Gamma Knife reactions - swelling? sensitivity to altitude?

I have always lived near the coast in So Cal but my family has a second home in the mountains that I have been going to since I was born and I never had any problems adjusting to the altitude (4500 feet). I had gamma knife in May 2008 and went to our ranch for the first time after the procedure over Thanksgiving. I had major swelling in my hands, feet and face but also had 4 red ant bites and assumed it was a reaction to that. Once back at home I discussed it with my Primary Care Dr. and he prescribed an epi-pen to keep at the ranch in case I had a more severe reaction to ant bites in the future. Over Christmas break I spent another week at our ranch and again experienced swelling in my hands, feet and face. It was not as severe as it had been over Thanksgiving but it made me wonder what I was allergic to since I didn’t have any red ant bites during that visit. I started to notice that even at home I was waking up with my rings feeling a bit tight but they would loosen up as the day went on so I didn’t dwell on it too much.
Last week I chaperoned my daughters 5th grade Outdoor Ed Science field trip where we spent 4 days in the mountains at an elevation of 7000 feet. Every morning I woke up noticing that my hands, feet and face were swelling more and more and it was not decreasing during the day. The last night I was there I was unable to sleep because the swelling was causing extreme discomfort. My fingers were throbbing from my rings suddenly being so tight and my eyes were aching. When I looked in the mirror the following morning I was startled at the swelling in my eyelids - it was so severe my eyelashes weren’t even visible and my eyes could only open about 1/5 of the normal amount. The camp nurse said that it was altitude sickness but didn’t understand why I didn’t have any of the more common symptoms such as headaches and nausea - she was also surprised to hear that I had been going to the mountains my entire life without any problem until a few months ago.
Last month I had my 6 month post GK MRI which showed that I had swelling in my brain adjacent to the area where the AVM is located. I can’t help but wonder if my sudden reaction to altitude and the daily swelling is a direct result of either the GK radiation or the brain swelling that I have. I have read the discussions here about the pains and odd sensations that some of you have experienced after GK (I have those as well) and was wondering if any of you have noticed an increased sensitivity to altitude or even an increase in morning swelling/puffiness in your hands, feet and/or face.
I plan on calling my neurosurgeon at some point before I head back to the ranch for Easter vacation but in the meantime I thought I would post here to see if any of you experienced anything similar.
Thanks in advance for your contributions.
Christine W.

Hello Christine. I have one question-Why have you not yet called the neuro ? These symptoms need to be addressed…There are many variables that can contribute to your symptoms and if you need some meds or treatment for swelling or blood flow issues, why wait ? I had similar troubles after my procedures (I had several in sequence, so in that regard we are different) and they were related to-as well as caused by-the procedures individually and collectively. Be good to you. Take care of you. Call that neuro and find your answer, yes??

Marianne, thank you for your response. I don’t have any excuse for not calling my neurosurgeon other than feeling guilty and embarrassed for ‘bothering’ him. Also, knowing that it will be a few months before I’ll be going back to the mountains helps me rationalize my procrastination.
Did you have swelling in your brain after your procedure? Also, did you experience swelling in your hands/feet or face?
Now that I have publicly humiliated myself by admitting that I haven’t made the phone call because I’m a wimp, I’m going to call the Neurosurgeon’s office as soon as I click ‘add reply’. But I’m telling you right now, if the nurse that answers (one of them is VERY unpleasant) treats me like I’m asking her the dumbest question in the world I’m going to tell her that Marianne Elizondo FORCED me to call! LOL
I’ll let you know what I find out and thank you again for your response and for inadvertantly motivating me to do what I should have already done!

I called my neurosurgeons office. The receptionist was wonderful and put me at ease, making me feel as if I was justified in making the call. She immediately transferred me to a nurse and, as feared, I was stuck speaking with the less-than-pleasant one. Her loud sighs were evidence that she was highly annoyed to be talking to me. She asked if I had consulted with my primary care doctor prior to assuming that my symptoms were related to my AVM or the GK treatment. She said she couldn’t imagine that my swelling and recent symptom of being sensitive to altitude was anything that the neurosurgeon would know anything about but she said she would talk to the neurosurgeon and get back to me. IF I hear back I’ll let you know what I find out.

That makes me SO SADDDDDDD to know that she spoke to you like that!!! What is WRONG WITH people!? Why did she become a nurse if she didn’t want to help people??? I might have to come to California and give her a piece of my mind.

Okay, I’m so glad you called. How can it NOT be related since it only started after you treatment!! I wonder if perhaps the Gamma has made you more prone to altitude sickness? Or if you already have some swelling of the brain tissue, perhaps you shouldn’t even BE at a high altitude. If this: http://en.wikipedia.org/wiki/HACE can be a POSSIBLE side effect of high altitude sickness maybe you shouldn’t risk it? Just a thought. But I do think you need to be very careful from now on. Just my opinion though! I hope the doctor gets you some answers. And do NOT be embarrassed for not calling the doctor. I think we are all guilty of that when it comes to getting care for ourselves.

Joy, thank you for your supportive response. The nurse never returned my call so I’ll wait a few days and call the office again. Hopefully I’ll get a different nurse!

The nurse was a few days late but she DID return my call. She said the Dr. said he thinks I’m having an allergic reaction which is causing the swelling. He doesn’t think that it’s related to my brain swelling but said to take Claritan daily, starting a few days before I go to the mountains, and see if that keeps the facial swelling away. I’m supposed to touch base with them after my next trip to let them know if the Claritan worked.
IF my swelling has nothing to do with GK or the residual swelling I have in my brain, I am at a complete loss as to what might be causing it. :frowning:

I am so interested in what you found out…i live in TX and had GK in 9/09; i am planning a trip to Utah next week; not flying becuase of possible problems with altitude --just thought about the mountains and problems that i could have; i am now scared to go…if you read this, i would like to know what you found out…thank you tina

Christine Wellborn said:

The nurse was a few days late but she DID return my call. She said the Dr. said he thinks I’m having an allergic reaction which is causing the swelling. He doesn’t think that it’s related to my brain swelling but said to take Claritan daily, starting a few days before I go to the mountains, and see if that keeps the facial swelling away. I’m supposed to touch base with them after my next trip to let them know if the Claritan worked.
IF my swelling has nothing to do with GK or the residual swelling I have in my brain, I am at a complete loss as to what might be causing it. :frowning: