ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: cindyjarrett on September 11, 2012, 11:19:20 am
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After visiting UVA and the Mayo Clinic in Minnesota. I have decided that gammaknife is the best decision for me. I have read so many posts on the discussion boards which helped me make my decision. I wish I did not have to wait a month. Has anyone had gammaknife from UVA? I live in Virginia and am about an hour and forty-five minutes from UVA, which factored into my decision.
If anyone has a success story about gammaknife, I would love to hear from you.
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Dear Cindy,
I am one happy camper after my Gamma Knife experience this June 11th past, in fact just yesterday, I passed my 4 month milestone on what I hope is a mild ride waiting for symptoms of swelling and eventual necrosis of the tumor. Dr. Sisti has said that there is a 3 to 9 month window were some symptoms may develop before necrosis (cellular death).
Happily, I have only had mild headaches and some neck pain in the couple of weeks after the procedure but I returned to work full time 2 days after the procedure. Scarring was minimal.....They faded 3 weeks after the device was removed. I have had minimal facial twitching mostly in the morning and some in the evening though.
Wishing you well on your journey! I will pray for you.
Did anyone tell you the machine is silent? They didn't tell me and I was pleasantly embarrassed when in the middle of the procedure I said "is somebody going to turn this thing on?" and my doc told me that I was halfway done! No problem, I just returned to the meditation, and in a flash it was over. The whole procedure lasted 40 minutes.
Hope it goes as pleasantly for you.
Mike
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Thanks for responding to me. I will try and follow your posts to see how you are doing. Feel confident in my decision. Will keep both of you in my prayers.
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Dear Cindy,
Please feel free to start one of your own, if you have the time.....It has been therapeutic and helpful in the healing process as well. PM me if you prefer.
Mike
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I had my gamma knife procedure in March. I only had a headache for a few days after the procedure. I don't for a minute regret my decision to go with GK. In fact, I go on Monday for my first
MRI post GK. Think good thoughts that I will have a positive outcome.
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Thank you Mike. I will take all the help I can get.
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Bonnie,
Praying.......
Mike
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Hi Cindy, you may already know this but UVA also has a newer GK at Riverside in Newport News, about 3 hours southeast from Charlottesville. Keeping you and Bonnie in prayers. You made a good decision. The surgeon that was overseeing me actually recommended GK as 1st treatment option.
Skip
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Bonnie,
Thanks for updating. Sounds good. I still have 2 1/2 weeks till I have gammaknife. I will keep following how you are doing. You are in my prayers.
Cindy
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You will do great!!! they take great care of you at UVA!! While I can think of lots of other places to be.... returning is always pleasant.
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My thoughts are with you. There are very positive responses from others with experience! Let us know how you do.
Karen
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Hey everyone,
Just wanted to remind everyone to keep me in your prayers tomorrow. I have just arrived at the University of Virginia for my pre-testing. I will be having gammaknife tomorrow morning. I have to be there at 6 a.m. Have totally turned this over to God and have lots of people praying for me. I will update as soon as I am able. Thanks for all the prayers.
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Cindy,
I met with Dr. Sheehan a few weeks ago and thought he and his staff were great. I think you are in good hands and I am sure you will have a good and successful experience tomorrow. I've ended up choosing microsurgery based upon my age and tumor size. Although I wanted to avoid surgery, I think it offers me the best chance of long term success.
You will do great tomorrow and I will include you in my prayers tonight.
Ken
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Cindy and Ken, you are both in my thoughts and prayers.
Karen
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Hi Cindy,
I am usually up at 6am and you will go to the top of my list. God will be with you, giving you His peace. Please let us know how everything is going. Charlottesville is beautiful this time of the year, I hope you get to enjoy some of the colors of fall.
Skip
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Skip, Karen and Ken,
Thanks a bunch. I will post once it is over.
Cindy
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I'll look forward to reading your updates. :)
Karen
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Cindy,
My prayers are with you as well,God be with you as you undergo Gamma Knife. Relax it is silent! Meditate to wellness!
Mike
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Well gammaknife today was not horrible. Total time at UVA was 6 hours. Having the halo put on was easy. The worst part was the MRI. My neck seemed to hurt after it was over. I guess it was how I was laying, the weight of the helmet and frame, and being able to not move at all. So after that I was dreading having the actual procedure done, but it was okay. They tucked towels under my neck and made me a little more comfortable during the process. Having the frame taken off was fine. It did not give me a headache or make me sick. They gave me something to drink and eat and said I could go when I felt okay. I really could not wait to leave and had been looking forward all day to heading to the parking garage. I tried to visualize while I was having the procedure that God and his angels were killing my tumor. I was very calm during the whole procedure because I could feel all the prayers from everyone. I could not have gotten through this whole process without God, whose comfort has been with me during this journey.
I do not have facebook but my children posted to have all their friends pray for me. I find it amazing the number of people who responded. We actually came across two people at UVA who had saw the posts my children had made and had already been praying. God works in a lot of ways.
Tomorrow is the first support meeting in Roanoke, VA, where I live. I hope to be able to attend and help others in the future who are struggling with an AN. I will keep everyone posted with updates. Thanks for all your support and prayers.
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Cindy - thank you for sharing your GK experience. I just had CK at Stanford this past week although am from Northern VA. Congratulations on becoming a toastie-postie and let us pray for successful outcome! God bless!
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Cindy and Novagirl, I am standing with you for a successful outcome. Hopefully the worst is over and the rest is a breeze. Cindy I just met a man from Roanoke who is also having proton therapy, but his treatment is for bladder cancer. Makes me thankful for just having an AN. He is in good spirits and has been given a great prognosis. He is selling his motorhome and buying a condo in Florida.
Skip
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Skip and Novagirl,
Keeping you both in my prayers as we travel this journey together. I feel fine. Am just a little tired and my head is a little sore. Keep me updated on how you both are feeling.
Cindy
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Hi Cindy, Thanks for the prayers. I will be updating in the Radiation section in my proton journal, so far so good.
Skip
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My prayers and thoughts are with the three of you.
Karen
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Hi all, I was waiting for results, had gamma knife in May 2012 at Univ. of Pittsburg. I have a 2.4 tumor. Just had a 5 mos. check up with no growth. They have reported a 98% success rate. Please look them up! Leslie :)
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Leslie,
So glad to hear about your checkup and results. Sounds wonderful and encouraging. I just had gamma knife at the University of Virginia on October 12. I go back in April for my six month follow-up. How are you feeling and have you had any side effects? I feel really good.
Cindy
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Well I am now four months after gamma knife. Last week I began to experience sharp pains around my cheek , ear and head. I have awoken with what feels like ear infection two different mornings. The sharp pains are quick and go right away. I only have them a few times a day. I decided I would go to my ENT and see if I had ear infection. He said ear drum looked good but did check me for TMJ. It did hurt a little on my AN side when he pressed. This is also the side where I am having all the pain. He said that I have TMJ. I am not so sure. I wonder about trigeminal neuralgia. This is not unbearable just a little scary. Anyone else have these symptoms?
Cindy
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Cindy,
Nothing to add, but I just saw that you had updated your post and I wanted to say hi. Sorry to hear that you are having some pain, but I am sure the qualified docs at UVA will make sure you are recovering well. It is hard to believe that you are only 4 months post GK. I can remember our posts when we were both still trying to figure out what to do and where to go. That seems like a lifetime ago. Hang in there and I hope you get some good news soon.
Ken
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Hi Cindy,
I had gammaknife almost four months ago also. Since then I've been dealing with balance issues and some minor facial nerve problems (eye tearing, facial twitches and and puffiness above the eyelid on the AN side) and I've also had occasional jabs of pain between my ear and jaw which might be similar to what you are experiencing. About two months ago I got checked for what felt like an ear infection but my ear looked perfect so I decided it was just the ear fullness I had when initially diagnosed returning again. Luckily it only lasted a few days this time. I don't know if this is similar to how you feel.
Yesterday I started feeling sharp but fleeting pains in the part of the back of my head that received the radiation. I was actually checking to see if anyone else ever mentioned this when I saw your post. I tend to think that all of these issues are either the effects of the AN itself or its response to radiation and I try not to worry about them. When I mentioned these issues to my doctor she did say that now was the time when the radiation effects are at their maximum. Hopefully, the issues that we are both having are signs that the tumor is starting to die off.
Best wishes,
Maxine
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Maxine,
Thanks so much for writing. It just helps to know that other people may know what is going on with me. Yesterday I had a really good day with hardly any stabbing pains. I, too, pray this is a sign that the tumor is going to die. Keep me updated on how you feel since we probably will be experiencing the same things.
Cindy
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Haven't posted in a while and thought it was time. Had gamma knife on October 12, 2012. Four months in I had a lot of facial pain. Doctor put me on steroids, and they worked. Went today for follow up MRI at UVA. Tumor is stable and not showing any signs of growth. It also appears to not be taking the contrast like it did before gamma. Doctor said these are good indications the tumor is dying. Feel great. Just thought I would update for anyone wondering about gamma. Go back in 6 months for next MRI.
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Hi Cindy-
So glad to see your good news!