AboutDina Q Goldin, Ph.D. Expertise Information and advice for Acoustic Neuroma patients who would like honest patient-to-patient interaction about their symptoms or about treatments and related medical procedures. If you are unsure if your experience is "normal", or are wondering whether your information is complete, feel free to ask.
Experience I am an Acoustic Neuroma patient and the founding editor
of the Acoustic Neuroma Patient Archive (http://www.ANarchive.org).
Expert: Dina Q Goldin, Ph.D. Date: 6/8/2007 Subject: Symptoms After Resection and Radiation
Question I had an approx. 3cm acoustic neuroma on the left side resected in October, 2005 and had a revision in November of that year. The surgeons took very little of the mass out; it was almost the same size after surgery. In March, 2006 I was refered for stereotactic radiation treatment to neutralize what was left. This went through May and I was on Decadron most of that time for swelling. I was relatively okay, with continued on-again/off-again use of the steroids until September, 2006 when I developed hydrocephalus out of the blue. In October, 2006 I had a third ventricular proceedure done at Walter Reed (I'm military) but this actually seemed to make things worse. In November they emplaced a VP shunt and this seemed to at least mitigate the symptoms I'd been having. I stayed in in-patient physical therapy until March, 2007, when I was released to come home.
For the first month or so everything seemed okay but then I went to Ft. Sam Houston for a follow-up where they did an MRI. Both the ENT and the neurosurgeon there thought that I should have yet another revision surgery despite the fact that they only had the recent MRI to go on and the mass was, as far as I could tell, about the same size it's been for over a year. Based on this, I told them to hold off on the surgery (it's only been 15 months since the radiation therapy too) but now my symptoms seem to be getting worse.
Within the last week or so I've developed balance problems, my facial numbness and vision problems (constant since the first resection) have gotten worse and I'm constantly tired no matter how much sleep I get.
My question is should I go ahead with another resection, despite the fact that they told me that there was a high probability of paralysis on the left side of my face and a possibility of permanent breathing problems as well? Or should I wait a couple more months to see whether the symptoms resolve on their own (I've read that radiation after-effects can take up to 24 months to run their course)?
All of this is complicated by the fact that I have a wife and five children; I'd hate to end up a 'basket case' that they'd have to take care of forever but I don't think that dying on them would be a good thing either. Can you offer any insight on this matter?
Answer Dear Michael,
While ANs are benign and not dangerous, they do lie in a very sensitive area inside the skull, and surgery can be very tricky, and can have many complications. The more is removed, the riskier it is. The risks range from death (not very likely) to permanent disability (quite likely with less experienced surgeons).
A surgeon's experience is KEY to reducing one's risk of these complications, or to reducing the need for follow-up treatments. I am afraid that your story sounds like a typical scenario when one's AN doctors are not very experienced. You do need to take care of your current problems, but my strong recommendation is NOT to proceed with any other treatments until you've found someone more experienced. Look for someone who does at least 50-100 of AN surgeries a year, and has been for several years. At this point, you can make a very good case why it is in the military's interest to have you go to a non-military surgeon, if they want you do be able to lead a quality productive life after your AN ordeal is over.
