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What are symptoms of a blood clot after CCSVI?

PostPosted: Fri Jan 14, 2011 8:37 pm
by Dawna
I am 7 days post procedure. The first few days after the procedure my neck was sore on both sides at the collar bone area. But nothing painful, just a little sore and tender, understandably. However, last night (6 days post procedure), I noticed that when I turned my head to the right, it hurt a lot more on the left side of my neck by the collar bone. Speed forward 24 hours (now) and I've had a bad headache all day, my neck is sore on the entire left side (not just around the collar bone) and the pain also spreads onto my left shoulder (front and back side). My left leg is also quite achy.

My question is this. Should I expect this type of pain after .. or am I looking at something serious? I tried reaching the clinic to ask the doctor, but I cannot get ahold of anyone. Tough spot is: I'm in Canada, where this crazy country is known to ignore any treatment of people who have done the CCSVI treatment. So I'm not sure going to the emergency department to ask would be the best plan of action (as they'll probably just say "we aren't treating you"). My doc's office is closed as it's the weekend.

Tough spot.

If any of you have had fairly bad post-procedure pain (without stents), I would appreciate knowing about it.. I would say I'm fairly concerned about the steady increase of the areas of pain and the level of pain within the past 24 hours.

Re: What are symptoms of a blog clot after CCSVI?

PostPosted: Fri Jan 14, 2011 9:06 pm
by prairiegirl
Dawna wrote:I would say I'm fairly concerned about the steady increase of the areas of pain and the level of pain within the past 24 hours.

Not qualified to give any medical advice, but your last sentence says it all to me; go to emergency.

PostPosted: Fri Jan 14, 2011 9:56 pm
by Cece
Yes, emergency room....

It will be very simple for them to do an ultrasound of your neck (and possibly shoulder and leg) for clotting. Are you on any anticoagulants? After Mr. Mostic's death, there was a number of statements from officials that doctors would not turn away anyone suffering from complications as a result of this procedure.

I am not at all qualified but the fact that this wasn't consistent pain from the time of the procedure but rather showed up six days later isn't good.

PostPosted: Fri Jan 14, 2011 10:05 pm
by PCakes
Dawna.. Mount St Joseph's, Vancouver B.C... please go..

Johnson wrote:I originally posted this on Friday, but it got lost in the ERROR 500 melt-down.

I had angioplasty in Poland in June, and then again in the first week of October. Two days ago, I began to experience dull pain in my LIJV (where an 18 mm balloon was deployed). I also seem to be having an "MS" exacerbation. I was concerned about possible clotting, so I went to ER in Vancouver tonight. I had a full blood work-up, and an ultrasound of my LIJV. There was no evidence of clotting, and infection, dissection, etc. were also ruled out. No idea of the cause of the pain, but I was admonished to return immediately if there were any changes for the worse. So, at least at Mount St. Joseph's Hospital in Vancouver, you will not be turned away, and you can expect to be investigated promptly, completely, and with all due concern. I did inform them of my angioplasty for "MS"/CCSVI history.

(the exacerbation is definite, and nasty)

PostPosted: Fri Jan 14, 2011 10:08 pm
by Dawna
On no meds post-procedure.. they didn't recommend them as I had no stent. Really reluctant to go into my local hosp. Went in for some issues after my first procedure in May 2010 (can't remember why now) but they basically sent me home and the doctor was NOT happy that I had done the procedure.

Is it at all possible that I'm just having major inflammation? I was doing a lot of Advil until yesterday, when I slowly cut back .. am wondering if maybe that was a wrong decision..

PostPosted: Sat Jan 15, 2011 1:59 am
by NHE
Hi Dawna,

Dawna wrote:On no meds post-procedure.. they didn't recommend them as I had no stent. Really reluctant to go into my local hosp. Went in for some issues after my first procedure in May 2010 (can't remember why now) but they basically sent me home and the doctor was NOT happy that I had done the procedure.

Is it at all possible that I'm just having major inflammation? I was doing a lot of Advil until yesterday, when I slowly cut back .. am wondering if maybe that was a wrong decision..


Dr. Sclafani has mentioned in his thread that angioplasty injures the lining of the vein and that this injury makes the vein much more prone to clotting. A blood thinning/anitcoagulant regimen of some sort is required to prevent clotting. The rapid change in your status suggests that you should get checked out by a doctor ASAP.

NHE

PostPosted: Sat Jan 15, 2011 6:16 am
by LR1234
......

PostPosted: Sat Jan 15, 2011 12:19 pm
by mavis
Dawna,

I am also in Canada (ON) and this is what happened to me. After a routine u/s the radiologist found a blood clot in my jugular vein and called my family doctor. Then my family doctor called me and urged me to go to the emergency room. I had all your suspicions and fears about the reception at the ER, but nonetheless I went. Nobody, and I stress NOBODY passed any judgement, NO insensitive remarks, nothing. I talked a bit about the procedure I had (doctor had no idea about it), where I had it done, and the complication I was having. She ran some blood tests, then put me on Heparin and referred me to the Thrombosis Clinic.

So, you should go to ER asap if you ask me. Clot is serious. Tell them you have a very bad pain in your neck and shoulder. I am pretty sure they will check it out. A simple u/s(It doesn't have to be per Zamboni protocol) will tell if you have a normal blood flow.

Good luck.

PostPosted: Sat Jan 15, 2011 1:14 pm
by thornyrose76
Dawna, where did you go to have the procedure done? I'm just wondering why they would not prescribe blood thinners...

As everyone is saying head straight for the emerg, they are saying they won't turn anyone away, and stand your ground! It's highly unlikely they will refuse you treatment...BUT do let everyone know how it goes! GEt back to us
!

PostPosted: Sat Jan 15, 2011 4:41 pm
by Dawna
I went to my local ER. Funny though, the doc I saw said "uh. I have no experience with jugular veins.. so I really don't know what to tell you". He talked with a radiologist and decided to do an ultrasound. The ultrasound showed that the vein was fine and had no tears etc. Didn't show any clots. So I guess my body is just UBER sensitive and reacting with inflammation .. at least that is his thought. Will keep plugging along.. at least I know there is no clot.

Thanks for all your advice. It was so appreciated!

PostPosted: Sat Jan 15, 2011 5:04 pm
by mavis
Very good news indeed Dawna, you can sleep easy tonight :wink:

PostPosted: Sat Jan 15, 2011 5:52 pm
by NotFound
Dawna wrote:I went to my local ER. Funny though, the doc I saw said "uh. I have no experience with jugular veins.. so I really don't know what to tell you". He talked with a radiologist and decided to do an ultrasound. The ultrasound showed that the vein was fine and had no tears etc. Didn't show any clots. So I guess my body is just UBER sensitive and reacting with inflammation .. at least that is his thought. Will keep plugging along.. at least I know there is no clot.



Whew!

I had dull pain in my jugulars after procedure too. Somewhat increased during the second week after, then gradually subsided.

PostPosted: Sat Jan 15, 2011 5:54 pm
by Dawna
Thanks! This "second week" increase in pain had me worried. My doc (I finally got ahold of him) said it was probably just inflammation still, as everything looked great during and after procedure. It's hard to keep resting.. esp. when the procedure first time around I had NO pain. So now I know what it feels like to have the procedure done correctly and thoroughly.. takes time to recover!!

PostPosted: Sat Jan 15, 2011 6:23 pm
by Cece
Glad to hear this. This stuff can be scary! If you've never read LR1234's story, it's a doozy, worse-case-scenario kind of stuff.

PostPosted: Sat Jan 15, 2011 6:40 pm
by Dawna
where would I find that story?