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Posted: Sun Mar 13, 2011 5:34 pm
by Bobbi
Bruce, sorry to hear about your wife's complications. Hopefully it can be sorted out.
Erin, it has been three weeks now for me and the pain in my left side has subsided. I was ballooned twice in the left with a 16mm which they held there for two minutes. It was very tender. I did some neck stretches (easy) and massaged it daily. This might not work if the vein was stented. Good luck.
I am feeling energetic and eager to get going but my balance is still off but better. I still use the walker but started back with my trainer at the gym and she was amazed at how well I did my routine and gave me 5 minutes on a slow tredmill. Bladder is so much better and I am sleeping through the night. I have to stay optimistic because I am convinced that with the new blood flow it means more changes to come.
By staying positive and caring we will conquer this MS.
Posted: Sun Mar 13, 2011 5:37 pm
by Bobbi
Posted: Tue Mar 15, 2011 5:40 am
by erinc14
it's getting better . yes , i noticed the left side is worse . here is what a nurse friend of mine said :
Warm is good; it will take awhile for the tissues to get re-oxygenated and repair. The neck pain will get better, but it is a sensitive area. Glad you posted and it sounds like it went well.
Just curious...Has anyone heard from Albany lately?
Posted: Wed Mar 23, 2011 11:31 am
by ing
[quote="Bobbi"]I get so excited watching this list progress!!
[b] :D Scotland;CAN;June;Nov15: Mandato :lol:
:D Bruce(wife);CAN;May26;Dec1: Englander :) :lol: :(
:D Tfau(husband);CAN;May28;Dec14: Mandato 8O
:D Guider(son);CAN;June1;Dec14: :?:
:D Athena;CAN;June3;Dec17>Feb: :?:
:D Dee13;CAN;June7;Jan4: 8O
:D lovebug;CAN;June7;Jan;>Cal: Sept23: Arata :?:
:D Jewelia;CAN;June7;Jan3: :lol: [/b]
:?: Daniel;CAN;June21;TBA:
[b] :D Erin14;CAN;June23; Mar10: Siskin :? [/b]
[b] :D Redfern;CAN;June28;Mar11; Siskin :?: [/b]
:?: LisaAnn;CAN;June14;TBA: :?: Blaze;CAN;June28;TBA:
:?: NormB;CAN;July9;TBA: :?: Katta;CAN;July13;TBA:
:?: SusiQ;CAN;July12;TBA:
[b] :D Bobbi;CAN;July19;Feb19: Englander ... Special Saturday :lol: [/b]
[b]:D mser54;CAN;July22;Feb8; Siskin ... Cancelation :lol: [/b]
:?: MsJae;CAN;July23;TBA::?: Ingrid;CAN;July26;TBA:
:?: ThornyRose;CAN;Julyend;TBA:
:?: Digreg (husband) CAN; Sept 19th;TBA
:?: Issa;CAN;Oct22;TBA:
[b] :D Nov30rssugg;US;Nov8: :?:
:D Brave;US;June28;Nov24: Siskin :?
:D detneamber;US;July15;Dec 29>Jan11: Siskin :?:
:D Java Bean;US;?;Dec13: Siskin :(
:) longman(wife);US;?;Dec17: Mandato :D
:) Joe;US;Aug10;Feb3;Mandato :?: [/b]
:?: MSHope;US;?;TBA?[/quote]
Thanks.
Posted: Wed Mar 23, 2011 8:00 pm
by 1eye
I need to post this here so all can see it. Thanks, Dr. Siskin. I think it's working. I did half an hour today at level 15 on this weird machine you can strap your feet onto. Still a tad sweaty. It has another gizmo you pedal with your hands on at he same time. Kind of a hand-foot stationary bike oddity. I think I will stick to the nustep.
Anyway I can't tell you folks how grateful I am that the progression seems to have stopped. I was SPMS, and I don't know what I am now. I kind of like it that way. Keeps my GP guessing. Thanks for the short work you made of my veins, and the cost benefit just keeps on going down! Most of the people at that meeting on Monday have been treated, and I am guessing, a lot by you guys. When I walked in with my walker, they applauded.
Your pal,
Chris
Posted: Thu Mar 24, 2011 8:20 am
by Bobbi
Thanks for sharing Chris (1eye). It is great to hear from the earlier pioneers about further positive outcomes.
It is encouraging and reminds me to not give up. My body of 20 years with MS needs to allow the new blood flow to massage the areas that have given me trouble and bring them back to life.
Are there any more CCSVI pioneers out there that are willing to share?
Re: Thanks.
Posted: Thu Mar 24, 2011 8:37 am
by Cece
Lots of applause from here too. For you and Dr. Siskin's group. I think too with using a walker instead of a chair, that is a workout in itself, you must be getting stronger and stronger. I love hearing it, 1eye, you are one of the success stories, so glad you got it.
Posted: Mon Mar 28, 2011 11:05 am
by ing
Just wondering if anyone has heard from Albany (Dr. Siskin's group) regarding upcoming appointment dates. Since they have moved to their new system (MS Patient Portal), appointments seem to have slowed down (?)
Thanks
Posted: Mon Mar 28, 2011 5:48 pm
by Cece
Here's a great blog with details from a person who had their venoplasty done with Dr. Siskin:
http://pensionpulse.blogspot.com/2011/0 ... ation.html
Dr. Siskin has kindly added several paragraphs of feedback or response at the bottom as well.
Here is also a link to a blog in CCSVI Locator (can't see it without joining):
http://ccsvi-ms.ning.com/profiles/blogs ... proressive
One of the comments, from Linda, was that when her vein was ballooned, it went from draining 5% to draining nothing. She was allowed the option of turning down stents, which is contradictory to what we've been told before, that in such situations stents are mandatory. She did turn this down. I still don't understand, why would a vein get worse like that immediately after ballooning? I do not know if this was a valve stenosis or a hypoplasia or a high-up stenosis if those would offer any explanation.
