Treatment Options > Microsurgical Options
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:
--- Quote from: hruss on March 30, 2008, 08:58:56 am ---
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)
--- End quote ---
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
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