Appt with Neuro-Ophalmologist

This morning Charles had his appointment with Dr. Prasad, neuro-opthalmologist.  The doctor was really great, he was very thorough and explained everything well.

Charles first went in for a test of his peripheral vision, in which he had to press a button whenever he saw a light flash.  He did it with each eye and said that he definitely saw a lot more flashes of light with his left eye than his right! 

Dr. Prasad then had him read a traditional eye chart, which was much easier with the left eye than the right.  He did some looking around and having Charles follow him, shining stuff in his eyes, wiggling his fingers, all that.  He then did a color blindness test which had interesting results.  Charles had a much harder time deciphering the numbers with his right eye.  He is not color-blind and still got a lot of them correct, but it was MUCH harder for him to do.  He had not even realized that he had any problem with differentiating colors.  Mostly it's because his eye doesn't really focus on much and he has to look around because he can only see out of a small portion of his eye.   He also did a depth perception test which thankfully he did very well with.

The results were that things look really good.  His eyesight is 20/40, and he has some problem with color.  When the doctor looked in Charles' eyes, he could see that the left nerve was healthy, but that the right nerve was a pale color, which happens when it is damaged.  There is nothing to be done to reverse this damage.  There are studies involving stem cells and what not looking to see if there is any way to revive damaged nerves, but there is nothing that they can do now. 

His reccommendation was to of course go see the other doctors and get all of the information that we can and make our decision with the most information possible.  But he said to be skeptical of both of them and don't jump into any decisions that could do him harm.  From the point of view of the neurology department, as long as Charles' eyesight isn't getting worse, they don't see any reason to do radiation or surgery.  We also met with the Chair of the Neurology Department, who is the husband of one of Suzanne's childhood friends.  He also gave his opinion that he thinks Charles should wait it out.  He said that meningiomas are benign and aren't going to kill you, so if it's not causing vision problems then why do something that could be harmful.
Dr. Prasad also said to be skeptical of what the radiation oncologists will say because while they do narrow down where the radiation is exposed to, they sometimes overstate how precise it is.  In addition, Dr. Samuels said that sometimes a neurosurgeon will try too hard to get all of the tumor, and in turn do more damage to the optic nerve than if they had just planned to leave more of the tumor there.  Dr. Prasad said that he doesn't see a true representation of the patients and that there are sure more people than not that are OK, but in his work he sees many patients who have had damage done to their optic nerves because of having radiation or surgery.

Charles will be going back in September for another exam to see if his sight has changed at all since today.

While we appreciate their point of view and think that it is important to have and to consider, we will of course see the other doctors and take it all into consideration.  We are both wary about the concept of not doing anything- especially Charles.  As far as he feels, waiting is what made things get so bad in the first place.  If he had gotten the tumor out earlier, he wouldn't have even had any problem with the eye sight, the doctor may have been able to remove all of the tumor and he wouldn't even have to be dealing with any of this anymore.   And there's also the fact that if he waits and the tumor keeps growing, it could potentially grow to be quite larger before there are any vision problems and at that point he might have to do Surgery AND radiation, or if he did radiation, it would be even more dangerous because there would be more tumor to irradiate.  The idea that he could do nothing and be fine is an awesome one, but neither of us think that's really going to happen.  With how quickly his tumor has grown in comparison to those people who have them for decades with little to no growth make us more likely to think that it's inevitably going to grow and cause more problems.  There's also the fact that if it keeps growing Charles would be likely to have another seizure.  He has been lucky so far in that he has been home when he has had his seizures, but he could definitely be unlucky to have one while driving or at work (hello fire and knives!). 

So, that's what we know for now.  He still needs to set up the appointments with Dr. Al-Mefty and Dr. Shih at Mass General.   We'll let you know more when we know more!  Until then, thanks for your love and support :)