Hi all,
I am having a really hard time deciding if I should proceed with decompression surgery. I have bilateral IJ compression, duplicate left internal jugular vein (both appear compressed). I suffer from severe, debilitating headaches, tinnitus, and insomnia.
I have seen some success stories on here, but honestly they seem limited and I’m worried that surgery will only cause more issues for me.
Can you share any success stories with improvement in headaches?
Thank you,
J
Good morning,
What I was told by the very wise @Isaiah_40_31 and @Jules was that people who are feeling better post surgery don’t often hang around the forum so we don’t always get to know their stories. I think it’s good to be cautious as it’s not a given that the surgery is the answer for everyone. That’s why surgeons, such as Dr. Nakaji, are trying to sort out which presurgical testing can identify the best candidates with the highest likelihood of success. The symptoms you mentioned could be due to IJV stenosis or many other problems. It’s all very frustrating. For myself, it was the IR angiogram with manometry that suggested I would benefit from the surgery. I had a very high pressure gradient across the stenosis (C1) all the way to the superior sagittal sinus so clearly the stenosis was impacting pressure in my brain.
I had suboccipital headaches, brain fog and other cognitive changes and extreme fatigue that have all improved since my surgeries (July and October 2024). My headaches are completely gone. But prior to deciding on surgery I did try pain management nerve blocks, dry needling, PRP injections and Emgality (a migraine medication). None of those things worked but I needed to try them first.
I am now a couple of months post my second surgery and I feel like I have my life back. The cogitive changes are going to take some time to fully improve but I feel that I am already about 70% back to normal.
There are 3 things that have not changed at all and those are right-sided pulsatile tinnitus, aural fullness and constant dizziness (more like floatiness). While it is possible that those things cold still improve with time, I am of the notion that they are being caused by something else. It could be SCDS which can be caused by IJV stenosis so there might be a connection. I will be starting the next journey of sorting that out early next year with the UCSF Balance and Falls Center and a neuro ENT, Dr. Sharon. I would love to be free of these 3 things but I can live with them if there are no answers or no solutions. The cognitive decline from the IJV stenosis was robbing me of my life and I am so grateful to have that resolved.
I hope that helps you a little. I’m so sorry for your pain and suffering.
Thank you for sharing that @Chrickychricky and for still being here encouraging others 
I’ll pray that you are guided to make the right decision @jsisto 
I’m a little early to report on the final outcome, but I am just about six weeks out from right-sided jugular decompression surgery (and sinus surgery) with Dr Hepworth. I felt immediate improvement in my high pressure symptoms. Unfortunately, I’m dealing with a spinal CSF leak that swung me in the opposite direction into low pressure, but I can say that the recovery from surgery has been surprisingly easy and I feel like I’m on the way to getting my life back.
I also can say that one downside to all kinds of medical support groups, whether in person or online, is that the people who spend the most time on them are often the sickest people or those who have had poor outcomes from surgery. This can give newcomers an inaccurate impression of the success of treatment for most people. That’s why it’s so important that people who have successful outcomes stick around long enough to let people know how you’re doing.
Also, I think it’s important to remember that this is new medicine and outcomes and techniques are continuing to improve, especially as the top doctors continue to refine and develop “best practices”.
Wise words @jrodefeld , do you feel it was worth having the surgery?
Definitely worth it. At this stage the sinus surgery has maybe made the most difference.
The jugular decompression has made a big difference but it’s swung me totally into low pressure. It seems to have uncovered a pretty substantial spinal CSF leak.
My current theory is that I likely had a CSF leak in my spine first, then developed jugular compression and thoracic outlet syndrome due to postural compensations for low pressure. Then the venous congestion “normalized” my pressure so nobody figured me out this whole time because the signs radiologists look for to diagnose either were absent due to my mixed presentation.
The sequence of events is that I had low back surgery, a microdiscectomy for a herniated disc at L5/S1, and developed symptoms of intracranial pressure issues and vascular compressions about 8 months later.
I’m speculating that the leak was small and didn’t cause drastic symptoms at first, but as I ramped up activity months later it started getting worse, and my posture started shifting to compensate for the low pressure symptoms.
I later found out that I had prominent cervical ribs and a larger than normal atlas which means that relatively minor postural or alignment changes can cause vascular compression of the jugular vein and thoracic outlet. When that happened, all my symptoms got much worse.
So, my situation is more complicated but I know that I had to fix the jugular first in order for it to be safe to patch the leaks. So I don’t currently feel great in terms of my head pressure, but I feel awful in a completely different way. Which is actually encouraging.
I have a tarlov cyst at S2 which could very well be the site of leakage, or it could be causing CSF circulation problems and need to be fixed even if it isn’t leaking.
There is also some evidence that sacral tarlov cysts can be involved in a tethering of the spinal cord, because the filum terminale ends in the sacrum and the cyst can cause a traction that could make any brain sag worse.
More stuff to deal with but making progress1
@jsisto, It seems no matter what type of surgery one is considering, there is always a risk of failure that goes along with the hope of improvement. I completely agree that the risk of surgery making symptoms worse is scary. It’s my personal feeling that if the surgery is done by a surgeon who has a lot of experience w/ the particular surgery one is considering, the likelihood of a good outcome is substantially higher. I also agree wholeheartedly w/ what @Chrickychricky said - …people who are feeling better post surgery don’t often hang around the forum so we don’t always get to know their stories."
We have members who’ve interviewed the top vascular ES surgeons in this country & have gotten contradicting diagnoses/surgical approach suggestions which adds to the confusion of what to do. It’s my opinion that there is more than one way to approach vascular ES so choosing the doctor whose approach seems most practical in your situation as well as with whom you felt most comfortable during the consult is a good way to go. Gut feelings should not be ignored. I think we all have some level of personal intuition when making this sort of decision.
In my case, my symptoms (non-vascular ES) were bad enough that the risk of surgery seemed less scary than having to live with the symptoms I had. My decision paid off. In most bilateral cases of VES, it seems that both IJVs need to be decompressed for the best results even though the surgeons often say one open IJV is adequate.
ES surgery is often the first step to uncovering other health challenges as @jrodefeld noted. Getting one problem put behind you can be helpful in defining what needs to be dealt with next.
Very complicated for you, it makes sense what you’re saying about the spinal surgery & the cyst leading to low pressure, then the postural changes leading to IJV compression…I think my ES became vascular after doing more exercise & then getting a prolapsed disc C5-C6, so maybe that slight shift in my neck coupled with the exercise created the extra head pressure. I was lucky and never had a CSF leak or needed a complicated decompression surgery, removing the styloids was enough…
I hope that you’re able to address some of these other issues soon & that 2025 sees a return to good health for you