Back from 2nd Procedure

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

Back from 2nd Procedure

Postby WinnipegGirl_83 » Wed Mar 02, 2011 8:07 pm

Hi all, I had my venogram today. So pleased with Dr. Cumming and his level of care. Unfortunately, he was unable to safely open my RIJ vein. The first time I had the procedure this was an area causing trouble. Perhaps the aggressive ballooning technique the first time caused my vein to collapse now.

My LIJ vein and azygous were ballooned successfully.

Has anyone else had a similiar experience? Did you still see benefits afterwards? I am scared that my whole system is going to turn into cement and shut down.
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Postby eric593 » Thu Mar 03, 2011 2:50 am

So glad you were successfully angio'd but how disappointing that the one side could not even be opened. Do you have collaterals on that side to at least compensate?

Was there re-stenosis too in the other 2 then? What kind of aggressive treatment did you originally have that might have negatively affected the one side? So the catheter wouldn't even go through? What kind of narrowing is it, intimal hyperplasia, or something else?

It seems to be rare that all veins close off afterwards, so try not to worry about that, especially if you're on an anti-coagulant now.

Rest and give yourself time to heal. Glad it's done and you had some narrowings corrected so you have better flow!
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Postby Cece » Thu Mar 03, 2011 5:05 pm

Take care, WinnipegGirl. Have you been able to get the plavix filled? When you mention aggressive ballooning the first time around, am I remembering right that you were first treated by Dr. Sinan? I am sorry to hear about that right IJV.

Newlywed4ever's story is similar to yours, I think?

I am scared too that my jugulars will close up.
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Postby prairiegirl » Thu Mar 03, 2011 7:14 pm

Hope you will notice improvements in time. Wish you the very best, WG!
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Postby WinnipegGirl_83 » Thu Mar 03, 2011 7:50 pm

Hi!! Yes I do have collaterals helping to drain the blood on that side, thank-god. Do you think that will suffice?

There was stenosis in my other veins as well. The aggressive technique I am referring to is the use of a cutting balloon and very large balloons. Does it get more aggressive than that? I'm not sure...

The catheter wouldn't go through and I'm not sure why specifically. I am taking Plavix and baby aspirin. Eric, are you saying that a lack of anti-coagulants will cause my venous system to close?

Cece and Prairiegirl, thanks for your comments. I did get my prescription filled finally. I hope you both are doing well :)

Sometimes I catch myself in disbelief, at times I can't believe this is my life. It makes me really sad but at the same time I know it could be worse. I try not to feel sorry for myself I know I have a lot of wonderful people in my life. I am generally very positive but catch myself in moments of panic at times.
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Postby newlywed4ever » Thu Mar 03, 2011 8:29 pm

WPgirl - Cece's right; my story is very similar to yours. My left IJV was occluded and Dr Sclafani was unable to fix. My first angio was in August with Dr Siskin; 2nd time around was 1/28/11 with Dr Sclafani. Dr Siskin had told me that the LIJV was 100% blocked (ballooned), RIJV was fine, and azygous had issues (ballooned). Dr Sclafani found issues with valves in RIJV and azygous (both ballooned). Dr Sclafani was unsure if the left was blocked due to scar tissue, blood clot or possibly a collateral was originally ballooned rather than IJV. BTW, he had only positive things to say about Dr Siskin so I don't want anyone to think he was being critical. After the Dr Siskin angio, I did have positive improvements - most noticeably with my right foot drop; however, I lost this benefit by October. After Dr Sclafani angio, my improvements are 98.6 body temp (my norm was 97.4), off & on warmer right foot, less groggy/crabby in a.m. and I sweat now (who would've thought that would be considered an improvement?!?); no improvements with foot drop. I suspect that I'll be seeing Dr Sclafani again as the docs learn more & more. Or even Dr Cummings as I live in the U.P. of Michigan and will probably do my 3 mos followup there as he's the closest to me.

I hope you continue to heal and see improvements. What a journey, eh? :)
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Postby newlywed4ever » Thu Mar 03, 2011 8:41 pm

One more thing, WPgirl. My take on the 2nd angio is that I'm pretty much the same pre-procedure(s): a blocked vein that has developed collaterals to handle the flow - basically no better, no worse. BUT with the rest of the areas fixed, my body is experiencing improvements within that I do not recognize in dramatic external physical improvements. Basically, my body has undergone a few tweaks that enables it to work better. And like Dr Sclafani told my hubby, I have 2 out of 3 highways in good order. So do you, my friend. And I see Dr Cummings & Dr Sclafani are conferring about our situations - I trust there will be an answer down the road.
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Postby pklittle » Thu Mar 03, 2011 9:42 pm

newlywed, I think I may have told you before ( cog-fog ya know), that I am similar to you in that I was first ballooned by Dr. Siskin last summer and my left jug clotted and now is inaccessible. I do have some collateral flow though.

winnepeg, so you have one jug clotted too. We should form a club, as I am hearing of this more and more, unfortunately.

Best of luck to you both. I'm in a holding pattern right now. :?:
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Postby WinnipegGirl_83 » Thu Mar 03, 2011 9:48 pm

Thanks for your message Newlywed! This is the craziest journey to say the least. I am not feeling any improvements 36 hours after the procedure. I know the first time I had the procedure I did. Are you still able to work? I know you said you had no phys. improvements after the 2nd procedure but did notice the smallest difference in your walking?

I received a call to have my veno with Dr. Sclafini back in mid Dec., at the time I was feeling great and politely said thanks but all is well. My god it wasn't a week later when you know what hit the fan. I was kicking myself that is until I came in contact with Dr. Cumming.

He was wonderful when it came to the US as well. I had an US done in Barrie, Ont. about 3-4 months after my first procedure and she said everything looked good. Dr. C found a number of issues from the US alone. Clearly things changed within that 6 weeks.

Do you feel comfortable with having the procedure multiple times? For some reason I feel nervous about doing this repeatedly, I almost feel like I am single handedly collapsing my own system b/c of my impatience.

Thanks again for your message! talk to you soon :P
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Postby CD » Fri Mar 04, 2011 12:04 am

Hi WinnipegGirl,
I am sorry to hear that your right IJV is still blocked, but collaterals will work along with the other two open veins. Keep taking the Plavix and Aspirin. Did you get a loading dosage or start it a few days before?

Please don't ever forget to take it, even a day makes a difference. You must heal and not get blocked. It will work. :D

We are still pioneers, until this is CCSVI procedure is perfected, so we have to expect some problems. Some have none. Luck of the draw? Try to be positive, think great positive outcomes. Why worry?

We chose to do this, others chose some crappy drugs. We have better odds, IMO As for another procedure. I would wait a while. Wait until they get a way to enter a total occluded vein. It's coming. Lots of good stuff is coming for us. Have "Hope."

Rest, heal and maybe improvement will be there for you. Like no progression of disease and more future bonuses. Good luck to you.
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Postby newlywed4ever » Fri Mar 04, 2011 7:36 am

WPgirl, I certainly understand about wondering when enough is enough to preserve what we've got and not add to the stress of those veins. When I say that I believe I'm not done yet, I'm talking about when they figure out how to tackle our particular cases - and I really don't expect to do anything for the next 6 months or so. CD is absolutely right - hope is alive & well :D

Actually, I do not see any improvements with my walking. I am on an early medical retirement/disability so your question about still being able to work has to be answered in the context of working at home. I have always been "busy" - one project after another and I do operate a small business of quilting from my home.

Unfortunately, I will not have computer access for the next couple of weeks - I am going to TX to help my mom with her health issues but your thread will be one of the first I check out when I'm able! Take care of yourself - Dr Sclafani mentioned he has patients that see new improvements 3-4 months post procedure - we just might be in that group...
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Postby Cece » Fri Mar 04, 2011 7:47 am

newlywed4ever wrote:Take care of yourself - Dr Sclafani mentioned he has patients that see new improvements 3-4 months post procedure - we just might be in that group...

I hadn't heard of that!! This would have to be from some of his first patients at AAC, he only started up late last fall.
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Postby WinnipegGirl_83 » Fri Mar 04, 2011 11:46 pm

Thanks for the encouragement. You guys are wonderful.

CD- After the procedure I took a big honkin' Plavix pill but now I am on 75 mg for 30 days plus baby aspirin too. I hope I will see some more improvements but if i don't get worse that would be the biggest prize. Have you had the procedure already? once? twice? how did it go?

NewlyWed I hope your mom gets better soon. We'll talk when you get home. Take care of yourself...take rests when you need it.

:lol:
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Postby AMJ » Sat Mar 05, 2011 5:36 am

Sending positive thoughts to you :D :D

I hope you start to see improvements soon. Take care of yourself and gets lots of rest.

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Postby CD » Sat Mar 05, 2011 8:24 pm

WinnipegGirl_83 wrote:Thanks for the encouragement. You guys are wonderful.

CD- After the procedure I took a big honkin' Plavix pill but now I am on 75 mg for 30 days plus baby aspirin too. I hope I will see some more improvements but if I don't get worse that would be the biggest prize. Have you had the procedure already? once? twice? how did it go?


WPGirl, I had the procedure twice. The first time my stent clotted. Two days later an ultrasound had showed no flow. :cry:

On the third day I had another Venogram and Angioplasty. This time he broke up the clots and put in two more stents because at C1 it showed a flap that would not go away with ballooning, causing reflux, plus the clots, and thus no downward flow, only tons of collaterals. Then I had flow and some tiny clots. Empirically being treated with Warfarin now.

Very disconcerting to say the least. I know how you feel WP Girl. But I still have "hope" no matter what. "It ain't over 'til the fat lady sings."

I think a bone in my neck held it tight or was pushing against it. I don't know. I go soon for my three month check up, I'll let you know. I haven't had the neck pain, back of head pain, or shoulder pain, since he put in the last two stents in.

I was on Lovenox shots and Warfarin the second time. The first time only Plavix, no Aspirin, which I think is important to rid the vein of inflammation.

Inflammation that has to occur, in the ballooned vein, and this can lead to scaring and major blockage. JMO

Aspirin is great, I wish I had that added to my Warfarin now.

I really think getting rid of the inflammation plays a big, big part in healing the vein well inside.

One day Aspirin given alone after the CCSVI procedure may be the answer, who knows? It prevents heart attacks and strokes, and damage if taken right away post stroke, etc.

Give it time to heal and I pray you will have some improvements this time. I heard people see improvement up to 18 months down the road. You never know.
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