Blood clot in the brain??

[KerriC1]

After fighting to get a brain MRI ordered and performed, I got a call from my pcp saying that I had a dural venous sinus thrombosis. Just got the report in my chart today and it says there is no blood flow on the left transverse sinus. So it’s a blood clot. They’re scheduling me for a special MRI.

I’m a bit devastated and confused. And what little I’ve braved to read about it says it’s rare. But I think it’s close to the region where decompression is performed. And I know that’s a risk from surgery. Also the blood patches.

Just feeling defeated. Has anyone else had this or heard of it??

[KerriC1]

I guess I’m stranger than I thought. Going for an MRV tomorrow morning to assess the clot and surrounding areas. Called NS and they basically told me they don’t treat clots....  

I read about the risk factors and the only one I have to my knowledge is a long-standing CSF leak causing intracranial hypotension. Apparently this particular clot isn’t very common at all...

I’ll keep you posted once I have more details. Thank you Selma

[selmaS]

WOW....they don't treat clots??? Who does?
So why did they allow the leak to continue for so long?......
Continued prayers and healing MoJo to help you get through this<3

[KerriC1]

Wow this part of the journey is leaving me confused.

Good news, it’s not a blood clot. The MRV said it was basically restricted venous flow in the left transverse and sigmoid sinus.

Not much info but what I’ve read is indicative of high ICP. So now going from a leak to this??

And as far as the post op leak, NS didn’t seem too overly concerned which I wasn’t pleased with. Maybe if they lived like that, they’d be a bit more understanding....

[selmaS]

Goodness....no wonder you're confused.Glad it's not a blood clot....so what caused the restriction...scar tissue?

Did you have a dura patch and if so what type?

[KerriC1]

Just from what I’ve read, the venous sinuses are related to CSF flow, so if one of the sinuses are restricted, it causes a back up essentially....

I’m so confused with it all. I sent all the disks and reports to the NS and I have a follow up scheduled in may. Don’t know if I’ll hear from them until then.

And yes both surgeries was with a duraplasty and they used the bovine patch which I am strongly against but can’t get them to understand this is an issue for me with EDS

[selmaS]

Ok...wow....not sure why some Drs are not aware how these foreignn marerials can and do affect those with EDS...sad.
I can see why you are confused....

[selmaS]

Hi Kerri...wow, no I have not heard of anyone else having this issue.....not saying some haven't I just am not aware or do  not recall this....which shouldn't come as a surprise, but in all honesty, I am not aware of anyone else that has dealt with this.Please keep us posted and I am sending prayers and healing MoJo for you.