Hi all, new here and looking for some input.
After an MRI for a back issue, an incidental finding of an AMV was discovered on the left side of my brain. I have been advised to have surgery in the hopes of a full removal.
Does anyone have experience of surgery on an AVM in this area, and if so may I ask what your experience has been?
Thanks so much in advance
Jennie
Hi Jennie, and welcome! Our usual greeting here is that its great you found us, too bad you had a reason to look! My AVM was on the inner side of the eft temporal, and fund due to haemorrhage, which was not a great experience. I had two treatment options, craniotomy and gamma knife. Gamma knife was the chosen option due to less risk. It was a tough decision, but I had total faith in my neuro team which sure helped. It was hard to make the decision, but I was at peace with it, often not knowing if the decision is right until after the fact. Take Care, John.
Hi Jennie,
I had an AVM removed from the front left side of my brain. I was asleep during the whole operation.
I have recovered remarkably, a few side effects in the first year were at times broken sleep and some short and long term memory loss, not enough to cause any problems. Also lost the sensation to spice. No doubt I can not eat the hottest food on the planet. Sometimes not a good idea.
But overall, I had a positive experience and and happy to answer any questions you may have. Surgery was my only option because my feed to the AVM was straight and strong. Embolisation would not have been an option.
Wishing you all the best in the world with your surgery.
Oh one more thing, I went for a local point surgery, meaning, they entered and cut into the cranium where the AVM was positioned. They also blended the cut into my frown lines, as opposed to a full ear to ear cut and recovery.
Sending you the best.
Omar
Hi Omar,
thanks so much for responding with your story. As a chef I’m now most worried about losing my sense of taste, not something I was concerned about before!
I’m glad you had surgery and that you are doing well. I’m interested in the comment you made regarding where the craniotomy was done. My neurosurgeon has said the scar cut will be in a parting and so shouldn’t be too obvious, and also from the top to bottom rather than side to side. May I ask why yours was side to side?
thanks,
Jennie
Hi Omar,
also forgot to ask, how was your AVM diagnosed?
Many thanks,
Jennie
Hi Jen,
So my AVM was approx 5mm big and positioned directly above my temple, so by entering there, they could get direct access to it, since it was located just behind the bone in the edge of the brain.
Maybe AVM was an incidental finding. I went complaining of ringing sound( now tinnitus) in my right ear. My GP sent me for an MRI, it was an in that that the radiologist called and said I should be referred to neurosurgery.
Here for you in any way I can.
Kindest,
Omar
Hi Jen,
Just wanted to share these with you. In the MRI, everything in white is dead brain, I had haemorrhaged a few times before finding and removal.
Hi Omar,
My AVM was also an incidental finding after having an MRI for a back issue that actually turned into nothing. Were you aware of the haemorrhages at all?
this is the MRI of my brain. The AVM is most visible on the right side of the bottom image. These are from my feet up so it’s actually on the left side.
Thanks again for all of the info. May I ask where you live and where you had surgery?
Thanks,
Jennie
Hi Jen,
I used to have crippling headaches. They type that would render you unable to even spell your own name. I found out later, that those headaches were in fact haemorrhaging taking place.
I live in London and my surgery was at Charing Cross Hospital. My surgeon was Mr Ramesh Nair. Please do look him up.
Kindest Regards
Omar
Hi Omar,
Thank you, I’ll have a look. The neurosurgeon I have been seeing is Mr Kailaya-Vasan, who also teaches AVM surgery at Kings.
Thanks for all the info, so useful. How do you feel over all after the surgery, and when did you have it?
Thanks,
Jennie
Hi Jen,
To be honest, it was very overwhelming. My ex wife was a hospital doctor and via her I managed to engage with 6 neurosurgeons. It is only while talking to them and then letting them know who my surgeon was did I realise, and was told by them, that I was in the safest pair of hands I could find.
This gave me great comfort, ( my youngest at the time was only 2 and I can’t explain how as an father I felt knowing if anything were to not go in my favour),and it is very important for you to also feel the same to with your surgeon.
Please do not misunderstand me I’m not trying to scare you, I’m just trying to explain to you how I felt, my fears and situation.
I was completely asleep during my surgery, which was nine hours long. My surgery took place in February 2018.
I have recovered incredibly well, I’m very grateful to my surgeon, there are some side effects, but I can live with them and accept them.
Wishing you the very best on your journey, here to help in any way that I can.
Omar
