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AVM Survivors Network

Newly diagnosed

Hi, got my first consultation with my neurosurgeon this week and got told the following:
Avm is approx 3-4 cm , not operable due to location ( deep in cerebellum) feels embolisation is also far too risky but will be recommending me for gamma knife treatment but only because the avm is causing a secondary condition called hemifacial spasm which is even rarer than avms. he has never had experience of an treating an avm which is causing hfs so not sure if treating the avm will get rid of hfs. Due to size of avm i may need to have 2 lots of gamma knife ( not sure if this doubles the risk?. Explained that I have been getting headaches which are getting more severe , neck ache, pain at top of head, heart palpitations but basically he wasnt interested and doesnt think its linked to the avm, have to say I dont agree with that.
angiogram will be done in december and 1 month after that I will know if gamma knife team will treat it or not. If not I have to live with avm and hfs.if I get to that point is when I will go for a 2nd opinion!!

Hello! I also have an inoperable AVM but it is in my brainstem. Initially my first doctors told me my only option was several doses of gamma knife... the second set of doctors are trying to figure out if embolisation is safe for me and are consulting doctors all across the country for second opinions. A second opinion wouldn't hurt from doctors that have more experience, especially with facial spasms and AVM's. I'm finding more and more that having several opinions and being educated yourself if important in deciding how to treat your AVM. Is your AVM close to your TM nerve? I just wonder if that is playing a part in your spasms.

As for the heart palpitations... I have them frequently because I have a slight arrhythmia. Heart palpitations are not generally linked to AVM's but I have had them more frequently after my rupture. I'm suspecting that some anxiety and side effects from my blood pressure medicine might be increasing my palpitations.

Good luck with your angio and keep us posted! This site is amazing for support :)

Hi, thanks for your reply, apparently my avm is putting pressure on my 7th and 8th cranial nerves, hence the facial spasms. My neurosurgeon thinks embolisation is not an option, I got the impression he doesnt like that treatment for an avm no matter where it is because it changes blood flow too quickly and can create a rupture, but maybe thats just his opinion?? Its so difficult to know which way to turn. He basically said if the avm wasn’t causing my facial twitch he wouldn’t treat it at all and if I find a surgeon who is prepared to surgically remove it I will regret it! Nothing like trying to frighten someone eh?

Hi, I’m 42 and have an
Inoperable AVM on the brainstem which also causes secondary Trigeminal Neuralgia.

I was told GK was my only treatment option as surgery and embolisation were both considered too risky due to the location. I was also told the GK would help with the TN pain and for me that was the decider. I was desperate for some help with the excruciating pain.

Unfortunately it hasn’t helped with either condition. The AVM is unchanged and my TN nerve is, in my Neurosurgeons words irreparably damaged.

I also see a headache specialist who thinks my headaches are AVM related. I was recently admitted to
Hospital for a 10 day lignocaine infusion. It reduced my TN pain from a 10 to a 7 for 3 weeks. For me it was a very welcome respite.

I can highly recommend The National Hosptal For Neurology and Neurosurgery in London. I had a very long wait initially and then decided to pay to see someone privately. It cost around £160 if I remember correctly ( in 2011 ) and it got the ball rolling. I saw Mr Laurence Watkins initially who gave me the inoperable diagnosis. I was then referred to Mr Neil Kitchen who is the head of the Gamma Knife Centre there and also very experienced in Trigeminal Neuralhia and also Hemifacial Spasm.

I wish you all the very best X x

Hi jo m, thanks for your reply. So sorry to hear that gk has not worked for you. An Avm is bad enough but to have tn as a secondary condition is horrid. I’m lucky I suppose that at least my hfs is painless. How did you get access to the centre in london, was it your local hospital anyway or were you referred? If so by who? Sorry to have to ask but I really dont know how the system works if you want a 2nd opinion away from your local hospital.

Hi Williamsmummy4,

Mine is a long and complicated tale. My TN was diagnosed in 2008, my AVM in 2011. The first Neurologist I saw was very dismissive of the TN and said people of 36 did not get it and I had aytypical facial pain. I left that appointment in tears. I made contact with TNA UK and a very kind lady told me that everyone in the UK is entitled to a second opinion to wherever they choose to be seen. I saw my GP who arranged an appointment with a Neurologist in the next town as the first Neuro had knocked my confidence and I didn’t feel I was worthy of being seen in London. The second Neuro who I’m still with had been my saviour and he referred me to the NHNN in London for lots of tests. If the need comes that the second opinion is required I would ask the Neurosurgeon. I’m sure he / she would be more than happy to grant you a second opinion if they are not in a position to help.

Hi!

I was told by a couple of different doctors that my AVM was inoperable and they recommended the gamma knife treatment. We were going to do that, but it takes a long time to be effective and the results were not guaranteed, so we were hesitant. The main guy that recommended that I get gamma knife had never dealt with an AVM before, and I think in hindsight that it is ridiculous that we ever trusted this guy with anything. We went to a hospital that had a vascular neurosurgeon and got a second opinion (which I recommend). I believe that it is really important to go and see someone who does these operations regularly. My doctor ended up saying that he has even done operations on the brain stem, and that operating is much quicker and has a bigger guarantee of working. So there's my two cents, get a second opinion. Hope your angiogram goes well!

Hi and welcome to the site. If one thing I have learnt from this site is that if your unsure its always best to get a second opinion somewhere else...theres nothing worse than someone not interested in your health concerns especially if they plan on treating you...I hope everything works out and keep us posted as you see you are not alone...God bless sending prayers your way...