I had radiation therapy on my AVM which is small and 3.5cms deep into my brain just above my right ear.
The day was a bit gruesome...drilling wholes in my skull for the metal frame but otherwise do-able.
I felt like I was making slow but sure progress until last week.
I just feel like I've fell apart. Nightmares are passing, but I wake often at night. Feel so exhausted even after a small activity. Going out in the wind...gives me severe earache and sound sensitivity. Mood swings...its like permanent PMT...I cry even at the adverts on TV. My capacity to do things and be around ppl seems vastly reduced. My head is still sore/painful and my hair has started to fall out in clumps. I think I'm struggling with the exhaustion the most and I seam to have the emotional stamina of a fly. The slightest stress 'feels' so intense.
And the truth is Im frightened. What if this doesnt pass ? What if this is it ?
Ive been through a tough year... the diagnosis , different tests deciding on options...and the treatment...and its still inside my head !
I just want someone to tell me its going to be ok. This will pass.
Hi Chrissie. The hair grows a back from every thing I have read on here. You might want to give your doctor a call to rule out radiation necrosis. Don’t panic…the name sounds nasty but doctors usually just treat with steroids temporarily. Or they can give you something for the headaches.
I did not have Gamma Knife…you may wish to post this on the Gamma-knife sub-group. I have just read lots and lots of threads on this site. These things usually do pass.
As far as being emotional…hey your brain has been through an awful lot! I do understand the exhaustion bit. I felt tried for 2 years after by bleed and craniotomy. But yes it eventually passed.
Give your brain a catch to heal but give the doctor a call. You pay his salary!
Hi Chrissie,
I had gamma knife in September 2013. It’s been up and down for me.My hair to came out more at the start not so much now. I have had headaches since they did the GK. They have been all over the place. I am on steroids right now because they found swelling around where they did the GK. It’s a 2 week dose. Hope this resolves my issues. Just make sure to keep an open conservation with your doctors. I know it’s a lot but you will get thru it.We all have different reactions to the treatment and it’s hard.
My pin sites hurt for a bit but that did go away. I have trouble with certain pitches. So now I just keep a pair of ear plugs with me at all times. I have noticed that i am more emotional now then I used to be. I think that’s kind of normal for everything our brain has been thru.
You will be in my prayers!!!
Hi chrissie, it was great to hear from you on my post. I think we are both struggling which is a shame because I wasn’t expecting any problems really. my energy levels seemed to increase a couple of days ago but they are still low and I cannot shift the headaches even with painkillers. I didn’t really suffer with lots of headaches prior to gk so i really hope it passes because I don’t want to regret having any treatment. I am still getting nausea too but it’s manageable. I’m going back to work today so i will have to see how I get on. We will get better im sure!!
KEEP SMILING OR WE WILL CRY
Thanks for your reply Nyiana. It’s the exhaustion I can’t cope with. Hood idea on the ear plugs tho…will give them a try. I spoke to the hospital today and they want me to see them on Friday, so we shall see what they have to say. Hope things keep improving for you Xx
Absolutelying keep smiling !
I’m sure it will pass. We have a 96% chance that it will. Good odds eh ? Hope all goes well at work today. Will be thinking of you xx
Caroline when I read your comment it so reseniated with me. I have wondered if having GK was the right choice. I guess we make the best choice at the time. No one ones the road not
traveled so I guess there is no good in second guessing our choices. I am hoping they have found the reason for my headaches but we will see. This is my second week of steroids which I will be done with Saturday!
I hope they find what is causing yours and they start to go away!!! I admire you working. How do you do it? It takes so much energy which I have had very little since my bleed in April 2013. Just know I will praying and hoping you and Chrissie both feel better soon!!!
Hugs and Prayers,
Niyani
Just a thought Re: Headaches Caroline. Anatriptalin has been a godsend for me with the headaches. I started on 10 mg and slowly built up to 50mg. They did make me drowsy at first but the relief from the headaches was a godsend. I’ve phoned the specialist Neuro nurse today and she’s going to refer me for a few neuropsychology appointments to help with the trauma of it all. Referral takes 6 weeks but think it might help. I’ve got appt to go and see the radiology guy on Friday. Hoping they will say it’s all normal and will pass in a few weeks xx
Hi Chrissie, I finally went to see my gp last week and she prescribed me amitriptyline and although I have to go to bed early coz they knock me out I have not had a headache since starting them which is great. my anxiety levels are getting better too and according to sheffield stereotactic centre what I have been experiencing is a completely normal reaction to everything that has happened since October so that made me feel a lot better, how are you coping?
Spooky, was only thinking of you today. Great to hear your feeling better and have the headaches under control. They put me on 10 mg for a week then 20 for a week etc…until I settled on 50. Luckily Ivery been fine on that. For me the fatigue did ware off pretty quickly, hope it’s the same for you too. I’m happy to say I’m doing really well Back at work…really feel my body coming back to life A little more every day I plan to start running again next week…I stopped that months ago when this all started. Also I forgot to take my anatriptalin the other night and still had no headache so might look to start reducing that soon too. So all is well again and I feel very grateful to feel good and healthy every day. Sending best wishes from North Wales xxxx
