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AVM Survivors Network

Anyone with avm cured after 1 year with GammaKnife?


#1

Hello all!
On the 14 of December I will make one year I had GammaKnife! I just cant believe I´m already at that mark (of course with lot of phisio, pain, anxiety , sadness and so many more that we all are aware) Sometimes I dream that I can already be cured and not knowing about it! Does anyone here was considered off danger after only 1 year?
Thanks for the replies!


Post gamma knife
#2

Rita, I hit the 1 year mark next Thursday, November 9th, and go for my first post gamma MRI on the 18th. I know exactly what you’re saying! My research, being the google expert, says maybe…if we were kids it would be quite likely, seems as we get older the time lengthens, and size also counts. Mine is small, my neuro is hoping that based on the MRI, next step will be an angio in 6 to 8 months. That is the ideal, next best another MRI down the road third option is another dose of gamma. I guess that a long way to say maybe! Take Care, John.


#3

At one year, I was still going for MRIs. My brain AVM was swelling, which was considered normal. It took four years before I found out that the main part was gone, only to be told that two smaller problems still remained (each 0.5 mm by 2 mm in size). So it was about nine years post-bleed before everything was gone. (I needed the Gamma Knife twice)

I don’t think age made a huge difference… I was not quite 11 when I had my first Gamma Knife, and 16 for the second one.


#4

Rita:

At the 2-1/2 year mark, my doctors kept saying “we don’t see it” on the MRI’s or MRA’s. I was elated! In August, 2017, I had what I had hoped was my last Angiogram. The results were that my AVM had decreased in size from 4cm to 2cm. It ain’t gone, but it is half of its original size. I was a little disappointed; had a 5 minute pity-party; kicked myself in the ass; and then I thanked God for the good news that the monster is smaller. I am scheduled for my second Gamma Knife Radiation procedure in April, 2018. My first was in April, 2015. I am so ready to begin the second 3-year phase of my AVM journey. I’m still Praying and I’m still Patient. God is so good!

Sharon D…


#5

Mine is really small, I only got 14 minutes of radiation! Give me news about the MRI, let´s dream it can be gone by now :slight_smile:


AVM on the right parietal lobe abutting the primary sensory strip at the frontopsrirtal junction
#6

I was a 24 minute treatment, and yes hoping for the best! Thanks Sharon, I’ll be waiting the angio for sure! My doc said even if he doesn’t see it on the MRI he’ll wait another 6 to 8 months before angio. I’ll certainly update after the follow u appointment which I hope would be within a few weeks. Take Care, John


#7

My one year anniversary is December 15. I had 125 minutes. I was told it may be three years. There was no change at 6 months. Maybe a 14 min procedure can be healed in 1 year. Good luck.


#8

What did your neurosurgeon say? It depends on the size and location of your AVM. It’s been 2yrs since my last gamma knife. I went for the gamma knife 3 times. Last time I went for an MRI I was told the avm went down in size. Just make sure the next time you see your neurosurgeon to ask questions!


#9

I had the same question at that stage - everyone said it sometimes takes just 1 year (3 baing the average) and it’s healed, but how many people really have it like that?..my Gamma knife took some 30 minutes, my AVM being 3,5 cm. I had my one year check-up this March and they said it’s getting smaller and so we don’t need to treat it again and can just wait some more…March 2018 is the next big mark in my calendar and I’m really hopeful…but yeah, basically the same question - how many of you guys were told it’s all good after 2 years?


#10

Three years since my gamma knife and mri two weeks ago showed the avm almost undetecable so it sound like good news. An angiogram which I hate as they have a slight risk , will be the final step to make sure it’s gone. To all the previous posts on this thread, my thoughts and prayers are with you.


#11

A 1 year healing seems unlikely in my experience. 2012 was my gamma knife surgery, following suffering a brain haemerrhage, courtesy of my AVM (occipital area).
2014 was my 2 year angiogram, and was advised it had not shrunk very much at all, and they also predicted it would not be gone at the 4 year point.so…in 2015 (at the 3 year point) I had my second dose of gamma knife surgery at Sheffield UK.
2017 , I’m recently back from my 5 year angiogram Test, which I’m delighted to say, has completely obliterated my AVM! Who hoo! Praise be to God for keeping me safe to this point.
It’s great to still be alive and kicking. I hope you have similar success with your next angiogram test.
SmilerDi


#12

My 1 year mark will be start of Jan. I am not cured yet. June 2017 I suffered a 2nd bleed and am still recovering, I’m just praying it has been caught the first time and I’m just unlucky for this to have happened. I don’t know how big my AVM is, though it took 2 hours 40mins of radio and it’s in my cerebellum… I was informed that it is an unusual shape which is why is was a long sssion. I believe this will pass but length of time I don’t know… I am currently dealing with stroke like symptoms, it’s beyond frustrating… I hope you have no problems with yours, like I have. All the best Xx


#14

Juan,

It would be good if you fancy starting your own topic and tell us a bit more about your AVM.

From what I’ve read, an AVM in the Occipital lobe would threaten your eye-sight, though most of the cases I’ve read about on here, people have had issues with their peripheral vision. I’m not sure I’ve read of people losing central vision. Though, if people have got an issue with their central vision, an online written blog type of forum would be very difficult to access, so that could be a reason for not reading so many cases here.

Very best wishes

Richard


#15

Hi :slight_smile: Any news on 1 year MRI?


#16

No news yet for me, I have an appointment next Tuesday with my nurse practitioner and awaiting a call from neuro. The waiting actually doesn’t bother me anymore, I know in the best case it will be a while before angio. Thanks, John.


#17

Just did my 1 year MRI :slight_smile: They used contrast and in yours? I only have an appointment in middle of January but as soon as I get the results I will try to speak with my neuro :stuck_out_tongue:


#18

Yes they used contrast in mine. I have an appointment today but not with neuro, haven’t heard from them yet. I’ll reach out after I see what today brings, if anything. I’m hoping the results are there, and should be.
Thanks and Take Care, John.


#19

Didn’t know you were in today, John. Good luck!!


#20

My AVM is not visible on the MRI so pretty much what I expected based on Dr’s assessment on treatment day. So waiting to hear from neuro, I’m assuming that I will have an angio scheduled down the road 6 to 8 months. I still have pulsatile tinnitus so I’m thinking there is still some wonky blood flow there, all in all good news. As most here can appreciate, now I wait…patiently.


#21

I admire your patiente…I m afraid that mine doesn t appear as
well…but something is going on…pain in my right side is worse than
it was before :confused: it didnt appeared on MRI any swelling as well?