ANA Discussion Forum
General Category => AN Issues => Topic started by: morena_azra on January 12, 2010, 09:10:23 am
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Hi guys
Has anybody had any experience with a rapid growth of what is left of the AN after a de-bulking microsurgery?
My brother had a microsurgery on his 3.9cm (longest side) AN 2 months ago and the neurosurgeon told us that they'd taken out most of it and only left a tiny bit to preserve the facial nerve. My brother's MRI done 10 days ago shows the AN to be at 3.5cm (longest side). So, either the residual AN grew rapidly within a few weeks, or the Dr did not tell us the truth initially (still haven't seen him to discuss this as he is on holiday).
Also, could it be possible that there is a swelling around the residual tumor that shows on MRI as "residual tumor"?
Confused.
Any info much appreciated
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morena_azra ~
No wonder you're confused! I'm not a doctor but I find it very hard to believe that an acoustic neuroma could grow that fast in 60 days. Something is amiss.
I underwent debulking surgery and had a 4.5 cm AN reduced to about 2.5 cm, then radiated. It is has not grown and I doubt it will.
Swelling could be the culprit - or the doctor somehow misinformed you. I prefer to believe the latter. It could simply be a misunderstanding. However, this is a question only your brother's physician can credibly answer.
Jim
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Azra - I agree with Jim...
I did not have my first MRI until 3 months post op specifically to wait for swelling to go down. I also had some tumor left behind to save my facial nerve. The 3 month MRI serves as a baseline...I will have another one this spring around my year point to compare. I do not believe the tumor grows rapidly...if there is 3.5 cm in there, then they were not able to remove much...which is contrary to the doctor's statements. I do not believe a doctor would lie that much...At least I hope not. If the doctor knows there is that much still in there, I would think he would be recommending more treatment.
Try to relax and see what the next MRI has to show. Alicia
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Hi
I hate to be the party pooper here, but my tumor was 1.4cms going into surgery...the doc said he left two small stands on facial nerve to save it...then at my 1st MRI followup, (6 months post op), it now comes in at 1.6cm....
When I ask the doc about the difference in size, he told me that what was he left behind....the surgical transcript states the tumor as 1.8-2.0 cms....it was and still baffeling...so now i'm looking at radiation...
JO
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What ???
That is a pooper, Jo! I will find your other posts and followup with you!
Let's hope it's swelling for now Azra. Take each piece of information gradually and hope for the best!
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Azra -
I'm with Jim and Alicia. Although I'm not a doctor, this makes no sense whatsoever to me.
Your brother should definitely ask the doctor for clarification. He may also want to get a 2nd opinion if he isn't satisfied with his doctor's explanation.
Please keep us updated on this; I'm curious to hear the rest of the story.
Thanks,
Jan
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Thanks everyone for takaing the time to reply.
We have to wait for Dr to come back from his skiing holiday next Wednesday (all right for some, eh? :-) and see what he says.
If I understood them correctly, they took out a big chunk from the centre of the tumor (only leaving a tiny bit to preserve the facial nerve) and it was supposed to shrink to a much smaller size. As it is pretty calcified (has been growing for over 20 years probably), maybe it takes more time for it to shrink properly? Why schedule the post-op MRI to 4 weeks after surgery?
Although, to be honest, the MRI image shows quite a homogenous mass with no holes inside. arghhhh!
Very worried and very confused. I am sending my brother's MRIs and his medical reports all over the world to try and make some sense of it.
Will keep you updated, cheers everyone
Azra
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Azra -
your worry and your concern are both totally understandable.
I hope you get the answers you seek.
Did you send your brother's MRI to House Ear Institute in Los Angeles? From what others on the Forum tell me, they will give you a medical opinion free of charge.
I didn't go to House, but many others did. I'm sure someone here can tell you where to send the MRI.
Jan
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Jan
Will do so right away. Thanks for the info!!! :-)))
Azra
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Just something else to think about...if your brother has an abdominal incision, he had fat removed from there and placed in the tumor area.
The follow-up MRI must suppress the fat graft or it will show up as a large mass. The suppression makes the fat translucent in order to view the tumor area.
Many people have not heard of this because they return to their original doctor for the MRI and it is never discussed. I did not see the same doctor, and the local hospital gave me the wrong MRI. I had to have a second MRI with fat suppression.
Here's to many more options ;) Don't worry until you are given reason.
If you are still in limbo after the doctor's discussion, I agree with Jan, send the original and follow-up MRI to the House Ear Institute for a free evaluation. The address is on their website.
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Thanks Alicia, I already did (today, I contacted many people all over the world with my brother's medical history and MRI scan links - MRI image files can't be zipped but you can upload images to yousendit.com and email them, rather than post them), now I am waiting for the replies.
I wish that what you said was applicable to my brother but the only abdominal incision he has is from the shunt he had to have implanted as he'd developed a hydrocephalus following the surgery so now, not only is the tumor more or less the same size as pre op, he also has a shunt to live with for the rest of his life.
Let's hope his further treatment gets better, he's been through a lot already, like many of you.
Thanks again
Azra
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??? ??? UGGHH!
My heart goes out to you both. I am glad he has you doing all the footwork. I remember how overwhelming the looming thoughts can be. Thank goodness for helpful siblings. I hope an acceptable solution is in front of him! Make sure you take a break when you get a second. Hugs, Alicia
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Guys
Through a recommendation from a forumite from another AN support group site, I came across this Dr in London, Royal Marsden Hospital called Michael Brada who specializes in Fractionated Stereotactic Radiation and who said that the fact my brothers tumor is 3.5cm (longest side) is absolutely no obstruction to have FSR successfully applied as it treats the large size tumors well. I know one of the moderators (Jim?) here had this procedure done following a debulking microsurgery but his tumor was decreased to 2.5cm (smaller than my brother's is now) and he seems very happy with his results.
Has any of you had it done on a large tumor with good results?
I am now not so much concerned about my brother's tumor's size but its location, as I know it is compressing the brainstem quite badly and also the nerves 7th through 12th, not sure whether that'd be an issue.
I am posting my brother's MRI scans to him to London this weekend (as well as to Dr Schwartz who is, of course, pro another craniotomy) as he could not open it on the site I uploaded them to.
how come FSR does not have more press (or at least as much as GK and CK) if it is so successful? food for thought
Rgds
Azra
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Azra,
As I understand it (and I'm not doctor, so I could be wrong) but part of the indicators of using radiation for treatment is size (typically 2cm and smaller). I've HEARD of them using it on larger ones, but quite honestly don't know that much about it. But, the other indicator is location... Especially given that the tumor is already putting pressure on the brainstem pretty badly, that would seem to me to contraindicate radiation (that is to say that it wouldn't be considered).
I say that because with radiation, there is an expectation that the tumor may, in fact, swell larger before it potentially shrinks and dies. Given that it's already putting pressure on the brainstem, I would expect with known swelling as a very real posibility, radiation would not be used as a treatment course.
Something to discuss with the radiation doctor, anyhow..
Good luck!
Regards,
Brian
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Hi Azra,
the situation you describe reminded me a lot that of a forumite from Bulgaria, Hrissy. She had a very large AN at a very young age and underwent two debulking surgeries in her country. As you are finding out, she also concluded that small Balkan countries do not have sufficient resources or expertise for these kinds of complicated situations. Wanting to get rid of her AN once and for all she did a lot of searching around to find a competent team and finally had her third surgery in Germany, which ended up successfully removing her tumor. I would encourage you to seek her story, I am sure she would respond to a PM.
All the best,
Marianna
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Through a recommendation from a forumite from another AN support group site,
Hmm. There's another AN support group site ??? Who knew.
Jan
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@ 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
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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
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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
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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
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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
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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
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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.
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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
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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!
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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
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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