Well here I am almost a year since my AVM was diagnosed. In November 2023 I had an angiogram to get precise information regarding size etc. The important finding were as below
There is a small left basal temporal AVM.
Nidus: compact, approx. 15 mm max AP diameter
Arterial supply: left basal anterior temporal branch (PCA)
Venous drainage: basal temporal vein to lateral aspect of left transverse
sinus
SM grade: 1
SM + supplementary grade: 5
I know I’m lucky that the size is pretty miniscule compared to some of you. Nothing else happened until February when I had an appointment with a Neurosurgeon at Addenbrookes. I told him I was aware of the treatments available and that in my opinion, my age being almost 69, I would really prefer (if possible) to have the craniotomy so I would at least know everything is gone, I think the wait with SRS would drive me nuts. He informed me that the risks of significant complications with craniotomy would be in the order of 3-5%, including death or permanent disability, incomplete resection, seizures, and wound problems such as infection. Although I had voiced my preference for surgery the outcome of the meeting was for me to consider the other option of SRS and I would hear from him in ‘a couple of weeks’. This turned out to be 2 months, a telephone appointment on 15th April resulted in me basically feeling I was being pushed towards the SRS option. In the end I felt pressured and agreed to be contacted by someone at Sheffield who could go through the process with me and address any misgivings I may have.
Here I am now, only 4 days after the phone appointment and I’ve spent every waking minute thinking about whether I may as well just accept something I don’t really want, or even to just let it go and have nothing done (although the surgeon did say this wasn’t really an option as I’d had a seizure.)
I just wanted (and needed) to get this off my chest, I’ve discussed it all with my husband but he just says I need to say no to the SRS and stick to my guns.
Thanks to everyone here for being so helpful and understanding, it really has been a blessing.
Hi. Did the doc give different percentages for the radiotherapy? It does sound to me as though they’re not pushing you towards radiotherapy so much as pushing you away from a craniotomy (and I’d expect that to be because they are concerned about those side effects).
Hi Richard. As far as I can recall, at both the face to face appointment and the telephone one, no percentages were given for the radiotherapy, I was just told that there could be temporary after effects which included headaches, swelling, seizures plus a small risk of hemorrhage in the period between treatment and follow up. The one major thing which I’m not happy with is the waiting period to find out if the AVM is gone if I go down this route. I fully understand what you’re saying about them being more concerned about a craniotomy and can see why they would try to dissuade me from that. I guess I’ll just have to see what information I get when they contact me from Sheffield.
What I was wondering is if there’s a strong clue in those percentages. Basically, if the risks of something bad happening are similar by either route, then your own preference definitely plays in. If there’s a strong difference in the risks by either route, then you can see more easily why the docs appear to favour one over the other.
At least, this is the way my mind would work.
It sounds very sensible to talk to the Sheffield team first and make your mind up. I have the people at the Royal Hallamshire down as the best of the best as well, so you’ll be in good hands.
Good luck whichever way you go (I completely understand the desire to get it sorted). We’ll always be keen to know how you get on.
Just a little update. Yesterday I had a telephone appointment with a Neurovascular CNP at Addenbrookes and am relieved to now be officially on the waiting list for a craniotomy. Hopefully, barring delays, this should be within the next 3 months or so. I will have to go to Addenbrookes beforehand to have blood tests (for the anaesthetist) and possibly another scan. I feel I have now stepped onto the conveyer belt and am moving forward to a conclusion. Watch this space!
I chose to do surgery to as waiting years for a result with the gamma knife would drive me in sane im worried about the procedure but also cant wait to have it has anyone had surgery at salford hospital in manchester? Or had the surgery? How was the recovery?
Hi Lisajane, thank you for the good wishes. I had my pre-op assessment at Addenbrookes last Friday and will be having my craniotomy 4 days from now (providing it doesn’t get cancelled.) I’ll post an update when I’m able to after surgery. If I’m not in a fit state beforehand I hope all goes well for you too. Take care.
It seems I spoke too soon. We arrived at Addenbrookes at 7am on Friday as instructed and were told to wait in the day room. Apparently I was number 2 on the list and was scheduled for surgery at 12:45 but there had been an emergency admission on Thursday night so there was a chance of cancellation depending on how long the previous 2 surgeries took. At around 3:25 my surgeon came to give me the bad news that my surgery was cancelled, he was very apologetic and I fully understood that as Addenbrookes is a major trauma centre this was always going to be a possibility. I am now waiting for another date (probably going to be sometime in September or October.) Until then I’ll just keep on with the Lamotrigine and hope things don’t deteriorate. Ho hum
The way I looked upon the interminable waiting was that other people who were in imminent danger were being looked after. Lets hope that whoever was in surgery on Friday afternoon got through well.
I also worried about what the hell was going on with my own AVM while I was waiting for a date, so I completely understand the worry of delay!
Finally on Tuesday I had my craniotomy and strangely enough I felt quite well after I was taken to one of the neurology wards. I was taking quite a lot of painkillers and had a pretty good night’s sleep even though some poor lady was snoring like a drain. The next morning the surgeons came to see me and said I would have an angiogram to check if everything had gone, and thankfully I was clear. I came home yesterday and found I had some speech problems but I’m hoping it will just be until my brain is recovered from the trauma. The pain is bad but I guess that is something I have to put up with.
I’d say make sure to take the paracetamol or whatever the doc has suggested for pain relief! Just because you’re home doesn’t mean everything has settled down yet, so taking some pain meds while everything is busy being swollen is important.
Well done though! It’s good to know you got there, got it done and are out the other side!
Thank you Richard, I’m coping a lot better with the co-codamol. I have around 14 clips which will be coming out next week so I think that will help too.
I am sure I was on the paracetamol for at least a couple of weeks but less than a month. I “only” had an embolization but I assume there was plenty of getting upset going on in there with the foreign glue and the solvent, so don’t deny yourself the painkillers but I’d say do test occasionally whether you still need them. Obviously, it is much better to move off the co-codamol to paracetamol whenever you can.
Good luck with a full recovery. Do share how you get on because it is helpful for others approaching the same challenge.
Aww glad you had it done and hope your recovery is going well i had my surgery on 26th sept and am how over 4 weeks in to my recovery i have not had a follow up scan yet to give me the all clear but im sure it will be ok i lost feeling in my foot on and off for the first 2 weeks but all seems to have settled it was tough but weve done it i also had 40 clips which have all been removed and scar is healing well
I’m very happy to hear that you too are doing well after a hiccup with your foot. I should be having a follow up I think but I’m not too sure seeing as I already had the angiogram and it showed everything was gone. If I don’t hear anything by the end of next week I’ll contact the surgeon’s secretary and ask her to check, she was very good when I spoke to her before. 40 clips is a lot, it makes my few seem like a walk in the park. I was actually amazed how painless it was having them removed, the wound is healing well, itchy but that’s all good. I’m still having to sleep in positions which I don’t really like but sitting in my chair and having a nap in the afternoon keeps me topped up on sleep. We certainly have done it and I hope we both can put it behind us and get back to living normally, all the best for the future.
Yes I’m looking forward to be told it’s all gone fingers crossed but this morning was the first time in 5 weeks iv woke up with no head ache so a little celebration and yes the itchiness I have had some hair lose to but thing that’s just the stress my body went through but is looking like it’s growing back glad your on the mend I’m so thankful for being able to have an option and I thank god everyday that I can get back to being a mum good luck in the rest of your recovery x
Hi everyone, it’s been nearly 4 months since my surgery so I thought I would just do a quick update. I had a telephone follow up with one of the Neurology clinic staff and the questions I had were all answered positively. I was slightly concerned that I was still getting a fair amount of pain on my scar but she assured me that it would just be the nerves recovering from the trauma of surgery.
I still have some numbness around the top of my head above the scar but I was told this should hopefully go with time but could possibly be permanent, if it is then it’s a small price to pay for being cured. So, all in all things are pretty good, the only thing I’m waiting for now is to see the Neurologist who prescribed the anti seizure meds, as I want to know if I can stop taking them. I’m hoping that I haven’t been left with epilepsy but I guess there is no way of knowing unless I can stop the Lamotrigine. Occasionally I have to think of a word that I should automatically know but it’s not a problem.
That’s my story up to now, best wishes to everyone who is still on their journey. Take care.
i also had 40 clips which have all been removed and scar is healing well
but this morning was the first time in 5 weeks iv woke up with no head ache so a little celebration and yes the itchiness I have had some hair lose to but thing that’s just the stress my body went through but is looking like it’s growing back glad your on the mend I’m so thankful for being able to have an option and I thank god everyday that I can get back to being a mum