Hi! I’m from Perth and 4 weeks ago I was treated for a grade 4 avf in my posterior fossa. It was a long procedure (9 hours) however when I woke up I experienced multiple cranial nerve paralysis. My right side of my face is paralysed, I’m unable to swallow properly and my voice is gone. No one can assure me if it is temporary or not. I’ve been told it’s due to swelling. I was given high dose of steroids for 2 weeks which would help with the swelling however 4 weeks on I haven’t seen an improvement at all. I’m really struggling to come to terms that this paralysis may be permanent. The facial paralysis is similar to Bells Palsy. Would love if someone had any experience with something similar. Thanks
Hi Anita. Sorry to hear about your paralysis. I had a stroke during my embolisations and it was 3 years ago and still I can see the effects of this. This is so when I smile or cry it is very obvious. I can't help you with your no speaking I can only hope that it improves over time as my stroke did. I also can't open my mouth as big as before but I don't worry too much about that.My AVM was on the same side as yours so your experiences are similar to mine. I also still have episodes where I sweat a lot and don't speak and I can't move at all. I also had vomiting attacks which lasted well over 12 months. Since these occurrences I take the tablet Tegretol for these which improve the seizures. I hope that your speech comes back. Also I hope that this helps you. Ina
Thanks Ina, appreciate you sharing your story with me. Are you AVM free now?
How did you go dealing with it all in the early days? I’m finding it difficult to get my mind off what happened.
Hi Anita, Yes I am free of the AVM now and I hope that it doesn't come back. I found it difficult in the early days with having to lots of rest and not doing too much. I thought how lucky I am that they found it and I tried not to worry about it too much. The doctor referred me for CV scan as I have been having headaches every day and I had circles around my left eye when I looked out, this only happened sometimes. So you can see how lucky I am. How did they find yours? I hope that you are getting your speech back.
Congratulations on being AVM free! That’s great news.
My symptoms were 3 months of vertigo. Kept getting told I had an inner ear infection but I knew something else was going on.
Speech is about the same. Doing my voice therapy exercises but feel I’m not making much progress. Once my speech is back I should be able to swallow better too. The facial paralysis is getting me down the most however.
I hope that your speech gets better with time. I also had vertigo and and i still have nights when I am not too good with turning over. But I put up with it and don't worry about it too much. Don't worry about your facial paralysis as it should get better with time.
Hi Anita, I am also from Perth (Dr. Singh) and have an upcoming DAVF treatment too. I had one last year and was not curative but now they recommended to have another operation. Can I please ask how you are now? Did they get the whole fistula? Were you treated transvenously or transarterialy? Many thanks.
Glad to hear from you.
I also have Dr Singh. I am going well but my fistula has grown since my last MRI. My hearing in my right ear is deteriorating though. The fistula is pressing on the hearing nerve now. Dr Singh would like to do another embolisation within the next few months to try and cure it. I’ve been treated transvenously. What is the plan for you? How did you go after the previous embolisation?
I am truly sorry to hear that your fistula has grown again. I also had one embolisation through the artery, but it was not fully cured and I will need another treatment.
- Can I please ask if Dr. Singh thought it was fully cured right after the procedure? Or he told you that he could not get it all and will monitor it? If so why they could not just finish it transvenously?
- Do you also have a Dural fistula or it is AVM inside the brain? if it is DAVF, where is the location of it please? Mine is at the transverse/sigmoid sinus.
- Finally, did you have coils in the sinus only, or coils and onyx?
Hope to hear from you soon.
I have a Dural fistula in my cerebellum. I currently have Onyx in there. No coils. The DAVF has quite a high flow with many feeders so was unable to cure it at once as it was a very long procedure (all day) and was trying to protect my cranial nerves from more deficits. I have had 2 embos so far. Dr Singh hopes to cure it next time with a different approach.
When is your next Embo scheduled for? What are the risks? How are you feeling about it all?
Really hope the next embolisation will be curative for you. Do you know if your fistula is inside the brain or at the dural and what arteries were used? Mine is at the sigmoid sinus and will need coils and onyx to treat it.
I was told that my sigmoid sinus is diseased and I don’t need it any more so it can be sacrificed and coiled.
Interesting to hear about the new embolisation approach, did they explain it to you?