So had CT Venogram today. This was not the catheter assisted kind, thats next week. Here is report…
"Mildly prominent right greater than left styloid processes, though with mild extrinsic compression upon the adjacent jugular venous vasculature. 3. Incidental note is made of a ventral epidural venous engorgement of upper C-spine, more pronounced superiorly. In conjunction with MRI findings on prior brain and C-spine studies, this could potentially reflect idiopathic intracranial hypotension with CSF leak in the appropriate clinical setting.
Mildly elongated, right greater than left styloid processes, measuring at least 3.7 cm on the right. There is little associated extrinsic compression upon the high right internal jugular vein, which remains widely patent. The bilateral internal jugular veins are grossly patent. Brachycephalic in diameter vein and visualized SVC is patent. Visualized arterial structures are grossly patent. Partially visualized ventral epidural venous engorgement of the upper cervical spine. When compared to prior MRI C-spine, this is far more pronounced on that examination."
Of course the radiologist had never heard of eagles syndrome, and I literally want to scream that it says a CSF leak was noted clear back from scans in November and Noone caught it.
Im so confused by this, first of all that it said jugular compression was mild. Or is that common with this type of test? Is this not as accurate for compression as catheter test will be?
And that he mentioned intercranial hypotension…I have all the symptoms of hypertension…not hypo…worse when lying down, bending over, exertion, worse in morning.
Is this a complete separate issue? Or can a csf leak be caused by hypertension due to eagles??
I really hope I can get answers from someone. I sent all my tests to dr nikaji today, so fingers crossed.
We have seen many members whose radiology reports state mild compression, & we’ve looked at their scans & their compression certainly doesn’t look mild- in our non-medical opinions! So it may be that yours is being dismissed when it’s more significant, but can’t say for sure. Also we’ve seen that some members are very symptomatic for intracranial hypertension when their compression isn’t too bad, whereas others with severe compression aren’t so symptomatic- it can depend on whether the person has developed collateral veins which can take some of the blood flow from the IJVs.
It’s possible that your intracranial hypertension has at some point caused a CSF leak, and that’s showing up on your scan, but maybe it’s healed? To be honest, I don’t know enough about this to say how quickly the leaks can heal, how quickly the hypertension would build up again, and how long the hypotension shows on an MRI. But yes, a CSF leak can be caused by ES through intracranial hypertension- some members unfortunately cycle between the two.
I hope that Dr Nakaji can help you; you mention having the catheter venogram next week, is it worth seeing if you can check with Dr Nakaji’s office before this to make sure the venogram you’re having is the same protocol as he likes to see? Not all radiology departments are experienced with this?
Thats what im figuring out, its like which came first, the chicken or the egg? There has to be a root problem. Ill be anxious to hear back from dr nikaji…I dont believe its truly hypotension. It does not make sense that they have had me quit the diamox for all these tests, and the pressure feeling immediately increased after quitting it. Wouldn’t diamox make hypotension worse? I hoping he can schedule what kind of test he specifically needs there, and it’s worth it for me to take the trip there to do it. KC med professional just aren’t informed about this. They want me to see a csf leak specialist, which i fear will just send me down another useless rabbit hole.
I just really need someone who knows what they are doing. This is my brain for gods sake. Im critical at this point, the pain is excruciating and I feel like im fighting to stay conscious. And not passing out. I did get feedback from dr in turkey on just my original ct scan, not even this venogram showing leak, and he said the compression shown is very mild, but the collaterals are huge. So something is compensating for something.
@Cindyd - As @Jules said, it would be better to postpone your planned catheter venogram because Dr. Nakaji wants those done w/ manometry (blood flow pressure testing in various places in the cervical veins those checked in your brain). If you can ascertain that the one you’re getting will be done w/ manometry then it will be fine. Otherwise, it’s worth it to wait as it’s not a procedure you’ll want to have done more than once in your life. Dr. Mehta is the go to vascular doctor whom Dr. Nakaji
uses for those.
@Jules@Isaiah_40_31 thank you so much for your input. Im only comfortable at this point for dr nikaji to do the testing. I just dont trust the ppl in my local health system even know what to look for.
Just curious, why do you say that testing is something you will only want done once in your lifetime? Painful, risky, or is it medically only allowed once??