MRI images

I also suspect there could be narrowing at your left brachiocephalic vein (BV) where the left jugular vein joins it. Again without fully looking at CTV, one cannot conclude easily what is causing the compression down below but there appears to an issue there which can explain why your Left IJV and left EJV are engorged probably due to retrograde blood flow back to the head due to compression around the chest cavity.

Your right Jugular vein appears to be the dominant one so it is not affected by this.

Yellow arrow point to the area of the narrowing or occlusion in the left Brachiocephalic Vein.

BTW, CSF leak is known to cause hearing loss, also retrograde blood flow due to compression can cause hearing loss as well as it can cause venous congestion in ear drainage system.

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Thank you. I’m honestly so fed up with it all as I am so unwell. My dementia symptoms are severe and I am scared and relying on a blood patch to fix everything. NHS appointments are few and far between and all phone calls. I’m guessing this is all connective tissue disorder related.

I can try and email you the dicom file but not sure who is going to listen to me that can help with it all.

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It is fine, get the blood patch and see what resolves for now. CSF leak can cause reversible frontotemporal dementia type symptoms. After the blood patch, do whatever you can to get CATHETER ANGIOGRAM/VENOGRAM to assess your vascular system. It is the gold-standard. This way they can see all your venous system and artery system and can pinpoint where the blockage or narrowing is. I agree with you. Your problem is vascular and it can be found through this method.

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It is so frustrating with the NHS as it is, and not even paying for private testing & treatment seems to be getting you anywhere. Sending you a hug and will pray that the patch helps somewhat and you can take things from there :hugs: :pray:

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Hi @kel34ban,

I wanted to wait and see your CTV before putting this out there. I suspected based on your MRI that the mass I circled earlier is a large arachnoid granulation blocking the dominant right transverse sinus. With this CTV I agree with @KoolDude as this appears to be a transverse sinus problem and not IJV related.

@KoolDude is also correct in suggesting the catheter venogram as the best possible diagnostic test for this specific issue.

I know you tried Dr Mo Faris, but I looked around for someone that is part of the NHS that deals with Venous Sinus Stenting (VSS). Try Dr. Jeremy Madigan’s office and see what they say Dr Jeremy Madigan Interventional Neuroradiologist (INR)

The good news is that venous sinus stenting is actually a less invasive surgery (in regards to not cutting you open) and standardized when compared to IJV or styloid removal surgeries.

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Thank you for all the information. It was a neuro interventional radiologist who reported on the ctv scan so why did he state that the venous sinuses are unremarkable? Surely he had to report on it even if Dr Timothy doesn’t treat it.

I’m not sure I will get an NHS referral as my gp will not listen to me but the report that came from Dr Timothy. His report states I need a rheumatology referral for EDS (NHS do not diagnose EDS so pointless) He also states he doesn’t believe there is a problem with the veins and suggested second opinion from a neurosurgeon.

I keep seeing the wrong Drs and it is not good. I know there is an issue lower down also and the vascular surgeon who deals with TOS I’m guessing doesn’t deal with above the neck. I’m honestly failing to bits and feel so weak and fatigued 24/7.

I have sent an email to the nhs secretary of Dr Madigan but my gp will not refer me due to the report stating clear :weary: which is understandable.

Thank you for all your help and advice.

I can probably get a private review with the neuro interventional radiologist who reviewed my CTV scan originally but do I really want to do that if he reported unremarkable?

We should be able to trust these people and so far I’ve been failed by both private and NHS making me feel like I’m crazy.

Just a question about the jugular compression. My styloid is angled and I have less symptoms lying down. When I am upright and moving my head surely this is compressing my IJV against my C1?

My dementia symptoms are so severe that I am scared it’s not reversible. Any of these issues could be causing my symptoms. If I have an issue with the venous sinuses then I suspect this blood patch will make it worse :weary: family and work colleagues are expecting me to be fixed and well with the blood patch. They think I am just being negative but they do not understand the other issues going on and neither does my neurologist because I can’t get an appointment. If I did get an appointment he’d want the report which is unremarkable :weary:

Why is nothing straight forward

.

Also who would request a catheter venogram?

Thank you

I’m really sorry no one has taken an interesting in pursuing your case & helping to find what’s causing your debilitating symptoms. That’s discouraging. It’s definitely easier to dismiss what isn’t obvious than to dig to find an answer. I’m sorry the medical system more consistently goes the dismiss route. :cry:

Getting a private review with the NIR isn’t a bad idea especially if he’d re-evaluate them for the things that have been suggested to you on our forum & go through your scan images with you to discuss what he sees. I would hope he would take the time to explain to you why he feels your images are “unremarkable” when you feel so awful, unless the scans don’t cover the area(s) where the compression exists so he truly doesn’t see anything. I’ve learned that some of these doctors won’t note an existing problem unless it’s severe. They tend to ignore milder versions (& label them unremarkable) though they can still cause debilitating problems for patients.

The IJVs drain the brain when you are lying down & other veins (vertebral venous plexus) drain it when you’re upright, but it’s definitely possible your styloids are pinching the IJVs more as you move your head when up & around.

Would your neurologist be willing to pursue further testing since the NIR report seems normal yet your symptoms are so bad? If so, it might be worth it to see him to ask for further help getting a diagnosis.

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They should have seen it, but possibly it was overlooked because the focus was on the jugular veins. Also the tech that did this scan got the timing really well to highlight the contrasting agent in the IJVs, but unfortunately the transverse and sagittal sinuses are not as well defined as a result.

I had a similar problem with a radiologist when I had my contrast MRI (MRV). I was concerned my interventional neuro (Dr. Patsalides) would not accept my case for consultation without something being in the report. I called the radiology facility up and told them there was no remark on the very small right transverse sinus could they please take a look at that area. They amended the report.

So maybe you can try that because your transverse sinuses are definitely very restricted. I can’t see how they can report that as “unremarkable”.

Possibly if nothing else works, let’s see what the blood patch does for you first.

If you don’t mind let me take a look at the scan. I am not a doctor or a radiologist, but I will try to highlight that area more and compare to a few other CTVs. I will send you my email. Also, see how far you can get with Dr. Madigan taking you on as patient. Just ask them if he or one of his associates can review your CTV scan for restricted transverse sinuses.

This is tough as its a mini procedure and has to be done in a hospital. It would be the next step for someone like Dr. Madigan once accepting your case. Unfortunately there are probably only a handful of hospitals and interventional neuros in the UK that do it.

But probably any neurologist or neuro radiologist could put in an order for one.

Maybe, but it probably has a good chance of making you feel better. Even if it’s temporary, it will tell you a lot about what’s going on. Orthostatic headaches that get better when you lay down are a classic sign of a CSF leak. However, I agree with you that there is a reason behind the CSF leak and looking for venous obstruction as the culprit is valid.

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