Wow! U should be a writer. That was an awesome read. Thanku!! Glad it’s over for u. Waiting IS treacherous.
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Micko, I am only recently diagnosed and my AVM too big for surgery so being referred for Gamma knife surgery. It has all been a bit of a whirlwind and admit that I have been quite anxious about it all. Your description of the procedure has made me feel better about what to expect - thank you. How long did you have to wait from you referral to the actual procedure?
Hi Mel.
I was referred by Oxford Neurology to Royal Hallamshire Hospital Sheffield and had an initial appointment with the Gamma knife team quite quickly after about a month If I recall correctly.
This first appointment was with one of the Gamma Knife consultants and other members of the team. During this visit the options for treatment are explained to you along with any risk factors. It’s then up too you to decide if you want to go ahead. Though you don’t have to make up your mind there and then. Although I did.
A couple of days after I returned home I got an appointment through for 6 weeks later to go and have the treatment done.
The above was my time scale and I am not sure how the knock on effect from Covid is affecting the waiting times for this particular treatment. If it is Sheffield you are being referred too it might be worth contacting them to find out.
Your case sounds very similar to mine, although I knew i had mine for 20 years before it started playing up with focal seizures etc.
I’m now 2years down the line from the Gamma Knife and on Saturday next go to have an MRI scan to see if any changes ie shrinkage (hopefully) has taken place.
Anxiety is par for the course i’m afraid. Most of us have suffered from it to greater or lesser degree, I know I have. |Just try and stay strong think positive and remember all of us on this forum are with you and don’t be afraid to ask us anything. There will always be some one who has been through it.
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If there’s anything you’re bothered about, talk to us about it. I think for me, I worried most about the unknown. Once I’d gone through my treatment (I had embolisation) I knew I could do it a second time if I had to.
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Micko
Not sure if you saw my reply, thought I had emailed to you direct but just getting hang of using forum. I have since been contacted by Queen Sq in London so appointment coming through in next couple of weeks. How did you get on with your review?
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Hi Mel
That’s good news Hopefully your appointment will come through soon. The waiting along with the anxiety is the worst.
I am going later today 26th to Oxford for my MRI so will hopefully have some positive news next week sometime.
Please let us all know how you get on.
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Just had my Gamma knife this week. It was not nearly as bad as I thought it was going to be.
Was pretty worried about the frame being fitted but in all honesty it wasn’t that bad. Feeling a bit tired so taking it easy for now. Everyone at Queen Sq London, were amazing. Now just a waiting game.
@micko, how did you get on with your scan?
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I’m glad you got through it better than you anticipated. Like I say, fear of the unknown is the trouble. I was exactly like you!
Hi Mel,
I also had Gamma Knife at Queens on 22nd April.
I am just wondering how you are feeling now?
I am still feeling a lot of discomfort/headache and parts of my head are still numb, sore.
My AVM is 4cm, Parietal lobe and I had 1hour 40 mins in the Gamma machine.
Best wishes
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Hi Kel, feeling a bit lethargic still but only been 4 days so guess that is to be expected. Felt good yesterday, went shopping and visited family. Feel pretty tired today so think I did too much and need to take it a bit easier for a few more days Mine is right frontal lobe and in gamma machine for just under 2 hours. Back of head is still sore but the front ones feel ok.
Keep us updated, take care
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Hi Mel.
The short answer to your question is I still don’t know I have not heard from the hospital since my scan. In fact I have just written an email to them this morning enquiring about it. So hopefully might hear this week.
My fears about the Gadolinium dye used for the MRI (posted elsewhere on this forum) provoking seizures were unfounded and I was completely fine.
By the way the tiredness is completely normal, I suffered the exact same thing for about a month. I don’t know whether this due to the treatment, the anxiety leading up to the treatment or the whole AVM experience Probably a bit of each.
Just be patient with yourself and let your body and mind heal in their own time, because they will.
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I too had a gamma knife procedure, and at my year 1 & 2 anniversary, there was not much change. However, my year 3 anniversary MRI showed it was 97% gone. The physician said if he didn’t know I had an AVM, he would not have been able to detect it.
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Hello, you didn’t think that placing the halo wasnt too bad? I have had two gammas and the pins were the worst part. The second time, they gave me a squeezie in the form of a doctor. I killed the doc! 
The team tried to go quick, though, and it was over fairly quickly except for the poor squeezie …
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Hi, how did you all find the cerebral angiogram at London ? I have mine soon and I’m extremely nervous. Did you have it in the groin or the wrist?
I understand. Honestly, I think the anticipation of the unknown is worse than the thing itself. Really.
I’ve had three angiograms at Nottingham, all in the groin. One was done as part of my embolization and was under general; the second was under local and it was fine. In terms of inserting the cannula, it was no different than having a cannula fine anywhere else: something to look away from but I was lying flat anyway so couldn’t really see. The process of the angiogram produces different sensations as the contrast material is injected and it affects different organs or parts of your brain. Sometimes creating a brief hot flush or a show of stars or perhaps an odd taste etc but each is very brief – 2 to 5 seconds perhaps?
The least pleasant part is when the equipment is removed and the doctor presses down on the wound while it heals. If in the groin, it is bruised by now and so it is like sometime pressing down hard on a bruise for a few minutes. You’ve had a local anaesthetic but it is starting to wear off by that stage.
My wife had a radial angiogram recently and came back with an inflatable wrist strap which was used to keep the pressure on for a while. Again, you’re a bit bruised and there’s pressure on to help you seal back up nicely. It’s uncomfortable but not dreadful.
I found the angiogram itself fascinating and equally interesting to see the man who did my embolization in his natural setting in theatre. He had an excellent rapport with his team and overall I was very encouraged by how they worked and very interested to see some of the pictures of what they were looking at.
I also found the explanation of what sensation to expect by the consultant very helpful. Honestly, it was a good experience overall.
Hope this helps,
Richard
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Thank you Richard. I’m just scared of what could go wrong as it seems such a difficult and scary procedure to pass it through all your blood vessels!
It’s not risk free but in the same way that you don’t cross the road picturing yourself going under a car, it’s best not to think about the worst that can happen.
I was fascinated. I’m not sure I let the risks of the angiogram bother me at all, but then I was convinced that I had an AVM (DAVF) that was busy getting worse and I was comfortable that it was a risk I had to take to enable mitigation of one that I was definitely worried about: the DAVF.
Maybe the test to help yourself is “Do I NEED this looking at?” If it needs looking at, this is the best way to get the right outcomes further down the line.
I hope something I say might help.
Very best wishes,
Richard
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Thank you Richard, you’ve been through so much and you’re still helping others! I know that nothing will go wrong as they’re so skilled but maybe you’re right, it’s because I’m not sure if I need it! It’s to see if my AVM has gone. It’s no longer on the MRI but I would really like to know that it’s definitely gone! but I don’t want to go through it! I just have to be brave like you and get it over with and then feel amazing when they tell me its gone!
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So… if it helps…
Having the scan will mean you know it’s gone and the docs know it’s gone. If (in the very unhelpful case) it hasn’t gone 100% it might mean that you need a little something doing to keep you safe. That’s why you’re having the scan: to make sure you are safe, not for some curiosity’s sake.
It is important to go and have a look. But you’re the one who needs to make the choice. You’re the one taking the risk. Don’t let me push you where you aren’t comfortable going but that’s how I would look at it.
Very best wishes,
Richard
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I had my follow-up angiogram a few months ago. My first without general anesthsia. They do give you light sedation, but I was aware of what was going on the whole time. It was not bad. They tell you when to “hold your breath, don’t talk and don’t move”. They shoot the dye and watch it. Then they say " ok you can breath. One time they forgot to say I could breath so I had to say " can I breath?". The Fellow says " sorry, I forgot". At one point the Fellow (advanced student neurosurgeon) was having trouble navigating the wire so the doc had to take over. It was around my aorta, in the process of exiting. He had it going right in a few seconds. The worst part is laying flat for 4 hours after. But at 4 hours and 1 minute they let you up and start discharge. Time for food. 
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