Post CCSVI updates, will keep updating!

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

Post CCSVI updates, will keep updating!

Postby soapdiva884 » Mon Nov 15, 2010 8:37 pm

Has anyone had a metal taste after angioplasty? How long does the neck, shoulder and arm pain last? Thank you!

Edited to explain that my bf had angioplasty 2 days ago. Left jugular 60-70% collapsed. Ballooned at 14 and then 18, stayed open! Told that there were no other issues. He is on an injection of blood thinner everynight for 20 days.

He is not feeling well, says his neck hurts along with shoulder and arm. Now the neck pain is going to the other side and he seems to be more tired since CCSVI treatment.

Absolutely NO improvements as of yet. Hoping for slow improvement if any.
Last edited by soapdiva884 on Mon Nov 22, 2010 8:41 am, edited 1 time in total.
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Advertisement

Re: CCSVI side effects??? Is this a side effect???

Postby Cece » Mon Nov 15, 2010 9:10 pm

You two have been waiting so long! I am glad he has been treated but dang it on the no improvements and pain.
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby dunkempt » Mon Nov 15, 2010 9:16 pm

Okay, first be cool. Your neck will hurt - my neck has hurt off and on for seven months (much more off than on as time goes by) and not only on the side I was stented.

Plavix will make you woozy and weary sometimes (although if I had to do it again I would stay on mine longer than the minimum). Probably your BF is beat by the procedure (and travelling?) too.

I got very quick results in most ways, though my benefits weren't as dramatic as others. Lots of people take a few days or weeks to start feeling benefits.

I would be more worried if he had immediate benefits that suddenly went away; give it a few weeks and see how he's doing. And remember the big prize isn't improvement: it's not getting worse.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
dunkempt
Family Elder
 
Posts: 142
Joined: Sun Nov 29, 2009 4:00 pm
Location: Heart of the Continent

Postby soapdiva884 » Mon Nov 15, 2010 9:19 pm

TY CeCe, yeah no improvements at all! We are very discouraged. At the very least we hoped his freezing hands and feet would warm up!!! We do not regret doing this though. Just wish he had the WOW thing happen to him or maybe a WHEW or a WHOA..........LOL

He is just not feeling anything different whatsoever! There was the comment of "I wish there was more wrong, but there is'nt" made during the procedure. We are just plain sad right now after over a year of excitement and anticipation.

But, we will wait and see. Maybe he will have some slow improvements. Who knows?
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby soapdiva884 » Mon Nov 15, 2010 9:23 pm

dunkempt wrote:Okay, first be cool. Your neck will hurt - my neck has hurt off and on for seven months (much more off than on as time goes by) and not only on the side I was stented.

Plavix will make you woozy and weary sometimes (although if I had to do it again I would stay on mine longer than the minimum). Probably your BF is beat by the procedure (and travelling?) too.

I got very quick results in most ways, though my benefits weren't as dramatic as others. Lots of people take a few days or weeks to start feeling benefits.

I would be more worried if he had immediate benefits that suddenly went away; give it a few weeks and see how he's doing. And remember the big prize isn't improvement: it's not getting worse.

-d


Ty for the reply dun.............you are right we need to keep cool and wait and see. He is beat from the procedure and the traveling for sure. He is on a blood thinner injection x 20 days, not plavix. So, this may be contributing to how he is feeling right now. Off to google the blood thinner I am injecting him with nightly. Good to know the neck pain is normal. TY for letting me know that.
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby Cece » Tue Nov 16, 2010 8:37 am

I did a search and couldn't find anyone talking about a metallic taste in the mouth post venoplasty. I did find some reports of it in conjunction with meds or on its own as a MS symptom. Did you find out anything about side effects of the blood thinners?

I am sad about this. :( I agree with dunkempt, it is early to come to conclusions. And that jugular is open now, that undoubtedly will help some.

Here are other thoughts: did your doctor thoroughly check the azygous, it can be tricky? Did he check for anything untreatable like hypoplasic lumbar veins or maybe treatable like May Thurner? I'm assuming he did right on both of these things. HappyPoet recently mentioned from her own situation that if she'd never had a MRV, she'd never know about her dural sinuses being an issue. I don't know if there's anything else that would show up on an MRV besides dural sinuses that wouldn't show up in a catheter venogram?

Hugs, soapdiva. You are a gem of a girlfriend, you're even doing those injections for him? I can do my own copaxone shots but I'd be squeamish about doing someone else's. Of course I was squeamish about my own in the beginning too.
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby soapdiva884 » Wed Nov 17, 2010 2:10 pm

CeCe, thank you so much for your replies.

I would like to let people know what my bf Dr. has said about the metal taste and neck pain:

"The metal taste is likely secondary to the xray dye. some of it, an organic iodine containing salt, is excreted out of the body through the salivary glands."
"massage his neck, the pressure of the balloons may be causing muscle spasm."

I posted this in case anyone else runs into these issues!
As a side note, the neck pain is gone today! Woooohooooo!
And my bf feels like he has more energy today! Wooooohoooo!
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby dunkempt » Wed Nov 17, 2010 9:07 pm

Wooooohoooo!
-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
dunkempt
Family Elder
 
Posts: 142
Joined: Sun Nov 29, 2009 4:00 pm
Location: Heart of the Continent

Postby Cece » Wed Nov 17, 2010 9:11 pm

Yes, woot!!!

Sorry if I overanalyzed, you had me worried. This sounds better.

And now the bf gets neck massages too! Better and better. :)
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby soapdiva884 » Thu Nov 18, 2010 8:18 pm

Bf is feeling better everyday!!!! Wooootwooooot! Yeah, CeCe does not seem fair....I should get the neck rubs. LOL
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby soapdiva884 » Mon Nov 22, 2010 8:41 am

I am bumping this up to let everyone know that my bf is feeling more and more energy and cog fog is clearing each and everyday!!!! His words were he feels like a little kid who is "curious", meaning he sees things clearer and is noticing more of the world now. Woooohoooooo! We are post liberation 10 days now!!!!
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm

Postby CCSVIhusband » Mon Nov 22, 2010 8:46 am

Yep! Such a great story! Hope he keeps it up, but remind him that he IS recovering from an invasive procedure (even if it is minimally invasive) and he needs to rest and recover!

Congratulations and best wishes.
User avatar
CCSVIhusband
Family Elder
 
Posts: 474
Joined: Sun Jun 27, 2010 3:00 pm
Location: Pittsburgh, PA USA

Postby Cece » Mon Nov 22, 2010 10:04 am

thanks for the update, so glad to hear this! Also since any results are due to one jugular only being cleared, I think it drives home the importance of these jugulars. It's amazing and I am so happy for you guys!
Cece
Family Elder
 
Posts: 9009
Joined: Mon Jan 04, 2010 4:00 pm

Postby soapdiva884 » Mon Nov 22, 2010 12:30 pm

I know CeCe, only ONE jugular cleared and there is some talk that the other jugular may need some clearing. Just imagine if the other jugular is in need of clearing, the results could be even better! Slowly each day things are changing for the better!!!!! I am very hopeful each day! There is SOMETHING to this CCSVI thing for SURE! I am convinced and so is my bf.

And another great thing, I told my bf I thought he looked like he is walking better today. About an hour or so later, he said he FEELS like he is walking better! We had a friend tell him he looked like he was walking better a few days ago and that friend has no idea about the CCSVI treatment!!!
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service