CSF Leaks and vascular compressions. What are people’s thoughts?
I’m scheduled for a blood patch December 5, and expecting I’ll probably go into high pressure from that. I’m wondering how people are thinking about how CSF pressure pressure relates to NCS, Eagle, MALS, SMAS, etc. What are our thoughts on how these systems interact?
I know migraines are associated strongly with NCS, which makes me think NCS increases Intracranial pressure. But I have NCS and it’s probably low, or vacilates. Perhaps it caused high pressure, which caused a leak, which now presents at slow or alternating pressure.
Based on imaging, Dr. Hepworth feels strongly I’ve been under high pressure at some point and for some time, while my CSF Leak specialist (Callen) sees only evidence of low pressure. There’s so little communication between these specialties, and so little information about how tweaking one part of the system can affect the rest!
I can’t really comment on all your questions as I don’t know that much about all your conditions, so can only comment on experience of ES & what other members have found. Do you have Vascular ES, have you had investigations for this?
…if your intracranial hypertension has caused CSF leaks you can then be found to have intracranial hypotension as your leak specialist found. If the hypertension is caused by ES & IJV compression (which is quite common), then this can cause a leak, so if you have a blood patch while you still have compression by the styloids, the patch will likely fail again & you’ll have another leak. Ideally the cause of the intracranial hypertension needs to be treated before trying patches; Dr Hepworth usually removes the styloids to stop the compression, then repairs leaks.
Here’s a link to a discussion you might find helpful: Possible jugular compression, CSF leak, intercranial hypertension. Advice? - General - Living with Eagle
I hope this helps a bit with some answers, I’m sorry that you have so many difficult medical conditions
And this is the video @vdm posted about the CSF cycle: Cerebrospinal fluid - function, production and circulation - animation by Dr. Cal Shipley, M.D.
Out of interest, as I don’t know anything about NCS, how is it diagnosed, & how would you be able to know it’s not a syncope from a vagus nerve issue or carotid artery compression from the styloids for example?
I have had styloidectomy and jugular decompression by Hepworth on the right side. I’m a little worried about gong into high pressure because the left side is still not so great. I’ll discuss with him tomorrow.
NCS is a complicated diagnosis based on symptoms, MRIs, ultrasounds, and venograms. I don’t know that anyone has studied its relationship with CFS leaks, though a few have discussed it in relation to headaches and cranial hypertension.
At this point I’m thought to have jugular Eagle Right side treated) and abdominally, NMALS, NCS, SMAS, mild MTS and according to Scholbach, an additional compression at the vena cava. So with all this potential back pressure in the cranium and abdominal system, I’m wondering how that impacts the CSF pressure.
Let us know how you get on with Dr H tomorrow, if he feels that the left side needs to be done also…we have had quite a few members who have needed both sides to be done before the IH is resolved, especially if their more dominant IJV is compressed, although it sounds as if you know more than I do about it all!
You certainly have a very complicated vascular system, Dr H seems to diagnose and is very aware of the whole body & not just head/ neck, so maybe he’ll be able to give you some answers?
