her about the cost of House.

[morena_azra]

Blimey, that is costly.

I have so far had 1 quote from a Berlin hospital (Germany) for appx EUR 17 thousand, including the procedure and 14 days in hospital.

Thanks for your reply!

Hugs

[alicia]

Let me start with what is billed, is NOT what is paid...

I have a one page report from my insurance company of these exact numbers. Did not even have to use a calculator! 

Here is an idea in rounded numbers -

$180,000 billed from all my interactions in California.  All surgeons, hospital, pathologists, physical therapists...the whole 6 days I was in the hospital.
$52,000 was above the contracted amount (deal between insurance and doctors)
$110,000 was written off (just - POOF - gone)

My insurance paid exactly $17,045.35 for my California, House, portion of this process (I had original diagnostics done in my home state)

All I paid was my $350 deductable, $225 co-insurance (my 20% responsibility) and a few $25 out of pocket doctor visits!

If you consider the United States for treatment, make sure you discuss this "write off" bit first.  You should not ever pay more than 50% in my opinion.  And according to these numbers, 10% is acceptable!

[morena_azra]

Now, how does that work, I can not understand - a bill of over 200 thousand dollars comes to appx 18 thousand dollars? How strange but thank you so much for telling me about this. How weird though.

Well, we could pay up to about 20 thousand dollars and in that case, i would consider HEI definitely. THanks for filling me in on this, i had no idea that such thing as a "Write-off" exists. Food for thought. Let's see what they tell me next week when they review the MRI.
Will keep you posted

BIG HUG!

Azra

[leapyrtwins]

Azra -

insurance services are typically "discounted" here in America because insurance companies make "deals" with healthcare providers.  My bills were discounted because my insurance company has something called a physician network.  If I use physicians and medical facilities in my network, I get cheaper rates than if I use those outside of my network.  My two doctors and my hospital were in the network.  My anesthesiologist wasn't, but agreed to take a lesser fee than he originally charged.  As a result, my AN surgery cost me nothing.  Same for my BAHA surgery - my doc and the hospital were in network.

Lots of times those without insurance coverage don't get discounts and things cost more.

They may not have these discounts in your neck of the woods.  I don't know how this works in other countries.

Jan