I've recently been diagnosed with a spinal AVM following a bleed 1 month ago, which left me paralysed on the RHS of my body. I have since regained some movement in my leg and hand though obviously at this stage I'm still weak. Starting physio next week.
My question concerns treatment to prevent future rebleeds - the team at the hospital I've been in are keen to emobilize the AVM using cyanoacrylate NBCA, a sort of 'glue.' I was wondering if anyone else had undergone this, or other types of emobilization and what your experiences were? I know these procedures can be risky, but then so could a rebleed, so just trying to gather information!
Thanks a lot
Jess, 27, F, London
I had a spinal AVM in my cervical spine from C2 to C7 and I have had embolizations and this is how my AVM was eventually obliterated. I'm not going to lie---depending on how bad and large things are this is not a one time deal and in some cases it doesn't get rid of it completely. Mine was huge and I had several procedures and stents put in my chest to help get rid of it. However, I preferred that than having it cut out. Even though it is scary neurosurgery so were the other options and I would pick embolization again if I had to.
Dear Jessica, sorry to hear about this. Hope you get full recovery. As regards future treatment my suggestion will be as follows:
1. In UK the National Hospital for Neurosurgery and Neurology is very well known. Stefan Brew is one of the top in UK, You should consult with him in case you have not already. He does do glue embolisation and will give you an assessment of how risky it is and whether it will work. For e.g. in my son's case he was reluctant to do this. It is always good to have a doctor who is not trigger happy.
2. In addition there is particle embolisation. For this the best is Prof Houdart in Paris. It is based on our research a much less risky option. However what it does mean is that you may have to go for multiple treatments over the years. We opted for this option because of the associated risks of glue embolisation in his case. Also he was 18 at that stage, had made a full recovery and I was very keen that we take the least additional risk. His email is ■■■■■■■■■■■■■■■■■■■■■■■■■■■■ and you can take my name - Ajit Bhushan. He is very approachable and very prompt and responsive. If you want i am happy to make a recommendation. He also does glue embolisation.
3. In case you want to discuss the above two you can also talk to Dr. Maneesh Patel at Charing Cross Hospital. He is an interventional neuro-radiologist who is familiar with the various options in UK and has also trained under Prof Houdart so knows what he does. Maneesh had recommended Prof Houdart to us. Again you can say that I referred.
4. Finally if you want another perspective I would suggest Dr. Alejandro Bernstein at the Center for Endovascular Surgery at Beth Israel in New York and Dr. Spetzler at Barrow Institute in Phoenix. Dr Spetzler is the preeminent neurosurgeon in the field globally.
I am suggesting this because what we found is that in most cases the doctors recommend what they are most familiar with and it is up to us to weigh up the pros and cons of the different options including doing something. This if you are not knowledgable, as we were not, is quite complicated. Also based on my experience all of the above were approachable and were willing to look at the images and reports and give their initial feedback long distance and without cost.
Finally if you know a neurosurgeon at a personal level it is quite useful to have him quarterback it for you.
Of the above if there was only one thing I could do it would be to get in touch with Prof Houdart and see what he says.
I agree with Erilink9. risk assessment is key and we came to a similar conclusion.
I had a spinal AVM at the T6 level, which was diagnosed in 2007 after years of worsening symptoms. I first had the AVM embolized, which worked for a couple months, but then the AVM recruited a new feeder vein and I was worse off than before. When I lost the ability to stand upright, I returned to the hospital, and had the AVM surgically removed. It hasn't returned, thank God, and I actually regained the ability to walk, but I was left with a neurological deficit and pretty much am in constant pain from the waist down. From what I understand, the worse you get, the harder it is to come back, so it's probably a good idea to take care of the AVM one way or another pretty quickly. If I had it to do over again, I would have had the surgery first, but I took a chance on embolization, which was supposedly less invasive (7 hours on the table, though) and lost the bet. My best advice is to do your research and talk to many doctors and surgeons but slay the beast as soon as medically possible. That's what I've learned from my own situation.
Good luck and God speed.
Embolization was the first treatment plan advised for me. It is way less invasive and a good option. When they went to do mine, they could not actually reach the area they needed, therefore we went to plan B and had surgery. Good luck and best wishes.
Thank you very much, this has been extremely useful!
Thanks, best wishes to you to!
My mother-in-law had a spinal AVF, which was treated 4 years ago with embolization via lazer. I recall that one doctor did 2 angiograms to explore and see whether embolization using glue would be possible. In the end, he decided that it would be too risky. He was afraid that the glue might "spread" to one of the main arteries that supplies blood to the spine and cause paralysis. I want to emphasize that this was a decision based on the location of her AVF, so I agree with replies here, in which people say that risk assessment is crucial. My mother-in-law hasn't had another incident since this embolization four years ago. It's very difficult to know which treatment to opt for, so if you can afford to take the time to consider different options, like what Ab has posted (very helpful indeed!) and then decide which is best for you, that's the best. We had to make a decision very quickly at the time for my mother-in-law and that's not always a good thing. Good luck and I hope you make a full recovery!! Rachel