Post-procedure changes in blood flow in legs - anyone else?!

cara28 · Post by **cara28** » Fri Aug 13, 2010 7:51 am

Hi everyone,

I am four weeks post-procedure and am noticing strange sensations in my calves, and wanted to check if anyone else is experiencing the same thing.... I'm finding it hard to find a doctor here to take CCSVI seriously so I don't hold out much hope for advice there!

Basically, it feels like there's a kind of fluttering in the veins in both calves... It happens regularly (I'd say every half an hour) and definitely feels like a blood flow thing... I'm not sure if it's that the blood is having a hard time getting through or what it is... It's only started happening in the few weeks since the procedure - never noticed it before.

Has anybody else had similar sensations? Does anyone have any advice as to what it is, or whether it's something to be concerned about?

Thanks very much!

kiwee · Post by **kiwee** » Fri Aug 13, 2010 8:42 am

good or bad feeling?
do you have the use of your legs?

cara28 · Post by **cara28** » Fri Aug 13, 2010 8:44 am

kiwee wrote:good or bad feeling?
do you have the use of your legs?

Just a weird feeling! I would say bad more than good though... I think it would be best to not be able to feel anything?

Yes, my legs are generally not too bad. Some cramping and weakness but I am still walking and my symptoms are invisible.

kiwee · Post by **kiwee** » Fri Aug 13, 2010 9:03 am

when i said good or bad feeling, your first post was clear as to what youir current situation is. so i wasn't too sure if you were feeling new sensations (warmth) that you haven't felt in awhile.
any colour change? coldness?
where did you get your treatment done? any post op. meds?

cara28 · Post by **cara28** » Fri Aug 13, 2010 9:30 am

kiwee wrote:when i said good or bad feeling, your first post was clear as to what youir current situation is. so i wasn't too sure if you were feeling new sensations (warmth) that you haven't felt in awhile.
any colour change? coldness?
where did you get your treatment done? any post op. meds?

Thanks. My warmth and colour are better. Haven't been on any meds since blood thinners 3 weeks ago (apart from LDN). Was treated in Poland.

I'd love to find out what it is!

blossom · Post by **blossom** » Sat Aug 14, 2010 8:07 pm

when i was early on "20 yrs. ago." i had similiar fluttering and almost like you might have worms crawling and my feet and legs would be hot and cold. i always thought circulation was involved then it slowed down as i got worse. i was happy that my feet were warmer after liberation and i was getting that weird feeling back i even had itching like deep in my muscles again thought my blood was once again trying to regulate itself. unfortunately my feet are like ice today and that fluttering and itchy crawly stuff stopped. so restenosis? everyday is a surprise. ms is aggraviting as hell but it sure not boreing. i think your new blood flow is trying to regulate itself but it's only my thoughts. i think it may be a good thing. if i had it when my blood flow first got screwed up for quite a few yrs. until my body kinda quit and i had it back for a while after liberation i think the body is reacting to the blood flow. like a plant needing water but we're the plant that also needs blood to flow to. hope it levels out good and we hear nothing but positive about you. hope you keep us updated.

cara28 · Post by **cara28** » Mon Aug 16, 2010 5:37 am

Hi Blossom

Thank you so much for the reply. It really encouraged me. I had hoped it was a good thing too and think what you've said makes sense. I just couldn't understand why the sensations were so strong. My left jugular was 70%blocked pre-procedure so maybe the changes in bloodflow are even more dramatic than I'd realised.

How are you feeling now? I have had days where my feet have felt freezing again but then they have warmed up. Things seem to be up and down a bit. I hope you not feeling great that day was just a little blip and that you're doing well now.

I am doing much better in many ways post-procedure.... I have been reluctant to post an update before waiting long enough for improvements as things seem to be happening gradually for me. Pain is gone, cramping is largely gone, brain fog is gone, still really struggling with fatigue, handwriting and can feel that my right arm and leg are weaker than the left. Hoping it'll balance out over time though!

Thank you so much again for your reply. It really encouraged me, and I hope you're doing well again.

kc · Post by kc » Mon Aug 16, 2010 5:32 pm

I am 6 weeks post op and am feeling the same things in both my legs. I say to myself "ah my left food just opened up, my right calf just opened up". I get happy when this happens , I think healing is taking place in the tissues. After it happens, I can feel more and more better.

It is all lovely

kc

blossom · Post by **blossom** » Mon Aug 16, 2010 10:09 pm

cara28, could i ask what type ms, how long diag. and age? don't know if in some ways it matters but the name ms means multiple symptoms and then they give it multiple names like we weren't kept in the dark enough. most of these neuro.'s kinda remind me of my x-husband- they keep us confused and in the dark and will never admit they are wrong or for god's sake don't be a patient with questions or an opinion. did you have any trauma like an accident or fall shortly before onset or a previous say neck injury? just curious. i've got my thoughts on myself personally about my multiple symptoms disease but could never get a dr. to address it seriously ccsvi is the closest thing and makes so much sence but i hope i can find a way to check out a some things with me and hope it answers some stuff maybe for more than just me. the fact that my leg went numb "bad thing" but my feet and hands warmed up and i'm not as stiff this flipping i call it the crawly itchy feelings all occurred after i had treatment and convinces me that good results or bad they are working on the area that they need to be but there is a connection that is kind of like not seeing forest for the trees. i experienced that crawly stuff early on in diag. then quit now blink blink . hang in there that's all we can do but this is not placebo and hope you are doing better please keep us informed.

Cece · Post by **Cece** » Mon Aug 16, 2010 10:14 pm

Blossom, is any of these new symptoms something you could see your neuro about? Or is there nothing for a neuro to do? I know in RR, we have steroids as an option.

blossom · Post by **blossom** » Mon Aug 16, 2010 11:47 pm

probably there might be some drug that would help camoflage the annoying feeling. and i opt to stay away from drugs if possible. this definitely has a connection to the procedure and i want to try to be aware of any changes good or bad and that my body kinda adjust to all this. believe me if it gets to a point i will say i want drugs and i want them now. but, im wondering about all the nerves that can become compressed depending on how tight the area is they balloon or stent. i had no stent so i keep hoping this lets up. the dr. said that there are nerves where they enter the groin that may have caused this. my gut feeling is a nerve in the neck area. have you ever read or heard of anyone experiencing numbness after angioplasty that was done for other problems?