Post gamma knife

Hi everyone. Had gamma knife surgery last May 2017 so will be post treatment at the 1yr stage in 2wks time. Both of my neurosurgeons said that usually there will be no change at such an early stage when I go for my 1st MRI in May.

Therefore I was told that not to be upset if there is no change. However I live in hope that there will be and pray for a miracle that it will have gone for good. Is there anyone that has had the same procedure and had a positive result that their avm had gone in only the space of a year?

I feel so stressed and believe that my health has caused my depression. I just don’t get excited or feel excited about anything anymore and just eat on my emotions.

Be good to hear from you.

Kind regards,

Jason

Don’t stress !! Its out of your hands and the stress just starts a chain reaction, change or no change its a follow up to see where your at, I pray with you that it is gone but if not that doesn’t mean it won’t, just see where your at and then take it from there, one thing at a time, it’s a healing process that takes time, you can help by doing what you can, stay positive, eat healthy, moderate exercise, good sleep and just try to take care of yourself, physically, mentally, emotionally, take care,

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Hi Electrician,

Thank you for your sound advice and for taking the time to answer my post.

I shall do my best to follow your advice. Guess my mental health has been getting the best of me in making me inpatient and making me have very low moods. I shall post again when I know the results in a few weeks time.

Thank you once again as I do appreciate your advice.

Kind regards,

Jason

Jason,

I’m with electrician… this thing demands the patience of Job and that’s quite a thing to live up to. It is perfectly normal to find it really difficult. So just do your best to be ok about it. If it shows some progress in the right direction, have a party. If it isn’t showing any progress just yet, take it as a sign of just how patient and cool you need to be.

Its a heck of a thing to have to be patient for so long but you can do it. Its like a son growing up, maybe. Living with them every day, you hardly notice a change but people who only get to visit a couple of times a year go “Wow! He’s grown up!” You’ve got to wait for each visit and see if the doc can see a change. What you have to believe is that every day is one day towards being better. Its tiny steps and may not always be in a straight line, but you will get there.

I do hope you get a bit of progress but it is early days so don’t be put off.

Hoping the best for you,

Richard

Hey Jason, no problem, unfortunately I understand this AVM thing and your feelings all to well, your basically describing me, you are not alone, O, did I mention this year this my 30th year post surgery ?? I’ve been doing this many years, if there’s one thing I do know its that only avmer’s get avmer’s , hang in there and keep me posted, take care,

Yes, Jason, I have. I had a small AVM in the occipital lobe of my brain. I was told it would take two to three years for my AVM to go away after gamma knife. But MRI/MRAs without contrast taken one year and two weeks after gamma knife found no trace of it. Guess I got lucky in that respect. I go back in July for another round of testing.

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Hi! You remind me of someone at 1year mark…me :slight_smile:

My avm is so small that they can´t see nothing and just with an angiography…that they only wanna do in 2020!

Hi Richard, Thanks for your post. Next Tuesday I go for MRI then RESULTS a week later. Will post again then. Thanks again. Jason

Hi ELECTRICIAN. Thanks for your post. 30yrs my God. Bet it never enters your mind anymore. Do you ever have any further checks? Will post again in two weeks when I get results. Thanks again Jason.

Hi Jvetter, Hope I get lucky too. Will post again in 2wks when I get my results. Thanks again for your reply. Jason

Hi Richard, Thanks for your post. Sorry everyone for delay in responding. I now have a beautiful boarder terrier puppy called DORA who has been keeping me occupied. I will post again in 2wks. Thanks all. Regards Jason

Best wishes, Jason

Hi Jason, thanks for reply, my name is Andrew if you prefer, OMG is right my friend, unfortunately the answer is a big NO, I think of it every second of every day since surgery, this has totally and completely ruled and changed my life forever, 25 to 50 was " OK" I learned my limitations and how to deal with it, more recently, from 50 on, I’m now 54, it has gotten worse, basically a runaway freight train, none of the things I used to do to control it seem to work anymore, I have been living, or trying to, with constant, perpetual head pain for the last 4 + years, I have multiple issues and have really been struggling lately, good days bad days but mostly bad, I only do what I can,when I can, very frustrating, but it is what it is, we are brain surgery survivors and there’s just no getting around it, that’s why I’m here, only avmer’s get avmer’s, take care,

Hi Jason,
It all depends on the size of the AVM, I believe. At my one year check up after the Gamma Knife in 2007, there was some swelling on the AVM, which was normal. In 2011 they finally said that the area they treated had had the AVM removed completely, but two smaller areas that had never been noticed before were discovered. They were treated again in 2012, and three years after that, it was gone. Unfortunately the Gamma Knife always seems to take a long time, but I have had positive results in the end.

Fingers crossed for you, mate. Let us know how you got on in a couple of weeks. Whatever happens, we are all here for each other.

Richard

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Jason, I had gamma knife in November 2016, first MRI in November 2017 and now looking at November 2018 for the next one. I hope your first follow up is a positive experience and look forward to hearing. Take Care, John.

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Hi Jason
I had mine Radiosurgery (almost same as gamma knife) in Feb’15. I was told only 80% chances to cure completely and it indeed need lots of patience to deal with it.

Recently Mar’18 (3 Years ) i went for my angiogram & it show no trace of it.

Please have faith on yourself & everything will go well.

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This is a general posting for this topic, but I found a journal this AM stating:
https://www.worldneurosurgery.org/article/S0â– â– â– â– (97)00441-2/abstract

“If data analysis is limited to the patients who undergo follow-up arteriography, the obliteration rate of AVM radiosurgery is overestimated. The actual 2-year obliteration rate if all data is considered is in the range of 40% rather than the commonly reported 80%. Therefore, treated patients are exposed to the risk of intracerebral hemorrhage for a longer period than previously appreciated. Compulsive long-term follow-up is required to document the true AVM obliteration rate after treatment by radiosurgery.”

So, having seen that, I wonder, even an “obliterated” diagnosis bears followup, am I reading that right? Should it be instead, “sorta obliterated.”

Paul,

The thing I would question here is that the study you’ve found dates back to 1996, more than 20 years ago. My reading of the introductory text is that routine angiography to validate that an AVM was obliterated was not regularly completed back in 1996 and that if you took samples of success from patients who did have follow up angiography, the recorded success rate is about 80% after two years but if you look at the mix of those people who did have later re-scans and those that didn’t, the success of the original treatment drops to about half.

Thus, the conclusion is not to rely on the previously used 80% success assumption, but make sure you check your patient’s AVM obliteration progress over a “long term” which I read as 2-4 years.

I’d say everyone I’ve read about here has follow up scans to check on obliteration, so that finding in 1996 perhaps led to a change in practice whereby all patients treated by radiography have follow up scans.

Does this make sense? It’s what I think it is saying.

Richard