ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: v357139 on May 19, 2013, 12:50:36 pm
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I have 2.7cm in the CPA and pressing a bit on brainstem. Some doctors recommend full removal. Some recommend Gamma Knife. All say cannot save hearing. No one has recommended debulking and radiation. Has anyone had their hearing saved that way? I will also ask some of the doctors about it, but like to hear if anyone had hearing saved with debulk and radiation.
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I have read a paper on pubmed where they were operating and just breaking open the Internal Auditory Canal to relieve pressure on the nerves and give the tumour room to expand and then radiating the tumour to improve hearing preservation rates.. I don't remember exactly what the results were... They were not revolutionary.
There is another paper on pubmed where someone has tried debulking and radiating larger tumours for hearing preservation... Sorry that I cant find it. From memory I think there was little point in doing so for hearing preservation
If you find the papers please post the links. They are out there
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Well I asked Dr Kondziolka and he did not give it much of a chance. He is big on Gamma Knife. I also asked Dr Sisti at Columbia Presbyterian, and he said not much of a chance either. Thanks.
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Yes, I had surgery to "debulk" and then GK and I do have hearing in my AN side. Not perfect, but definitely serviceable. I can't use a phone on the AN side - more because it sounds very distorted and almost painful, I still have tinnitus on that side, and have trouble in crowds, but I do pretty well.
Sorry I don't have more scientific measures of my hearing, but I haven't had a hearing test in over five years. My hearing has not improved or gotten worse in that time, other than temporarily due to stress, cold weather, lack of sleep, etc.
My tumor was just under 3 cm, and I had a large cyst as well. Surgery was "posterior fossa" and GK was 6 weeks after.
Please let me know if you have any questions and I will try answer.
Good luck to you in whatever you choose!
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Who did have your surgery with and where?
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My surgeon was Robert Fenstermaker at Roswell Park in Buffalo, NY. I'm not sure if they do many ANs, as they are a cancer institute, but I got awesome care from him and everyone there. I was referred there because someone I know knew I was interested in GK, and they have it there, and I couldn't travel far since I had a newborn.
Good luck!
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Yes to de-bulking and saving hearing--depending on location of tumor, size, surgeon, etc. I am 56 years old, had my 2.5 cm acoustic neuroma diagnosed at the end of last August. I had experienced facial numbness, but only a slight loss of hearing. I was very lucky to be referred to Dr. Robert Spetzler at Barrow Neurological Institute here in Phoenix (we live in Phoenix, have several friends who are doctors here and in other places across the country and all describe Dr. Spetzler as a god!) and he and Dr. Weisskopf, who is also fabulous, did my surgery on Nov. 15th. They used the retrosigmoid approach and de-bulked the tumor, because the tumor was already pressing on the facial nerve which was why I was experiencing the facial numbness. My tumor had grown in a manner that sounds imilar to yours--minimal hearing impact, b ut compressing bth the facial nerve and brain stem. The shell of the tumor crumples in on itself, and I'll be following up with regular MRIs and perhaps will need to have radiation at some point. I had minimal additional loss of hearing and, yes, I can even use a phone on that side. I still have some slight facial numbness, but absolutely no facial paralysis. I can't say enough great things about my experience with these two wonderful doctors, and everyone at Barrow and St. Joseph's. With the assorted possible outcomes, a lot depends on location of the AN, both in how much hearing you have lost prior to surgery and how much can be preserved once the procedure is done.
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They used the retrosigmoid approach and de-bulked the tumor, because the tumor was already pressing on the facial nerve which was why I was experiencing the facial numbness.
I am glad that things worked out for you.
Just a small clarification, numbness is attributed to the trigeminal nerve, and not the facial nerve. The trigeminal nerve (nerve 5) is a sensory nerve with three branches, responsible for sensation. Once the an AN grows large enough to start touching the brainstem, it impinges upon the root entry of the trigeminal nerve, causing numbness.
Marianna
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Yes to de-bulking and saving hearing--depending on location of tumor, size, surgeon, etc. I am 56 years old, had my 2.5 cm acoustic neuroma diagnosed at the end of last August. I had experienced facial numbness, but only a slight loss of hearing. I was very lucky to be referred to Dr. Robert Spetzler at Barrow Neurological Institute here in Phoenix (we live in Phoenix, have several friends who are doctors here and in other places across the country and all describe Dr. Spetzler as a god!) and he and Dr. Weisskopf, who is also fabulous, did my surgery on Nov. 15th. They used the retrosigmoid approach and de-bulked the tumor, because the tumor was already pressing on the facial nerve which was why I was experiencing the facial numbness. My tumor had grown in a manner that sounds imilar to yours--minimal hearing impact, b ut compressing bth the facial nerve and brain stem. The shell of the tumor crumples in on itself, and I'll be following up with regular MRIs and perhaps will need to have radiation at some point. I had minimal additional loss of hearing and, yes, I can even use a phone on that side. I still have some slight facial numbness, but absolutely no facial paralysis. I can't say enough great things about my experience with these two wonderful doctors, and everyone at Barrow and St. Joseph's. With the assorted possible outcomes, a lot depends on location of the AN, both in how much hearing you have lost prior to surgery and how much can be preserved once the procedure is done.
I'm glad to hear your good report about the Barrow Institute. I've sent them my records and am looking to have Cyberknife done there this summer. I don't have anything concrete planned yet with them because I'm sorting out financial issues (got some new insurance that might pay at least part of the bills), but I've been hearing good things about the docs there.
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Yes to de-bulking and saving hearing--depending on location of tumor, size, surgeon, etc. I am 56 years old, had my 2.5 cm acoustic neuroma diagnosed at the end of last August. I had experienced facial numbness, but only a slight loss of hearing. I was very lucky to be referred to Dr. Robert Spetzler at Barrow Neurological Institute here in Phoenix (we live in Phoenix, have several friends who are doctors here and in other places across the country and all describe Dr. Spetzler as a god!) and he and Dr. Weisskopf, who is also fabulous, did my surgery on Nov. 15th. They used the retrosigmoid approach and de-bulked the tumor, because the tumor was already pressing on the facial nerve which was why I was experiencing the facial numbness. My tumor had grown in a manner that sounds imilar to yours--minimal hearing impact, b ut compressing bth the facial nerve and brain stem. The shell of the tumor crumples in on itself, and I'll be following up with regular MRIs and perhaps will need to have radiation at some point. I had minimal additional loss of hearing and, yes, I can even use a phone on that side. I still have some slight facial numbness, but absolutely no facial paralysis. I can't say enough great things about my experience with these two wonderful doctors, and everyone at Barrow and St. Joseph's. With the assorted possible outcomes, a lot depends on location of the AN, both in how much hearing you have lost prior to surgery and how much can be preserved once the procedure is done.
Wow that is really something. After I posted the question, I asked two well known doctors in NYC about debulk and radiate. Neither one gave me much chance for hearing preservation with it, and they did not seem interested in discussing it. Friedman at House does not give any chance for hearing preservation, although I did not specifically ask about debulk and radiate. I had given up on it. Not sure, maybe i will send my stuff to Barrow. Thanks.
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Found this paper today...
Intracapsular decompression or radical resection followed
by Gamma Knife surgery for patients harboring a large
vestibular schwannoma
http://thejns.org/doi/pdf/10.3171/2012.6.GKS12697
Please note that this is NOT classical Debulking,
This is just sucking/munching out the middle of the tumour and leaving the tumour skin behind, stuck to the facial nerve and the brainstem.
Maybe worth further discussion with your doctors
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Hi;
I'm surprised just the decompression didn't help somewhat. A regular AN always displaces the nerves to the tumor surface. An NF-2 AN invades the nerve. Sci-fi: "We will assimilate you".
"I have read a paper on pubmed where they were operating and just breaking open the Internal Auditory Canal to relieve pressure on the nerves and give the tumour room to expand and then radiating the tumour to improve hearing preservation rates.. I don't remember exactly what the results were... They were not revolutionary." - Offered by Paul, was it?
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My understanding is that both NF2 and normal AN's both invade the hearing and balance nerve, but do not invade the facial or trigeminal or other nerves. However all of them could be sticky and could adhere to the facial and other nerves or brainstem.
Apparently just breaking open the IAC to relieve pressure and not touching the tumour and then radiating was probably not worth the effort in terms of risk versus results.
Sucking out the middle of a large AN and radiating apparently is worthwhile.
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Hello;
I guess our "understandings" are different. : ) I suppose if anyone is really interested to know w/o a doubt, they can ask their Dr, or find a good web site.
An NF-2 AN can invade the facial and trigeminal nerves also as NF-2 is termed "Central Neurofibromatosis".
My understanding is an NF-2 mediated AN can impact, and grow within nerves, while regular ANs displace nerves to the tumor capsule surface and smash or stretch the nerve there against the bony, IAC walls.
The similarity lies in tumor formation as both types are caused by the absence of tumor suppressant, protein Merlin/schwannomin.
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Found this paper today...
Intracapsular decompression or radical resection followed
by Gamma Knife surgery for patients harboring a large
vestibular schwannoma
http://thejns.org/doi/pdf/10.3171/2012.6.GKS12697
Please note that this is NOT classical Debulking,
This is just sucking/munching out the middle of the tumour and leaving the tumour skin behind, stuck to the facial nerve and the brainstem.
Maybe worth further discussion with your doctors
The only doctor that offered anything like this was Dr Jho at Allegheny General. He proposed a fully endoscopic debulking and then reevaluate after that. He was kind of not clear as to the chances to save hearing.
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Found this paper today...
Intracapsular decompression or radical resection followed
by Gamma Knife surgery for patients harboring a large
vestibular schwannoma
http://thejns.org/doi/pdf/10.3171/2012.6.GKS12697
Please note that this is NOT classical Debulking,
This is just sucking/munching out the middle of the tumour and leaving the tumour skin behind, stuck to the facial nerve and the brainstem.
Maybe worth further discussion with your doctors
I sent the article to two doctors, including Kondziolka. I am no doctor, but I thought Kondziolka said you had to stay below 5 gray for hearing preservation. They used 12 gray in this article. We'll see what those doctors say.
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12Gy is the dose to the edge of the tumour.
5Gy refers to the maximum amount of radiation the cochlear might get before hearing preservation rates decline.. While people get the impression that radiation is accurate to less than a millimetre.
Lots of surrounding tissue receives radiation too. The cochlear is very sensitive to radiation and is normally only a few millimetres away from the AN. Which means it often receives quite a lot of radiation.
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Hello;
I've read with SRS, radiation is absorbed as far away as 1.5 cm. from target. Another web site stated < 2.8 gy. to the cochlea did not damage the ciliary hair.
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Hi;
I'm surprised just the decompression didn't help somewhat. A regular AN always displaces the nerves to the tumor surface. An NF-2 AN invades the nerve. Sci-fi: "We will assimilate you".
"I have read a paper on pubmed where they were operating and just breaking open the Internal Auditory Canal to relieve pressure on the nerves and give the tumour room to expand and then radiating the tumour to improve hearing preservation rates.. I don't remember exactly what the results were... They were not revolutionary." - Offered by Paul, was it?
Thanks nftwoed, I stand corrected, you are right.
NF2 tumours can invade the facial nerve.
http://books.google.com.au/books?id=RniyoXeNmMwC&pg=PA1826&lpg=PA1826&dq=nf2+invade+facial+nerve&source=bl&ots=cW1iKq9fAi&sig=p2AOZX2F3K57NIynvq9et1aUN5I&hl=en&sa=X&ei=teezUejQEIbjkgX0loCACw&ved=0CEAQ6AEwAw