Hey, folks! I apologise that I have not been participating much for a couple of months! I have had several other health issues to tend to, and also lots of family and work stuff which has eclipsed everything else on the plate! And, now the symptoms have made it impossible to ignore. I have to say I am really disappointed in the team at St. Michael’s in Toronto. They were moving forward quickly with investigations and next steps etc. And, now it’s been 3 months and I’ve got nothing! I know most of us in here have had lots of frustration dealing with delays and slow processes. I guess I should not complain. I’m sure others have had much longer delays. It’s just that my last appointment in October left us with a definitive plan. I was to have a lumbar puncture to determine the extent of my intracranial hypertensive pressure. I guess “they” want to make sure there’s enough pressure in my head to warrant the recommendation for surgery. In the meantime, I am feeling all my symptoms getting worse and I have also (maybe unfortunately) educated myself on the significantly negative long term impacts of insufficient cranial drainage due to severe IJV compression….And, I am still waiting for my file to be updated and an appointment to be made for follow up and the lumbar puncture. - So, enough of my complaining! I guess I’m just reaching out to learn a bit about lumbar punctures and how effective they are for determining the need for surgery.
I have had a lumbar puncture decades ago because I had encephalitis. And, I have had several spinal injections for anaesthetic administering for various surgeries. So, I’m familiar with the process itself. I’m just wondering how it would determine the level of pressure when pressure tends to change with position etc. Does this really give the answers we need?
It’s a tricky one, as it’s not without risks, we have had discussions about this before, and a very good point that if IJV compression is the cause it might vary with head positioning… I was told I would need one, but when the doctor saw the bilateral IJV compression by my styloids on the CT I had, he was happy that this was most likely the cause & agreed a LP wasn’t needed, I wouldn’t have gareed to have it anyway!
I presume a dynamic CT venogram with pressure manometry as Dr Nakaji requests would be a more accurate way of seeing what’s going on, although that’s not without risk either. It’s frustrating to have to wait so long for a test which isn’t really going to alter the diagnosis & need for surgery…It’s another one of those hoops to go through… But a lumbar puncture could improve the symptoms of head pressure briefly…
Thank you for your update, @Deanna. Socialized medicine certainly has it good points & bad points. I’m sorry things were moving along so well then abruptly stopped. Does calling the office(s) in question to check in & get updates on the time frame in which you might be seen help? Doing so would at least let them know you’d like to know where you are on their list & that you’re still miserable & hoping for an appointment soon.
@Jules has given you good advice regarding the lumbar puncture. I will add that those can leave patients with a weak spot in their spinal cord which can result in a CSF leak later so that is one of the BIG negatives about getting them.
Hi Deanna!
I’m in the same situation. I’ve been waiting for my cerebral angiogram and ophthalmologist appointments as well from Dr. Pereira’s office…not as long as you though! I’ve been really ‘bugging’ them weekly, as my symptoms are also really getting worse. My vision especially and finally heard back from his receptionist who provided me with the number of the person who does booking. She told me that the angiograms are being booked far out - not until July right now so it looks like we’re in for a wait. 
I am in process of trying to save to go to Turkey to see Dr. Aghyev. I am hoping Dr. P will assist in an out of Country ohip form.
Thanks for your reply! I do find it interesting that not many people have actually gone the route of the lumbar puncture. I wish my doctors were as agreeable as your team was, with regards to understanding the root of the cause. I had a CTV last summer and the results were so glaringly obvious that the neurologist thought I should be in their textbooks! I think the problem is I don’t complain enough about my symptoms to them. I originally told them that if there is no actual negative repercussions to the severe compression et cetera that I can deal with all of my symptoms (which really seem endless, as you all know too well from experience!). At the time I knew nothing about it! I went home and educated myself and realised there are very serious negative repercussions to letting this go. - When all this was thrust upon me at my appointment in the summer, I felt like they were pressuring me to make decisions about treatment that I was not equipped to make, never having even heard of ES before! (In spite of countless doc a specialist visits over 2 decades!). They had me sign a consent form for the cerebral angiogram at the time, with the understanding that I could cancel if I wanted to. It was just meant as a time saver. That was supposed to take place in October. After going home and looking into it a little bit, having the discussion with my family Dr. and my family, it was clear that I was not a candidate for the angiogram as it would be far too risky for me. I called them right away and let them know. And I also let them know that I wanted to go ahead with surgery and they said that they will not recommend me for surgery, unless I have the angiogram. This put me in a difficult position. So, with my next visit seeing Dr. Vanek, she also agreed that I shouldn’t have the angiogram and said at that time, which was October, that she was writing up the report right then and recommending me for the lumbar puncture. And, yes, I have called them many times in the interim, asking about my appointment follow-up, the lumber puncture procedure, and also asking them to send my file and records to the surgeon who did my C1 C2 fusion. They said, when I was actually able to speak to somebody, that they didn’t have any info yet about the LP. And, they also refused to send my records to the neurosurgeon who did my previous neck surgery. (because my compression involves C1 and because I have had that fused, I really believe that it would be helpful to involve the surgeon who completed that.
)
Cut to 3 months later, and a long game of phone tag over several weeks, I finally heard from the correct booking office… and what they want to book me for is not an LP but the cerebral angiogram!!!
So, that’s where I am. I realise that this is like a maze and full of red tape and bureaucratic issues. But, I will not be going to the US at the moment considering the political landscape. I hate to say it but it terrifies me! So, right now, I am looking into other provinces while I wait to see if Dr Pereira‘s office can pull themselves together and come up with a reasonable path forward, within a reasonable timeframe.
If they can sort out the LP, I am not totally adverse to the idea of it. That is, if it leads to a positive solution.
I hadn’t thought about the fact that it might relieve some of the pressure, albeit, temporarily. That is a bonus!I think I would welcome any relief right now, no matter how fleeting it may be!
It’s such a crazy system having to deal with all that would be so stressful it’ll make your symptoms worse as well…what a nightmare, sending you hugs & prayers that you can get something sorted 
A snippet from this article as to why lumbar punctures are not a reliable diagnostic for VES: Life changing response to successive surgical interventions on cranial venous outflow: A case report on chronic fatigue syndrome
J Nicholas P Higgins 1,*, Patrick R Axon 2, Andrew M L Lever 3,4
Extracranial venous outflow obstruction has also been implicated in cases of spontaneous intracranial hypotension (18, 34). This condition, caused by a CSF leak, appears to develop spontaneously or following minimal trauma, giving symptoms that cover a spectrum of severity from postural headache, fatigue, dizziness, nausea, vomiting, blurred vision, and light and noise sensitivity, to enforced recumbency, cognitive disturbance, dementia, and even coma (9). The cause of these multiple symptoms is thought to rest largely in the distortion of brain structures that occur as a result of CSF depletion. Spontaneous intracranial hypotension, however, also has its perplexing features: the typical phenotype may not be accompanied by any radiological abnormality, and in some patients, intracranial pressure may be normal or even elevated (8–10).
This last observation, in particular, is difficult to reconcile with the historical view of spontaneous intracranial hypotension, defined partly by intracranial pressures less than 6 cm H20. However, the observation that the closure of a leak in spontaneous intracranial hypotension can lead to rebound intracranial hypertension (35, 36) and the knowledge that CSF leaks may accompany IIH (6–8) imply that spontaneous intracranial hypotension can often represent a complication of IIH, developing when the dura gives way to a weak point under the stress of prolonged elevation of intracranial pressure. In these circumstances, it might not be expected that CSF pressures would fall to very low levels.
Interesting that intracranial hypotension may not show up in a radiologic image. The second paragraph is a nice description of Spiky Leaky Syndrome i.e. intracranial hypertension causing a CSF leak resulting in intracranial hypotension, which, when the leak either self heals or is patched, causes intracranial hypertension beginning the cycle again. That’s why is so important to discover the cause of the hypertension & deal with that to help stop the high/low pressure cycling.
Thanks for the info from that article @Chrickychricky 