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@mountainseeker

Thank you @ellene and @jmb73 I appreciate you sharing your stories and they are a big help, more than I can express!
I have had many painful procedures this year, multiple EMGs and Nerve studies as well as nerve biopsies. I was a little nervous going into those but not nearly the same as having the head frame. The numbing for the nerve biopsy hurt almost as much as the some of EMG/Nerve study spots. I think one of the things that is making me nervous is the times when I’ll be in the MRI machine, and in the Gamma Knife machine when I have nothing to do, afraid I’ll start focusing on the head frame and work myself up. I also worry about the time in between while we wait for the doctors to figure out the plan of action, my mom is going to be with me and I worry about her as well because she has the same horrible memories of it and anxiety. I worry that it will be harder on her to see me in it than it will be for me wearing it and because of COVID we can’t have someone else there to take over if she needs to leave or to be there for her while she waits.

@ellene I also struggle with sitting still, I suffer from Hypersomnia; we can’t stay awake so we often become super active just to try to stay awake.
Thanks for sharing about the pressure feeling, I hadn’t thought of that and it would have caused a bit of panic – like you I probably would worry about how much pressure can the skull take; I’m sure I still will but now I know about it, can reassure myself that it’s normal and prepare myself. Your comment about stopping for gas on the way home made me laugh, lol gotta wonder what people thought. Didn’t even think about bruising or black eyes, if they stick around very long I’ll have to come up with a ridiculously silly story about how I got them when somebody asks – pirates popped into my head. That’s wonderful about your sparkly eyes with the head frame on, I will have to get a picture as well though I don’t know if I’d want to look at it until long after this is all over. I bought some fake mustaches, thought I might stick one on the frame, lighten the mood.

Joan, I usually am that way as well just get it done with, rather not stop. Interesting to hear they strapped your arms down, I didn’t know that. That’s would be very upsetting and understandable why you didn’t like it. That wouldn’t be something I’d like either, but knowing it’s a possibility helps tremendously. I can just imagine what my anxiety level would be if they just sprung that on me, usually goes away fairly quickly but not a fan of those kinda of surprises. Having some time to cope with the possibility makes a world of difference. Ugh, I hate getting IVs, I knew I would have one but the anxiety over the head frame was taking all my attention and I keep forgetting about that part. So thank you for reminding me, so that I can ask for the nurse that does the hard patients so that they only stick me once (hopefully) – I’ve threaten to walk out, that they get one chance so they better make it count – not sure if I’d actually do it. I’d probably just want to get the whole thing done and over with, but they don’t need to know that. Lol.

Thanks @hopeful33250, I can’t think of any more questions right now but will post again if I do. I will also follow-up sometime after it’s over with an update.

Thank you all again.

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Replies to "Thank you @ellene and @jmb73 I appreciate you sharing your stories and they are a big..."

@mountainseeker while having the procedure, for 77 minutes, I could hear my pulse beeping on the IV machine. To entertain myself, I tried to slow and speed up my pulse. When they took me out of the machine the radiation oncologist remarked that I was holding quite still and she asked if I had fallen asleep. I told her that I was awake, but in order to keep myself entertained, I had tried to lower and speed up my pulse rate. After I said that the entire room went silent. You could have heard a pin drop. I laugh about it. Apparently, no one has ever said that before. I found I could lower my pulse rate by consciously relaxing. I had to work at it a bit. I couldn't make my pulse rate speed up, but as soon as I quit focusing on the relaxation, my pulse rate returned to normal. Maybe it isn't something they would want you to do, but it did keep me entertained and somewhat relaxed during the procedure. I have also had some really long MRIs. I have done some goofy stuff to keep myself entertained. When I was a little girl we had a story that was written much like the song "There was an Old Lady Who Swallowed a Fly." I tried to recite that entire book from memory, to myself of course. Nothing out loud. (I wasn't supposed to move me head not to mention that I would have embarrassed myself beyond measure.) I even started singing, in my head,100 Bottles of Beer on the Wall. I do some writing and I wrote about that experience but I can't seem to find it right now. I think it was called 10 Things To Do While Lying in an MRI Machine for 2 Hours. Something like that. You've heard enough from me. Just thought I would throw out a few of the strategies I used to keep entertained in that kind of situation. Again, best wishes!

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