Greetings and update

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

Greetings and update

Postby BooBear » Mon Nov 22, 2010 9:20 am

Hi, all! It has been a while since I have posted- mainly because I have been busy, busy, busy.

Overall, I have been doing very well since my Aug. 13 liberation. However, today I awoke to a numb left leg. That said, I view it as a "wake up call" to take my Vitamin D supplements, get back to quitting smoking (yes, I started up again a bit back) and keep focused on my exercise routine.

How is everyone else faring?
Three veins angioplastied.  One renewed life.  
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Postby Blaze » Mon Nov 22, 2010 10:24 am

Great to hear from you Boo. Don't overdo--and give up those smokes!
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Postby Cece » Mon Nov 22, 2010 10:28 am

Was that a new symptom or one you've had before, BooBear? Are you also due for a doppler ultrasound recheck soon? Glad you're checking in and that things are going well! :)
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ccsvi

Postby blossom » Mon Nov 22, 2010 10:32 am

hi boobear, glad to hear from you and over all you seem to be doing well. don't beat yourself up about your slipping up with the smokeing although we all know even if we never had ms it is not the best thing. but, i'd venture to say that there is not any data yet that smokers are restenosing or having other problems at a higher rate than non smokers. stress is just as hard on us as smokeing so some think. so, i guess you do the best you can and try not to stress about it or you will probably end up smokeing more. in no way am i saying smokeing is a good thing. but, with all we deal with just getting through the day it is very hard to give up your best friend who is also our worst enemy.

just glad you are letting us know how you are doing. best to you.
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Postby BooBear » Mon Nov 22, 2010 10:33 am

It's sorta new, Cece. My left hand is completely numb (and has been for two years), so the leg issue this morning is on the same side of the body. But, I have never had numbness in my legs before to this degree.
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Postby Cece » Mon Nov 22, 2010 10:50 am

BooBear wrote:It's sorta new, Cece. My left hand is completely numb (and has been for two years), so the leg issue this morning is on the same side of the body. But, I have never had numbness in my legs before to this degree.

New symptom, post-venoplasty. :(

I never really understood what numbness was supposed to be until June of this year, when my arm went numb up to my shoulder.

Do you have a local follow-up IR who does CCSVI dopplers?
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Postby blossom » Mon Nov 22, 2010 12:14 pm

boobear, i had never experienced numbness whatsoever although the rest of me is pretty much a mess. but, for me immediatly after the procedure my left leg was numb it felt like when you go to a dentist numb. it has since progressed through the groin area and right leg somewhat.

i was really concerned about clots or possible vein injury. my procedure was aug. 3 in albany at siskens. i had a doppler done here in my hometown oct. 1. they said no clots and i have flow. i hope they are right. i'm gonna try to get them done every couple of mo. for the yr. if i can.
have you had a doppler yet?

unlike you, i really got little out of it. i don't know how long after the procedure we need to have concern about clots etc. i know siskens reccommended getting follow ups every 3 mo. for a yr.

even though there is a lot of info. out there i still feel in some ways we are winging it. especially if there are no dr.'s near you that are interested in ccsvi.
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Postby Interrupted » Mon Nov 22, 2010 12:42 pm

Hi BooBear, I hope the leg problem is a temporary glitch!

The procedure actually gave me on/off numbness in my digits, hands, feet, and little way up my arms. AND made my extremities about 4x more freezing (how annoying when everyone else is warming up! lol)

Understand about the smoking, I quit a few weeks before my date and i'm eating like a horse STILL trying not to cave in and return to it. There just is no replacement when you're stuck at home all the time! 8O
Part of me would still rather be smoking than constantly chomping to abate the pangs (why aren't they going away???!) especially since i've had no joy with the first procedure, but urgh it took so much to actually quit I know I cannot cave :?
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby 1eye » Mon Nov 22, 2010 1:53 pm

Don't smoke. If you have congenital venous malformations, do you not think your heart may also be somehow affected? Smoking is a prime risk factor for your heart. So is overeating. Of course, you could be like me, quit smoking, then overeat like there's no tomorrow, have a heart attack and combined with CCSVI lose weight no matter how much you eat. But I don't think you want that. Try to control it. Heart attacks are no fun, take it from me.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Trish317 » Mon Nov 22, 2010 8:06 pm

I've been thinking of you, BB, and wondering how you are. I hope the leg numbness gets better. Please give up those cigarettes.

Hugs!
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Re: ccsvi

Postby drsclafani » Tue Nov 23, 2010 4:52 am

blossom wrote:hi boobear, glad to hear from you and over all you seem to be doing well. don't beat yourself up about your slipping up with the smokeing although we all know even if we never had ms it is not the best thing. but, i'd venture to say that there is not any data yet that smokers are restenosing or having other problems at a higher rate than non smokers. stress is just as hard on us as smokeing so some think. so, i guess you do the best you can and try not to stress about it or you will probably end up smokeing more. in no way am i saying smokeing is a good thing. but, with all we deal with just getting through the day it is very hard to give up your best friend who is also our worst enemy.

just glad you are letting us know how you are doing. best to you.


smoking results in increased risk of clotting.
cardiovascular disease worsens outcomes in MS

therefore try to quit smoking every day until you no longer have to try to quit
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Postby BooBear » Sun Nov 28, 2010 1:29 pm

Thanks for the kind words, everyone. I have increased my Vitamin D and am trying to give up the smokes- it isn't easy, but I am trying.

The freezing sensation I totally get- my leg feels like it is encased in ice and is super sensitive. I am convinced that smoking is to blame- now the hard part.

Thanks for all the support! I am not giving up!
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Postby EJC » Sun Nov 28, 2010 2:22 pm

The critical part of quitting smoking is "wanting" to give up.

Feeling like you should give up becasue of various reasons will only end in failure. Once you actually "Want" to quit it's actually quite easy.

I stopped a 40 a day habit cold turkey 10 years ago, I just woke up one day and said I'd had enough of coughing and smelling like a stale ash tray...it was tough for the first two weeks then I never looked back.
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Postby BooBear » Mon Nov 29, 2010 6:53 am

Thx, EJC. You are right, of course. My habit is actually mild in comparison ( I do not even smoke a pack a day), but it needs to go.

The good news is that I have resumed my Vitamin D regimen with vigor, and I dare say it appears to be helping. Leg is still numb as I write this (and flipping freezing! Especially my foot!), but seems less sensitive than in days past.

I should clarify that I use the word "numb" because it is the only thing that comes close to the sensation. You know that sensation you feel a split second before "pins and needles" kick in? That's what I feel all the time with my leg. Doesn't get the prickly sensation- so I guess that's something. Constant pins and needles would drive me nuts.
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Re: Greetings and update

Postby pklittle » Tue Nov 30, 2010 6:35 am

BooBear wrote:Hi, all! It has been a while since I have posted- mainly because I have been busy, busy, busy.

Overall, I have been doing very well since my Aug. 13 liberation. However, today I awoke to a numb left leg. That said, I view it as a "wake up call" to take my Vitamin D supplements, get back to quitting smoking (yes, I started up again a bit back) and keep focused on my exercise routine.

How is everyone else faring?


Sorry to hear this BooBear. I too have increased numbness in my legs (left more than right) since my June procedure. It has not subsided. :(

btw, I strongly advice that folks get checked 1 month post-procedure. Do not wait until 3 months as I did. Sometimes that is too late.
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