Left thalamic CM

[Kolinger2011]

Hi,

As you all have, I have researched and researched since my new diagnosis. I have a left thalamic cavernoma, diagnosed 11 days ago after a very small bleed. I woke up completely numb on my right side. The numbness has knots resolved but I now have a lot of tingling down my torso, back and leg. My doctor thinks symptoms will be 90-100% improved however I am not sure I am that optimistic. Anyone here with thalamic cavernoma care to share their experiences?

[Elizabeth]

Welcome,

I'm sorry you've joined us but glad you found us. Thalamic location is a very deep, tricky location. Since surgery is currently the only treatment for cavernous angiomas, ideally your angioma will never bleed again and hopefully you never need surgery. Since they don't know why angiomas bleed, its hard to "avoid" a bleed. Generally we suggest, no blood thinners of any type(advil, alleve, etc), no rollercoasters, and no scuba diving. Finding good doctors can be challenging. Depending on where you are located there are a few "centers for excellence" that you will find more knowledgeable doctors at. Read the newly diagnosed section of the main site, lots of good information there since it is advisable to learn as much as you can so you can advocate for yourself. You can search old threads here and find lots of good info too. From what i hear, most of the recent activity has moved to Facebook...I'm not on there but I hear that's where most everyone went. There are a few others that have had thalamic cms. Patti is one person that had a problematic thalamic cm and Lynn had one that had to eventually be removed. I'm sure there are others, but those are the 2 ladies that I am most familiar with. If you search here for thalamic you will find a lot of posts. Best wishes!

[PattiG]

Hi and welcome,

As Elizabeth mentioned, the thalamus is in a very deep location. The thalamus serves as a sensory 'relay station.'
My thalamic CM was on the right side and caused facial numbness and tingling. Because the malformation progressively bled, I opted for surgery. Imaging showed it was on top of the thalamus, but unfortunately my NS didn't discover until surgery that it was very involved in the thalamus. So in my case, surgery made things worse and I developed Central Pain Syndrome as a result, yet it could have also happened had I left it alone.
I'd encourage you connect w/leading experts for a 2nd opinion. Since you're having symptoms, I would imagine your dr. will follow-up with another MRI in a timely manner to look for any changes.
I'll keep my fingers crossed your symptoms will resolve and you'll have no more bleeds!

Take care and best wishes,
Patti