We had our three-month post-Gamma Knife MRI and follow-up appointment this past Friday, the 8th. Dr. Maggio had good news. The tumor does not show any sign of growth - hooray!

 

I’d had a nosebleed the day before the appointment, then again the morning of, so reported that. I told him that the only other nosebleed I’ve ever had was last summer, a few months after the craniotomy. He  was very curious about that, and said if it happens again to let him know so he can send me to “my ENT guy”. So far, no more blood.

 

He spent time with us, answering all our questions, chatting. He marveled about how well I’m doing and was all smiles and hugs. “How much weight have you lost?”, he asked. “Forty five pounds”, I replied. Brand told him how dedicated I’ve been to my exercise program and he was impressed. It’s amazing what you can do with your life when you’re not in excruciating pain every day. Dr. Maggio said I’m a totally new woman (considering that when he first met me I was obese, suicidal, psychotic, combative and hostile, yeah, totally). I told him about how happy I am to have my life back, especially the part about being a glass artist again. He was very interested in that. I’d made a special evil eye bead for him and he loved it! He knew all about the legend of the evil eye.

 

 

One of our first questions was, Could my Gamma Knife treatment turn my tumor malignant? A few months ago we met a lovely couple from Texas who had come to Baltimore for a consultation on the husband’s tumor. We’ve kept in touch, and they shared with us reports that their neurosurgeon had showed them citing cases where radiation has caused tumors to turn malignant. We showed the reports to Dr. Maggio and asked him what the chances are that that could happen to mine. He spent a considerable amount of time explaining all the ramifications and permutations and varying opinions amongst neurosurgeons on radiation therapy for brain tumors, some of which he’d already told us, but this time much more in-depth. I guess during our first consultation I was focusing more on the possible things that could result from “burning a hole in your brain with a lethal dose of radiation” (paralysis, blindness, seizures, psychological consequences, etc) than potential malignancy. He does, in fact, currently have a patient in this situation. After all, "radiation is not a benign treatment". But, and there was a big but, there’s radiation and then there’s radiation. Maligancy does occur more often with regular radiation therapy than with Gamma Knife. There have been over 500,000 patients around the world who’ve received Gamma Knife treatment, and the number of those tumors that have turned malignant is extremely small. It is a very rare occurrence. Some of those tumors cited in the reports were not meningiomas like mine. Additionally, the studies cannot say with certainty that all of the malignancies were caused by radiation. Some tumors grow back malignant on their own. He does not recommend GK for every meningioma, and assured us that, considering the type of tumor I had, a Grade 1, the size, location, likelihood of it growing back, the surgery that would be required if it did grow back, and all the other relevant facts of my case, he is absolutely confident that Gamma Knife was the way to go. And so are we.

 

We also got a better description of my residual tumor. It’s not quite pea-sized, as the oncologist told us. It is an area of bone, about the size of a quarter, that has “fingers” of tumor tissue in it. He explained the surgery that would be required if there is regrowth; I won’t go into details here, but eww, don't want to do that. I’m not even slightly worried, though. I’m confident that the radiation will do the job and kill the cells if they start to develop. My next MRI/follow-up appointment is in six months. After that I’ll be on yearly reviews.

 

I asked him about my amnesia, and if any of my memories would come back. I have both short-term and long-term memory problems which he finds unusual. There are many episodes of my past that I don’t remember at all. As an example, I told him about the other day, when I saw a picture of Frida Kahlo. Brand asked me if I remembered seeing the exhibition of her paintings.

“What? We saw a show of Frida Kahlo’s work?”

“We sure did.”

“I don’t remember that.”

“We flew to Houston to see it.”

“What?!?! We flew to Houston to see a Frida Kahlo exhibition?!”.

“Yep.”

“Did I like it?”.

“You LOVED it. You were transformed.” Which, of course I would be, since I’m quite passionate about Frida Kahlo. Brand described as much as he could about the trip, our adventures in Houston, the hotel. I’ve got nothing. No memory of it at all. I thought we must have bought a book about the show, and sure enough I found it and went through it. All those beautiful paintings and I don’t remember seeing any of them. Kind of sad. There are other trips we’ve taken that I have no memory of (Albequerque), yet some trips (Spain, San Diego, Sedona) I do. My short-term memory can be pretty bad too. I can have a long conversation with a friend and two days later can’t remember a thing we talked about. Not a thing. Dr. Maggio said he’s baffled. (HA! I baffled a brilliant brain surgeon!) He said it’s unusual to have both amnesia and short-term memory loss. He was wondering if it was caused by the surgery or the tumor, and asked if I’d had memory problems before the surgery. I said "I don’t remember!" We both thought that was pretty funny. Fortunately, Brand was able to fill him in, and yes, I was apparently having memory problems back then. I'd forgotten about the time just before the tumor was discovered, when I couldn't remember what happened on 9-11-01. Brand asked, "You mean you don't remember planes flying into buildings?" Nope. Anyway, I do struggle to remember things, past and current.  I had a lot of problems remembering vocabulary and conjugations in Spanish class at the end of last semester and am a little worried about the next class. Ah well, I'll do my best. It's just for fun anyway. If you tell me something, please don't be offended if I forget what you said. //Edited to add link to: Memory Problems Part 2. See what happened next.//

 

Most Gamma Knife patients who develop side effects start having them around three months after the procedure. So far I’ve been lucky. The only symptom I’ve had has been insomnia that started three weeks ago. I still have some Xanax left from my irrational anxiety days (which are completely gone, btw), and on really bad nights, half a one of those does the trick. Another possible symptom, but maybe not, is, back in May, about a month after the procedure I did notice my vision was getting worse, so I called Dr. Maggio’s nurse and asked her to ask him if it could be related. She called back to say he did not think it was, but to be sure and see my ophthalmologist, which I was already in the process of doing. Sure enough, my vision had gotten worse. I knew it wasn't my imagination. I got a new prescription and also now have to wear glasses to drive. My regular reading glasses aren’t strong enough for my torch work so I use OTC reading glasses at 4.5 magnification, the highest I can find, which seems barely adequate. It seems like the deterioration has continued. I noticed last week that I can no longer read the closed-captioning on the TV when I’m on the elliptical at the gym. Seems like I could just a few weeks ago. My mom said that her vision problems developed just the way I described mine, when she was my age, so maybe it’s just a coincidence that I’m noticing it after Gamma Knife. Unfortunately I forgot to ask Dr. Maggio about it during the appointment, so I’ll just keep an eye on it. Get it? An eye…heh.

 

Love,

Jinx

jinxgarza@comcast.net

Check out my Gamma Knife story here.

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