Documenting my journey

How is a thrombus vs stenosis differentiated on an MRV?

Here is another screenshot of possible stenosis on the right side. I see a pretty severe narrowing in the vein.

I really feel for you and wish you quick recovery. You really do not need this while recovering from MVD. I think you need to consult with a neurovascular surgeon who specializes in vein thrombosis. I am not a doctor but dealing with clots in the brain sinuses does pose a serious health threat so I am not really sure what the intervention would be in your case. Did they give you IV anticoagulation when they diagnosed CVST ? May be you need stronger anticoagulation.

One question, how long after the surgery did the IIH symptoms start to appear? Are you on any medication such as hormone therapy that could be associated with clotting? I am wondering why it is showing up now but not right after the surgery if it was surgery related.

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Thank you! The high pressure symptoms came all of a sudden at week 6. The hospital only started with baby aspirin, which isn’t protocol at all! I had to go back with more severe symptoms then they did Lovenox. I’m not on hormone therapy. But they still say it’s related to the surgery. I’m getting a couple other opinions this week.

Ok then you might have a point in suspecting a possible new narrowing on your dominant transverse sinus induced by the surgery on top of the clotting. Briefly investigating how the MVD is done, it looks like that the surgery does expose transverse & Sigmoid sinuses so the possibility does exist that the surgeon might have moved things around potentially causing a new narrowing on the brain sinuses (see the study below indicating how they get exposed during surgery). So it does make sense to investigate whether there is actually a new narrowing on your right dominant transverse & Sigmoid sinus induced by the surgery in addition to the current clots. A good vascular doctor can determine that but it might mean Catheter venography. Don’t know the safety of it when a clot is present in the sinuses and you are still recovering from surgery but you can discuss with them.

Source Study : The Efficacy and Safety of Microvascular Decompression for Idiopathic Trigeminal Neuralgia in Patients Older Than 65 Years - PMC

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Thanks for helping me sort through this. I looked at the MRI/MRV reports and the shading on the left venous sinus areas are said to be artifact. But I do see some narrowing in the left transverse sinus that was present before surgery.

I’m not 100% convinced that the right side is clot; I’m thinking there’s a chance it could be venous stenosis induced by the surgery. Which is why I’m getting another medical opinion. I absolutely could be wrong on that. I see an expert from New York tomorrow. I’ll post again after that appointment. Thanks again!

So sorry that you’re going through all this, I hope the doctor tomorrow can offer some treatment to help, will pray for that :pray: :hugs:

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One thing I can see is maybe your mastoids have fluid in them which could indicate infection as indicated with pink circle…
ab9f6139a911d238bafa2412ad7296a3c598eab4_2_565x500
There seems to be a connection between mastoiditis and cvst… Perhaps you need to be on Antibiotics aswell as blood thinners???

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The same question ran through my mind, @KoolDude i.e. why wouldn’t the clot have formed soon after surgery not 6 weeks later if it was surgically related. The other option you suggested re: surgery causing a new area of stenosis makes more sense.

Thank you as always for your amazing insight & helpfulness for our members.

@Isaiah_40_31 It looks like @boogs99 might have found what could be the trigger for clotting. I still think it is valid the suspicion that @1speechpick has about new stenosis on her right transverse/sigmoid sinuses. It does not only look there is a clot in there but also the width of the veins appears to be thinner than it was before the surgery.

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Do you see that only on the right side, or bilaterally. @boogs99

I think the spots on the other side could be marrow. One of them could also be the vertical portion of the facial nerve or other inner ear parts. Its hard to tell from just a slice. But I’m not a doctor, I would ask at your appointment.
Hoping you get this resolved quickly and wishing you all the best!

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@KoolDude @boogs99 @Isaiah_40_31 @Jules

Hi Family! Once again, I can’t tell you HOW MUCH I appreciate all of your information and encouragement. I realize we’re not doctors and I’d never solely substitute for medical evaluation. HOWEVER, in today’s medical climate, I feel like it’s sooo important to be educated and ask lots of questions. Unfortunately, I didn’t look at this forum before today’s appointment, so I didn’t get to ask about mastoiditis. @boogs99, I’m going to pull out a few more slices and post to the forum, then I’ll message the doctor some pictures with questions.

I learned today there are approximately 3-4 people/million that get CVST, so it’s a rare phenomenon. Per the doc today, most clots happen in the arteries of the brain, not the veins. Not surprisingly, there are very few doctors that specialize in aggressive treatment of CVST (meaning doing more than anticoagulation). The doctor told me today there are 4 docs nationwide that study/treat CVST on a regular basis. So it’s about like trying to find a provider for hyoid bone syndrome. I was fortunate enough to meet with Dr. Patsalides today (New York). He confirmed my thoughts on my condition are correct.

My right venous system is my dominant side for venous drainage, and my left side doesn’t drain too well (even before the clot). The clot has caused the right side to not drain well at all, and the left venous system is not able to fully compensate for the right side’s lack of function. Therefore, I’m getting fluid backup and pressure in the brain. The only good thing is that the pressure isn’t high enough to cause Papilledema. But it’s sure causing other very unpleasant symptoms. The wants me to continue Lovenox for 2-3 weeks and if things aren’t better, he will go in and recanalize/stent the area where the clot is. I’m going to get at least 1 or 2 other opinions, but I talked to the number 2 guy today. The number 1 doc for this is in Hawaii lol. I’ll probably have a consult with him but surely can’t see myself making a trip to Hawaii for surgery. :slight_smile:

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I wonder if the fluid in the mastoids could cerebrospinal fluid. There seems be a correlation with brain surgery, cvst and CSF leaks according to this article: Postoperative cerebral venous sinus thrombosis in the setting of surgery adjacent to the major dural venous sinuses in: Journal of Neurosurgery Volume 131 Issue 4 (2018) Journals
Or perhaps after surgery it is normal to have fluid in the mastoids for a period of time. I feel as though Dr. Patsalides would have noticed this stuff…
Can you ask the MVD surgeon what he thinks?

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Thank you Boogs99. Unfortunately Dr. P didn’t mention this. I’m actually meeting with Dr. Hui soon, so I can ask him as well. My MVD surgeon is out on leave until the end of September.

I posted a few more slices of the general area. Let me know your thoughts. Thanks bunches!





Its probably nothing. Perhaps its just scar tissue from the surgery or marrow? If you had mastoiditis you would have a fever I think? If you had a CSF leak you would have a headache that would be resolved when you lie down?
Again, its hard to believe that these Doctors you are seeing would miss something so obvious. They know you just underwent mvd surgery so they are aware of all the possible complications. I would certainly ask just to double check, but don’t loose any sleep over my radiology report.

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I appreciate your input. It helps greatly!! Can you help me identify what you’re seeing so I can ask Dr Hui some informed questions? Thank you!

The mastoids are a part of your skull, behind your ear, that have a honeycomb-like structure that should be filled with air. The area that I had highlighted seems like it could represent some of those honeycombs filled with fluid. Air is dark on MRI but the area I had circled is bright which could be any number of things.
I would just ask Dr. Hui what is going on in the pink circle? Ask if this could be effusion in the mastoid or cerebrospinal fluid in the mastoid and if it could be related to your clot?

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I hope that the medication starts to help, sounds like Dr P was helpful…Hawaii would be lovely! But too much travelling not good with your symptoms! Sending you a hug :hugs:

Thank you. I agree with the travel, but he’s able to do a virtual appt which could add invaluable insight.

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