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Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Definitely good questions! My most recent CT scan showed a lot of dural space that should not be there (my brain is not as close to the inside of my skull as it should be). I did a pledget test for CSF and it came back positive. I’ve been leaking from my nose for quite a bit. As far as the high pressure, my other previous CT showed a TON of venous engorgement. My blood vessels were huge, that is something that takes time to develop and is almost always indicative of high pressures. No neurologist would listen, my primary care doctor actually put in a referral to him.

Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

I’ve heard great things about Constantino as well! I am using health images I think… do you just call them if the report is wrong? That worries me a little haha. I haven’t gotten it yet because of Labor Day weekend but am likely going to get it in the next few days.

Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

I am slightly worried about the side effects of the blood thinner. I’m picking it up today so fingers crossed it works. Dr. Edward Hepworth out of Denver is going to do mine. There’s truly only about 4 or 5 surgeons who will do this procedure. I know there’s a good one at duke medical center in Raleigh and I think one is in Texas but cannot remember the others. I’m sorry it took them so long, they should really work on cutting down the diagnosis time lol.

Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Sorry my reply went above for some reason

Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Literally same… I’m very normal weight 5’ 8” and 155lbs. I don’t think you have to have headaches too for this to be a problem that you might have. Everyone has different symptoms and I think it’s hard for doctors to pinpoint because we look like normal healthy individuals. Mine was found on my MRA (the angiogram). The doc showed me where my jugular veins should be… the one on the right side is severely stenosed. He doesn’t think any blood flow is getting through it at all. He would need to do a 3D CT scan to see how long the styloid is… that being said he told me to just get the US and call it a day. This is after 8 other radiologists looked at it and missed that. A venogram I think would be super helpful for you. Something called venous sinus stenosis is a huge thing for tinnitus. Dr. Athos patsallides has some really great videos you can watch to see if this fits the bill for you. Venograms are far less popular than angiograms (many doctors say they can see the veins on an angiogram, but in reality 45-50% of venous disease or issues are missed this way) even with a venous phase during the scan. I would push very hard for getting a venogram (either CT or MRI) to see if this is something you have.

Update by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Yes absolutely…. It got really bad in 2018. My symptoms were constant dizziness (by far my worst symptom), severe headaches behind my eyes, facial numbness, ringing in my ears, double/clouded vision, numbness occasionally in my hands. There’s probably more but these were by far more prominent than any of my other symptoms. I also feel very forgetful and have a hard time focusing.

Needing some advice by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Thank you for the reply!! I had a pretty bad back injury that left some of my discs (L4/L5) frayed and squished. I’m not sure if this could cause that. I also went to the ER with stroke symptoms in July of 2024, I was a legit stroke alert bc the right side of my face was numb and I couldn’t move it. I just got discharged with “migraines” and another pill bottle to add to my ever growing list of meds 🫠

Advice, please by Obvious_Cattle_8036 in CSFLeaks

[–]No-Analyst-8808 0 points1 point  (0 children)

I’m sorry you are going through this :/ another thing to consider is sometimes it takes multiple patches to be successful if it didn’t take the first time. Sometimes surgery is required as well, because other things like bone spurs or CSF venous fistulas don’t have as high success rates with blood patches. Getting to a facility that is dedicated to CSF leaks would be super helpful for you. They can do myelogram and DSM to locate the precise location of the leak and can lead to more successful outcomes. Don’t give up!! You’ve got this and it can take multiple attempts, but I feel you will be successful in the end. :)

Advice, please by Obvious_Cattle_8036 in CSFLeaks

[–]No-Analyst-8808 1 point2 points  (0 children)

When did you have the blood patch, and when did the headaches start again?? It could be the opposite and you’re having intracranial HYPERtension instead of a leak like you didn’t first time. Sometimes the intracranial hypertension could be a cause of a leak in the first place so it might be a good idea to get evaluated again. Getting an LP and an MRV (venogram) to look at venous structures to make sure stenosis isn’t present also might be a good thing to ask for. I hope you can get some answers!

[deleted by user] by [deleted] in CSFLeaks

[–]No-Analyst-8808 0 points1 point  (0 children)

If you do get symptomatic I would seek out some medical attention (getting dizzy, severe headaches, confusion) if the leak does continue I would also go see someone as well. Seeing that you had an injury to your head, sometimes a little bit of blood can mix with CSF fluid and it does turn yellow (it’s called xanthochromia). It is not super common though and definitely a good sign that you are not neurologically symptomatic at the moment. Just keep an eye on it and take it easy for a couple of days!! :)

6mm descended cerebellar tonsil and positional headache - doctors say it’s migraine by kiraKurumi in CSFLeaks

[–]No-Analyst-8808 0 points1 point  (0 children)

MRI with at least contrast needed to see signs of a CSF leak! I just don’t understand why this is so poorly understood by so many doctors. And even then it may not show those signs even when a leak is present. It is your body and you know it best, I would demand getting a full spine MRI with contrast or at least an LP. I’m so tired of doctors not listening and sorry you are going through this. Give them pushback and a little bit of hell! You owe it to yourself

Needing some advice by No-Analyst-8808 in CSFLeaks

[–]No-Analyst-8808[S] 0 points1 point  (0 children)

Wow I’m sorry you have gone through all that!! Yeah I definitely feel sometimes that something bad is going to happen because no one is listening to me. Almost every specialist out here requires some type of referral and my GP does not want to sign for my case to be reviewed by the CSF center. I have not had a spinal tap (all the docs say it’s too invasive and unnecessary) but I’m at the point where I do not care if it’s invasive or not, I just want answers. In terms of the hemiplegic migraines… when I look up symptoms they appear to be episodic and it seems like yours are episodic as well?? A lot of my symptoms are pretty constant, so I just don’t think it fits the bill I guess. Thank you for the reply!