CureOrBust gets a venogram & angioplasty

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CureOrBust gets a venogram & angioplasty

Postby CureOrBust » Mon Aug 23, 2010 11:50 pm

A few hours ago, I had a venogram through which they found both my jugulars needed angioplasty. The left was done high up, while the right was low down where it joined the next vein. I have a copy of the images on a CD which I have yet to look at.

I have previously had a few MRV's and dopplers performed. The first doppler performed back in the start of 2009 found a reflux in my IJV (ie only one of the 5 Zamboni criteria, not two). I then had a few MRV's which did not find any stenosis or such. :? I recently had another doppler test, and they found a small difference in the amount of flow between my jugulars, and mentioned some possible stenosis around the valves. Enough for a referral for a venography :)

This morning I had the venography, and they found reason to balloon both my left and my right jugulars. The surgeon said that he found some signs of reflux and ballooned it, and found this fixed it.

At the time of venogram, he said I may feel slight pressure in my neck (as he was about to inflate the balloon), but to be honest, at that point in time, I didn't feel a thing. If anything, a few seconds prior, I think I felt the "wire" (ie catheter) in my neck.

However, a few hours later, I started to notice that there was some minor discomfort in my neck when I turned it hard left or right. Nothing painful, just a sense something was "done". Sort of as if I may of slept wrong.

Anyway. At this stage, I cant say I have noticed any difference in my MS symptoms either way.

However, if I was to be looking for something/anything, I think there may be a slight difference / lowering of the amount/sense of pins & needles in the soles of my feet. But that would change all the time normally, so I am not reading anything into it.

I was not given any blood thinners before the procedure, and have not been placed on any medication after it. I only had ballooning (ie no stents). I was given a local at the catheter entry point (the inside of the left leg, as close to the groin without actually being the groin). They used an ultrasound machine to find the exact location for entry.
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Postby smokey » Tue Aug 24, 2010 12:46 am

Great news. Takes a while to feel the full effects. I havent had pins and needles for a few weeks now......take care and keep us updated.
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greetings from Melbourne!

Postby hwebb » Tue Aug 24, 2010 1:52 am

I'm happy you've finally had a venogram, as this is the only way to have a good look at the full length of your jugulars, and your azygos, and to know what condition they are in. Well done :)
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Postby gibbledygook » Tue Aug 24, 2010 4:59 am

well done Cureo! That took some doing!! I'm alarmed that they didn't tell you to take low dose aspirin or something to prevent a clot. Another forum member, LR1234, had a ballooning done and the jugular then clotted and she had to have major surgery to clear the clot. I would seek clarification....
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SandyK » Tue Aug 24, 2010 1:01 pm

Fantastic to read. Can't wait to be in the club!
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Postby CureIous » Tue Aug 24, 2010 1:22 pm

Excellent report. Look forward to your future reports. Lucky they were able to make enough of a determination based on the UT's to indicate a veno. I think enough healthy Americans are taking an 81 mg aspirin for mere maintenance purposes, it can't hurt, assuming your doc is okay with it of course ;)

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby cheerleader » Tue Aug 24, 2010 4:13 pm

CURE-E-OH!!!

Well, it's about time :)
Glad to hear you have some answers.
Just because I can't mind m own business, I'm gonna suggest proteolytic enzymes (nattokinase and serrapeptase) if you don't do thinners or aspirin, just to keep things flowing. Also, lots of fresh water to stay hydrated and clear out the contrast dye.
keep us posted, and congrats,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Tue Aug 24, 2010 7:03 pm

CureIous wrote:Lucky they were able to make enough of a determination based on the UT's to indicate a veno.
I think the doppler was actually a bit of a "rubber stamp" to get the referral for a venogram. 8) And of course am glad it is this way.

CureIous wrote:I think enough healthy Americans are taking an 81 mg aspirin for mere maintenance purposes, it can't hurt, assuming your doc is okay with it of course ;)
The original doc I was speaking to regarding the procedure (they are now forced to only treat patients under trial conditions and are setting up a very interesting trial now), when I told him I was on baby asprin (100mg in aus), he basically said at worst it would protect me from bowel cancer. :lol:

cheerleader wrote:Also, lots of fresh water to stay hydrated and clear out the contrast dye.
ooo... actually forgot about that point.

cheerleader wrote:I'm gonna suggest proteolytic enzymes (nattokinase and serrapeptase) if you don't do thinners or aspirin, just to keep things flowing
gibbledygook wrote:Another forum member, LR1234, had a ballooning done and the jugular then clotted and she had to have major surgery to clear the clot
My stenosis was pretty mild compared to what I have seen here (haven't actually looked at my procedure images yet), so I think my chances of clotting are pretty low, but both my docs had no issues with me being on baby aspirin (due to another possible issue in my leg), so I think I will go back on it.
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Postby Katie41 » Tue Aug 24, 2010 7:49 pm

Terrific!!!
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Postby Johnson » Wed Aug 25, 2010 12:08 am

Good going, Cure.

I'm with Joan on the nattokinase, serrapeptase, etc. They scour fibrin - such as contributes to clotting. Coincidentally, they also scour scar tissue - such as is found in the brains of we with many scars. It is not contra-indicated even whilst on blood thinners - according to Dr. Simka, and a number of clinical trials that I do not have the gumption to provide links to.

Happy healing!
My name is not really Johnson. MSed up since 1993
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Postby selkie » Wed Aug 25, 2010 12:44 am

Hi,

Congratulations on your procedure. You mentioned you didn't notice much improvement at the time. Has there been any improvements since your original post (as I didn't see you mention any in your second post)?

Will they be doing any follow-up with you as far as imaging of the jugulars? And did they look at the azygos?

Hope that you are experiencing some improvements, if not now then soon.

s
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Postby CureOrBust » Wed Aug 25, 2010 7:14 am

selkie wrote:You mentioned you didn't notice much improvement at the time. Has there been any improvements since your original post (as I didn't see you mention any in your second post)?
Nope. 15 years to get where I am, I guess it may take more than a couple of days to return...

selkie wrote:Will they be doing any follow-up with you as far as imaging of the jugulars?
These dr's have not, however I am in contact with another who I have discussed a follow up with. He could not perform the initial treatment outside of a trial, which would delay me getting the first treatment. And being a typical IR, he's only really interested in getting me on the table to have a look himself; he's not to big on Ultrasound or MRV's.

The Dr that performed the procedure had me fill in a MSQOL form before, and I have to return another in a month.

selkie wrote:And did they look at the azygos?
Yes, and he said it all looked clear.
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Postby selkie » Wed Aug 25, 2010 11:36 am

CureOrBust wrote:
selkie wrote:You mentioned you didn't notice much improvement at the time. Has there been any improvements since your original post (as I didn't see you mention any in your second post)?
Nope. 15 years to get where I am, I guess it may take more than a couple of days to return...



Sorry - that just plain sucks. But like you say, it may take months to notice some improvement if the damage has been going on that long. 8 years myself, and hoping for liberation in Jan. We'll see.

selkie wrote:Will they be doing any follow-up with you as far as imaging of the jugulars?
These dr's have not, however I am in contact with another who I have discussed a follow up with. He could not perform the initial treatment outside of a trial, which would delay me getting the first treatment. And being a typical IR, he's only really interested in getting me on the table to have a look himself; he's not to big on Ultrasound or MRV's.

The Dr that performed the procedure had me fill in a MSQOL form before, and I have to return another in a month.


Good luck on the follow-up. Have you shared your info w/Dr. Sclafani? May be they will have to go in again... I don't think the MRVs and Dopplars give a complete picture, but I don't blame you for not being anxious to get back on the table. Hope your follow up gives you some answers.

s.
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Postby CureOrBust » Thu Aug 26, 2010 4:11 am

I finally looked at the images from the venography and angioplasty for my treatment. I got to say, I do not see what the dr was treating, but he specifically said he saw reflux, which was fixed by the ballooning. :? I guess that's why he was holding the instruments, and I was lying on the table.

He also said that my Azygos was clear. When I look at the venography images, there is one of a lower vein (didn't take specific note in that viewing which one), which seems to flow fairly freely, but to me it could possibly show signs of minor twisting.

I plan to have my follow up performed by a different centre, so I will be forwarding the disc to them.

For the past 6+ months, I have been using a monthly pulsed steroid regime. I held off my last scheduled pulse, as I was coming up to the procedure, but as I have not been wowed with improvements, I thought I would give the pulsed steroids a go to possibly boost any recovery. I always planned on doing this, but I guess I held off (OK, so it was only 1 day :oops: ) in the hope the angioplasty alone would surprise me.

My original thoughts were based on the idea that the reflux causes a permeable BBB, and steroids have been found and are used to not only kill the white blood cells, but also shut down the permeable BBB. Hopefully now that the reflux has been treated, the BBB will stay shut, and I will keep any gains accumulated through the steroids pulse (3 days, 75mg / day Prednisone)
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Postby CureOrBust » Thu Aug 26, 2010 4:28 am

selkie wrote:Have you shared your info w/Dr. Sclafani? May be they will have to go in again...
I have not shared my recent info with Dr Scalfani, but I previously placed him in contact with the Dr who was originally scheduled to do my treatment. The plan was always to go for a second Venogram. My original Dr had his hands tied on treating any new patients, but is able to treat me now that I have been treated once already. Although he didn't personally see the value of IVUS as rallied by Dr S, when I asked him regarding it, he new Dr S was big on it, and was prepared to use it on me if I would cover the extra costs of the single use catheter involved.

selkie wrote:..but I don't blame you for not being anxious to get back on the table. Hope your follow up gives you some answers.
Looking back at the procedure in hindsight, I really am shocked and disgusted how people are not allowing a venogram to be performed on MS patients. There are no stitches, they only used a local anaesthesia, for me the ballooning was a non event. The DR said I might feel some pressure in my neck, but I didn't feel a thing at that point. I think I felt the catheter in my torso and neck a few times, but nothing painful. True my neck felt a little tender later that night, and the next day slightly less. But the whole thing was pretty simple, and has left me with a "scar" that looks like a very minor scratch. I put a band aide stitch on it, and that almost covers the width of the incision (ie <4mm). This really is such a minor procedure if you simply get ballooning. I was in and out of the OR in less than an hour I think. But I have to say they REALLY need to get heating, I was freezing!
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