Soooooo. I just had my follow up Ultrasound and saw Dr. Hepworth. The news is not good. Apparently my jugular has slammed back shut. “Chronic, occlusive venous scarring of the left jugular from C1 to the foramen.” Which is why I’m still symptomatic. Dr. Hepworth was very transparent in his disappointment, which I appreciated. He said my two choices are to stay on blood thinners basically forever, or to get a stent. He wants me to have it done in North Carolina, with a Dr. Kyle Fargen.
I’m obviously really disappointed. The good news, if there is such a thing, is that apparently what he did in June – getting rid of all of the “gristle” around my jugular, would have been necessary for the stent regardless. So the surgery wasn’t wasted or anything. But not excited about flying to NC, figuring out who’s going to take care of Dad, figuring out who’s going to take care of me, and going under the knife again. At least they aren’t cutting my neck open this time!
He also thinks I have EDS. Which my brother is questioning. But I figure the current problem is just my blocked jugular. We can figure that out later.
So, anybody had a stent? How did it go? Did it relieve symptoms?
I am very sorry to hear your worrying news. I guess it’s good you know what is wrong now and what your choices are.
I have not had ballooning or stents in my JVs yet but May do so if they haven’t opened properly after decompression. some of my medics have mentioned these options to me.
I think using stents in areas of the skull that are protected and don’t move too much is a well established & widely used solution by neurosurgeons. Using stents in areas that move a lot (eg necks) can be more problematic but I’m not certain about that as not spoken in depth about that yet. I imagine from C1 upwards in to skull is fairly stable area as neck movement largely occurs below C1 level.
As for EDS unless your other body joints are hyper mobile (eg bending thumb so much it can reach close to hand), it may not be EDS and perhaps you just have CCI issues (which in my case was caused by bad fall not EDS). As you say that question can probably wait until you solve your most pressing health issue.
Will keep you in my thoughts and hope you get the help you need soon. I understand your caring responsibilities, but if you don’t take care of your own health, you won’t be able to care for others. Good luck. D
So disappointing for you, but going for the styloidectomy sounds like it was needed, & like you say scar tissue was removed so the op wasn’t a waste of time.
I was warned of possible effects from stenting, but luckily didn’t need it…however several members have posted research articles which mention successful styloidectomy & venoplasty/ stenting at the same time giving very good results. Here’s a link to one @TheDude posted: DA ZHOU et al. (2018) - Understanding jugular venous outflow disturbance - General / Research Papers - Living with Eagle
There are other papers I think too which you could look at. Not sure about others having stenting done- @Chromechaser66 had stents without styloidectomy & that didn’t work, another member had stents but regrowth mangled them…
It’s something which does need careful thought as they can’t be removed, but equally staying on blood thinners isn’t great either. Sending you a hug
Hi Bopper, sorry to hear your still
Struggling!. So you had your jugular veins ballooned and they have now shut closed again? Omg I didn’t know that could happen once opened😢. I had a styloidectomy Sept 2 with no relief yet of symptoms. I’m thinking g they need to be ballooned yet. I hope you get relief some how!
Thank you. I’m beginning to realize this decision probably isn’t a slam dunk, and needs some careful consideration. I don’t love the thought of a mangled stent hanging out in my jugular!!
@Bopper, I’m so sorry for your setback. It’s good that your brother is a doctor & can help provide you with info that helps you make an educated decision about what your next step should be. Though stents can be helpful, they sure aren’t fool proof. Would trying another round of ballooning offer any chance of reopening the IJV or is that something that’s only done once?
Which vascular doc did you go see? I also see Dr. Hepworth so assuming maybe it’s Vascular institute of the rockies? I can’t remember my vascular surgeons name, but he told me he likes to try ballooning twice in the area (twice post surgery, so 3 times total) before trying a stent. Sounds like that might be hard for you and I know it would be such a pain- but just wanted to pass along what he told me. I’m likely also going to have to get another balloon. Waiting for some CT scans/ultra sounds to come back, so I totally get how frustrating it is. Hang in there!
@Bopper
Well, this stinks (insert big sigh here) I am sorry. Something to think about - have you ever in your life had a traumatic fall or crash where your head impacted while turned? This could be an underlying cause of C1 C2 instability hidden over the years by compensation. It is rare but this is exactly what has fallen on my plate (no EDS). My C1 was literally stuck in a rotated position for ~15 years after a mountain bike crash. I could not have it mobilized into a corrected position due to vascular sx’s in the pre-manip position … until I had bilateral styloidectomy. I had it corrected which unmasked AAI (rotary subluxation and instability of C1C2). This was just diagnosed with a cervical CT, images taken with my head in neutral, full right and left rotation. I can discuss further in a direct message if you would like.
Dr Fargen is the best in the country for this evaluation. He will be direct and forthright.
Hang in there - keep looking, the learning curve is steep but you can do this!
Yes, VIR. I believe Dr. Annest was in surgery with me, but I don’t recall ever meeting him when I was awake. My pre-op appointment was with a different doc, Dr. Ur. who left them before my surgery happened. Interesting that Dr. Hepworth didn’t mention trying the balloon again. He wants to go straight to the stent.
The only reason I spoke with a vascular surgeon post-surgery was because I had a few questions and called there after (they’re notoriously hard to get ahold of). Who knows, maybe because of how closed yours was Hepworth just thinks it’s best to go straight to stent. I don’t have near enough expertise to speak on it- just what the surgeon told me would be his next steps if my jugular had closed again.
Oh my gosh, VIR is the most fascinating combination of fabulous doctors and TERRIBLE administration!! My follow up US was supposed to happen as 6 weeks, but I was never told that and nobody called me, so it didn’t happen until I asked for it at 12 weeks. And then the appointment was made, I showed up and they had no appointment on record. Fortunately they fit me in. Mine is definitely WAY closed. Velocity is ZERO cm/s. So I guess maybe too closed for another balloon. I don’t know.
Are you saying you had your C1 rotation corrected? I believe I’m in the same boat… Wondering how that impacts having surgery and then what to do after surgery for C1…
TIA
keep looking, the learning curve is steep but you can do this!