HELP (images now uploaded in comments)
Hi thought I’d start with uploading images before going into detail about the hell I’m going through 
Not sure if I have jugular compression? I am being investigated for a csf leak but definitely something vascular going on.
Any advice appreciated
Kelly
Can’t upload images 
Welcome to the site!
The format doesn’t allow members to upload images straight away, once you’ve posted a few times the trust level goes up & you can! Have you ever had a CT done? Those show styloids better.
Hi
No I’ve had MRIs for memory issues then again after suspected TIA and just had full spine and brain with contrast to look for csf leak (not reported on yet)
I have looked at my other 2 and I’m
Sure I can see IJV compression. I have visible signs also with my veins that something is wrong.
Does my reply count as another post?
Thank you
Yes! @kel34ban. You should be able to post your images now.
Jugular vein distension that pulsates. Not visible when upright. I had an ultrasound yesterday lay down that was normal. I’m getting oedema and severe pressure in my head when I lean forward and sometimes when I lie flat. I have been unwell for a long time with orthostatic headaches, dementia symptoms and severe fatigue. I know I had some sort of stroke in July but was told my mri was normal. I was super fit athletic and began to feel pressure, breathlessness and dizzyness whilst working out. I am being investigated for csf leak after going private. Was told it’s psychological by nhs neurologist and to go home and stop looking for answers. I have no quality of life. I am a single mum of 4 children and I have been off sick for most of this year which isn’t me at all. I am a specialist podiatrist for the NHS and I can no longer function to do my job or look after my children. Sorry to go on but I’m desperate to get better and be back to normal.
Brilliant thank you. My images are in the comments so hopefully someone can advise as not sure I’m in the right place. So many symptoms overlap with these conditions and so many drs dismiss it as anxiety
First off, I have to say that it’s tragic that you work for the NHS & get brushed off when you’re looking for help with a serious medical problem. You’d think doctors would “look out for their own” in particular. I’m also very sorry to hear that you’re so sick when you’re a single parent of 4 children. I can’t imagine how difficult that is and hope you have friends & family who are able to help you at this time.
I don’t know how to evaluate the images you’ve posted. A CT scan would be much more helpful since it shows the bony structures better & if done w/ contrast could allow us to see if vascular structures are being compromised. As you alluded to, head position is key in being able to visualize vascular compressions as they don’t always occur when the head is in neutral.
Your symptoms do indicate possible vascular compression of the carotid (stroke symptoms, breathlessness, dizziness) & internal jugular vein (brain fog, orthostatic headaches & severe fatigue). It all boils down to blood flow to & from your brain being inadequate. CSF leaks are often caused by intracranial hypertension which is often caused by the internal jugular veins being compressed/blocked. If it is discovered that you have a CSF leak, press for a dynamic CTA (head in different positions) & an MRV to fully evaluate the condition of your carotids & jugular veins relative to your styloid processes & upper cervical vertebra - C-1 in particular & also C-2. The most frequent scenario we see on this forum is the IJV being squashed between a styloid process & the transverse process of C-1. This can occur without the styloid(s) being elongated.
Mr. Timothy & Mr. Hughes in London are two names that come up on our forum frequently or Mr. Axon in Cambridge, so if you can travel, one of them would be worth seeing. Our member @PatientD has posted a lot of information about them. You can use the magnifying glass search tool in the upper right corner of this page & type in either doctor’s name to find posts where they are mentioned.
Thank you for your reply. I looked up dr Timothy but I have to pay for scans first which are thousands. £400 for a consultation and then surgery fees £12000+ it’s all so sad and unfair😢
My neurologist is lovely and after 1 consultation referred me to his NHS caseload but I’m lost on waiting lists to see him again. I hope he will organise some of the other tests but I’m not optimistic after reading on all the groups how much people are still struggling post surgery.
It seems all doom and gloom. I really feel like something bad is going to happen to me and that is not in an anxiety way, my body does not feel well at all. I’ve basically gone from athletic to invisibly disabled. Sorry to go on and thank you for the information.
Kelly
@kel34ban - To encourage you, many of our members feel the same as you do. Vascular compression causes horribly debilitating symptoms. Unfortunately, posts you read on the forums often make it seem like surgery doesn’t help much when it truly does. Those who have good outcomes, of which there are many, don’t stick around to share their success stories. They get on with their lives, & very few come back to tell us how well they’re doing. Those who are recently post op (recovery takes many months & up to a year or more) & still struggling w/ symptoms, or those who are still seeking the right doctor or are awaiting their surgery dates often post, updating symptoms & asking more questions. This weights the forum information in a negative direction as more unwell people are present than well. Please know that with the proper diagnosis, & when treated by an experienced surgeon, your symptoms will most likely be dramatically reduced, & you’ll be able to get back to living your once very active lifestyle. It can be quite the process getting in to the right doctor so perseverance is necessary. We’re here to help you persevere. I have been where you are mentally & emotionally. My ES surgeries turned my life around in a positive way. 
Thank you. I’ll speak with my neurologist when I finally get a review. Do you think I should leave the blind blood patch as guessing this needs sorting first. I’ll see what he suggests. I can’t afford to go private as will have no job soon as not fit to work I know I had a stroke in July but it did not show on the MRI or I may have got help sooner.
Does the surgery help dementia symptoms also as this is getting very bad. I’ve lost my personality and not in a depression way although I went down that route first thinking I was losing the plot.
Kelly
Poor you, it sounds really rough…I agree with @Isaiah_40_31 about the forum being more biased to those who are unwell or whose surgeries didn’t work so well. I had bilateral jugular compression & was starting to feel pretty unwell before surgery, but just getting one side styloid removed helped with those symptoms immensely & I felt loads better, pretty much back to normal after the 2nd side was done. I do feel for you though in that getting a diagnosis & surgery now is harder, especially on the NHS. I had quite a long wait but nothing like the waits now post Covid…
Certainly vascular ES can cause brain fog, I felt constantly a bit drunk & had to really concentrate at times to follow conversations etc. I think one of our Canadian members posted about having been tested & a mild impairment was noticed which was a decline for her ( @Andrea ) , it makes sense if not enough oxygen is getting into the brain or if the brain is under pressure I guess!
So frustrated that the Nhs is no doubt crying out for your skills & you can’t get treatment to enable you to work!
Re the CSF leak & blood patch, if you do have high intracranial pressure from compressed IJVs then the chances are it won’t hold, if it is compression by the styloids causing this issue then it’s best to get them removed fist or the leak will likely occur again.
Disgusting that a fellow NHS professional was dismissed by the neuro, I can understand that you feel down
@GCD could you look at these images (esp the first) and comment on her compression. First looks obvious but I can’t make out the others.
Orthostatic headaches would definitely suggest a csf leak, but there maybe something else going on here related to your veins as you have guessed.
There seems to be massively enlarged vein just behind your spinal column on the right side. It could also be some sort of mass that is vascular. You can see it circled in red in the image below.
Here is a CT angiogram of the back of my skull with the location of the vein that I think is enlarged(green circled vein)
You need to find a neurosurgeon or neuroradiologist to look at this scans. Regular neurologists, just know how to prescribe pain pills and are not well trained at viewing MRIs as me and many of the people on this forum have found out the hard way.
If you upload your scans to https://www.dicomlibrary.com/ I can look for a possible impingement area, but ultimately this has to be assessed and treated by a surgeon.
Thank you @GCD )). Second that on neurologists… have not been helpful for most.
Sorry I have only just seen this now. I have been very poorly and actually feel like I’m going to die. I’m sure I’m having absence seizures on top of everything thing else I have also lost my hearing in my left ear an I’m completely deaf. Steroids have not helped. I was told by ta&e dr that I have mental health issues and too much medical knowledge and that there is nothing wrong with me. I refused to leave until I’d seen ENT and they confirmed I have sensorineural hearing loss. I cannot believe everything that is happening to me and how i am being treated (not treated) I am literally having to lie down all day but I know there is something vascular going on as I can feel it. I thought it was the vein on the left that was small as opposed to the right being big? All my symptoms are left. I feel there is something wrong with my left eye and swallowing also now And being deaf is scary is it a squashed internal jugular vein on the left image 3 with absence of glow void image 6? I have booked to see dr Timothy which I cannot afford but this is serious. He’s not free until March 24 
I will try and upload my files for you to view. Thank you so much, did you get fixed and are your problems similar to mine?
@kel34ban - many of our members who have IJV compression have felt as you do i.e. that they are dying. The symptoms can be so very TERRIBLE but so far have not resulted in death for anyone that I know of. The problem is greater if it’s the internal carotid artery being compressed as that can lead to seizures, TIAs & occasionally a stroke. Seeing Dr. Timothy is a good investment. He should be able to help you get a diagnosis. I am so very sorry for the way the doctors at A&E have treated you & misdiagnosed you. That is inexcusable. I’m glad @GCD has offered you help once your scans are available to him. I will pray for you. 
If I didn’t have 4 children I’d be paying for euthanasia The way I am living and have been treated is inhumane. I actually cannot believe how I have been treated and spoken to when I am so sick.
To top it off they are now using my profession and medical knowledge against me and saying I have mental health issues and I’m crazy I bet they don’t write how they speak to me in their notes! Up until this year I have never really visited a dr 
It’s madness! Sadly I will have no job to pay these medical costs because I am now housebound. Even private I have to wait until March
I have booked a private MRV at the spire as I have deteriorated and I wonder if I had a cvst when I collapsed in August with stroke symptoms. I’ve been housebound dince then pretty much. It is so much money to spend when I could be wrong but I’m desperate I really am. I’d sell my house if I can be fixed. I just can’t believe we are left to suffer like this and then given the crazy card.
I’m sorry I’m just moaning but I’m crying all day as my life slips away. When I thought things couldn’t possibly get any worse I am now deaf in one ear. That doesn’t sound a big deal but I already couldn’t concentrate or follow conversations due to symptoms and now I actually don’t even want company because I just need to lie down and rest.
MRIs read as normal when clearly not
