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AVM Survivors Network

Anyone with avm cured after 1 year with GammaKnife?


#22

I have some mild daily headaches but nothing that could be potentially swelling caused for several months. I don’t need medication for the headache, its more a strange or different feeling so I’m starting to think it is my new normal.


#23

Hello Rita,

My one year post-surgery mark was September 8th (gamma knife). My surgery was a success and the avm is gone! I worked my butt off and went to rehab for a few months to work on my memory issues (which still isn’t 100% perfect but almost there). I also have occasional numbness on my right arm/hand and leg which is the after-affects of the stroke and may never go away. I also get headaches every once and a while. A small price to pay!
I believe Rehab and a positive outlook really helped me in my recovery process. All the best. Katerina. xo!


#24

Hello! Such amazing news! Congratulations! Can I ask you how you know the numbness is from the original bleeding or from gammaknife?


#25

Thank you! The numbness was caused from the stroke and not from the surgery. It comes and it goes. When I get this “numbness” it feels like I don’t have 100% feeling in my arm,leg or hand. Not so much like pins and needles. Kind of hard to explain.


#26

Don´t need to explain I totally understand that numbness! My question is I already had the burning and pin and needles feeling and my neuro said it was the scar healing and many months after it stopped, but since the radiation is that numbness…thats why I don´t know wich sympthom is from each thing (bleeding or gammaknife)


#27

Which treatment method did you have? (I had endovascular embolization)
And how long ago was your surgery?


#28

Hi! I understood that you had gammaknife as well. I just had gammaknife on 14th of december 2016


#29

Wow! So we’re pretty similar in our cases and similar time frames as well. My surgery was only 3 months before you had yours (September 2016). We’re also very close in age. Let me know if you ever have questions or just need to just chat!


#30

True! Thanks for the support :slight_smile:


#31

Hi there !!

A very relevant question…

Had a AVM bleed n 16th Nov 2018, just about 1 year shy of 18. The size determined by a DSA was 1.3 x 1.2 cm, i don’t know if this is large or small in reference to the average AVM size. Had no alarming symptoms except for nagging migraine kind of headache, which was dismissed by the General physician as a stress headache.

However, after the bleed, the Neurophysician mentioned that all that was due to the AVM. Now last week got the Gamma Knife procedure done with 240 mins of radiations @24 GY.

Looking to be AVM free soon. Dr’s feel that it should be obliterated any where between 6 months to 18 months…

AS of now there is no headache, or even the pin sites don’t cause any mentionable pain…


#32

Hi Eston. I had Gamma Knife in November of 2016, and just found out in February that it is gone, that was following an angio. At the two year mark it was not visible on MRI so not exactly sure when obliteration occurred. Somewhere in there! Great to hear how you’re doing so far. I had a bit of trouble with the wait but as time went by the waiting became far more tolerable. Take Care and make sure you let us know how you’re doing along the way. John


#33

Hi! I also only discovered a week ago that my avm was gone! 2 years and 2 months after gammaknife… 240min of radiation is a lot compared to my 14minutes! But if your neuro said that time frame is good, at one point another neuro told me 4 years because its the point where radiation “stops”. Just be happy your count down has started its a difficult mindset but we have to think like that… Each day at night think that gammaknife did a bit more of her job :slight_smile:


#34

Hello Rita F,

If i may ask, how many days did it take for the frame pin area pain to go away, was the area surrounding the pin having a tender feeling at times???

rgds


#35

Hi! I dont remember having any problems with that… So I cant really help you on this one…