Hi, I am 16 years AVM free, I developed a hand tremor after my AVM ruptured and after resction although for years it was a very slight tremor, now 16 years later it has gotten worse sometimes it’s hard for me to write. Luckily, my residual effects from the stroke are some slight short term memory loss and the tremor. I was discharged from my neurologist 8 years after my stroke due to my outstanding progress I just made an appointment with her again about this. Does anyone suffer from this or had the same issue?
My story was featured on Columbia Presbyterians webpage if you’d like to read it, https://www.columbianeurosurgery.org/testimonials/patient-update-16-years-of-gratitude-from-dr-lavines-patient-nicole/
Hey Nicole, I hear you on the hand tremor thing. My AVM is in my left neck and upward and gradually over the last 5 years, I have developed a weakness first and then a tremor in my left hand. At one point we had carpal tunnel done because the docs thought that would help. It did for a while.
Last January, when my major embolization went right and side effected all wrong, the tremor in my left hand went from mild to rather significant. I’m right handed so I don’t have a problem writing, but if I don’t wear a compression sleeve and wrist brace (just over the counter ones) keep it mostly manageable. Even with the brace, where I see the tremor most is when I’m trying to carry something with that hand - especially things like a soft drink from the fountain to the counter to put a lid on it. I’ve gotten into the habit of reaching over with my right hand to often do things I would have with my left hand.
My doctor said that he believes there is additional embolization that could be done that would reduce the tremors. Currently, I don’t trust what he believes because he believed I’d be back to work in a week. It’s now been 51 weeks and no end in sights.
Does it affect me? Yes it does. But in the overall scheme of things, it’s small potatoes in my book. Things like sight, hearing, speaking - those are the ones that get my attention.
Looking back on your post, the way you word the question is, “Does anyone suffer from this?” In my mind, I don’t suffer from it. I have it, it’s a nuisance, sometimes it’s a literal pain, but as long as I keep the compression sleeve and the wrist brace on, it’s doable.
I hope that helps - if there’s any further questions you have, let me know.
Yup…hands shake like wind in the willows after 2 AVM surgeries. My handwriting has deteriorated embarrassingly. I used to love hand writing letters but not anymore. Even typing is a challenge with shaky hands. Short term memory is getting worse as well. Rather than letting it depress me we laugh about it. It helps a lot. It’s a lot better than the alternative.
It just blows my mind that 16 years later it’s getting worse, I’ve always had a slight tremor and in the past few months, some days it shakes so bad yet others its perfectly fine. I guess I shall see what the neurologist says and what I can do for it. I don’t know if there’s medication or physical therapy, did you do anything for yours like that?
I agree it is small potatoes compared to what it could be, I always say “It could be worse” but it just baffles me on why 16 years later it is getting worse, and I have had no complications since my craniotomy. I will have to see what the neurologist say’s if this is normal for it to get worse over the years
Nope - put a wrist brace on and learned what things to use my right hand for. Always put my drink at meals on the right side of my plate…
I have a similar problem. I have a very violent tremor in my right arm. However, my tremor is from my still-existing AVM. If I had to recommend anything to stop the tremor, it would be Botox. My doctors recommended it for me but I haven’t tried it yet. My appointment is in March to have Botox done. But if you don’t necessarily want your hand to be paralyzed, then don’t do Botox. Prayers.
I have read about the botox, I saw my neurosurgeon this past Friday and he wants to do a brain scan to make sure there is nothing going on and also wants to rule out Parkinsons. My AVM and aneurysm was resected 16 years ago so he is not worried about that. Some days my tremors are so bad I can’t open a bottle of water others it’s not even existent