› Forums › General Melanoma Community › Post Radiation MRI Looks Good
- This topic has 6 replies, 4 voices, and was last updated 7 years, 11 months ago by
miaka618.
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- June 1, 2017 at 12:53 am
Today was the day for my post radiation MRI. The quick background: Brain met removed 3/24. Post op MRI looked great. 10 day post op MRI showed tumor regrowth. Radiation was started the following week in conjunction with Nivolumab. CT of chest/abdomin/pelvis showed slight tumor shrinkage of adrenal glad and lung mets. I was waiting desperately for the brain MRI. Over the weekend I had a seizure down the right side of my body and was put on Keppra after a call to the doc.
The MRI shows some edema but no tumor growth and no new mets! I'm cautiously optimistic. Was hoping to be able to drive again soon but with the seizure the state has me out of the driver's seat for the next six months. This is going to put a damper on going back to work.
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- June 1, 2017 at 11:34 am
Hopefully it stays clear and you can get back to work!
I have a question I hope you don’t mind indulging me in. What is it like to experience a seizure? My primary is a hop skip and a jump to my brain so I wouldn’t be surprised if I had one show up there. Sorry if it is a weird question. I’ve just always wondered. -
- June 1, 2017 at 8:29 pm
That's fantastic! Sounds like things are going well all the way around! : ) Seizures… ugh. Hopefully the Keppra will keep you clear of any further issues.
April… to answer your question… it really depends on the kind of seizure. The first time, I felt a little frustrated fumbling for words (I was trying to read a question for a radio contest we were doing). I didn't really know what was going on, but listening back to the recording of the episode, it sounded far more frightening than what was rolling through my mind. I felt like I was just tripping over words. The recorded sounded more like someone having a stroke and speaking mumbo jumbo. Apparently I vegged out shortly thereafter, and by the time I woke up, I was on the floor being loaded onto an ambulance gurney. I had nooooo clue why, didn't care one bit, and felt perfectly swell and comfortable. I was chatty full of random stupid questions for the EMT in the back of the ambulance. "Why do you have pvc pipe up there? Is that going to fall on me? It's secured to something, yes? Are you sitting on a chair, or are you having to kneel down? Can someone tell my son to pick up my bike? It's in my office, and I don't want it left there over the weekend.". I'm sure he must've been thrilled to be rid of me once we reached the ER. HA! ; ) My husband and son said I had a second grand mal at the ER, after being told I had brain mets. I don't remember that… or much of the next three days. The steroids and keppra had me pretty hazy. Two years later (almost to the day!), I had the left side of my face and my left hand lose control. That time, I knew what was happening. We had seen it coming with the increase in edema on my MRI's for about 4 months leading up to it. I was on anti-seizure meds at the time… but it overwhelmed them. It was a LOT of edema, and my brain shifted quite a bit from center. ANYWAY… the first thing to hit was HALF of my tongue. Then half of my face started to squinch up and twitch. I walked out and showed my hub what was going on. I couldn't speak, because half of my face and tongue were completely out of my control. I wasn't scared, because I knew what was going on, and more importantly, why it was. My left hand was flinching by the time the firemen and EMT's showed up. It was frustrating to be getting asked questions that I could answer, but not respond to verbally. About 10 minutes later… it subsided on its own. By the time I was rolled into the ER, I had control again and was able to explain to the doc why this was happening. Oddly enough, he was the same doc that treated me in the ER two years prior, when I first learned of the spare mela-meat in my brain. He walked into the room, and I said "You look very familiar to me.". I didn't realize how I knew him, until checking through my paperwork from the prior visit. Sooooooo… long post short… it can be frustrating to not have control over the spazzing muscles. But, if it's a full blown, drop to the floor, grand mal….. it's going to be far more frightening for those witnessing it, than the person going through it. At that point, the brain has lost all consciousness, and it's like being asleep.
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- June 1, 2017 at 10:48 pm
Wow! That's a pretty awesome answer. I feel like I am now thoroughly prepared for the possibility of it happening (not gonna happen, knock on wood). Haha! Brain mets is a pretty scary idea for me, but it seems that most people do pretty well with them, with the exception of seizers, as long as the tumor burden is low.
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- June 1, 2017 at 11:11 pm
Thanks for all the support. As for what the seizure felt like it was like very intense muscle cramping and spasms along with tingling and burning. I didn't lose consciousness. My tumor was in the sensory strip on the left half of my brain so it controls my right foot. There is some swelling there and so it makes sense that I felt the spasms, tingles, and cramping on my right side. I haven't had any more of these symptoms so I think the Keppra is working well. Hopefully you don't experience any brain mets or seizures. I think the scariest part is that I was home alone with my 5 year old. I called my husband to come home (he was at my older daughter's softball game) because I was nervous that I couldn't take care of the little one. Now I'm nervous that I shouldn't be home alone with the girls in case something happens.
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