My daughter had a bleed on 12/16/2009 and there is damage to the thalamus area.
I'm just wondering if anyone else has experience with this kind of injury.
Unfortunately, I don’t have any info. for you on that, but was saddened that your update wasn’t better news. I’m not quite sure how you wrap your mind around that, but I’m glad to see that you aren’t giving up hope! There are other stories out there of people who have been given grim news, but have come back to prove the doctors wrong. I pray that will be the case with Stephanie. Young brains have an amazing capacity to reroute themselves. We continue to keep her and you in our prayers.
I second Susan… it’s early days yet and the brain has a remarkable ability to adapt. We’re thinking of her and your family.
Hi Michele,
I just joined and imagine my reply is not much help. I had an AVM bleed in my right thalamus in 2005 and would be interested in hearing about her recovery experience (ad sharing mine).
Ari
Ari,
Welcome to avmsurvivors! It’s great to meet you!
This is quite an old story – ten years ago – and while I hope Michelle may answer, those in the really old conversations have often “moved on” (and in some cases, patients may have passed away).
If you’d like to tell us how you are, how you’re getting on, that’d be great, and I hope some of our current members will be able to share their experience with you.
Hope you’re doing ok, especially after all this time.
Very best wishes,
Richard
@Michele_C Hello Michele I had damage to my thalamus prior to my avm/davf I had a massive rare stroke called CVST due to 5 blood clots in my brain In March of 2011 and they actually said it fried my thalamus - when you have a stroke that impacts your thalamus it usually leaves with centralized pain syndrome and I was referred right away to head of pain clinic at Stanford. What has helped most for pain is 1) Botox shots where my actually pain is and in order for insurance to pay them you have to have migraines which mine got worse post stroke. 2) occipital shots with lidocaine and ropivacaine but now I am allergic ( I have lots of medicine allergies) 3) ketamine infusions and oral ketamine you can find a local ketamine dr askp.org
Angela