AVM Dilemma
In two days time I am about to go for a gamma knife procedure to treat my AVM which has never bled. I have spoken to three specialists and the verdict is coming down on the side of getting it treated.
My gut feel initially told me to get it treated as well but some new information has come to light which is seriously concerning me. I will explain how I have arrived at my decision points to date and why I now feel like a condemned man but armed with some information that may or may not help. Hopefully, someone out there may have some further insight so please excuse the length of this post.
My Diagnosis
AVM never bled. Located towards the back of the brain on the left side - (sulcal small left occipital AVM with no parenchymal changes in keeping with no bleeding history). Located not far from the visual areas. They think there is a small aneurysm on the blood vessel but this is not that clear from the MRI or angiogram results. They describe this as a small intra-nidal aneurysm. My AVM is just less than 3cm and graded between 1-2.
How Did I Find Out About My AVM If It Has Never Bled?
I am 53 years old and from around the age of nine I can remember always having strange sensations in my head and constant itching on the left side of my scalp. I used to try and read medical books to see if I could find any information because initial visits to the doctor revealed nothing. This has continued right into adulthood.
After several years of talking to my doctor about itching scalp and quite recently headaches I finally pushed harder when I received an electric shock behind my eye when I was driving. It was so painful I pulled over until the pain subsided. I wear contact lens so went to the opticians and got checked out but they could not find anything and referred me back to my doctor.
My doctor could not find anything and tried to politely tell me not to worry. I told them I wanted a brain scan and they said no - they could not medically justify this. This led to a big argument and showdown with my GP. They were more concerned about their professional reputation and what to say in a referral to the radiologists. I stood my ground and said I would get a private scan and slam the results on their desk if any abnormalities were found and wrote an A4 page complaint letter. They gave in and the diagnosis was confirmed.
How Do You Decide What Do About An AVM That Has Never Bled?
Basically there are people out there who have AVMs that have never bled so what do you do about it? The risk of a bleed is said to run at between 2-3% year on year. Iâve seen other figures that differ slightly but this will do for now.
My consultation with Dr Mario Teo at Bristol Southmead was excellent in the way they explained everything and presented the options for me. My initial reaction from all the advice given was to do nothing until I came to terms with my condition and went away to do my own research. A follow-up consultation was subsequently booked for me.
Mr. Teo in my consultation mentioned the gamma knife procedure as a viable option. Research uncovered the fact that Sheffield Hallamshire Hospital are one of the leading centres of excellence in the world for Sterotactic Radio Surgery (SRS) where they opt for the gamma knife procedure. I asked my consultant to make a referral for me which he did.
At Sheffield neuro unit I met Mr John Yianni - Consultant Neurosurgeon. I managed to find the magic formula I wanted to discuss with Mr Yianni to help me decide what to do. Basically, how do I calculate the actual risk of my AVM bleeding or ultimately killing me?
The formula I found is this. The overall risk of rupture in a patientâs lifetime is 105 minus your age. So, for me at 53 years old, my lifetime risk of rupture is now running at 52 percent. However, Mr Yianni informed me that the fact that I have an intra-nidal aneurysm associated with my AVM this percentage is higher - it could be at 60 percent risk. Aneurysms associated with AVMs are apparently different from other aneurysms you hear about but still pose a significant risk.
So what do I do and What Are the Risks?
Mr Yianni said that if I was 74 and my AVM still hadnât bled then maybe they would lean towards not doing anything about it. At 53, his opinion is that it would be wise to go ahead. I discussed this with Mr Teo in Bristol and his view is that based on my diagnosis it is a âglass full or half emptyâ discussion based on my attitude to risk. Can I live with this thing in my head knowing the risks?
The next key question for me then was what are the risks of going ahead with the gamma knife procedure?
From everything I am being told my AVM and the approach to treating it is straight forward via the gamma knife procedure - thatâs Mr Yianniâs comments. Apparently the risks are low. It works very well, but works gradually. MRI / angiograms over the next 2-3 years to assess the success of the operation.
The risks that have been explained to me include lesions occurring - 1-2% risk; because of where my AVM is - on the left side close to the visual area of the brain, then the vision on my right side could be impaired. These side effects are likely to be temporary and could take months to appear up to six months and just as long to disappear. The risks are created by swelling, oedema / necrosis are the terms used for the cause of the inflammation. They are however seeing less and less of this necrosis because of changes in treatment procedure and less radiation being used. A short course of steroids would be prescribed if this occurred.
Chances are it may not happen but itâs still a risk. The actually defect that could develop is called a visual patch defect where you lose a small part of your visual world. Speech and sensory defects are a small theoretical risk as well but likely to be temporary. One can also suffer a seizure but Mr Yianni said that this has not happened in the past. Apparently the Sheffield unit has treated more AVMs than any other centre in the world so the statistics they have is strong data. I will show you the break down shortly.
There is a risk also that you make get headaches. There is a one month driving restriction after the gamma knife procedure. Risk of bleeding after the treatment does not go until the AVM has actually gone. Hence this is likely to be after a couple of years. Once the AVM has gone it is not likely to come back. The risk reduces over time.
In summary on risks, I came away from my consultation with Mr Yianni saying that the overall risks associated with surgery when considering all mentioned above is around 2% compared with my 52% risk of an AVM bleed.
Happy days one would say, go ahead and remove the AVM! Only a few days of tiredness after surgery and I can go back to swimming, playing football etc. Hence, this is what I have decided and will be going under the knife in 2 days time but I am felling like a condemned man despite talking to three experts who say itâs a good decision to go ahead.
[ content redacted by Seenie of Moderator Support pending review ]
In summary, I hope you can see the dilemma in making a decision about whether to have an operation or not. I am going to keep my appointment because I am going to be having detailed scans combined with discussion on the day and will put all this to the consultants. If I have any doubts or negative feelings then I will walk away.
Thank you for reading if you have got this far.