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 :)

1 Month Post-Op

I can't believe it's actually been 2 weeks since I last updated! Time has flown by! 1 month ago right now they were just finishing up Charlie's surgery! Thankfully I haven't needed to update because nothing too exciting has been going on. He's been doing really really well! We've been going out a lot on weekends and evenings, he's been able to spend time with friends. Last weekend we went to Attleboro twice to hang out with a large group of our friends. Charles even played indoor mini golf, which was a good amount of moving around and standing up for a while! It tired him out some, but you wouldn't even be able to tell he just had brain surgery! He's pretty much living like he was before, not really a whole lot being different because of the surgery, he's just a bit more tired and I won't let him lift heavy things and he still can't drive.

We've also been out shopping a bunch looking for halloween costumes! My former roommate Laura is having a costume party on Halloween night as her and her fiance Pj's Jack & Jill. Charles has decided to be Dumbledore and I got a cute witch costume. We're making the Dumbledore costume from pieces... he got a large black robe (though he wanted purple we couldn't find one that fit), we ordered a long white beard and wig, and a WB Licensed Dumbledore hat. He got a big ring and a necklace and I ordered him a cheap wand which looked WAY better in the picture online.. I'm sad about that... We just need to get him some cheap glasses and see about a few more details and we should be good to go! :)

Yesterday Charles said to me that his vision in his right eye was just about perfect! The best it's been in a while. He said he'd never have known there was anything wrong with it. He just needs a new Rx for his contacts and he thinks he'd be seeing perfectly. AWESOME!!!! :)

He's left a couple messages with work about being scheduled for the beginning of next month. He just called again this morning, so he hasn't heard anything back yet. I believe he told them he could work every other day for the first 2 weeks. I'm still really worried about it draining his energy a lot, I'll worry about his safety and well-being. But... he's still got another 2 weeks until then and hopefully by then I won't be as worried!

Charles is still planning on sending out Thank You cards to everyone who has sent him a Get Well card :) They're all over our livingroom!! It was lovely to receive them all.

Let me know if there's anything else you want updates on, I can't think of anything at the moment. So I'll leave you with some photos of Charles and Emily that I took not long after we got him home from the hospital. He couldn't bend down to pet her so I put her on his lap and she happily stayed to be petted. They're both adorable :)

<3 Sue W.

2 weeks post-op

Now that I'm back at work and stuck in front of my computer for 8.5 hours a day, I think I might update more. Updating this isn't as interesting as napping or watching TV, but it is more interesting than doing work! :)

Charles is still doing well! Today is his first day home alone since before the surgery! He says it hasn't been too exciting.. watching TV (nothing good is on of course) and napping. He's supposed to have dinner ready for me when I get home tonight, we'll see how that goes! Of course I had to remind him this morning to plan ahead and bake the sweet potatoes because our microwave stopped working yesterday! AWESOME :( I need to find the papers and receipt for it so I can take it back to Best Buy. Ugh. Poor Charlie, his instant mashed potatoes were still cold :(

Tomorrow is the appointment to get his stitches out! YAY! Also our opportunity to get more information from Dr. Black about exactly how the surgery went, how his recovery is looking, going back to work, and getting more info on radiosurgery in the future. Hopefully I will let you know later this week how that meeting went!

Tomorrow is also our 1.5 year anniversary, YAY! And 6 months since we brought home our kitties! And they still don't really like each other :( But at least they both love us both!!!

I need to look around for my digital camera tonight to see if I can get a good photo of his stitches before they are taken out. Maybe I forgot to say here because when I was talking to Greg at work today he seemed surprised when I told him how large the incision is: it goes from the middle of his forehead right below his hairline and follows behind his hairline all the way to the middle of his ear! It stops right in front of of the ear canal!

I have to say, so far, his recovery has been uneventful... THANK GOODNESS!!! :) Nothing too weird going on! He's been doing just fine. We haven't seen anything funky going on with the incision site other than it just healing and scabbing up. He's been feeling fine, no sign of infection. And thankfully he's been off his meds for about a week now so that wouldn't be keeping the infection from being known if he had one. His eyesight is fine, he says there's no real difference between his left and right eyes, just that he needs new glasses! He will probably get an appointment with a neuro-ophthalmologist just for good measure.

He's looking forward to asking Dr. Black when he can drive again! We'll see how that goes........!

He stopped by work last Friday to pick up his check and visit with people.. and show off his battle wound! I laughed at him as I watched him walking towards the building moving his hair out of the way so his entire scar is more visible. :)

His brother Rob stopped by on Sunday on his way back from a Red Sox game which was nice! Charlie was very happy to see him... although disappointed that he hadn't come with Victoria & Braden! They chatted and played some Wii Sports Resort. Visitors have been making Charles very happy. He's always smiling and upbeat during and afterwards... until he crashes. We even went out to Trivia last Thursday with some of our friends and Charles had a great time (as we all did!) and he helped clinch the win because he got the final question right which kept us in the lead- he knew that the #1 hit by the Starland Vocal Band was Afternoon Delight! Oh Charles and his 70's music :)

Charles noticed the other day that where his dent is, you could actually see his head throbbing.. it was pulsating, it's quite weird but.. there's nothing obviously wrong with it (unless someone writes to me to say its a bad thing!). I told him to just be careful about any pressure going to his head. Poor Charles has to put up with me nagging him about not bending over and not picking things up! It's a good thing he likes me and he's sensible enough to know it's just because I care! :)

Ok just a quick little important note: Charles' vision in his right eye is just about back to perfect. He said there might be a little haze but it's negligible and it's not really much different than his left eye and basically it looks like before and he needs a new prescription for his glasses & contacts. So, YAY! And Suzanne called us to let us know that her friend Susie's husband Dr. Samuels, of Neurology at BWH, said it was very good that his vision was so much better and that was really the only thing that had been worrisome. So, YAY! Suck it, Kirby!

Senses still doing ok. eye still foggy. no idea if there is a change in the difficulty w words he was developing since hes not talking THAT much. but he's ok!