Follow-up Appointment

Charlie's follow up appointment to get his stitches out was yesterday. I made sure to get a quasi-decent photo of his stitches in the waiting room (with my phone) before he got them out.


The woman that took the stitches out was quite strange. The whole appointment was kind of weird, everyone was very rushed! The woman came in and acted like we'd met before, which we hadn't, we have no idea who she was...

Getting the stitches out was apparently decently painful. They had been in a little longer than usual because of when they had openings for appointments, and his head is healing pretty well so basically to get the stitches out she had to tear up lots of scabs and disrupt his healing. And of course to start with he had a pretty bad headache and hadn't slept well the night before so getting the stitches out made it even worse. But he's a trooper. From what he said I imagine I'd have cried or made them numb it or something! Hah. I'm a wimp though :) He said he just wanted it over with, and really it only took her a minute to get them all out. It bled in several spots where there had been scabs. And poor Charles has wanted to itch his head SO BADLY!! I told him once in his life he's NOT allowed to pick at his scabs! Haha. I told him he could pick at other scabs all he wants but NOT these ones!!! :) I understand it's hard, but he's doing a good job :)

I brought a list of questions with me and the woman that took his stitches out took them from me and started answering them without us really asking and elaborating what my notes (for myself to ask) had meant. She then took my list of questions and brought them to Dr. Black. The whole thing was kind of strange, I think more so because she was like a crazy whirlwind and never really explained what she was doing. I don't know.

When Dr. Black came in, the first thing he did was confuse me!!! He said Charles was doing really well he looked good, he was pleased how well he was healing and that the MRI after the surgery looked great, there was no tumor remaining. So I was like "whaaaaaaaaa?" Eventually when he was done talking I went back to the issue and said I wanted to clarify, that we had been told that not all of the tumor was removed because some of it was wrapped around the optic nerve. And then Dr. Black was kind of like, 'oh yeah..' I don't remember what he said exactly but we were both thinking he'd forgotten/didn't realize it was Charles, I don't know.. I mean I understand if he doesn't remember everything about Charles's surgery off the top of my head but there's a big difference between there's still tumor and it's all gone! But thankfully he clarified that there IS still tumor, he said a few millimeters in size, and that it DOES NOT show up on the MRI. So that will be really important to know in the future if A) they say the MRI is clean we know there are still tumor cells there and B) if they see tumor cells on the MRI that would mean that they have multiplied since the last MRI.

In addition, he said that the pathology came back that it was benign, but that the rate in which the cells multiplied was 11%, and he said normally it's 6-7%, and then he said "but we don't really know what that means". YAY for underfunded Meningioma research!! /sarcasm. I would assume that it would mean that his tumor is more likely to grow back, or grow back more quickly. But I take it that they don't have any proof of that. That's just my assumption because that would seem to make sense.

On the topic of radiosurgery, Dr. Black explained that there are 2 schools of thought:
1) The tumor is right now the smallest it would ever be so to get in there now and kill the remaining tumor cells would be easier because there are few of them and then maybe we'd be done with it.
2) That right now the tumor is so small it's not going to cause him any problems and it could be fine long term, so if there's no problems why go through a procedure that is harmful to your body and has it's own set of side-effects.

Dr. Black said that he is of the 2nd philosophy, and that doing the radiosurgery wasn't an immediate concern of his. Because I was really interested in knowing if it should be done or not and when he said we could get an appointment with the radiologist to discuss it further. (One of the assistants said he would look into that and get back to us... who knows if that will happen or not).

My personal belief is that it might be better to be a little more pro-active with it. Of course I don't want Charles to have to go through any of this anyway, but... waiting has proven not to have been beneficial as far as I'm concerned. Of course it all worked out well because he got a good doctor and he's OK, etc but... if he hadn't waited, if they had done something about the tumor earlier, we wouldn't be in this predicament. None of the 3 neurosurgeons he spoke with found any evidence that the tumor was wrapped around the optic nerve. As of August, they were saying that it was resting on it and but not wrapped around it which was great! But turns out it was wrapped around it. So I think either that happened quickly or it was was wrapped around it in August and they just couldn't tell based on the scans (like now they said the tumor doesn't even show up). And the question is WHEN did it become wrapped around it. If he had had surgery earlier, would the doctor have been able to resect 100% of the tumor and the radiosurgery wouldn't even be an issue? So my thought is that why should we wait for the tumor to cause a problem again and deal with it then? It's all a measure of risk, I know that. There is risks for not doing it, but there are risks for doing it as well. We'll take it 1 step at a time and I will not worry about it. We can do research and we can talk to the radiologist and we can go from there.

Charles has another appointment for a 3 month MRI on January 13th.

They said he could go back to work whenever he wants, just to give it at least 4 weeks. We're thinking 6 weeks can't hurt, we'll see how he's feeling... I think it's something to be very careful with because his job is SO physically demanding. And they said that a gradual return to work is fine (I wanted to see if they could put that down on his return to work instructions, I think it's VERY important).

Poor Charles had a moment of happiness... Dr. Black said he could drive again when he felt up to it. And then I said something about his seizure, and Dr. Black was like oooh yeah, 6 months from the time of the seizure. Ooooh poor Charles! Dr. Black said that he should stay on the Keppra for a year or so, but that the odds of him having another seizure were very very slim because the tumor is essentially gone.

We asked whether his head pulsating was normal and they said yes. Dr. Black explained something about why it happens but I don't really remember what he said nor did I completely comprehend it at the time. But what we did get out of it was that he does have metal in his head! He has titanium bands which are holding the bone back in place. We hadn't known that before. He said it doesn't register on any metal detectors or anything, which I thought was sad!! It would make life more interesting if it did!! Charles really appreciated that :-p Haha.

He also mentioned to them that he's had some pain/numbness/tingling in his right foot & toes but basically as soon as he said it was his right foot they didn't care... basically that it's not his brain because if it were it would be the left side of his body so it's not there area so they had no concern. If it keeps up though, I'd say he should prob go see a general doctor about it.

That's all I've got for you from the doctor's appointment (ALL, I know, right, because it was so little...)

He's doing well. They said to make sure he gets lots of Vitamin C and he takes about 3 walks a day. Last I knew he was going to try to go out for a little walk before it starts raining again :)

Let me know if you have any questions, right now my brain can't think of what else to say and it's almost time to have lunch with Osh! I've missed my Osh Wednesdays at work :) Though I haven't missed the "at work" part.... ;)

Thanks everyone!!!

~Sue W.