Successful angio - restenosis - repeat angio - problem+++

[smokey]

Hi, I had an venogram and angio in May with 2 stenoses in the left jugular (right and azygos are fine) identified, ballooning and lots of improvements. Restenosis a couple of weeks later. This was followed by a repeat venogram and angio but no ballooning. The original vein, which had been thought to be the jugular, and was ballooned the first time had 'disappeared'. There's now a thrombus at the lower end of the jugular and then - no jugular vein, just collaterals which run through to a 'stump' of jugular behind the ear. It wasn't possible to get the 'wire' through at all. So no ballooning was possible. Feeling pretty despondent. Has anyone else had this or a similar problem? Suggestions welcome. CCSVI diagnosis well and truly met, but no treatment possible at present.

[vivavie]

Smokey, very sorry about what is happening to you.
That is very strange...
Were both procedures done by the same doctor?
Did he emitted some can of explanation for that?
I understand how you feel, my situation is different but also not a great outcome and also without answers yet.

This Liberation procedure looks very simple and easy at first glance, just a plumbing problem but alas as it is in its early stages there is a lot of unknown...

How are you physically? are you worse than before your first procedure?
I know it is hard sometime but don't give up!

[Cece]

A thrombus means a blood clot, right? What about blood thinners to try and dissolve the clot?

A vein can clot over 100% and block a catheter from entering it. Dr. Sclafani had a patient to whom this happened.

A vascular surgeon might be able to do a vascular graft, depending on how much vein there is to work with. This might be similar to what LR1234 endured?

Sorry you've had this happen. It sounds like your doc just sent you home, no further solution possible? I would go for a second opinion from a different doc, maybe there is something that can be done.

[bestadmom]

I'm Dr. Sclafani's patient that had this happen, last December. His "first and worst."

My right ijv was either two incomplete veins "conjoined" or one narrow one with a septum down it. It thrombosed when Dr. S ballooned it, and he broke up the clot with thombolysis while I was on the table.

By the next day, the clot was back. Dr. Sclafani went into the right ijv two additional times in the next two days and couldn't get the clot to dissolve. It was still there after 3 months on coumadin. I was checked with the transcranial doppler in June and my right ijv is totally clotted closed with no flow or reflux.

Dr. Sclafani ligated his wife's ijv to stop tinnitus. He said we only need one working ijv. That was one of his reasons, when we first spoke a year ago, he thought the liberation procedure was unnecessary. We all know how quickly he changed his mind after seeing stenosis and reflux in every one of the MS patients he treated.

If you have no reflux in your right ijv and azygos, your veins should be draining your brain properly. Since this is so new, we don't know if the vertebrals play a role.

I hope you are stable or are improving. Depending on that and the level of experience your doctor has with the procedure, you might want to seek another opinion.

[smokey]

Hi, thanks for the responses. My right jugular and azygos are fine. All flowing well. The IR was pretty upset about what had happened and tried every which way to access the left jugular, or what he thought was the left jugular. He thinks he might have ballooned a collateral last time, not the jugular. He'll consult another colleague and suggests I wait for a few months to see whether new techniques emerge. I'm pretty stable at the moment, so hopefully, if I attend to my health in the meantime, there'll be a solution. I really hope so, because after the first angio there were significant improvements. Guess all we can do now is wait.

[smokey]

BTW - Yes it was the same doc both times. No, don't think he's given up, but might wait a while for treatments to develop. Yep, thrombus is a blood clot.

[KDGO]

Dr. Sclafani ligated his wife's ijv to stop tinnitus. He said we only need one working ijv. That was one of his reasons, when we first spoke a year ago, he thought the liberation procedure was unnecessary. We all know how quickly he changed his mind after seeing stenosis and reflux in every one of the MS patients he treated.

Just curious if after he ligated did the tinnitus stop do you know? Can you elaborate on what you mean by "unnecessary" and "changed his mind"?

Thanks

[Cece]

Just curious if after he ligated did the tinnitus stop do you know? Can you elaborate on what you mean by "unnecessary" and "changed his mind"?

http://www.ncbi.nlm.nih.gov/pubmed/3625880

J Vasc Surg. 1987 Sep;6(3):248-51.

Tinnitus originating from an abnormal jugular bulb: treatment by jugular vein ligation.
Golueke PJ, Panetta T, Sclafani S, Varughese G.

Abstract
Tinnitus and hearing loss can occur in patients with a high-riding abnormal jugular bulb. Jugular vein ligation in selected patients can cure tinnitus and reverse hearing loss. A 39-year-old woman reported a 4-year history of right-sided tinnitus of increasing intensity associated with a mild hearing loss. Extensive evaluation revealed only an enlarged right jugular bulb with dehiscence of the normal petrous bony septum between the bulb and the middle ear. The patient underwent ligation of the right internal jugular vein and noted immediate cessation of tinnitus and the return of normal hearing. Review of the literature suggests that jugular vein ligation is appropriate in selected cases of venous tinnitus.

[bestadmom]

Her tinnitus stopped. Dr s changed his mind about ccsvi and doing the procedure once he saw my mrv from buffalo. I had so many collaterals it looked like spaghetti in my neck. That's when he knew that ccsvi was real and needed to be treated. Seeing it in every other patient reinforced it. Two other of his first patients also had discs from bUffalo and they both had stenosis. It was enough to warrant the catheter venograms.