ANA Discussion Forum
Archive => Archives => Topic started by: shoegirl on December 09, 2005, 02:53:07 pm
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Hi! All,
Monday is my big day, my first Cyberknife treatment. ;D
I am looking forward to having this part of my AN journey begin. Then I can focus on whatever recovery I may have - don't anticipate any side effects - but one never knows. Hopefully - I can go into the New Year with hope and all the pretreatment anxiety behind me. Hoping Santa will bring me positive CK results - that is #1 on my Christmas list this year! ;)
I have made peace with my decision to have CK and am hoping for the best. If it doesn't go my way then hopefully I will have my hearing and quality of life alittle longer. I will face whatever comes my way - there are worse fates in life.
I'm not nervous yet about Monday. I feel really good about it. Keep your fingers crossed for me!
Thank you again - all of your stories and advice have really helped me.
Best wishes! Suzanne
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My surgery is next Thursday. I want your treatment to be positive and sucessful. I will be thinking of you. God Bless you.
I hope to be reporting about my surgery and balance recovery by January 1st. As I am 63 years old, I feel that surgery for my 2 cm tumor approaching the brain stem, diagnosed in October, is best considering the loss of hearing that I have had for a while.
Who knows, if my doctors cannot get all of the tumor off my facial nerve I could be seeking later treatment for a remnant. I hope that radiologic treatments for these tumors continues to be a success for people. We are both brave and strong women for wanting to move ahead with our lifestyles. Be at peace.
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Boppie,
I wish you all the best with your surgery. I will be thinking of you as well. I hope they are able to remove all of your tumor and you have the best possible outcome. You are brave, I think of all the AN patients that have surgery and admire their and your strength and courage. Surgery was an option for me, but I am afraid and have two small children. A long recovery would be very difficult for them and me. Plus because of the location of the tumor (kissing the brainstem is how they described it) I would definintely lose my hearing in my AN ear. The decision of how to treat your AN is never an easy one - at least not for me - but you have to do what is right for you and hope for the best.
Thank you for your kind words. I will say a prayer for you and again I hope your surgery is a success and your recovery is quick. Please take care and I look forward to hearing how you are doing - I'll look for your post after Jan. 1.
Best Wishes, Suzanne
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Boppie, Shoegirl,
I wish you both the best and will be awaiting news of your progress and recovery. I am on the verge of scheduling surgery and may be going offline about the time you guys are coming back, but will look forward to swapping stories. AN is a strange jouney, and while life may never be quite the same, there are so many things to be thankful for. Just having the treatment options that we do is a blessing.
Here's to positive outcomes, no matter what the decision!
Sanddollar
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Thinking of you both this week and wishing you positive outcomes.
Suzanne, I can tell you that I had CK at Barrows (Oct) and the staff there are great, you will feel so comfortable in their capable, professional hands. Hope you have a CD for their CD player, it helps the time pass as that machine is buzzing about around you!
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Best Wishes to you both, make sure you are kind to yourselves after. This is a big deal even if it's not cancer and you deserve it. Take care, you are in my prayers.
Deb
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I will be thinking of you and praying that both of you have wonderful outcomes this week. I think this is the season for miraculous events so I will be anticipating hearing about yours. :) Its amazing how strong we all are. Sherry
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Boppie and Shoegirl: You will be in my prayers also!Keep your positive attitudes girls!! luv2teachsped
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Suzanne
I've sent you a PM - but to you and veryone else having treatment I wish you the best of luck, a safe procedure, and a speedy and progressive recovery. It's been 7 weeks since my CK and I have to say I'm looking at these holidays as truly blessed.
Keep us posted with your recoveries.
CC
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;D Hi,
I am happy to say that my 3 days of CK is over. Everything went really well. It was very comfortable, nothing hurt, I was able to relax - listen to music - and had zero problems getting through the treatments. I will tell you that I did have a lot of nausea, dizziness, fatique, and some vomiting. But once I told them about the nausea and vomiting - they gave me some meds and I feel much better. I didn't even mind the mask.  All in all a very positive experience. Also, I did take the meds to help you relax - Ativan. I am glad I did - but probably didn't need them.
I am very relieved it is over and hope the next 6 months go by quick so I can have my first followup MRI. And I brought my mask home, not sure what I am going to do with it?
Thank you for all of your kinds words and thoughts! I'll keep you posted!
Best Wishes, Suzanne
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Thats great Suzanne. Always pleased to hear positive outcomes
Larry
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Suzanne, I'm glad, too, that things have gone well so far. My AN is little (1.5 x 1.4 x1.3), and I'm 90% sure that I won't be having brain surgery :) [actually, a lot higher than 90%...] because of all the coomplications I've heard about (no puns intended; my hearing is distorted in the AN ear, there is tinnitus but all in all I'd like to keep what I've still got). Continued best wishes for both you and Boppie.
Rick
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Rick,
Having gone through middle fossa removal and having the an re grow 3 years later, still putting up with dbilitating headaches, tinnitus and very little hearing, I would support your approach at avoiding surgery if radiosurgery is feasible for you. get different opinions from doctors and also examine this site for numerous comments on the types of treatments available.
Larry
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Way to go Suzanne! I'm glad your treatment went well, isn't it so nice to have it behind you? I'm sure your 6 month MRI will be just fine. Keep us posted. :)
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Suzanne
Great to hear you've joined our everygrowing CK club. We're not exclusive - anyone can join. If the fatigue continues try Vitalzym. It's available over the net and certainyl got me through the 6 weeks of severe fatigue I had. Also be aware you'll probably be hypervigilant of new symptoms for the first few months.
Way to go girl! Keep in touch
CC
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CC,
Yes, I am a proud member of the CK club! I am happy it is over and it was so easy! The treatment that is - I feel pretty lousy now but that is okay! :) I know it could be worse.
Thanks for recommeding the Vitalyzm. I may just try it - I am very fatigued. How much are you suppose to take? Did it take long it to work?
When is your first follow up? Any new symptoms?
Happy Holidays!
Suzanne
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Suzanne
I got teh Vitalzym off the web. Just google it. They recommended three capsules three times a day at least 30 mins before meals. It worked within 48hrs. They said you could also take the capsules an hour after meals but I found doing this was not as effective. I also read thsi week on the CKSG website that they think the fatigue is your body trying to cope with all the radiation in it and 30 mins of exercise getting your heart rate above 110-120 shifted the radiation out faster. I s=wished I'd have seen this when I was so tired. But the Vitalzym did help and one day (at 6weeks) I woke up and felt fabulous and never looked back (so stopped taking it). The only weird thign I feel occasionally is the skin on three parts of my head feeling sore and prickly - just like when you wear a headband or ponytail elasctic and your hair has been in one place then you move it. It goes away as quickly as it came but it is a weird feeling! Other thas that I feel fabulous so hold on just a few weeks more and you'll feel great too. My first follow upis at six months - end April. However, I've spoken with my team on a coupel of occasions with concerns and questions. The've been great. AsI said I think I was hyper-vigilant so listening and reassurance was all I needed.
Take is slowly - sleep is good for healing. One good thing is that I had so much sleep over the first six weeks friends have told me I look so healthy, and so much younger - no bad thing! ;)
CC
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Hi Suzanne,
Glad to hear your done with CK; I remember I was feeling a bit tired too afterwards and I had taken the Vitalzym the very next day and was never overly fatigued. And just did some minimal exercising, like walking outdoors...I had CK done the first week of Oct and honestly I would forget that I have this thing if it wasn't for the tinnitus that I have. I should be having an MRI in Jan or March for follow up. I think any other kind of supplements like Coenzyme Q10 and gingko would be helpful, anything for cellular health and brain function also Vitamin C. Just an opinion after doing some reading, you have to find what works for you. Like you always hear drink milk for strong bones, well my mom never drank milk (hates it) and her bone density is that of a young woman (she is 70). So its a matter of what the body responds to I guess... Well, Happy Holidays to you all!
Sue