Over the past few weeks I have been consulting with many top specialists in the area. A while back on a consultation with a neurotologist about my facial palsy problem, we were enlightened that my MRI of January 10th stated that my 2.8 cm tumor that was treated has grown to 4.5 cm! Since she0 had only the MRI report and not the films, the doctor could not confirm this for us. We were horrified, shocked, and speechless! Why hadn't anyone told us this or seen the report and thought something was wrong?
Then we remembered that in a prior report with my HMO over a year ago, a new radiologist had made an error. On the right side I have two tumors that are touching each other. One is the acoustic neuroma (also called a vestibular schwannoma) intertwined with the 8th cranial nerve and a meningioma cushioned between the AN tumor and my brain stem. In a previous report the radiologist had measured both tumors and thought that it was one big tumor! So we have been convincing ourselves that this is again the case.
I emailed Stanford about my theory. I had a CD of my films sent there and the doctor wrote back saying that the tumor has increased by 5 mm. I consulted with two neurosurgeons and from the MRI it cannot be determined if this is actual new growth from the tumor or if it is just swelling of the tumor. The Swedish hospital neurosurgeon told me that he has never seen this much swelling in any of their patients treated with Gamma Knife radiosurgery. However, both he and the Stanford neurosurgeon concurred that the center of the tumor is showing signs of necrosis which is cell death (it appears blackened on the MRI film).
The neurosurgeon I consulted with here leaned toward waiting another 3 months and having another MRI. If I still had symptoms, he felt I would be obligated at that time to have open brain surgery to relieve them. It is not healthy to take steroids for long periods of time (especially in my case because I have been diagnosed with cataracts in both eyes). Prolonged use of steroids can make the cataracts worse and cause glaucoma. All doctors have been concerned about my dependence on steroids to function somewhat normally. They would prefer that I try to tolerate the symptoms with over the counter pain relievers and antinausea medicine.
Okay, so I asked Stanford to look at the films and give me their opinion. It seems 50/50. Here is what the neurosurgeon wrote me:
"We have seen tumors "swell" after radiosurgery as they die from the radiation. This swelling can be confused with tumor growth, and it is impossible on MRI scans to determine the difference between swelling from a dying tumor, and tumor growth. This puts us in a situation where a decision needs to be made on your part.
Option # 1 is to go with the assumption that this is all due to tumor swelling from a dying tumor, as would be supported by the decrease in contrast within the tumor. In this case, the best course of treatment would be another mri scan in 3 months to observe, with thesterioids used as a temporizing measure.
Option #2 would be to assume that the tumor is still alive, and that the increase in size is due to real growth and not swelling. In that situation you may just want to consider open surgical resection for the tumor. The downside of this option is that there is a chance that once surgeons are in there they may find that they are removing a dead tumor, and that the surgery was unnecessary. If on the other hand, they find that the tumor is still alive, then that would mean the radiosurgery failed, and that surgery is the correct option at the present time. As you would expect, there is no way to tell on the current MRI scans whether we are looking at a tumor swelling from a dying tumor or tumor growth.
I have had NF2 patients in which the tumor swelled and then decreased in size over time when we just followed them with MRI scans, and I have had NF2 patients in which the tumor enlarged, and we operated on them only to find live tumor. In your case, I cannot tell at this point which way things are falling."
The University of Washington Neurosurgery and Neurology board also reviewed my films and case. Their opinion was to wait it out and not introduce any surgery into that area or further radiation (the previous plan was to possibly treat the meningioma next to the AN) . Since the tumors are normally slow growing, they felt it was safe to wait for another MRI in 3 months.
Thus my decision has been to wait and have faith.
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