Jugular stents gone terribly terribly wrong - advice please!

[lwhite1027]

This is my first postthank you for letting me join your group. I do not have MS so I hope you do not mind me posting here.

However the past six months I have had stents inserted into my left and right jugulars. I have had nothing but serious complications, including a deep vein thrombosis in my left jugular and now I have come to find out my right stent is completely fractured and folded in on itself my left is crushed and both are completely restenosed (right 80%, left 65%) and thrombosed. I am seeing a new Doctor Who is going to perform a new angiogram this Friday to check pressures and flow, what flow if any. The real maddening part of all of this is that my pressures were all under six and my left was only at a 3 when the stents were inserted. I have chiari, EDS and Eagles syndrome and have had to have bi-lateral Styloidectomies to deal with the styloid compression.

Needless to see I am furious, frustrated, in horrific pain and everything in between. I have a pain above my left eye that began after the blood clot in the left jugular in April that has gotten worse and my vision is now affected.

I guess I'm looking for anyone with any advice, similar issues, anything remotely helpful. Thank you all so very much.

[NHE]

I guess I'm looking for anyone with any advice, similar issues, anything remotely helpful. Thank you all so very much.

I would suggest that you try contacting Dr. Salvatore Sclafani who is an interventional radiologist at American Access Care in Brooklyn, New York. He is well versed in treating jugular vein issues.

https://www.aacbrooklyn.com/doctor/salv ... i-md-fsir/

[1eye]

I cannot sit in my comfy armchair and relax while this goes on. People on ThisIsMS, where I often post, need to be told, stents, and jugular surgery can and do fail badly. Nobody should sign up to have their necks cut open, or jugular stents used on them, without considering this as not only a possibility, but a likely outcome. Doctors of all stripes cut patients open all the time, and stitch them back up. Surgeries are overcrowded with people waiting to have their bodies cut, but they are often not successful. Surgeries save lives, but they can and do fail.

My collar bone surgery was not a success. I now have bone-bank fragments and a hunk of titanium with a protruding end, where my broken collar bone used to be. It hurts a bit. I was not in much pain, and maybe better off, before the surgery. That was this spring, in April. I think some surgeries on sixty-something year-olds do succeed, but the consequences of failure, including possible death, must be very seriously considered.

Ballooning the jugular is easily successful. Jugular stents are far less so, and they can and do fail. Even a catheter-ballooning CCSVI procedure is not a walk in the park. I have 3 stents in my chest. I hope they don't fail. Dr. Sclafani does not use jugular stents.

A friend of mine had jugular stents put in, by the same doctor that ballooned mine, and they failed. She is alive still, but not happy they were used. Her CCSVI, and her MS, are worse. She is now secondary progressive. She cannot drive. This was 2010, just before I went in for ballooning. Another friend got worse after his CCSVI procedure but it's hard to know, since he still has MS. He is still in a wheelchair.

Recovery from jugular surgery is very dangerous. Your neck is too flexible, moveable, etc.

Stents sometimes work, but even ballooning sometimes fails. You are in the realm of chance. That is why neurosurgery is less common than plain neurology, and why it is a specialty within a specialty. Ballooning is easier, but if I did not have MS, I would not choose it without a very good reason. Even the X-rays on a fluoroscope are not good for you. My stents were done immediately after a heart attack.

I am very sorry you had this happen. Easy for me to say, but I mean it very sincerely. Good luck. Maybe we should put this thread and others in a sticky under the topic "what goes wrong with jugular stents."

[Cece]

Are the stents at the top of the jugulars, near the skull? This is an area where the skull itself can crush a stent. In CCSVI, it's more common to be treated near the base of the jugular, near the collarbone, but people have had stents up high and people have been in similar situations to you. When you get the angiogram on Friday, please let us know what he thinks can be done. If it was bone that crushed the stents, such as the skull, it would be a strong risk to crush the new stents as well if stents could be successfully placed within the previous stents. Another possibility is that the stents were not fully deployed when they were inserted, which would be a good scenario at least because a bailout fix-it-job could at least be attempted without the risk of the new stents being crushed by bone. I am not a doctor, just an enthusiast.

[lwhite1027]

The stents are huge and are almost the entire length of the jugular (I believe they are renal stents). The right stent is broken/fractured because it was compressed between my C1/styloid (which my jugular was pre-stent). I have vascular Eagles Syndrome (styloid compression syndrome) so my jugulars were compressed between my very mobile C1 (from my initial chiari decompression) and styloid. After my styloid was removed, the stent was ballooned and the ballooning was what fractured the stent. The stent on the left I believe just became compressed between the C1 and styloid and then I got the clot (which is still there.

I will keep you all posted on Friday's angiogram. It's been a horrible mess and the stents never should have been put in.

[Cece]

After my styloid was removed, the stent was ballooned and the ballooning was what fractured the stent.

OK that is encouraging because it might be possible for an additional stent to be placed within the fractured stent, with more hope for a good outcome because the cause of the fractured stent is known and won't be repeated. Stents within stents have happened here before.

The stent on the left I believe just became compressed between the C1 and styloid and then I got the clot (which is still there.

I will keep you all posted on Friday's angiogram. It's been a horrible mess and the stents never should have been put in.

You were on anticoagulants when the clot developed?
I am in favor of aggressive treatment of clots, up to and including repeat procedures to manually remove them after early diagnosis due to monitoring. Passively waiting for the clot to break up on its own while anticoagulants prevent it from worsening is awfully passive for something as vital as IJVs.

I am really sorry this intervention has gone so sideways. If there is flow in both veins, the IR will be able to get a catheter through the veins (compared to complete blockages where just getting the catheter through is the first challenge). So that clot should be able to be dealt with and improved.

[lwhite1027]

I was on (unfortunately) - anti-platelet therapy instead of anti-coagulants, mistake #234. Once the clot was discovered (after I forced myself on the surgeon after repeated emails), I was put on a heparin drip and then they attempted to balloon the clot. But it's still there. This entire stenting has been one big giant cluster you know what, mistake after mistake and know another doctor(s) are left to clean up the mess. Hopefully there is flow and we can do something about it. Friday will be strictly diagnostic and then the new doc will confer with other doctors because he wants to make double and triple sure that the right thing is done since my head has been so messed up and I've been treated as he said "worse than a guinea pig." At least he's being uber cautious, thank the lord.

[Cece]

OK I like the sound of this new doc. Good luck today.

[lwhite1027]

So I had my venogram this morning and it showed some interesting findings. While my stents are mangled and ugly, there was some flow and the pressures were on the normal side. But..... the bad news, he had me do some venous maneuvers with my head and when my head is turned to the left and facing down a bit, the left jugular shut off almost completely (down at the lower level). He said afterwards he needs to some research this and figure out where to go from here so I guess this is a good news/bad news outcome. Could be worse, could be better. At least, unlike the old doctor, he is not jumping in and rushing to just throw more crap in my veins to open them up and is going at this conservatively and will talk to other doctors about how to handle the situation. In the meantime, I'll just look straight or to the right ;)

[Cece]

My left jugular is only open when I look to the right. Looking forward or to the left, it is closed. This was seen during ultrasound testing prior to my CCSVI appointment 5 years ago and, since a physiological narrowing is caused by a muscle or bone compressing the vein, it's likely I'm stuck with it. It's ok though. I sit on the left at movie theaters etc.