Did Dr Hepworth do your surgery?
If a CT Myelogram was negative, you may have a CSF- venous fistula which often can’t be seen on conventional imaging. You could ask for a digital subtraction myelogram which is the most sensitive for finding them.
I would say that if you swing into low pressure following jugular decompression it’s a good sign that the surgery worked.
But the low pressure symptoms can be very debilitating obviously.
Hope you can get help soon.
Yes, he did the surgery.
I was scheduled for at CT myelogram and DSM last week at MAYO, but cancled. Dr. Hepworth was not in favor of me doing another one, as it can cause the leak they are looking for and I have a severe issue from the dye from last time.
So, I dont know where this leaves me?
What did Dr Hepworth recommend?
Nothing at all
Maybe you could try to have a blind blood patch to see if that helps?
You should definitely press the issue with Dr Hepworth if you aren’t improving. If you genuinely have a CSF leak and it’s not resolving on it’s own then you have to do something about it.
Hang in there!
I am just so confused about what to do.
MAYO basically things there is very little chance I have a leak, Hepworth thinks I do and both of them tell me the other doesn’t know what their talking about.
I am so weak, mentally and physically, I can even stand to do the testing for a leak or fistula.
I’ve had one blood patch before and it didn’t help, so I just don’t know?
Then throw in nutcracker and PD and it is impossible to make a good decision.
It’s easy for me to say, but I’d trust Dr Hepworth more, I’m UK though, so obviously haven’t seen him…Mayo don’t treat ES, so that would make me wary of them…so hard for you to know what to do, and to travel anywhere 
I know. I believe I have a leak/fistula in my spinal cord. I get a bad headache an so dizzy after standing for a few minutes. Have to lay back down to get any relief.
To me that sounds like a leak, but don’t know if ES can do that.
I agree, that sounds like a leak…With IJV compression by the styloids, it can increase the pressure in the head & I would presume down the flow of the CSF in the spinal cord. If there’s a weakness, the high pressure could cause a leak. Now that you’ve had the styloid removed, the leak will then cause low pressure until it heals by itself or is healed with an intervention like a patch. Others know more about that than me though- @jrodefeld is going through this too.
Just for clarification, it sounds like her leak was crainial and mine is in my spine.
Cranial leaks don’t cause issues like a spinal one does.
The spinal ones cause the major symptoms like orthostatic headaches, etc.
Because the leaknis below your head, it causes the volume and pressure issues.
Seems like you would benefit from working with someone who specializes in identifying leaks. Stanford has one of the few CSF leak centers in the country. Stanford Headache Program | Neurology & Neurological Sciences | Stanford Medicine
I ve been to several already.
No luck.
I don’t think there are several who are experts at identifying leaks.
I know, been to or had my case reviewed by the top 4.
I had my follow-up telehealth appointment with Dr Hepworth today. He also was in favor of postponing any additional imaging to look for CSF leaks due to the risks involved and the fact that things may settle down further in the next six weeks.
He will be ordering an abdominal CTV scan to look for abdominal vascular compressions in the meantime.
I had a theory that maybe I had a spinal CSF leak first due to low back surgery I had many years ago, which set off the chain of events that lead to vascular compressions in my neck and chest. He thought this was plausible and also thought that the tarlov cyst I have at S2 was possibly a significant contributor to my problems.
He told me that statin drugs can cause issues with brain function (I don’t remember exactly the reasons) but he recommended I start CoQ10 to counteract this effect.
Luckily, I don’t have to travel to Colorado for the imaging, since he will send the order to my primary doctor and I can have the imaging done here.
He told me to schedule a follow-up appointment in six weeks and we’ll review the CTV and talk about the next steps.
I’ve actually been established at Stanford with Dr Carroll and have a follow-up telehealth with him in February, shortly after I have my next appointment with Dr Hepworth.
Thank you for the update, @jrodefeld. I’m glad next steps are in place to continue to try to help you get full resolution of your symptoms. It seems many of our members have serious comorbidities some of which don’t show up until ES is dealt with & others that have symptoms that are so mixed in w/ those of ES it’s hard to know what is causing which symptoms.
I hope you continue to notice improvement from your decompression surgery & future scans are able to help isolate what’s left that needs to be taken care of.
I’m glad that you don’t have to travel again, and I hope that things do improve for you…interesting about the statins! Hopefully the abdo CTV shows what’s going on…take care and hope that you can enjoy Christmas, praying that your symptoms improve
I was reading on your profile that you also have Nutcracker? Can you try to get to Mayo Clinic in Florida to see if they can evaluate you for that. There are some people who have severe headaches due to Nutcracker and Mayo is looking at embolizing the lumbar vein to help treat the headaches.
I was turned down at MAYO Florida. They said I was too far gone. I was supposed to gonto UW, but they called two weeks ago and said I wasntoo Ill to even do testing, so turned me down.
Just got backnfrom MAYO in Rochester, and it was a total bust.
So sick from the surgery, I can’t even make it back to hepworth to find outvwhat wen’t wrong.
Thanks
It seems wrong to me that a medical facility of any type would turn a patient away because they’re “too sick” for evaluation or testing especially when that’s the only possible way the doctors/patient will discover what the problem(s) is/are so they can be dealt with. Is there anyone who can advocate for you with the two places you just mentioned to help you get an appointment? When we’re ill we can’t stand up for ourselves as well as someone who is healthy can. Some medical insurance companies have patient advocates, & there are organizations that do patient advocacy. It would be worth it to look into that & have someone who can be more forceful go to bat for you. NEVER take no for an answer. Keep fighting for the testing & care you need with whatever strength you have left.