Mask that didn't fit

[okiesandy]

I have a question??? Has anyone had any experience with a CK mask that didn't fit. Mine pushed my lower jaw back so far it made my teeth bite into my lower inside lip. I couldn't wear it and it wouldn't work for the machine. They have taped my head to the table to do the treatments. I am more than a little worried about this. I am told it is done a lot. Never heard of it. I have one more treatment to go on Monday.

Sandy

[shoegirl]

Hi! Sandy,

I have been wondering how things were going for you?  I hope you are okay.  Can they have you scoot up a little so that your head is further back in the mask?  I did that so I was positioned better in the mask.  Also, could they shave a little of the mask around the neck area to make it fit any better without changing the intergity of the mask?  I have heard they can do this if the mask is confining in the neck area?  Not sure if this would help with the lower jaw or not?  Have you been wearing the mask with the tape? Or just the tape?  Whatever they do it is important to be in the same position each time.

I hope Monday goes well for you!  How are you feeling?  Praying for you!

Take Care!
Suzanne

[cookiesecond]

Sandy,
You are in my thoughts and prayers.
Lynn

[jamie]

If it's something that's fairly common, I wouldn't worry too much about it. Remember the x-rays from the ceiling track the tumor using bone landmarks of your skull, not the mask. As long as the tape keeps your head relatively immobile, you'll be fine. Remember CyberKnife tracks small movements and compensates. I remember you said you didn't care for the mask anyways, so it may actually be for the best.

[okiesandy]

Jamie,

I really don't know if it is fairly common. I was hoping someone would tell me if it ever happened to them or they have heard about it.

I was not to worried about it the first treatment because the sticky side of the tape was to my face. On the 2nd one the sticky side was up. When the bed/table adjusted the thing slipped off my chin. She had to come back in and tighten it. She did say people do tend to drift if not restrained. I know the bed/table only adjusted once the first time and a lot the 2nd time. It is my understanding from talking to one of the patients that when they say the arm will adjust it only means a little bit. Tiny. If they are going to get it accurate down to .79 mm I sure don't want to move. For my comfort the tape is better. However, this has been such a nightmare with all that has happened I want the best chance I can get. The mask must serve some purpose or else tape would be the better option. Only two pieces one on the forehead and one on chin.

I feel like I have sunburn on the side of my face and my eyes are watering and burning. I was so full of Xanax the first treatment nothing could have upset me about the mask. Except the pain of it pushing my teeth through my lower lip. Ouch!! and double ouch!! That lasted for about a minute and a half until I had to say uncle.

I hate to be a baby about this. However, I have never posted all that has happened with the doctors I have seen and some of the down right crazy answers to my questions I got. Nothing has been normal with this whole thing. I know nothing is normal about an AN, but something should go right just once. In a private chat last night with about 7 ANers I learned that you do not reseach, do not question, do not request, do not ever dare to challange an opinion. I thought I as doing everything right at the beginning, I followed the guidelines, ask questions that were not answered or scoffed at and basically made fun of because I would read or post anything on the internet. I was told by one doctor that the people who posted on these forums were just a bunch of pampered princess and princes who expected the worst and got it. That guy went by the wayside very quickly. At least the doctors I have now do not scoff at the research or the forums.

I have so much admiration for the people on this forum. They are all so special. Even if I sometimes do not agree with a some of their view points, they are still wonderful. I don't believe I have ever met a more caring group of people. If could meet and hug every person that has emailed me or talked with me on the phone I would be so happy. Even the two who emailed me and told me I was making the mistake of my life by having radiation.

Sandy