I had a CT Venous Brain with and w/o Contrast a while back. Is this the same thing as a CTV? My report said, “THERE IS AN ACCESSORY DRAINING VEIN ON THE RIGHT ARISING FROM THE RIGHT JUGULAR VEIN AND EXTENDING ALONG THE RIGHT NECK ALONG THE RIGHT VERTEBRAL ARTERY VISUALIZED POSITION OF THE RIGHT VERTEBRAL ARTERY APPEAR PATENT, HOWEVER THIS IS INCOMPLETELY IMAGED. IF FURTHER CLINICAL CONCERN PERSISTS THIS WOULD BE BETTER EVALUATED WITH CTA OF THE NECK.”
When my symptoms were the worse the first 16 months or so of this ordeal I am experiencing, I had excruciating migraine-like headache pain that was disabling in many ways, along with tremendous head pressure. I wanted someone to do a LP at the time, but couldn’t get anyone to do it, mainly due to my age and not being overweight. I eventually got a Neurologist to do a LP, but by then these 2 symptoms improved a lot. When I had the LP, my Opening Pressure was 8 - some doctors see this as low, while others see this as normal. My question is, I wonder if I had Intracranial Hypertension for so long (16 months), that it finally gave way (“burst”) and that is why my symptoms improved, but also, since it was not addressed by being treated, the Intracranial HYPERTENSION became Intracranial HYPOtension and thus created the ACCESSORY DRAINING VEIN stated in the report quoted above? I’m curious to know then if there could be 2 issues because of this, i.e., ES and the extra draining vein due to ICH and I would still have to have it confirmed that a Cerebral Spinal Fluid leak was created that would need to be addressed?
I hope Dr. Constantino is not a doctor offended by asking questions to see his opinion on something a patient needs to understand the answer to. Do either of you know?
I think what you’ve postulated could be what happened, & I would hope Dr. Costantino would give you his ear & time to discuss this with you & give his perspective. I’ve heard he is a good listener, but in a few cases, forum members have not felt heard, however, that was last fall when things were in an upheaval in his office. I believe things have settled down now so I am optimistic that he will give you the time you need to ask your questions, but ask the ones that are most important to you first & save the rest for later in case the appointment time runs out.
Hey @GodisAWESOME,
I’ve had the ‘joy’ of dealing with both Intracranial HYPERTENSION and Intracranial HYPOtension and neither is fun. For me the hypertension built slowly over many years 20+yrs, where my hypo was post surgery. I thought the ‘horrible yuck’ I was feeling was post surgery recovery symptoms. Turns out it was more of an issue than just recovery symptoms.
You speak of ‘a LP’ by which I believe is a lumber puncture. It is my understanding that an LP is measuring CSF pressure and not blood pressure. Also the CSF has it’s own circulatory system around the brain and spinal cord, separate from the blood or vascular system, so I’m unsure how CSF could create the accessory draining vein.
Now, I have to admit, I’m certainly no Dr. So, I’ll be more than interested to hear what Dr Constantino has to say on the subject.
So sorry to hear you’ve been going through the same kind of thing! Hope that things have turned around for you and you’re all better now!
I might not have worded it correctly in my message on the forum without looking back and rereading it, but what I was meaning by the accessory draining vein being noticed that perhaps when all the pressure from possibly cranial hypertension happened, that pressure in the brain may have caused the accessory draining vein to happen, since no one treated me for all that pressure ahead in my head for the first 16 months. This all started in April 2020. I am just thinking now that maybe there is a leak as well that happened due to no one treating the hypertension and now maybe more than one thing to deal with. The hypotension is certainly better than the hypertension, that’s for sure! I don’t think any leak is very big. I do infrequently get liquid from my nose but mainly when I am bending over.
The whole shame about all of this is that we, as the patient, I have to try to figure all this out instead of the so-called specialists doing the type of research we end up doing! It’s right there on the internet for anyone to read, and I know that they are quite busy, but when they encounter a patient with symptom after symptom and who has gone to doctor after doctor this should ring a bell in their heads not that this person is having anxiety or is mentally confused, but that maybe truly something really is happening to this patient and how lovely it would be for that specialist to be the one to figure it out. And even further, maybe be the one to write a research on it and be the one to pioneer some kind of treatment from the research. If pride could just be set aside and doctors realize that they are human and it’s okay to be wrong, I believe a patient would rather they say they don’t know then to make the patient feel like this is all in their head, pardon upon in my case. If any specialist would even just go to this forum and read what we are all saying to each other, I think that quite possibly some things could change in the medical field. Right now, with everyone being short-staffed and nobody having time for anyone and anything, we are left to go back and forth with each other through forums like this to try to get the help that we need.
All the above being said, I’m just so very happy I am a Christian and I can count on God, who is the one leading me and I believe others to sites such as this forum and so forth where we can get the help we need even when our medical doctors and specialists don’t believe us and we have to resort to other means, because I believe most of us are not quitters and we know our bodies and are not willing to just accept that it’s okay to be in pain and suffer because all their tests don’t show something or they don’t have answers.
Thank you for the information you were able to give me. It helps to understand things better, especially when you get someone else’s perspective or can be enlightened by their research or knowledge.
We’ve had members who’ve had intracranial hypertension caused by IJV compression, which because of the pressure has caused a leak in a weak spot, then giving intracranial hypotension, so that’s definitely possible @GodisAWESOME … and if the hypertension has been there a while before the leak (or comes back if the leak heals itself), and the jugular compression remains, then this can cause collateral veins to swell and take over, so this could’ve happened with you, you’re right.
If things are more stable now, & you don’t have hypotension symptoms, then I would guess the leak has healed itself and I wouldn’t think this would be anything which needs addressing now, the best treatment is to resolve any compression causing intracranial hypertension so it doesn’t happen again. But obviously I’m not a doctor, hopefully Dr C will be open to a discussion about symptoms and treatment options with you.
Thank you so much for that information! That is so helpful and I will be able to arrange my questions around some of the things that you are saying! I’m so glad I posted this because it was really a second thought as I was reading my medical reports.
This site is just so helpful! I can’t say enough good things about you and Isaiah and all the help you provide to us as Members! Thank you, thank you so much!
I wish we all had become doctors - you, Isaiah, and me! We would be the best doctors for our patients! I know there are a few good ones around, but they are very few I’ll tell you. The ones that really care go the extra mile, do the research, have empathy, and care for their patients! After seeing - gosh, what am I up to now - 45? - I think I can talk from experience! LOL
Dr. C’s office mgr quit & his NP went out on maternity leave, & something went on w/ the front ofc staff then he took a leave as he needed to have surgery so was out of the ofc for about a month. The interim staff got dropped into the situation w/o much training so appts were made for times when Dr. C wasn’t there & follow-up calls to change appts weren’t made. Some people who should have been scheduled for surgery got dropped off the list so no surgery was scheduled. We had one member who traveled 4 hrs to the ofc for her appt & was told he wasn’t in that day when she got there. Her appt. had been confirmed the previous day. It was quite a mess. Things are back to running “like a well oiled machine” now from what I understand.
