What is it? I am a mess and dozens of specialists have gotten me no where. I had an MRV done 3 weeks ago and the report said normal and then I got this email from my neurosurgeon:
"I don't think your MRV is normal. I think the ladies in the office were
going to work on getting a CT venogram done to confirm that the venous
system is abnormal.
The venous stenosis ( or narrowing) would go along more with psuedotumor
cerebri, but it is important to understand either way (especially given
your health history)."
Pseudotumor cerebri was ruled out though so I don't know what the heck is going on. I am just getting worse. Since May I have progressed from some tingly fingers to seizures 1-3 times a day.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
While I can not comment on your diagnosis without the ability to examine you and obtain a history, I will try to provide you with some general information.
The venous sinuses are the veins that drain blood and cerebrospinal fluid (the fluid that surrounds are brain and spine). The sinuses drain this blood from the brain into the systemic circulation (like any veins, they take the blood and other fluids back to the heart). There are several of these sinuses.
Pseudotumor cerebral, or idiopathic intracranial hypertension, is a disorder characterized clinically by headaches and vision loss, and sometimes tinnitus (ringing in the ear that is synchronous with the pulse). It is diagnosed based on clinical findings and the finding of a high cerebrospinal fluid pressure. The treatment is usually with medications, but patients who do not respond or who have vision loss require procedures to relieve the cerebrospinal fluid pressure or at least the pressure around the nerves to the eye (to prevent vision loss). More recently, it has been noticed that some of these patients have stenosis, which means narrowing, in some of their venous sinuses. in some patients, stenting these veins (similar to stents placed in the heart, a stent is placed in the vein to widen it) has led to improvement of the headache and vision loss.
The cause of cerebral venous stenosis is not entirely clear. If this is seen on an MRV and more information is needed, an angiogram is done. This procedure entails injecting dye into the arteries of the brain then waiting until it reaches the veins then taking pictures (x-rays) of those veins.
It would be best for you to discuss your questions and concerns with your neurologist/neurosurgeon.
Thank you for using the forum I hope you find this information useful good luck
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