Hey everyone, it’s been a while since I’ve posted on here but I’m finding myself in a particular low tonight. I got high dose radiation back in mid November and have experienced some not so great symptoms. I didn’t think this would be the case, but they’ve been much harder to deal with than that symptoms of embolization. My body feels like it’s giving out on me constantly, and going through finals in college right now (an arena in which fatigue is a natural companion) definitely isn’t helping. My roommate wanted to go on an impromptu trip to New Hampshire from Boston tonight, but I’m too weak to stand for more than 10 minutes at a time let alone make an hour and a half of a drive.
I know it sounds like I’m just complaining and whining away, so I’m sorry if it sounds like I’m self pitying. I don’t know, I guess I’m just tired of not being able to do the things everyone else is doing because I’m constantly sick, and I feel a little boring these days.
-Bella
Well that sucks to hear
No way any of us can tell one another on how to feel - it seems to vary quite a bit
By a straight miracle, my head feels quite intact - knock on wood. Yet, I’m back from an ER visit last week for a completely different issue.
It’s hard - this year kicked my health’s ass, hard
Why did you need radiation post embolization? I remember you had an embolization scheduled - I think
I have done some reading on gamma knife treatment & it’s side effects + I asked my neurosurgeon about it. . . Seems like the issues your experiencing are semi normal after getting it done.
We’re you prescribed cortical steroids?
Yeah, I been doing too much reading on my condition - if there is such a thing
Mike,
I’m sorry you were just in the ER, wishing you good health and a better last month of 2020 despite its challenges. I had high dose radiation (I believe proton?) instead of gamma knife because I have about 1.5 cm left of my AVM. They were able to glue half of it along with an aneurysm when they did embolization, but they had to tackle the rest with radiation. I was on steroids for the first week after radiation and they really kicked me down. Now I’m off of them and still experiencing bouts of low blood pressure and extreme fatigue. 2020 is a year of mysteries that I haven’t been keen on exploring haha. But thank you, saying that these symptoms were normal gave me back a small sense of normalcy.
-Bella
Yeah, year of mysteries 
I still have a tough time calling any of my health fiasco “normal”
I kinda figured that was their approach on your case - radiation & craniotomy both scare the living day lights out of me - the embolization post hemorrhage was plenty enough(I am so beyond grateful that it took on their 1st attempt)
Try to take it easy & give yourself time < oh yeah, way easier said or typed than actually done
Shoot - my other health issue(it’s my gallbladder) - seems almost irrelevant compared to my hemorrhage then embolization - the folk at the ER get it. . . This one is far from life threatening - just hurts like a mother
But, I personally try to take anything as a positive - at least my head is “fine” - so far
stands and applauds
I have told my wife that I am sick and tired of feeling sick and tired. I slept for over 9 hours last night and if I had let myself, I could be on nap #2 for the day.
I understand…
TJ
Bella,
It’s lovely to hear from you again, though I’m sorry you’re not at all well.
Proton beam therapy I’ve seen listed once or twice but I’ve not read any stories of recovery that I remember. I agree with Mike that often enough the gamma knife treatment leads on to similar trouble as you’re going through. I think @Melissa_Joyce and @amcoffey have had a tough time with gamma knife, so may be able to share.
If it is any consolation, you’re not missing out on anything this year! It is already the most boring year on record, due to needing to stay mostly indoors / away from folk / nothing is open. I took early retirement in March, hoping to enjoy the freedom of not having to go to work but to have a more social life. Well, 2020 has been a write-off of a year socially, even if one is healthy. So honestly, you’re not missing a bumper year. You’re not. You got your timing right in that way!
I hope you get better in order to get through your exams etc. It is really tough to be doing that and feeling poorly.
Very best wishes,
Richard
Bella,
I’m sorry you’ve been feeling rough since your proton beam. I had gamma knife last year, high dose (50gy) to 3cm cubed. I was ok for a few days but then felt EXACTLY as you described for the next few weeks, probably around 8-10 weeks. The text books say that the radiation effects tend to come later (if at all), but I can tell you, and I posted here seeking advice at the time, I felt awful for a few weeks after mine, and yet I don’t believe I had edema or other typical radiation related issues. I hope I can encourage you by saying that it cleared up within three months and I was back to normal. At the time I felt like it was the ‘new normal’ and that my energy levels would not return. My head felt very strange. But it did pass and I’ve had 16 months since with no ill effects.
Hang in there, take each day at a time and give yourself a break. Things will improve, you have a lifetime ahead to become fun again!
Best
Jonny
@Bellnucci Yes @DickD is correct. if you have any questions or need any help, or just someone to vent to, feel free to private message me. I understand what you’re going through. Stay strong <3
Bella, So sorry you are feeling so miserable. And no, you are not whining. You are being truthful. It’s more than okay to feel what you feel. You won’t always feel like you do. It’s a process and I don’t think we can speed it up. Unfortunately, you gotta go thru the storm, but when you come back into the sunshine, my God what a wonderful day it will be! Then, you will feel like making trips with your friends and doing things you used to do. True friends will understand and will be ready when you are. So hang in there. I pray better days are coming.
Sharon D…