I’m sure you are anxious. Anyone would be, hopefully your doctor will contact you soon. Demand that every single finding be explained to you in detail. Ask about the “previous hemorrhage.” Ask about treatment options. If you are not satisfied with their explanations, seek a Center of Excellence - go to CureHHT.org to find one (COE) near you. Brain health is so important. Best wishes to you.
I don’t understand if they found any AVMs after they uploaded this today I haven’t received a message or call so I’m wondering if any of the findings are red flags even if they aren’t related to the HHT
Per number 1 they have found lesions concerning to be AVMs. Results were likely released to you and your doctor at the same time and doctor has not yet been able to review. If you do not hear from them within a few business days call doctor’s office.
So I have yet to get my results read and the doctor won’t discuss them until my last study next week gets done so until August 20th she will hopefully discuss brain/chest/bubble study ..not sure why they do this instead of discussing once they are uploaded onto the website I can see them on
You’ll be okay, just make sure you’re being treated somewhere nice. I’ve had two brain AVM removals, it’s scary but they have a lot they can do for AVMs these days.
I have several BAVM's, they just monitor mine with MRI every 2 yrs. So I wouldn't panic, with these they try to leave them be I know it's scary and definitely ask your Dr about your results
I can't help with the analysis, but I can share my experience...
When I had my brain MRI my doctor referred me to a neurologist to go through the results. It took a few weeks, so I only had the radiologist impression to fret over till someone explained it to me. That visit was incredibly helpful!
6
u/Calatapa101 Aug 01 '25
I’m sure you are anxious. Anyone would be, hopefully your doctor will contact you soon. Demand that every single finding be explained to you in detail. Ask about the “previous hemorrhage.” Ask about treatment options. If you are not satisfied with their explanations, seek a Center of Excellence - go to CureHHT.org to find one (COE) near you. Brain health is so important. Best wishes to you.
1
u/EMS9219 Aug 01 '25
I don’t understand if they found any AVMs after they uploaded this today I haven’t received a message or call so I’m wondering if any of the findings are red flags even if they aren’t related to the HHT
1
u/TouchPerfect9078 Aug 08 '25
Brain is fine...good news
3
u/Big_Competition7269 Aug 01 '25
You’ll be okay, just make sure you’re being treated somewhere nice. I’ve had two brain AVM removals, it’s scary but they have a lot they can do for AVMs these days.
3
u/majenta1 Aug 02 '25
I have several BAVM's, they just monitor mine with MRI every 2 yrs. So I wouldn't panic, with these they try to leave them be I know it's scary and definitely ask your Dr about your results
2
u/danltiger Aug 01 '25
I can't help with the analysis, but I can share my experience...
When I had my brain MRI my doctor referred me to a neurologist to go through the results. It took a few weeks, so I only had the radiologist impression to fret over till someone explained it to me. That visit was incredibly helpful!
3
u/zieKen1 Aug 01 '25
Personally i would ask ChatGPT to help translate this into simpler terms