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.
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.
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.
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
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.
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 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 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
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.
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.
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.
I agree with @Isaiah_40_31 … The connection between EDS, ES, AAI/CCI. I certainly am not trying to complicate things further for you, and I am sorry that you are going through this nightmare. I completely understand the frustration and anxiety of feeling like your body is falling apart and you are so fatigued that you cannot do anything normal anymore. I have hyper mobility with AAI/CCI and vascular ES with IJV compromise. I do know that when my neck muscles are extremely tight, all of my symptoms have been exponentially worse. I recently started seeing a gentle upper cervical chiropractor, who has been helping to loosen my muscles of my trapezius levator scapulae, sternocleidomastoid, c-spine, and T-spine. He uses the shockwave wand, which I don’t know if they are using at physiotherapy clinics in Europe. But it is quite helpful. I experienced immediate relief after one treatment of muscle release, and the wand. You know your body… If you feel there is a muscular component and your neck muscles are way too tight, there is some thing that can be done about that other than surgery. I am not saying you would avoid surgery, but that you can get some relief until that time comes.
I also have Chiari 0-1 which has been asymptomatic my entire life until the AAI/CCI kicked in due to injuries. I get extremely fatigued and leg and feet weakness and numbness. I don’t recall if this was a symptom of yours. Radiologist say it is “normal”, but the cerebellum should not be right at the foramen magnum. I went many decades of my life with this causing no symptoms, but if someone has trauma to C0-C1-C2 it can start to cause symptoms.
@Psalm73_26 - You have a lot going on/going wrong in your body at the moment. Getting your vascular ES taken care of will definitely be one major layer of the onion. I’m sorry I don’t remember who you’re planning to see but I would highly recommend Dr. Hepworth as he has an understanding of all the things that have cropped up for you, whereas most, if not all, the other ENTS on our list are not informed or as well informed in such diverse health issues.
Thank you for asking.
Sorry I have not been on but I have been in a lot of pain post blood patch. It is day 11 since my patch and there is zero change in my symptoms and I now have back and nerve pain from the procedure. Im hoping this will settle and it has reduced in comparison to last week.
I did not expect it to be so painful so it’s sad that it has not helped. I was advised by people on the csf page that blood patches do not usually help ventral leaks, especially chronic leaks which mine is as I was not believed for so long😩 I have to wait for a review and be put on a waiting list for next test and treatment. Sadly as it is NHS I have no idea how long the wait will be.
Some people report instant relief after a patch. The consultant who performed the procedure said it was 50/50 if it helps and it might only help for a day or week. So far nothing and i’m yet to have rebound high pressure but I believe that can happen at anytime. There was no aftercare or contact for help so the csf leak support group page had lots of information on like this group. Thank goodness for these groups!
Was very upset yesterday as received a copy of a letter written by the a&e dr stating that he believed my sensorineural hearing loss in December was non organic in nature as I have anxiety I honestly can’t believe it and it’s another letter in my medical notes that is inaccurate. I need to complain when I feel up to it. It was upsetting what he has wrote and it’s the first thing drs read in hospitals
Sorry if I have not replied to anyone but I have been on bed rest and not feeling well at all.
I think my neck muscles have always been tight as I have done weight training all my life. It was my life and sadly another thing that I cannot do anymore.
I guess cci would make it more likely for the styloid to squash my jugular against c1 when I am upright and moving or holding my head incorrectly.
At the minute I am scared to try anything on my neck as I suspect my CSF leak is in my neck and thoracic spine.
The symptoms are so severe and I sleep and rest a lot. I do not have the energy for friends anymore as I feel like death and cannot concentrate to follow conversations. I also do not remember any conversation I have including on here which is sad.
Have you had any procedures for your issues and did they help? I feel I have that much going on and I now feel like an 80 year old woman. The difference in 12-14 months is unbelievable. I was this super fit athletic person and now I look and feel so weak and worn down.
I have been getting upset wondering how I will ever work again and even more so how will I work enough hours to survive. These conditions are so debilitating.
@kel34ban I am so sorry you’re going through this. I understand about your body feeling like it is falling apart, and the brain fog/dementia. Between my IJV back up and and the Chiari messing with my head pressure, my IQ has plummeted, and it is hard for me to have conversations. I can’t often remember basic words.
Even though I am not a doctor, I can tell from your pictures where you are lying on your bed and showing the sides of your neck… There is obviously something very wrong with the veins in your neck. They are engorged. So if any doctor is telling you, this is in your head, please understand they do not actually think this is the truth. They are covering themselves because they don’t know what to do and so they’d rather get rid of you as a patient than treat you.
I know this sounds hard to deal with, and it was for me too. Prior to these issues, I was extremely healthy and rarely got sick. My experience with doctors was the common cold, and maybe some antibiotics. So when I was dealing with real, significant health challenges, I learned how dark the medical community can be when they want to shut you out, because they are scared to treat you. But rest assured, there are still good, genuine, compassionate, courageous doctors who will help you!
So I would like to recommend, whenever you deal with one of your doctors, always have an advocate with you. This can be a friend or family member. I am not sure how healthcare works in your country, but you should be able to have a loved one with you to help speak on your behalf and advocate for you. Especially since you are having problems remembering and communicating. I highly recommend you have someone else there supporting what you are saying so that they cannot just write you off and say you are “crazy “ .
I will be praying for you and your children. I believe this can be fixed for you. And the reason I know that is because you went 44 years being very healthy, and this changed during a sudden incident with exercise. Something happened at a precise moment that can be pinpointed. I agree with the other members here stating you need to have the best testing for vascular you can have. I am sorry you have to wait for your tests and appointments. I will be praying, and my belief is that the Lord will never leave you, nor forsake you. just keep holding on.
I’m so sorry that you’re not feeling any better after the patch, I guess it was worth going through even if just as another hoop to jump through to rule things out…I’m not sure where you go from here, but am praying for you and thinking of you, sending you a gentle hug
I’m third in line but offer the same concern & caring thoughts as @Psalm73_26 & @Jules. This is a terribly tough period in your life, @kel34ban. I will also continue to pray for you & hope that some doctor will get to the bottom of this & be willing & able to help turn it around.
which is understandable.
