Hi. Just wondering if anyone else has experienced internal tremors after gamma knife and why they happen? I’ve spent the last 5 nights having them and they are getting progressively worse. Last night I woke up about 6 times with my left cheek and left arm shaking extremely fast for about 5-10 minutes. Although I couldn’t see it, I could feel it. It also felt numb at other times until I moved it. My AVM is in the right Parietal lobe. I’m hoping it’s the AVM closing up! Thanks for any replies. Gill.
Yes. I had them too, twice. I had them in 2000 after gamma knife and in 2010 after craniotomy. Apparently according to doctor they are your body’s way of coping with head trauma. Definitely follow up with your doc if you have questions, but you’re not going crazy! Hang in there!
Arh thank you that’s good to know. I did ask my GP doctor but she didn’t have a clue.
I think most GP’s are clueless when it comes to AVM’s or colds! That’s why this group is so wonderful. We know s–t the GP’s don’t have a clue about. As such, we have to keep this group going and growing!
I would liken it too a fighter pilot. I liked planes growing up and so I read a whole lot of books and stuff about em. Now you wont catch me in the seat of one of those. I can’t even drive a car anymore for goodness sake for poor eyesight! But my interest in the subject possibly exposed me to material that a fighter pilot may not know (but probably does).
Same goes for brain trauma. The docs get all the training and education. But you and I are in the driver’s seat. It’s our brain! So, if you got something going on that you can’t explain but bothers you, take it to the professional to have em take a look at it! Otherwise, you may be missing something that they need to know about! And of course, sites like Avmsurvivors and your local brain injury services (mine is www.biav.net) can get you in contact with your local services! Blessings as you continue!
Hi again Random beggar or anyone that can help!
Just wondering how long you had these internal tremors for please?
It’s been 4 months for me now and it’s several times every night that I wake up shaking. It can be in my arm, chest, stomach, face, head, all down the left side. I wake up shaking and after a minute or 2 it goes away sometimes 10minutes. I can move about fine and I’m totally with it. I’ve seen the neurosurgeon and now the
Neurologist and no one has a clue what it is! They’re sending me for an EEG incase it’s epilepsy.
Thanks for any help. Gill.
Gill, I can’t provide much in the way of experience. Maybe the EEG will provide some answers. I hope you’re able to find some resolve. Take Care, John.
Hi John, thank you anyway.
I’m just praying it’s not epilepsy as I’m positive it’s not but if it was from the gamma knife why is it not a known symptom!
Hey gill1. For me, I went through psychological counseling for a bit and the problem largely subsided. I do from time to time see them crop up when I’m tired or dehydrated. But, they tell me it’s all in my head. Being nearly 20 years post injury, I can manage. But just a reminder, you are your biggest advocate! If there is a condition, symptom, or question, ask! And know that there are those out there who wish you the very best! Blessings as you continue! Of note also, deep breathing exercises works wonders in calming the nerves!
Thank you for your reply and kind words. Did your tremors sound exactly the same as mine then? As no one else seems to know what I’m talking about so I’m so pleased you do! I was thinking and hoping it was just from stress and worry about getting through this super long wait to be AVM free without something going wrong! I’m sure if it was a seizure I wouldn’t be able to walk about and be fully aware but I don’t know. Thank you. Gill
Hello again! I believe yours are the same as mine were, but certainly check with your doc to be sure. My doc, I can’t remember which one, diagnosed me with PTSD, thereby opening the possibility of treatment medication. If it was a seizure, in Virginia you can’t drive for 6 months! As far as why it’s not a known event, it may simply be exposure. To be quite fank, many persons who have a rupture die right there. But you haven’t and didn’t so that’s good news! I had gamma knife twice and a cranie. Check with your doc on how to appropriately manage it. Blessings!
Thank you I really appreciate you sharing your experience. Take care. Gill.