It’s been way too long since I updated here. I continuously struggle with balancing increasing pain and muscle spasms that go all the way up to my neck (no good!) from thoracic outlet syndrome from typing and scrolling with researching and keeping up with this and the Facebook group. It’s a no win situation 
My surgery is in just under one month with Dr Hepworth. I did the catheter angio venograms with Dr Fargen toward the end of last year. He found more compression points than expected, but interestingly a lot of the compressions, even those that he labeled “severe” did not necessarily significantly impact flow. As far as compression types of Eagles, these doctors are now starting to say that the gradients is less important than they first thought it was. I think the theory for someone like me is that my collateral veins are so large that they take on, at least when flat in the test, what the jugs can’t handle. But that the collaterals themselves are a cause of issues (sure hope they are to me!). He also did find complete occlusions of both jugulars when in flexion (looking down) which explains SO much of the pain I get in the back of my neck and base of scull when looking down (again, I hope – otherwise it’s instability), so I am very hopeful.
What blew me away most however was that I was discovered to also have intracranial hypertension. When I last had an LP done, which was maybe six months into the explosion that made me have to stop working and led me to where I am today, the result was 9cm of water. Well now it was just under 30. And while no single area of compression had a really large gradient, because there were so many areas, especially on the left side starting close to the heart in the brachial cephalic vein, the total resulted in a fairly steep increase from the heart to the top of the head.
Speaking of my friend, the ol’ left brachiocephalic, I am very very lucky. I have what Fargen labels as “severe” (his highest “rating”) compression there, but my beautiful system created a collateral vein above it that shoots off to the right brachiocephalic vein and is fat enough to result in just a small gradient. How cool it that?!
Dr Fargen talked with me about the possibility of a shunt versus styloidectomy and jugular decompression. He was straightforward and said that in his experience more often than not styloidectomies and jugular decompressions result in the vein collapsing again on itself. I think the theory is that the vein has been crushed for so long it’s just too weak on the sides. And so it can open up nicely in surgery, but then it just closes in on itself with the lightest pressure from the elements around it once closed (which can happen fairly soon or many months, even a year, later). He said in these cases patients go on to need stents. He also shared that while a shunt may end up proving to be the way that we go in the end for me (draining excessive csf fluid to get it down), pretty much all shunts end up failing. And they all almost always have problems before that. Shunts suck he said. He agreed with Dr Hepworth that the best place to start is with the left styloidectomy.
So I’m a go
Got to admit I am a balance between being optimistic and looking forward to it on one hand and then in the blink of an eye terrified and wanting to cancel it. The emotional turmoil is quite a bit. Too much.
I’ve also read enough posts from people here and on the Facebook group that have been through surgeries to know that there really is an array when it comes to recovery time and to post surgical pain and length and so it seems the right thing to prepare for a rougher scenario in terms of having everything ready in the house to make it easy for my husband to take care of me if I end up pretty much useless for awhile. And that brings on its own amount of stress. Especially when every individual task that I do seems to take 10 times longer than it should and fatigues me as much as it does, and has me do things with my hands and arms that again trigger more TOS+ symptoms.
Hopefully, I’ll come out of surgery and in a fairly reasonable amount of time realize that I have over prepared😊 that would be a great outcome!
No questions for me at this point, I just wanted to pop back in here and give an update and no doubt I will be popping back in with some actual questions either near surgery or afterwards.
Thank you again for being such an amazing group. Thank you so very very much to the incredible moderators here that make all of us feel like friends, and several of the patients who put a lot into helping those of us newer on the path.
