My second embolization was done on July 13. This time three shunts were embolized and nidus is close to the brain stem, causing weakness in left arm, leg and eye muscles.symptoms similar to a mini stroke. I have to undergo Physical therapy.Two more shunts left and will be done with CyberKnife. Glue embolization has a 3-5% chance of complications and 1% fatality rate.
AVMs that are close to the brain stems can cause problems all over the entire body…that’s why they are so hard to treat. I’m sorry that you are having physical problems. You will get through this. It may take some time, and you may have setbacks along the way, but you can do it. Keep working hard at your therapies and never give up, no matter how much you may think you want to at times. My daughter sometimes gets really mad at me and her dad for pushing her to work, but then she thanks us when she gets stronger. Our good friend who had her avm bleed 8 years ago tells us the same thing…she got mad at her mother for pushing her, but now she is grateful that she did. This AVM stuff isn’t easy! I’m sending good julu your way.
Kati
Thanks for the support, Kati.
Kati Strong said:
AVMs that are close to the brain stems can cause problems all over the entire body…that’s why they are so hard to treat. I’m sorry that you are having physical problems. You will get through this. It may take some time, and you may have setbacks along the way, but you can do it. Keep working hard at your therapies and never give up, no matter how much you may think you want to at times. My daughter sometimes gets really mad at me and her dad for pushing her to work, but then she thanks us when she gets stronger. Our good friend who had her avm bleed 8 years ago tells us the same thing…she got mad at her mother for pushing her, but now she is grateful that she did. This AVM stuff isn’t easy! I’m sending good julu your way.
Kati
Hi,
I’m familiar with your symptoms, I too have an AVM close to the brain stem. I was diagnosed when I was twenty, did radiation at 21 (unfortunately it didn’t reduce the size of the AVM.) At 45, I had a stroke with similar physical deficits to what you are experiencing. However I also had facial paralysis.
I had two embos with a third embo and radiation treatment planned, but the doctors reviewed this plan when I complained of pain and they decided not to do the embo or radiation because of the adverse effects. The feeling of having the AVM gone would be a huge relief, but you have to worry about the complications that can come with an additional embo when it is that close to the brain stem.
Get some other opinions. Sometimes an aggressive treatment is warranted. But if you already are experiencing physical problems after the embos, I think it would benefit you to proceed cautiously.