I agree with you completely. These docs are all from the same hospital campus. But I’ve learned this is just how it is with some docs. Sad, but true. I’ve just learned to keep asking questions and getting different opinions to get to the bottom of things.
Thanks again for great information!! My local medical team has made it clear their only intention is medication management. Let me be clear that I don’t fault them for this happening. CVST is a known side effect from MVD. What I do fault is their lack of aggressively managing the problem. But there are only a handful of docs in the country that will do surgery on the brain’s venous system. One way or another, I will get this taken care of if it doesn’t resolve on its own in 2 or 3 weeks. Dr. P has assured me of that. Unfortunately I’m unable to send a photo attachment to Dr. P in his mychart system.
1 Like
Just message Dr. P stating you see an area of hyperintensity within the right mastoid and you are curious as to what this represents and if this could be a problem of some sort? He will be able to see what you are talking about… Or ask someone on his team for an email address…just a suggestion…
I will do that. I actually do have his email address but it doesn’t seem like he answers the emails. So, we will see. I have the images all ready to show Dr. Hui and will get some feedback from him, as well. It’s really funny because Dr. Hui moved from Maryland to Hawaii, and hasn’t been able to do “virtual second opinions” until now. So, I am his first virtual second opinion. This will be very interesting. We meet tomorrow.
I don’t think this group realizes HOW MUCH you’ve helped me!! I am beyond grateful for all of you!!! The research I do on my own, coupled with the great information and feedback I get from you all, really helps me to communicate with the docs as an informed patient. There is no substitute for that!!
At first I was really “down” about getting CVST after MVD and how symptomatic I’ve been. But now I kind of feel inspired, after getting such great information from you all! I realize how BLESSED I am to still be alive after and to not have had a stroke with the CVST. I’m also blessed to have access to these amazing doctors. So sometimes in the midst of difficult circumstances, we have to look at the blessings that are mixed in. I’m also really starting to feel like I’m going to get through this, and there are “options” for treatment.
2 Likes
Good luck tomorrow! That is much better than waiting 3 weeks!
I think your positive attitude is amazing and quite remarkable considering what you are going through right now. Keep your chin up and keep using all your resources.
Let us know how it goes…
2 Likes
Dr. Patsalides’ plan is to see me in 2 weeks with surgery in 3 or 4 weeks, which makes sense. He wants to give the blood thinners the opportunity to work first. Meanwhile, I’m getting another opinion tomorrow. And probably a couple more after that. It will all work out!
2 Likes
@1speechpick - our first member to mention having ES surgery w/ Dr. Hackman (adriene61) just posted today that Dr. Hackman is a microvascular surgeon + ENT surgeon. If you want one more opinion after talking to Dr. Hui, you could try Dr. Hackman.
Hi @1speechpick,
I’m so sorry to read about all your struggles and complications. Hope you are doing better very soon. I can’t add something substantial here exept one recommendation for another doctor if you need more medical opinions.
Very recently I had surgery with Dr. Wayne Yakes in Englewood, CO recommended by Dr. Hepworth to check for a suspected transvers sinus stenosis. I think Dr. Yakes one of the leading doctors for those conditions and I think he might also be available in short term.
Good luck for full and quickest recovery. 
3 Likes
Thank you. Does he do virtual appts?
I’m not sure about that. I had none. Best might be to call his office and ask about video consultation.
Well, I met with Dr. Hui. The man is like a walking encyclopedia on venous issues. He opened our meeting with “I read your history; welcome to the world of venous ignorance”. He discussed at length how patients with venous issues are largely underserved.
Anyway, below is the summary of his report. Let me know your thoughts. My head is spinning. I wish I could go to Hawaii for intervention but that reality just isn’t likely.
1 Like
Thanks for the update. I’m a little disappointed there is no mention of mastoid area? I really don’t have any suggestions for you as I have no experience with CVST. I was just hoping that I had identified something that was overlooked and could be resolved with antibiotics. I guess this isn’t so simple…
Just keep pushing forward, as they say. Brighter days are ahead.
3 Likes
He actually did reference the mastoid area as “fluid filled, post-operative change, likely not of clinical concern”.
3 Likes
I’m so glad your appt w/ Dr. Hui went well, @1speechpick. It sounds like he laid out very clear options for you. Dr. Hepworth, as you know, has a wonderful reputation. You would be in excellent hands if you chose to follow-up w/ him. I appreciate that Dr. Hui’s first option was pursue URGENT endovascular exploration…I’m glad he sees the gravity of your situation clearly. A trip to HI would be great if it was for vacation, but w/ your current vascular dysfunction, the flight might be very painful or worsen your symptoms plus costly w/o the fun that should go w/ it. I wish there was an easier path ahead for you. 
I will be praying for you to have wisdom to know which path to take.
3 Likes
Thank you.
He sounds a very sympathetic & knowledgeable doctor, such a shame that it’s difficult for you to travel to see him for treatment. Is seeing Dr Hepworth an option? I’ll join with @Isaiah_40_31 in praying for wisdom with which path to take. But good that you were taken seriously. Thinking of you 
1 Like
Thank you.
@1speechpick I think Dr. Hui laid out the plan to address the intercranial pressure but is less concerned about the fluid in the Mastoid area. I think option 1 is what Dr. P suggested so I would consider that since Dr. P himself is well known venous surgeon who can determine if you need stent or not. Mostly, in upper sinuses narrowing are treated with stents and are hardly problematic this is irrespective of what caused the new narrowing of the sinuses
I would also pursue further imaging/examinations to determine whether or not the fluid in the Mastiod area is an issue (I know Dr Hui is not concerned about it but since you had recent MVD surgery, there is a good reason to establish whether it is benign result of the surgery or is a brewing infection of some kind that might be linked to the clotting you are now dealing with).
3 Likes
The thing I would add is that there is likely much more going on than the problem with the clot…namely IJV outflow issues bilaterally. I’m concerned about a new-occlusion in the left IJV especially since the right side isn’t really draining right now. My fear is that Dr. P may only stent the right sinus and not do anything with the IJVs, which would still leave me compromised.
Well…when Dr. P does the Catheter Angiogram/Venogram, he will be able to determine the patency of the IJV or whether or not there is external compression going on…etc. So I would agree with him to give the clotting medication for 2 weeks and then go through endovascular exploration (another name for Catheter Venogram/Angiogram)