First of all I just wanted to say how great it is to have found this site. Before my AVM was discovered in November 2020 I had no idea what an AVM was. It’s great fo find a site that explains everything to do with AVM’s and to have a support network where others can share their experiences.
I’d like to share my experience so far and also get the views of those who have been through a similar situation. I’m now at the stage where I have treatment options but not sure what to do.
I’m 37, a graphic designer from London. I have a history of long term depression and anxiety. Up until my AVM was discovered I’ve lived a normal life. I’ve traveled, scuba dived on several occasions and enjoy running and lifting weights. I’m not sure if my AVM has ever bled but in my teenage years I suffered from frequent headaches and migraines.
How my AVM was discovered
In October of 2020 I was under a lot of stress with work and personal issues. I was doing a stint of sleepless work nights and my blood pressure was sky high. For some reason I thought it was a good idea to counteract this by going to the gym and upping my weights to my body weight. It was around this period that I started to develop severe tinnitus in my right ear. I’ve always had mild tinnitus but this was something different. I could hear ringing above music and other loud noises. I left it for a week to see if it improved but it didn’t and so I went to an ENT specialist. He found no obvious signs of hearing loss so organised an MRI to look for anything sinister, such as tumours. It was then that my 3.3cm left cerebellum AVM was discovered.
At the time of discovery I thought nothing of it, I did not know what an AVM was, nor did I understand the risks. I certainly had not experienced any obvious symptoms from the AVM and was told my AVM was not a cause of my tinnitus.
Neurosurgeon consultation and angiogram
It was only when I spoke to a neurosurgeon that the reality of it sunk in and I was made aware of the risks. In January of 2021 I had an angiogram to determine the state of the AVM and to see what procedures I’d be a candidate for. I’m not sure how many of you have had an angiogram but I was told it would be painless. I actually found it quite painful and felt the needled being pushed into my femoral artery, even feeling the tube being threaded past my stomach, which the radiologist said was very unusual. It was not a pleasant experience.
I’ve been told my AVM shows no signs of recent bleeding but that it has likely caused the tinnitus, although there is no evidence of this from the angiogram. I have three treatment options available to me, including surgery, gamma knife and embolisation. Each have different success rates and risks associated with them. I now need to decide which option to go for, weighing up the risks, recovery time and success rate. Here is what my neurosurgeon has told me:
Success rate: 98%
Recovery time: 2 - 3 months
Risks: Risk to life (circa 1%) and a 5% overall risk including infection, post-operative clot, stroke and co-ordination problems.
Success rate: A divided opinion with a 50% and 90% chance of total obliteration with one treatment.
Recovery time: 1 month
Risks: Small risk to life (circa 1%) and a risk of stroke, co-ordination problems, haemorrhage, incomplete treatment and groin haematoma.
Success rate: up to 4 years to have its full effect. At 4 years 76% chance of obliteration.
Recovery time: 1 day
Short-term risks: Headache, lethargy and hair loss.
Medium-term risks: Radiation necrosis and cerebral oedema
Long-term risks: Stroke and tumour formation.
I’ve been told that I have a 2-3% chance of a bleed anually and that because of the location of my AVM a medium or large volume bleed s likely to have a poor/incomplete recovery. This means I will likely be fully paralysed, in a vegetative state or dead. My neurosurgeon goes on to say “on the other hand there is a chance he could live a normal life without treatment and never experience a bleed”. I’ve also been told that removal of the AVM may not resolve my tinnitus which is now in both ears and extremely loud, to the point I am losing sleep and having trouble concentrating. It really is starting to take over my life and affect my day to day activities.
As you can see none of the options above are great. I’ve been left to make a decision, a very difficult decision. I think for me Gamma Knife is not an option as I don’t like the idea of getting a brain tumour but on the other hand a 1% risk of death for embolisation and surgery still seems quite high. If I do nothing I’ve been told I have a 2-3% chance of a bleed each year which is highly likely to result in death.
At this stage I really do not know what to do. Any views or opinions on the information above would be much appreciated.