Hi there it’s me again. So I have been doing great since my embolization that got 98 percent of my avm.
I’m having a video call with a Dr tomorrow who specializes in Gamna Knife for the last 2 veins left.
I’m really not to thrilled on doing this. My Dr told my husband he was not concerned with those veins but wants me to have this done???
I need some time I have had 3 procedures since February my last being in August when he tried to embolize the last 2 veins and can’t because of where they are located and they are very small.
Has anyone just left it alone with 98 percent being gone . Also has anyone had gamma knife and what side effects of any. I mentally need to be healthy and I need some time .
Yes! Hey @Chloe ! I’ve had gamma knife on 3 separate occasions. It has been by far the niftiest and most comfortable surgery to date. Now I can’t speak for your specific case, but you will do great.
The video is from UVA but gives you a good idea. I hope you have a successful surgery!
I just got off a video call with the DR I do have to have it done . It’s very small what is left so one treatment should do it .
I am extremely claustrophobic how is this procedure I saw videos and it looks awful. Not pain wise but being put into a tube . I’m so scared once again and I’m so afraid of side effects. Do people really have seizures sometimes and headaches. I just got over having headaches my whole life after the embolization. Anyone who has had this I would love some feedback. Thanks again
I’ll let some of the gamma knife people say how they found it (I’ve had the embolisation, like you). I get the impression that by far the least pleasant part is fitting the frame, which is quite uncomfortable. But I also think it is a lot quicker and less fuss than the time you spend in for an embolisation. You’ll be in and out in the same day and the actual procedure is more often measured in minutes than hours, I think.
There can be side effects, including getting headaches but I don’t think that’s immediately post op. I think I’ve seen people getting most side effects at about six months post op, as things start to change. However, I do believe that if you leave a bit of the AVM, whatever residue you have can grow and become a risk to you again, so much better to get it 100% and then just put it behind you.
Thought no 2. I’m sure you can tell them about your concerns re claustrophobia and they may sedate you for the session.
Any ideas when? I’m assuming you’ll be in a queue for a few months yet.
Thank you I will definitely discuss my claustrophobic
Issues. And yes I have had 2 angio sand an embolization so I don’t think this can be any worse and like you said it’s probably minutes not hours.
And I only have 2 very small veins left so I will definitely be going in a. Couple months . I just needed to have a short time for a reset have had 3 procedures since February last one in August.
Thank you for the help
I’m hoping you get a bit more relaxed about it while you wait. I understood that you were finding the constant in/out of hospital a bit much so I hope the slight lull before the gamma works in your favour. I’d definitely think of it like that.
And the gamma doesn’t change things overnight like an embolisation: it’s a much more gradual thing, so unlikely you’ll be rushed into more change… it’ll be more evolutionary than revolutionary.
We are here with you all the way, you know. You’re not alone.
I think it’s the one thing I can do. And to help with bare, written words I think is amazing.
I’ve been through some of this stuff (and I worried like hell about it all) and actually, it doesn’t deserve the amount of worry we attach to it. Sure, brain surgery is as scary as it gets but the ability of doctors to look at what’s going on, decide what to do and do it (and do it successfully) is the best today that it’s ever been. I mostly feel lucky to live when we do.
If I can help a little, it is my greatest pleasure to help and taking off some of the worry has to help a bit.
My pleasure. And thank you for your lovely words: really helpful to me, too.
Hi Chloe. I saw your post this morning but have been going all day with work, been one of those long ones. Just having a bowl of cereal and calling it a night, the brain and body need some down time! I certainly can understand your feelings on gamma after the three procedures. I had one dose of gamma following a bleed and can tell you it was really okay. I’ve had no side effects from the gamma, and the day was really smooth.
As far as being claustrophobic, they certainly offer some assistance to relax. For me the confines were far less than an MRI. I haven’t seen the inside of one of those machines in my 6 or 7 MRIs. I close my eyes and don’t open them until I leave! The uncomfortable part for the gamma was the frame, but they numb the area and once on it is okay. As far as the actual machine, I picked some music and it was relatively relaxing.
I think a huge contributing factor was mindset, just getting it done. I’m a whole lot type A, and the waiting from the bleed to the scans to the decision to the procedure was difficult. I was happy to get on with it. In my opinion, after the three procedures, this will be a walk in the park for you!
The risk of a bleed doesn’t go away until 100% of the AVM has been removed/obliterated/occluded, which is why your Dr recommends further treatment. That your doc isn’t ‘concerned’ by those veins may mean that she sees no adverse features or particular risks, but some risk of bleeding presumably remain until it’s treated. The purpose of gamma knife is to remove the risk of future bleeding.
I had gamma knife at Sheffield two years ago as the only method that could treat my large AVM. Obviously we all want to minimise the treatments and number of different modalities used, but it sounds like you are 90% there and need a small volume GK treatment to finish the job.
My other comment is that I agree you should take time to make any treatment decision, especially as your surgeon isn’t too concerned and you haven’t had a bleed (thanks!!). My surgeon made a strong point of taking my time, as annual bleeding risk is low (even in my case where I had one bleed) whereas any treatment carries risks and those risks are largely up front. Your particular gamma knife risks should be carefully considered and you can read about these if you Google ‘risks of SRS for AVMs’ and try to read more recent studies. Factors like treatment volume, area of the brain and whether you’ve had prior bleeding are major factors in radiation risks. Your surgeon should be able to provide some broad guidance on your risk factors, I believe there is a scale they use to grade SRS risks but can’t remember the name.
Hello thank you for your reply. After your GK did you have any side effects and what were they. The Dr yesterday said that if this last bit goes untreated the avm can come back and there is a risk of bleeding.
So I know I have to have it done but I’m thinking October mentally just starting to feel good. Physically I’m great I bounce back pretty fast .
But I am still concerned about side effects. Any information would be great . I’m a very active and healthy person with 3 teenagers and I want to stay that way . Thank you
In terms of side effects I did feel wiped out for a few weeks and had some face/head aches. My GK team at Sheffield (who are extremely experienced) said that this was unlikely to be radiation related and more likely due to the frame and muscular effects, as well as the fact I’d been through an ordeal with the bleed, treatment decision and the big day. A bit like getting ill right after exams! It may well have been that and I felt a lot better after that reassurance and all symptoms passed within a few weeks. Do not be surprised if you feel rough for a while but rest assured that it passes. There are risks of brain swelling etc which I fortunately didn’t suffer and this tends to appear around 12 weeks post treatment. Again this risk depends on location, dose and treatment volume. For your info I had a 25Gy marginal dose (maximum I believe) and my treatment volume was small at 3cubic CM. Although my right side occipital AVM is large (SM grade 4) the nidus is compact and the interconnection of the vessels was a small area allowing for a low treatment volume. I had GK because my AVM was surgically high risk and embolisation wasn’t a good option due to size of the feeding arteries.
I hope this is helpful, please do feel free to ask any other questions.
Thank you very much. He did say my GK would be very little because my embolization was 98 percent effective. I’m glad to hear you are doing better and thank you so much .
Good to hear from you again - how are you feeling now?
Kinda the boat I was in, until that final angiogram - when they achieved what many can not - 100% obliteration on the 1st shot
From my many visits & conversations with my neurological staff - in my case, “if” complete obliteration was not achieved, they’d go for another embo & then again if they had to - my neurosurgeon’s words “we can do as many as it takes on you” - thankfully, it was a one shot kill - they said I was not a candidate for GK & thankfully they believe that a resect would not be necessary - but, did explain what it would entail
GK like other procedures/surgeries applies to other cases - apparently yours being one of them - it’s all up to the surgeon & the patient’s specific situation
Like mentioned, GK is slow acting - it does work, from what everything I have read & heard - again, in some people
Side effects - well, each procedure/operation type carries its own set of side effects(I’m not even gonna start on those)
Also, how long has it been past your embolization? I cant’t quite recall
Hello it’s has been 3 month since my embolization. And I went in August 5 for another angio and he tried to embolize what was left 2 very small veins and he couldn’t do it .
So he said I would have to have GK I really thought about not doing it . But the Dr I spoke with said that if not completely gone the avm can come back or bleed.
I’m very nervous about the side effects of GK I got through the embolization great and the last angiogram was worse than the embolization. A lot of pain and a migraine for 2 days because he really tried to get through the vein and couldn’t.
But now I have to do this in a couple months and I really hate to do this again I’m so over it .
I just had gamma knife done yesterday. Mine was an hour and 10 minutes. I’m not much help for side effects but the gamma knife tube is less claustrophobic then the MRI. They played music during the procedure. The worse part is having the mask clamped to the table but they said if you get uncomfortable they would let me take a break and continue. I just had some swelling yesterday but feel fine today.
Thank you Matt for the response. I think I’m more concerned about the mask and the tube than the treatment I have a really hard time with that’s stuff.
Even the angiogram was rough because they strap me down . But keep me posted on how you feel .
Take care of yourself
The angio I had done yesterday was through the wrist I didn’t feel it and no pain. The one I had back in march was through the groin hurt for about 4 days. The mask fitting wasn’t bad you feel pressure when they put it on but the pressure feeling goes away shortly after just mainly feels like a weight around your head. The gamma knife has more space then MRI . The gamma knife they let me take a break as needed if uncomfortable, the music helps to make it go by faster.
