Newly diagnosed

Hi Darren, thanks for your reply, so far I have been seen really quickly by the nhs. Saw my gp first because of my facial twitches, they peaked in august this year and i really felt I couldn’t ignore it anymore. She referred me to neurolgy here in derby and I was Seen by a neurologist within 10 days. She confirmed I had hemifacial spasm but was concerned about its rate of progression so referred me for an mri. This was done within 2 weeks but waited another 2 weeks for the results which is when I was told I had a large avm in my cerebellum. But that was it, no support from the hospital after that, had to google avm myself yo find out all about it. However within 3 weeks I have met with a neurosurgeon (actually last week) who said its inoperable, embolisation too risky too so will put me forward for gamma knife, shoukd find out by jan/feb if this is possible as its 3-4cms. The neurosurgeon works at Nottingham QMC which has a good reputation apparantly but I’m struggling to understand if thats it, gk is my only option, should I seek another opinion, I’m so confused.

Thanks a lot Darren. And hi again Williamsmummy4. I couldn't locate your last post in the forum which is why I'm not replying to it directly. My Cerebellar AVM is not operable either. My neurosurgeon has mentioned Gamma Knife but there are no guarantees there either and I would need a number of embolisations first to shrink my AVM. There are members of this forum who have sought different opinions. But I'm not sure it works quite like that here in the UK.

Like Darren, I think the NHS is amazing though. Yes it sometimes takes a painfully long time for things to move along. And yes sometimes you need to be a little assertive. But the rate of change in both research and care is really impressive. I have been hospitalised several times for my secondary condition, Hydrocephalus and everything I experienced the first time treatment-wise seems so basic now.

Hi lulu, I think so far my nhs experience has been good except for them initially not actually explaining what an avm is. The neurosurgeon who I saw last week did go over it but by then I probably new as much as him ( well probably not really, lol) He said he really wouldn’t recommend craniotomy in my case or embolisation but I’m not sure if he meant in my case or just in general but if sheffield wanted embolisation done to me prior to gk he would do it? That confused me a little. I have read stories from the uk and states saying 2nd opinions resulted in successful craniotomy so thats now put doubts in my mind as to whether gk is really my only option? Because the avm is causing hfs and he had no experience of that he wasnt sure if gk would solve it. I can’t live like a hermit and avoid contact with people, and hfs is such a horrid condition. I can’t not go to work etc but botox which I start in december will only mask the hfs for a limited time , eventually even that will stop working and hfs is a degenerative condition and will only get worse. What do I do?

Hi Williamsmummy4. Thanks for your reply. I really feel for you because the HFS sounds dreadful. You're right, that you really can't avoid people for the rest of your life and it would be horrible to think this is as good as it gets. I think if it were me then I would pursue treatment on the basis that sometimes you have to take a risk and without it you'll be left with this condition which must be pretty debilitating. Its a shame they can't say whether removal will definitely stop the process. For me the medics can't or won't confirm that AVM removal would make any difference to my Hydrocephalus. Its very frustrating but I'm guessing they just don't know. I have a (perhaps irrational?) feeling I would still have it. But that doesn't mean your HFS would be the same. Very best of luck to you and hoping you make the best decision for you xx