Hello everyone!
So i just learned the location of my AVM and the more i google search the more I worry.
I have a cyberknife scheduled for 15 December.
Anyone here with the same located AVM treated?
I searched but most of the posts are years ago…
Hello again!
I’d say we have more people with a @BrainCerebellum AVM getting treatment these days than we had. It’s definitely one where it can be best left untouched in many cases but I feel there are more people mentioning here that they are having treatment.
Cyber knife is also less common but I think that is to do with the availability of the equipment to do the work: I assume it is a very expensive piece of kit. So far as I know, it does very much the same work as gamma knife radiotherapy. We do have a topic about different types of radiotherapy in our AVM 101 category.
Overall, I think you’ll find plenty of friends worrying about the same things as you who have gone through gamma knife.
I hope you have a good day of it and I hope it improves your Christmas rather than spoil it in any way.
Very best wishes,
Richard
Thank you very much Richard for your response,your words are very comforting ( if I’m saying it correctly)
You’re saying it perfectly!
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I had Gamma knife in 2016, this was after I discovered my AVM as a result of a bleed. I had three options essentially, do nothing and monitor, craniotomy or gamma knife. For me the risk associated to another bleed made my decision craniotomy or GK. The location was difficult to access, inner lobe of the left temporal. In consultation with my neurosurgeon, and I loved the guy, I asked “If it was you, what would you do?” He replied gamma knife, I made my decision on the spot, and was completely at peace with it. I was glad he answered it, some wouldn’t. I knew the risks of the procedure, but more-so in my case of more bleed.
The potential side effects of GK, were far less than further bleeding. We are all individual, however I’m a big believer in being “at peace”, knowing if it was the right decision might never be known. Im not sure this helps but to me, it is about assessing the risk and while nothing with the brain is 100% taking the path that was less risk over my lifetime. Take Care, John.
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Thank you John for your reply…
I agree with you with the options given i prefer risking with the side effects.
All doctors i visited told me that I was very lucky i survived my bleeding so I don’t even consider it leaving it without treatment.Ebolism didn’t work with me due to location.I do trust my neurosurgeon as a person but I have my ups and downs…
I think we all have experienced the ups and downs, and I hope this week you feel comfortable with us. Please know we support you, incredibly difficult decision to make and questioning the “right” decision is normal. There is a lot of truth to the saying that hindsight is 20/20. It sounds like you have your decision, completely normal to question it.
We are similar in assessing the potential side effects of treatment vs. bleed, and it sounds like you have that sorted out which I think is the decision point. It was for me, and was nice to have an option. John
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Thank you truly,it really helps talking to all of you
Hi @bettybo, welcome and I truly hope you get the best treatment possible. This is something that is treatable, options exist.
I had an un ruptured AVM treated last June 2022. Mine was located in the Cerebellum as well, middle right. After extensive exams @ Cleveland Clinic Ohio, my neurosurgeon recommended 2 options: Gamma Knife and Craniotomy.
Because the location permitted it, we went with craniotomy. Of course everything has pros and cons, and three small aneurysms were found in it, which made deciding for craniotomy more certain. Recuperating was not easy, cerebellum controls equilibrium and balance, but after extensive physical therapy, 3 months, I would say most issues subsided.
I know from experience that dealing with diagnosis, options and decisions is very stressful. But thankfully we have options. My only advice is to research your medical team, and if you have doubts you can pivot.
I send you my best wishes and if you have questions I am here for you if I can help.
Best
Francisco
Thank you Francisco
When you say craniotomy made it more certain cause of the aneurysms what do you mean?
Because i also have a small aneurysm but I was told that obliterating the AVM would solve the issue.
I am told that the doctor i chose is the most experienced one here in Greece with cyberknife so I guess I’m good?
After my bleed i was hospitalised for a month couldn’t walk properly and had double vision and dizziness, I’m better now I still have the double vision and little bit of dizziness… I’m not afraid of having any of those symptoms again mostly I’m afraid losing my memory and my ‘logic’ as for 2 weeks after my bleed I have no memory and I was talking a bit crazy.
Sorry maybe I was not clear with the idea. I was given both options of treatment, Gamma Knife and Craniotomy. I had three aneurysms, and the location of the AVM permitted a straightforward plan with craniotomy.
Having said that, Gamma Knife was also an option, so I would suspect both would have worked for me. Mine was un ruptured, and I had no symptoms, it was found on some check ups I decided long ago to do, back home here in Guatemala.
I was told that procedures done in the Cerebellum, when performed well, have high probabilities of success.
I hope I made more sense now. There are more people in this great community that have gone through Gamma Knife, you can find their stories here.
Best
Francisco
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It’s perfectly fine & normal to be concerned in these cases… rest assured the medical experts will determine the best treatment for you!
Please try & be positive at this difficult time as it will help you get through this time much easier… I suffered a bleed with my AVM years back & it is scary but I am here, like so many of us, to tell our survival story & so will you… it is a slow journey but there is light at the end of the tunnel, so please keep us posted & if you have any questions or need support, we are here for you… God bless!
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That’s what I’m counting on, I guess doctors know best…
Tomorrow I have MRI and today I had the first examination (whose name i couldn’t find from Google translate),so maybe I ll have done the cyber knife by wednesday.
Thank you all for your support 
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You are going to be ok! Medicine has come great lengths and thankfully we have treatment options. We can only trust the process and professionals. Please keep us posted.
Take care
Francisco
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Have a good week! If you ever get stuck with translation, just go with whatever it is called in Greek and maybe we can work out the English name.
Remember, we are with you all the way.
Richard
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Good luck with the treatment, my Avm was unknown and caused a year of hospital plus now over 30 years of side effects.
You’re on a rough road now unfortunately but medicine is always improving so hopefully you can stay positive and recover well.
Tim
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A year? @Timb That must be tough…wish you well
The radiation is on Thursday…
MRI and αξονική τομογραφία(the one i couldn’t translate) caused me headaches.I m good now,the doctor said all is good and not to be afraid, crossing fingers! And I ll keep you posted,thank you all!
I’m going to go with CT scan (computerised tomography).
I hope you’ll find Thursday nice and straightforward. I’m sure you’re worrying like any of us do but they will lead you through every step of the day – just like they have so far – and you’ll be fine.
I don’t know if cyber knife treatment requires you to wear a head frame like in gamma knife. I’m guessing it does. Everyone says that’s the least comfortable part of the process (ok, it hurts) but it’s all something that you can get through. If it is very uncomfortable, you should ask about some local pain relief.
Have a good week 
Richard
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Surprised you found it thank you!
Well i don’t worry for the treatment but for the future side effects and generally i guess about the future, even though it’s not certain whether you have an AVM or you don’t…
In CT scan the mask is ‘made’ on you on the spot.
Didn’t bother me much
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