ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: gunns on April 16, 2017, 11:32:07 pm
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Hi I am 68 and was also diagnosed with a 2.7cm tumor on my left on March 28th. Seeing a neurosurgeon on April 21. My biggest concern is where I should do the surgery and how to determine where the best doctors are. Any help in this regard would be most appreciated.
Regina
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I am also a newbie and you are correct - this forum is wonderful. I have educated myself immensely! Your surgical options are wonderful in California from what I have learned on here. Good luck to you and keep us posted.
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This is just my take from what I've read--you have to take into account both the size and the symptoms. Some symptoms may be relieved by treatment but other symptoms remain or worsen. Smaller tumors sometimes cause many symptoms and larger tumors sometimes have minimal symptoms. There is so much variance case by case. It has to be an individual decision based on your own research and your doctors' recommendations.
I was diagnosed 3 years ago and was tempted to have it removed right away. Now it looks as though the growth is rapid so observation is probably no longer the best choice for me. But I'm not sorry I had that time to get accustomed to the idea and research/think about how to handle what is coming.
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If the tumor growth is stable and your symptoms are manageable, observation is probably the best course. Nothing improves with surgery and there is significant risk of hearing loss or facial paralysis.
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I am still wrestling with a decision. Even tho my tumor is 2.7 cm my only discomfort so far is complete hearing loss in the left ear. Should I just wait and monitor year by year or should I go ahead with surgery. So far, I am leaning towards Keck Hospital in USC where they have a dedicated ANCenter. My consultation with Dr. Freidrick was good and he suggested the Translab procedure and said that he'd probably leave a small portion of the tumor behind if there is any indication that the facial nerve is attached to the tumor.
I just do not want my postoperative to be worse that my preoperative conditon. Any comments?
Regina
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They have good results with translab and you've already lost your hearing so that's not an issue.
At 68 there's still lots of years left for it to grow. I think it's interesting that simultaneously there seems to be more younger people doing radiation and more older people successfully undergoing surgery.
If you're healthy enough now it might be a good time to remove it. Nobody knows what health problems might arise in the future to influence decision making.
Hope that helps?
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Hi Regina,
With AN's, every path is a gamble (surgery, radiosurgery or observation).
“The best treatment is no treatment, if you can do it”. Dr Michael McKenna (https://www.anausa.org/resources/videos/support-group-video-library)
I'm going for a 2 year period of observation, with MRIs every 6 months, before considering the next step. That will give me five MRIs to get a good picture of growth. If there is rapid growth, intervention may be required, otherwise outcomes do not change by observing for 2 years.
With regards to age, a neurosurgical that I spoke to said that age does not matter. It's the general health that matters. Now they are somewhat related, but a healthier lifestyle would keep the fitness levels up which is good if you have to go to surgery and is good generally.
It's also good to read articles on vestibular schwannomas to get a better understanding. Three good ones to get you started are:
* “The Natural History of Vestibular Schwannoma” 2006. http://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
* “Active Treatment is Not Indicated in the Majority of Patients Diagnosed with a Vestibular Schwannoma: A review on the Natural History of Hearing and Tumor Growth” 2014 http://www.bhtinformatie.nl/pdf/ingrijpen.pdf .
* "Conservative Management of Acoustic Neuroma" 2006 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502035/
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Regina, I forgot to ask an important question. How long have you had symptoms that can be attributed to an AN?
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Hi AH Sydney,
The only symptom I have is total hearing loss on the left side. No dizziness, balance problems, ringing, numbness or tingling.
Regina
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How long have you had hearing loss
and high bad is it?
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My hearing loss must have started about 10 yrs ago and has been getting worse. Now I have no hearing in the left ear.
Regina
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Regina, given that you have had symptoms for a long time (10 years) that is good news. "tumor growth occurring beyond the fifth year of observation is very rare, but is, however, still observed" http://www.bhtinformatie.nl/pdf/ingrijpen.pdf