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AVM Survivors Network

Cybernife treatment while being a college student

Hello everyone, Im new, and I think this page can be very helpful for me because I am about to start my cyberknife treatment. I am a college student, last semester, my AVM ruptured. The doctors say that i have a complex AVM since it is deep in the brain and its "the size of a lemmon"(4-5 cm in diameter). I will start the Cyberknife treatment soon, which means that I will be in school while my treatmet is taking place. The doctor said that I would need about 5-6 sessions to treat the complete AVM. I would like to know about any sideffects or complications that other people have had while being treated with radiation.

Thanks everyone. Hope to hear a lot of answers.

Hi JPuente. There is a sub-group here you may wish to join…
http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother

Hi!
I too, am a college student. My AVM was discovered when it ruptured at the end of fall 2010 semester. My AVM was treated with several embolizations, and one gamma knife treatment in May of 2011. I did not experience any complications from the Gamma treatment. As my treatment is different from yours, I cannot tell you what you will experience. All I can tell you is that I have kept my medical condition extremely quiet- to the extent that only my parents and doctors know about it. I hav even kept it a secret from my siblings, grandparents, and friends. But on the 2 occasions that I felt my condition affected my schoolwork ( because of a bad headache which prevented me from properly preparing for an exam, and because I missed a class for a doctor's appointment,) I told the basics of my situation to the respective professors. Both professors reacted with an extremely warm and caring attitude. They immediately became understanding and concerned humans, rather than the tough professors I thought they were. Ultimately, everyone will try to do whatever they can to make this process somewhat easier for you as they know how much such a condition impact's your life.

All the best!
-Birdie

Hi JPuente and welcome - so glad that you found this site!!! You come to the right place for support and hearing about other people's treatment and possible side effects. Yet please do keep in mind that each and every AVM is unique in their own way and people's reaction to the treatments are also that way -- just like there are no 2 snowflakes alike, there are no 2 AVMs that are alike either. However, hearing about other people's experience and side effect with the treatments does certainly prepare us for what may or may not be the case with our treatment but this does provide you with insight which we didn't have before life with an AVM. I had CyberKnife treatment back in June of this year to treat the residual AVM thas was left after I had an emergency embolization back in February when my AVM, which I didn't even know existed, ruptured. I'm happy to share with you that My experience with the Cyberknife treatment has been uneventful and the only side effects I have had was a bit of hair loss (which can be remedied very easily with clip-on extensions for us gals) and extreme fatigue following the treatment which lasted for about a month then I started to get my energy back. So, all in all, it has gone very smootly for me yet I also needed only 1 treatment so far as the residual AVM is so small and just have to be patient and wait and see how this is working to destroy this creature. Please feel free to send me an email if you'd like to ask more specific questions about my Cyberknife treatment.

Good luck to you with your treatmaent and please be sure to keep us posted as we will all be thinking and praying for you. Happy Holidays to you too!

/Michele

Welcome and glad you are getting some questions answered.

I would highly encourage those of you in college to go to the "Students with Disabilities" office, or whatever it is called at your college. Our son had seizures beginning in middle school and we were still fighting them when he was in college. (not AVM related, but that's another story).

He went to the KU (Go JAYHAWKS!) student office of disabilities. They were WONDERFUL. His seizures were 'zone out' type seizure and could present like a kid high on drugs--the thousand meter stare, not responsive, even though he would look at you when you spoke. Just what you don't need when trying to do well in school, to have a seizure like this and your prof thinks your some druggy............

Anyway, they took his information and processed it. Not sure whether he gave the info to his teachers or the office did. Basically, he could have the use of a tutor/scribe that would go take notes in his classes with him, and help in study. A different tutor for most classes--ones that were majors in that area.

It gave him a free pass to walk out of a test, or not to even start one if he was having or had recently had a seizure. They would give him extra time to finish if needed.

And I haven't yet mentioned: ALL THAT WAS FREE!!!!!!!!!!!!!!!!!!!!!!!!!!!

I would encourage you to check that out and take full advantage of it. You got enough to deal with having an AVM.

OH, I'd also make sure your roomies / RA knows of your condition, and how to help you if you seize.

Best wishes,
Ron, KS

Hi JPuente,
Welcome!
I just want to let you know that I had Cyberknike treatment on Oct 25th 2011. My AVM is located in the back of my head, very close to the vision area. I basically had the choice of having a craniotomy or cyberknife. I was very afraid of both and thier side effects. I had just been through cancer a few months prior (now cancer free!)and triying to take care of my 2 small children.
Cyberknife went really well! A bit of headache the first 2 weeks so I had to be on Dextametosone but apart from that no side effects. Now, I know it's been only 2 months and problems can come up any time, I am very confident that was the best choice for me. There are some nasty comments sometimes and horror stories on this site...be careful. Think positive. Where are you?

Hi, Welcome to the site. I had one session with the cyberknife in 2008 and I had no problems at all.

I am in Texas, and my AVM is being treated at UT Southwestern, one of the best hospitals in Texas, but things are moving too slow. I just want to have to start my treatment soon, so that it does not interfere with school. How many sessions did you have? The doctor said that my AVM may need like 5 or 6 sessions of radiation.

Thank you Jim.

Hi!
I only had one treatment and they don't think i will need more. My AVM is very small (or was!), 2cm.
I'll have an MRI in Feb. to see if it has changed.
I'm in Ottawa, Canada. The health system here is amazing I have to say.
Hope you get good care JPuente. Give me some news.
Happy Holidays!

Thank you! Happy Holidays to you too!

According to the doctors, my AVM is about 4-5 cm in diameter. The doctors say its is considered a big AVM, and that I will need several sessions of Cybernife in order to treat the AVM, but at the same time, I will be in school. I just want to be able to perform well in school while I undergo the treatment.

I had stereotactic radiosurgery as a college student and did not experience any complications after. Although I was very scared and worried more than anything, the process went smoothly. I highly recommend you visit each of your professors and discuss your health condition and upcoming treatments. In my experience, I have never had a professor that was not willing to work with me especially due to medical problems.

Did you have any problems like headaches or any physical problems due to the treatment that prevented you from perfuming well in school?

Thanks for sharing your story with me.

No, I didn't have any problems due to the treatment. What was best is that it was over and taken care of and I could move on and not anticipate all the things that could go wrong.

The side effects of cyberknife treatment, if any, are minimal and usually resolve within 1 or 2 weeks. Most patients are able to resume normal activity after each treatment. This type of surgery is completely painless. There is no incision and no blood loss. Each treatment may take one or two hours and the recovery period is quick. The rate of success is very high. I’m sure your doctor will discuss with you how the surgery will take place and what you can expect. Ask him lots of questions to ease your mind! Good luck!

I had no side effects at all. I was a college student as well when I had radiation treatment.
After I received my bachelors degree I went on to get my masters at an Ivy League school.
I hope this helps. Please feel free to ask any other questions... don't hold back...
we are here for you!