I have a large avm in my cerebellum and its pressing on my facial nerve causing my face to twitch and spasm. Has anyone else had similar symptoms? I would love to hear from you about your experience and treatment offered. I am due to start botox in 3 weeks but worry it won’t work.
Hi. I have an AVM on my left ear, scalp and face in the salivary gland. My Mom, who doesn't have an AVM, has facial spasms which were diagnosed as Hemi-facial Spasms (HFS) I just wondered if possibly your facial spasms might be from something other than your AVM? She has been treated with Botox 3 times and there is a surgery specifically for HFS. There is a support group on FB for HFS in case you want to check it out and see if that might be what's going on with your facial spasms. I'm sorry you are dealing with an AVM and facial spasms. I know they really interfere with my Mom's quality of life.
Hi takemeasian, thanks so much for your reply, I was diagnosed with hfs about 6 weeks ago but when they did an mri after the diagnosis they found a large avm which is pushing my facial nerve. I am currently seeking advice from a neurosurgeon who specialises in hfs but I’m not sure at this stage if mvd surgery will work because of the avm. I start botox in about 2 weeks. I am already a member of the international hfs community of fb and they are a great sorce of support but I am now searching for avm suffers who also have facial problems because of it.
Wishing you well
Caroline,I have had Trigeminal Neuralgia or TN caused by my AVM "tickling the nerve" as one radiology nurse described it.I had some mild spasms,but it was mostly horrible pain on the right side of my face.I had decided to have MVD surgery and that's when the AVM was discovered at a pre op MRI.I had CyberKnife on the AVM,but when the pain returned horribly i had Gammaknife on the nerve itself 7 18/13.I have been pain free from TN since.I hope you find relief and your AVM is controlled.I need to get back and see what mine is up to.Both MRA's have showed no change so far.I've just been trying to live life again.
Caroline, you are very welcome. My Mom is nearly 80 and is not a good candidate for the surgery to treat HFS. I wish you well on your journey towards healing. Thanks for sharing and keep us posted. Kimberly
Hi don, thanks for your reply, I’m glad you’re now pain free. What hsppened to your plan to have mvd, did they say you couldn’t have it due to the avm ( i am making some enquiries about mvd myself) or is that gamma knife has now sorted the pain and you can live with the odd spasm?
Where did you have gamma knife on the nerve?
Yes,I was having the MVD for the TN condition.When they saw i had a AVM, the thinking was to treat it as as the cause of the TN.It didn't quite work out as the Cyber Knife can take up to 3 years to work.So when the pain came back with terrible vengeance,i had a gamma knife treatment on the main trigeminol nerve at Presbyterian in Dallas.I have no pain or spasms now.Only some odd numbness and tingling on occasion that is easy to accept.
Yes,the neuro and a few others huddled together to come up with the best placement for the radiation.Honestly,i was ready for them to just cut my head right off and just trusted their judgement.It usually doesn't last forever,but 1 1/2 years later,i'm pain free and all is well.I do need to have a MRA and check the AVM.