I am so puzzled...

[hruss]

Hello all!!!

I am 25 year-old, and have already survived 2 retrosigmoid surgeries.
I was diagnosed a huge (> 5 cm) AN on my right 8th cranial nerve in late Sept, 2007. And was immediately hospitalized to be operated for a first time in early Oct 2007.
I had had no problems with my hearing, the symptoms were only a severe vertigo when I shaked my head in both directions to cross a street! It actually appeared in July 2007 but wasn't serious (appeared suddenly from time to time) and I didn't pay attention to it! I had thought that the reason for it (as my doctors usu tell me) the fact that I don;t drink enough water per day!
Another reason to ignore it was my one month trip to Germany, The Netherlands and France in Aug 2007 - so I was so excited that nothing could prevent me from not leaving!!

But my symptom didn't disappear, on the contrary it get more severe and when I returned I immediately went to a doctor only to get diagnosed an AN!

Since then I have had two retrosigmoid (suboccipital) surgeries and the doctors tried to remove part of it without any serious damages - actually my tumor is big enough to straddle the facial nerve and to compress th brain stem!!
So they recommended a proton therapy to me because as doctors said if they went further they had to severe my facial nerve

I am so bewildered!! 

I am afraid of any radiation going into my head (cause as I mentioned my AN compresses my brain stem) and no one can guarantee me that the other healthy tissues  will not be damaged!! Plus, malignant tumors could develop in the irradiated near tissues or later post radiation surgery for excision of my tumor might be very risky! (I know all this because last week my brother bought me an electronic book about AN and I have already read it twice)

On the other hand, I don't want to lose the right half of my face due to another surgery!!

Please give me suggestions what you did in this situation! How did your life go on after a facial paralysis?! I am so afraid - I won't be able to work any longer and I will be stuck home with no money!

Can anyone recommend me some hospitals in the USA where they had a surgery of an AN as big as mine without any serious injuries?? Does anyone know how much it costs? (I do not a medical insurance in the USA, I am a foreigner)

Any kind of information will be much appreciated!!

Best wishes to all of you!!

[sgerrard]

I am afraid of any radiation going into my head (cause as I mentioned my AN compresses my brain stem) and no one can guarantee me that the other healthy tissues  will not be damaged!! Plus, malignant tumors could develop in the irradiated near tissues or later post radiation surgery for excision of my tumor might be very risky! (I know all this because last week my brother bought me an electronic book about AN and I have already read it twice)

No one can guarantee anything about any form of treatment. The important question is what are the chances; if they are low, then it is sensible to proceed with the treatment.

The chance of malignancy being caused by radiation treatment of an AN is extremely small. There have been thousands of people treated; to date, there are perhaps 6 or 7 cases worldwide of a reported malignancy, and in some of those it is not clear if radiation had anything to do with it. You are more likely to get hit by a truck on your way to the hospital.

Modern radiation equipment can deliver radiation very precisely. A radiation oncologist will not authorize a treatment unless they believe that it can be administered safely and will avoid damage to the brain stem and other tissues. It can't be guaranteed; but in practice, they don't miss very often at all.

Your doctors have already told you that the chance of facial nerve damage with another surgery is very high. Of course we all wish we could get a treatment that was guaranteed to be successful. But if that is not available, it makes sense to choose the treatment with the best chance of success.

Steve

[Jim Scott]

Hello, hruss:

I was somewhat perplexed reading your story.  I hate to see anyone develop an acoustic neuroma but especially a young person, like yourself. Unfortunately, youth is no barrier to developing an acoustic neuroma.  We've had teenagers post here that had fairly large AN's, like yours.  However, you've addressed the tumor with surgery - twice - and now it's time to try something else.  Radiation.

As Steve ('sgerrard') correctly stated, no medical procedure can come with a 'guarantee' of total success.  However, carefully mapped radiation (FSR) can be very beneficial.  I had a large (4.5 cm) AN that was 'debulked' by microsurgery then radiated via FSR treatments. My neurosurgeon and a radiation oncologist he teamed with used a recent MRI and CT scans to 'map' the radiation beams so they wouldn't hit any vital facial nerves.  They didn't.  The radiation treatments, spread out over 26 sessions about 30 minutes each, were boring.  I had no complications other than a touch of nausea one day early on in the process.  Hardly a problem. 

Today, 22 months after my surgery and 18 months after my final FSR treatment, I'm fine.  No facial paralysis or other complications other than a permanent loss of hearing in the AN-affected ear, which I had prior to my surgery and radiation. 

Many U.S. hospitals perform AN surgery and radiation.  The House Ear Clinic http://www.houseearclinic.com/acousticneuroma.htm in Los Angeles, California is one of the most famous and very well recommended for AN treatment.  They perform surgery and radiation.  The cost would be high but you would have to consult the hospital for specifics.   There may be some way to finance the procedure.  I'll leave that to other posters to address.   

I'm pleased that you discovered this site and forum.  I hope we can be of some help to you.  We understand your fears and concerns and are on your side.  Please stay in touch with us.

Jim

[leapyrtwins]

I agree whole-heartedly with both Steve and Jim.

As they said, if the doctors are telling you that there is a high risk of facial nerve damage involved with another surgery, it doesn't sound like a good idea.  Plus, you've already had two surgeries that didn't solve the problem.

If you are certain that you want another surgery, I'd look into House Ear Clinic as Jim suggested.  From what I've read on this forum, the docs @ House are very pro-surgery and they are well-recommended.   

If you want to find out more about radiation, I'd contact the doctors who treated Steve's AN @ Stanford.

Whatever decision you make, please remember that we are here to support you. 

Don't be a stranger,

Jan

 

[Kate B]

Hi hruss,

Welcome to the forum.  The type of treatment you are referring to is called debulking..getting out most of the tumor by surgery and then treating the rest with radiation.
Have you gotten a copy of your report from the hospital?  I would send your report and MRI's to House Ear Institute.  Stanford was already mentioned. Another reputable and well regarded institution for AN treatment is UPMC. (University of Pittsburgh Medical Center).  I emailed Dr. Kondziolka when I was doing my fact finding. 
http://www.acousticneuroma.neurosurgery.pitt.edu/

My lay person's interpretation of your story is that with such a large tumor and its location (pressing against the brainstem and straddling the facial nerve) they knew they couldn't remove it all without causing damage to the facial nerve.  The fact that you needed surgery again, means that you have the kind that will keep regrowing. 
Debulking removes most of the tumor and then when followed up by radiation treatment, you finish off the tumor. The key is an expert doctor: one who has done hundreds of AN treatments.  My question to the doctor would focus on the location of the tumor and the chances for hearing preservation etc..

I have a list of questions I put together that you may find useful. Just print them off and cross out the ones that you won't need.

http://anworld.com/questions/


Let me find the links:
HEI
Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)

UPMC
http://www.acousticneuroma.neurosurgery.pitt.edu/

Kindest Regards,
Kate

[hruss]

Hello Steve, Jim, Jan and Kate!!!

Thank you very much for the prompt and thorough replies - I am so glad that you contacted me!!

Sorry I haven't posted for several days - recently I was very busy and a number of things happened to me ....

(As all of you have done it) I surf the internet and read tons of sites and peer reviews of outstanding professors in my search of really good and experienced doctors particularly in the ponto cerebellar angle and facial nerve preservation.

Along with my classes in TOEFL and  GMAT (I have the ambition of pursuing a Master's program in the US, but that's another story ) I also managed to meet a Bulgarian doctor who works for International Neuroscience Institute, Hannover, Germany. This doctor - Venelin Gerganov - was recommended to me by his former colleagues who I asked for a second medical opinion in another clinic here in Bulgaria.
So instead of me flying to Hannover (as were the first plans), it turned out accidentally that he would have some private visit here in Bulgaria (as you understand he lives and works in Germany) and managed to squeeze me into his tough schedule. So in a nutshell, he advised me to have another surgery but this time in Hannover by prof Samii. He assured me that there they can perform a removal of my AN (or at least ultimate debulking) without permanent facial paralysis (and yes he explained that I will suffer a mandatory paralysis for around 18 months - but what is an year and a half in comparison to lifetime??!) Unfortunately, the price for this surgery there is VERY high - 40 000 EUR (roughly this makes around 65 000 US bucks   I really do not know how and where I will find the money since I should have an operation around Sept this year, as he suggested!!

And since this clinic is extremely expensive for me, I will try to find an American one and to compare the prices (not that I expect a US clinic treatment to be cheaper (don't get me wrong) but here currency rate plays a significant role! I hate to do calculations when it comes to health  , but.... )) In addition to this - thank you for your suggestions! Kate and Jim - I will send my documents to House Ear Clinic - it is a matter of few days - I am now translating my medical records!

Meanwhile, I arranged a meeting for my brother with Dr Samuel Selesnick from the New York Presbyterian Hospital - Weill Cornell College. For my brother because he will be on a business trip in the Sates in May and will bring my documents instead of me. My question is whether anyone has ever heard of this doctor? - I just picked him up from a list of doctors I saw on NYU site. Can anyone share any experience?
Kate, in your signature I noticed the AN world site where I found an AN map of good neurosurgery world centers. INI Hannover can be found there, which at least assures me of the quality of the center.

Sorry if I was pretty detailed and at some point you get bored! But sharing with you, somehow gives me strength to go on!

Best,
Hrissy


 

[marymomof3]

Hi HRUSS.  I met with Dr Selenick for a consult about 2 months ago.  He seemed like a brilliant surgeon whose specialty it Acoustic Neuroma.  I had surgery at NYU with Drs Roland and Golfinos 2 weeks ago.  If your brother has the time, you might want to try to have him meet with them as well.

[Kaybo]

Hi
Hopefully now they can vastly reduce the occurance of facial paralysis, but I had surgery when I was 25 -- you can read about it on my signature line (below) and my blog address is there also.  I have a very full and active life & my face has been paralyzed for 12 years - hasn't stopped me!!
Please contact me if I can be of more help!
K

[chelsmom]

Hi Hruss

Boy, you've already been through a lot in the last year. 

Here's my daughters story.  She was diagnosed with a 6 cm tumor June 2006 at 17 years old.  There was significant brain stem compression and hydrocephalus.  The tumor was debulked in 2 very long surgeries (16 and 15 hours) and she also has a AV shunt that controls the hydrocephalus.  Due to a number of complications she was in the hospital for 3 months.  Because of the location of the tumor they only removed 70% and planned to follow the treatment with FRS.  Three weeks after she was released from the hospital she started the radiation process.  She had 28 treatments with Novalis.  She did have problems during and following the treatments; fatigue, vomiting, headaches, and hair loss at the treatment site but this is unusual.  It was probably because she was in such a weakened state before the treatments started. 

It's been 15 months since her last treatment and she is doing well.  The only facial nerve problem she has is that there is a numb spot on her cheek.  She has no balance problems or eye problems.  She is deaf in her right (AN) ear.  She had a very very long recovery period that allowed her to heal with great results.  She has been followed closely by her doctors.  She sees them every 3 months with an MRI.  Her last one was in Dec. and even though she still sees the neuorsurgeon every 3 months they will now have her get her next MRI in June and then every 6 months for a couple of years. 

Needless to say we are thrilled with her progress and the results thus far.  I understand that debulking followed by radiation is becoming more common in cases where the tumor is in an area that is too risky to be totally removed.  I'm nervous about the long term effects of the radiation but I've been told and read that the percentages are very low with secondary cancer from the treatments. 

She is just finishing her first year at the University and never slows down.  I tell her all the time you never know what might happen in life so you have to do all you want to do and have no regrets. 

We of course feel that we have the best team of doctor out there.  They are Neurogureons Dr. Donald P. Becker, Dr. Marvin Bergsnider, and Dr. Antionio De Salles (neurosurg/radiation).  They are at UCLA Medical Center.  A fabulous group of people. 

I hope you have success in you search for the right treatment and doctors that will bring you peace of mind.

Michelle.   

[hruss]

Hi everyone!!

Thank you for the numerous suggestions!

I just wanted to drop a line and to update you! Actually, there is not much to share but I am still considering both ideas - micro- and radio-surgery!

I heard from one of my doctors last week. He mentioned that it would be better in my case to have another surgery somewhere in Europe. It would be easier for me to travel for post-operative check-ups!

I still haven't sent my Medical records to HEI, because it turned out that my brother will be in CA at the beginning of May, so he can bring the MRI images.
But since I may need to speed up the procedure can anyone suggest me an email address to contact them (I searched the web site but I could not find it - I just found the regular mail contact)

Hope you are all well!

Hrissy

[Kate B]

I still haven't sent my Medical records to HEI, because it turned out that my brother will be in CA at the beginning of May, so he can bring the MRI images.
But since I may need to speed up the procedure can anyone suggest me an email address to contact them (I searched the web site but I could not find it - I just found the regular mail contact)

Hi again Hrissy,
Here is the HEI information:
HEI
Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900

This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)



All the best,
Kate