Post if CCSVI treatment did NOT work for you

[Renoandi]

Hi everyone,

It is now 2 weeks since my angioplasty. I have not had any improvement and some of my symptoms are becoming worse.

I guess I left out some info from my first post so here goes.

Diagnosed in 2005 due to a cervical cord lesion. Have have 9 or 10 in my brain. Since I have been in a drug study due to loss of insurance I have not had new MRI"s of my spine, but did have 3 relapses all presenting with spinal lesions in the year I was in the study. Prior to that on last full set of MRI's I had 4 lesions on the spine, and several that have grown from relapses.

The sypmtoms that are now getting worse since the angio are a very severe 24/7 MS hug, a constant pulling and pain in my neck and head. Fatigue has never been a big issue with me until now, I am so tired all the time and no energy to do much of anything. Also the numbness and burning in my legs and feet are much like they were when I was first diagnosed. This is all 24/7 now.

This is a breakdown of what my reports said. I couldn't write it all out.

.
I had all the reports faxed to me from my doppler to my venogram. Here goes



Color duplex Doppler ultrasound scan and pulsed doppler to evaluate IJV



Reflux in the LIJ both in supine and sittin up positions. Refulx RIJ in upright position, refulx in right verebral vein in upright postion. RIJ smaller than left/





MRA/MRV




No abnormality identified in the intercranial veins

Larger size than expected for the external jugulars and the paravertebral veins suggesting obstruction in the internal jugular venous draingage.





Procedure: Bilateral internal jugular venogram, superior venacavagram, azygos venogram, bilateral Internal jugular vein angioplasty and follow up venogram.



I can't type out all the different types of balloons and the whole procedure I wll write the findings and impressions



Imaging findings:

Considerable collateral flow into the external jugular and paravertebral veins noted bilateterally during injection ofr 6 cc/sec for three seconds in both veins.



Following repeated balloon angioplasties bilatererally, the moderate stenosis observed at the junction of the internal jugular veins and incominate veins bilaterally was reduced to 30% or less.



Superior vena cava appears normal.



Moderate circumferentail stenosis involves the right innominate vein, this was cleared with balloon angioplasty.



Azyos vein appears normal.



Impression:



Most of what is written above, plus:



Reduction in 50-60% stenosis at the junction of the internal jugular veins and the innominate veins to 30% or less following repeated balloon angioplasties, including use of 14 mm diameter balloon on the right and a maxium of 12 mm on the left, both sides were treated with a 8 mm cutting balloon. Moderate stenosis of the right innominate vein cleared with a 14 mm balloon angioplasty.



So my questions are for those who have had the procedure. What is the Innominate Vein? I have not heard this term used. Did you have a cutting balloon used?

Did you have larger balloons used?

Did you have a better than 30% reduction in stenosis?


I hope this all made some sense, I do have my follow up and doppler on the 8th of October.

Thanks,
Andrea

[North52]

Dear Andrea,

In answer to the question about what the innominate vein is, I think you will most easily find the answer in the following diagram.

http://en.wikipedia.org/wiki/File:Gray1174.png

There is both a left and right innominate vein. Also keep in mind that innnominate is used interchangeably with the brachiocephalic vein.

Sorry to hear of your worsening. I should mention that I also have an obstruction of the innominate vein, but on my left side. The obstruction is 100%. I had a first catheter venogram about 4 months ago but they did not feel comfortable attempting to open up this lesion at the time. They did managed to open my azygous from an 80% stenosis to 50%. Even with this one lesion opened, I derived define improvement in my gait, cognition, fatigue and spasticity. These improvement slowly resolved over the following weeks and month.

Of note is that immediately after the procedure, I developed numbness of all the fingertips of all 10 of my fingers. This type of symptom corresponds to a lesion that would be localized in the spinal cord. I have seen similar symptoms reported here on the site. I strongly suspect that this was a result of knocking off a collateral that my spinal cord was dependent on. On my venogram, there were clear collaterals entering the azygous vein and I suspect one of the collateral may have clotted or otherwise been damaged with ballooning. I think this is an underappreciated risk of the the procedure.

A this point in time, I am much worse than pre-angioplasty, but this is largely the result of an unusually severe exacerbation that I am having at the moment. My EDSS seems to be decreasing day by day. Presently on steroids that are not making a difference.

Although this worsening followed my angio by 4 months, I am not convinced it was caused by it, although it might be. I suspect this severe exacerbation may be secondary to the 4 month Tysabri drug holiday that I took. I just read that there are reports of patients developing severe exacerbations usually after about 3 months of drug holiday, with persistent progressions in EDSS of about 3 points.

I have not yet given up on angioplasty and I am booked in about two weeks to try and open up the 100% occlusion of my left brachiocephalic. Chances of getting though, however seem slim. Just hope I make it to that point with some remaining mobility.

North

[Renoandi]

Dear Andrea,

In answer to the question about what the innominate vein is, I think you will most easily find the answer in the following diagram.

http://en.wikipedia.org/wiki/File:Gray1174.png

There is both a left and right innominate vein. Also keep in mind that innnominate is used interchangeably with the brachiocephalic vein.

Sorry to hear of your worsening. I should mention that I also have an obstruction of the innominate vein, but on my left side. The obstruction is 100%. I had a first catheter venogram about 4 months ago but they did not feel comfortable attempting to open up this lesion at the time. They did managed to open my azygous from an 80% stenosis to 50%. Even with this one lesion opened, I derived define improvement in my gait, cognition, fatigue and spasticity. These improvement slowly resolved over the following weeks and month.

Of note is that immediately after the procedure, I developed numbness of all the fingertips of all 10 of my fingers. This type of symptom corresponds to a lesion that would be localized in the spinal cord. I have seen similar symptoms reported here on the site. I strongly suspect that this was a result of knocking off a collateral that my spinal cord was dependent on. On my venogram, there were clear collaterals entering the azygous vein and I suspect one of the collateral may have clotted or otherwise been damaged with ballooning. I think this is an underappreciated risk of the the procedure.

A this point in time, I am much worse than pre-angioplasty, but this is largely the result of an unusually severe exacerbation that I am having at the moment. My EDSS seems to be decreasing day by day. Presently on steroids that are not making a difference.

Although this worsening followed my angio by 4 months, I am not convinced it was caused by it, although it might be. I suspect this severe exacerbation may be secondary to the 4 month Tysabri drug holiday that I took. I just read that there are reports of patients developing severe exacerbations usually after about 3 months of drug holiday, with persistent progressions in EDSS of about 3 points.

I have not yet given up on angioplasty and I am booked in about two weeks to try and open up the 100% occlusion of my left brachiocephalic. Chances of getting though, however seem slim. Just hope I make it to that point with some remaining mobility.

North

I really feel like I am having a relapse, this is why the follow up doppler is so important to me. I need to know if the refulx is worse or better than before. I was told by the Neurologist that I could not do steroids for a couple of months because I messed with my veins. I was not put on any blood thinners, have you heard this?

If the doppler is good then I know that this is a true relapse and want to do the IV steroids, I seem to be able to tolerate them pretty well.

I have been off Avonex now for close to 3 months, do you think that could have brought on this if it is an attack?

Thank you so much for responding.
Andrea

[Cece]

[I was told by the Neurologist that I could not do steroids for a couple of months because I messed with my veins. I was not put on any blood thinners, have you heard this?

Can you get your neurologist to consult with your IR (or a local IR) as a team on this? Or your GP, if your GP could prescribe the steroids? Steroids have some effect on anticoagulation so it could make your veins more prone to clotting, so the solution might be that you go on both steroids and an anticoagulant, I don't know, but your neurologist's comment seems harsh!

Here is yesterday's conversation on steroids and ccsvi treatment, with what drsclafani has said on the matter too: http://www.thisisms.com/ftopict-13982.html

North, thank you for coming up with a plausible theory on why we sometimes hear these reports of persistent hand/arm numbness that begins immediately after the procedure (even on the operating table). I am sorry though that it happened to you. I've been wondering about this since we heard it back in June, with someone who'd had numbness for a month with no sign of abating that had begun immediately after the procedure, and more recently a friend who was treated by Dr. Englander with the same result. Dr. Sclafani has said that he would consider ballooning a collateral. So there is hope yet.

[patientx]

I was told by the Neurologist that I could not do steroids for a couple of months because I messed with my veins. I was not put on any blood thinners, have you heard this?

There are some reports in the literature of MS patients experiencing venous thrombosis after receiving steroids. Maybe your neurologists had these in mind? The best thing is to ask him directly why he said this.

[NHE]

Hi Andrea,

I really feel like I am having a relapse, this is why the follow up doppler is so important to me. I need to know if the refulx is worse or better than before. I was told by the Neurologist that I could not do steroids for a couple of months because I messed with my veins. I was not put on any blood thinners, have you heard this?

I'm curious why you were not put on blood thinners following your angioplasty? Dr. Sclafani has stated that angioplasty injures the vein and makes it much more prone to clotting.

NHE

[Renoandi]

Thanks for the responses. I was in a drug study that I just dropped out of, since I got the control drug Avonex. I was seeing the top MS doc there and he is the one that told me that I could not do streroids for a couple of months.

Since I won't be seeing him any longer and my old Neurologist left the state I am in between one.

I do have an appt with a new GP and will talk to her about it.

Since I am going to be going on LDN, I might just tough it out if it is a relapse and see if the LDN helps.

[joanp]

http://www.thisisms.com/ftopic-14108-0- ... rasc-.html

[joanp]

http://www.thisisms.com/ftopict-14158.html

[joanp]

http://www.thisisms.com/ftopic-14250-0.html

[Peaches1]

I had the procedure June 3 by Dr Siskin. He put in 2stents in ILJV
He gave me 3mos of Plavix, he doesn't like to use coumadin
At my 4mo doppler, it showed a clot.
I did have some small improvements after the first. Went back last wk to try to remove the clot Dr Siskin couldn't remove it. So I am gack to square one with 2 metal stents
Glad I tried but disappointed that he couldn't get the clot out.
After the first procedure I had better color, more energy, walking easier. It was a slow loss of gains over the mos.

[ikulo]

I am now 2 months post procedure. I had two 50% narrowings in LIJV and one 50% narrowing in Azygos. Received angioplasty only, no stents. Was on aspirin for a month.

Three days after the procedure I started experiencing what seemed to be a relapse. Finally, 2 months later some of the symptoms have abated. Now having much more trouble walking, vertigo worse, and brain fog about the same as before. Emotional symptoms also worse.

At this time will probably wait for more research so I don't get even worse with another angioplasty.

[jimmylegs]

ikulo just wondering, have you had testing to make sure your nutrient status matches healthy controls and not the usual MS patient nutritional profile?

[newveins]

I had angioplasty a month ago 80-90% stenosed in both jugs and azygos. Darn, no improvements, no sedation during the procedure so I could feel the balloons otherwise I might have thought they skipped that part as I felt exactly the same during and after the procedure not even the warm hand/feet bit.

Well, I hope that I am slow to improve and that I will be removing this post when lots of improvements slowly show up the next couple of months. I have had MS for many years and have plenty of symptoms that could be improved walk poorly, type poorly, poor bladder function, insomnia etc fatigue though is not a problem.

So bizarre that a few of us can be so plugged up and have no improvements while most with seemingly the same have lots. There sure is something we don't know about ccsvi yet.

[newlywed4ever]

ikulo just wondering, have you had testing to make sure your nutrient status matches healthy controls and not the usual MS patient nutritional profile?

Can you tell us exactly what tests we should be asking for? Thank you, JL - for all the info you share. I've finally read 4 of your links..alot to digest (literally!) and I keep seeing red $$ signs. Bought the niacin yesterday - still haven't tried the flush, tho. baby steps...