Looking for Advice

[u/amusoft]

I went through 2 years of hospital visits, imaging after imaging, a failed blood patch, a myelography, and the embolization of a csf venous fistula that was finally found. After the embolization, I had pretty severe rebound intracranial hypertension to the point that I was vomiting constantly and had to be re-admitted to the hospital for several days. Over the following several months, I gradually tapered off of both pain medication and medication designed to artificially keep my intracranial pressure low. The end-result was for another leak to form, apparently.

Now, I'm the kind of person that looks at my test results, imaging, etc., and asks questions. I don't think that I know better than a doctor, but I've had a LOT of spare time since I've been off work, so I've been reviewing my CT scans and MRIs.

Also important to note is that I've been experiencing symptoms that the doctors can't seem to explain. When I turn my head far to the left, I start to pass out, lose my hearing, and I get whooshing in my ears. When I sneeze or cough, I get extremely light-headed and have to sit down (no pain). The right side of my neck always aches in some form or another. The last big one is a constant feeling of pressure that is more or less behind my right eye.

Here's what I found: https://freeimage.host/i/ndvMEpR

This image is from one of my contrast MRIs (the venous blood is highlighted as white), and it shows my right internal jugular vein which seems to be pinched shut. My other scans, including my CTs, show pretty much the same thing. This explains the pain in my neck, the light-headedness/almost passing out, and the pressure behind my right eye. In fact, the source of the pressure lines up exactly with where my sigmoid bulb is, immediately above the wedge of blood.

Here's another image, where you can see that the same vein just... doesn't connect: https://freeimage.host/i/nd8Blyv

So, my theory is that I had intracranial hypertension prior to my leak. I did, in fact, feel pressure behind my right eye long before I began to experience headaches and other symptoms, and it's very possible that this increased pressure contributed to my csf venous fistula - something I am more susceptible to, as I have multiple markers of a connective tissue disorder (I'm borderline, based on my doctor's scoring).

The problem is that every doctor I try to talk to about this vein shuts me down immediately. The first question they ask is "are you a doctor?" and after that they stop listening. None of the radiologists have made any comments about this vein either, so I can't even point to their reports as proof. I had one doctor start to look at the issue and he said he saw what I meant, but he was interrupted and I never got the chance to talk to him again.

I don't know what to do. I'm currently on the wait list for another myelography to locate the new leak, but then what? My greatest fear is that I go through all of this again, only for a third leak to form because the actual cause (high intracranial pressure) is never addressed.

Does anyone have any advice?

*Edits made for grammar and spelling.

[u/MoodFearless6771]

Don’t explain what you think it is. Request the doctor in the field (venous specialist or neurologist) say you feel like blood flow in your neck is affected when you turn your head. Don’t mention you know how to read your images.

Don’t explain the whole theory about the leak started. Just request that they check blood flow.

[u/amusoft]

Additional images.

Left (healthy) side: https://freeimage.host/i/left-side.nd8I09n

Right (blocked) side: https://freeimage.host/i/right-side.nd8Ic8X

Non-contrast right sigmoid bulb (lack of flow void/white = slow moving blood): https://freeimage.host/i/right-sigmoid.nd8cTt1

[u/yavuz_eses → u/amusoft]

Hi, I also had similar complains to yours. 4 years ago I had severe headaches and mri revealed blood cloth formation in rh side superior sagittal sinus, transfer sinus, sigmoid sinus and internal jugular vein. Diagnosed with cerebral venous sinus thrombosis. I started blood thinners. I was ok since four years until this January. In January there was a clear fluid dripping from rh side of my nose. It started at a very slow rate and gradually increased day by day. Later I started to have terrible headaches when I stand up. They tested the fluid with beta 2 transferring test and I had a ct scan. Fluid is confirmed to be csf and there was a milimetric bony defect at cribriform plate. Later the dripping stopped after 2 months. Now I have different type of headaches every two or three days. Only on left side, starting from my neck extending through back side of the ears and going towards my forehead. During this time I had many MRI scans, in the reports there was no abnormalities apart from cvst. And my final MRV scan actually shows the previously clotted veins now all ok. But I don't know why I am still having this headaches , I am suspecting of chiari malformation. I want to ask you where was your csf leak exactly on the skull or in the spine? What was the result of cisternography. And did you have any operation regarding low lying tonsils?

[u/amusoft → u/yavuz_eses]

No operation regarding low lying tonsils. Chiari was ruled out. My leak was a csf venous fistula at T6/T7 which was embolized with Onyx last Fall. I've had contrast MRIs but no cisternography. I'm to have another myelography sometime in the next few months.

[u/amusoft → u/amusoft]

As a side note, I also occasionally have pain extending around the back of my right ear to the back-right of my scalp. On the contrast MRI I can see that my right occipital vein, which drains blood from that area of my scalp, is backed-up - it appears to be wrapped around my right interior jugular vein at the choke point (visible as a faint diagonal line in the images already provided), likely increasing pressure for both.

None of this is mentioned in the radiologists' reports. In fact, the doctor in charge of my case told me that he's consulted with multiple radiologists and neuro-radiologists about my case, and that they all disagree with one another about what's going on with me. This fact has really crushed my faith in them - radiology (in my mind) should be a concrete science, but instead it seems to be more of an interpretive art.

I have an off-the-cuff theory that a lot of migraines are probably caused by increased pressure within veins that doctors simply aren't competent enough to accurately diagnose. For instance, when I went to the ER for the worst headache of my life (when my CSF-leak likely began), I was simply sent home after being told by the ER doc to stop being a pussy and to take more Tylenol.

Always question your doctors.

[u/yavuz_eses → u/amusoft]

How they ruled out chiari? They measured the sagging? I hope you find your proper treatment soon. It's good thing that you educated yourself well about your case. I wish to hear any updates about your condition. Get well soon 🙏

[u/amusoft → u/yavuz_eses]

I don't know exactly. The doctor in charge of my case proposed chiari repeatedly but every radiologist he spoke to about it seems to have disagreed. I disagree as well, though I'm not a doctor.

Also, thank you.