Liberated PPMS'ers, please post your experiences here!

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

Postby Fernie12 » Mon Aug 30, 2010 5:49 pm

I totally get what you are saying, Blossom. It's your numbness that is the big key issue. Is there a way, or have you already, phoned the Dr. who performed the procedure on you? What do they think?

As you said, things are moving and changing so quickly in the CCSVI world...the Drs are learning as they go. Maybe they might have some insight for you? I too believe that they will get better and learn more and more.

Keep up the faith and I really hope you get someone close to you soon who will offer the procedure. I too think we need solutions and support close to home.
User avatar
Fernie12
Family Member
 
Posts: 51
Joined: Mon May 03, 2010 3:00 pm

Good news & bad news

Postby val57gal » Fri Sep 03, 2010 8:06 pm

Had my follow-up visit to the 2nd procedure today. (To see the discussion of Dr Arata’s new CCSVI treatment center, see the thread about him started by lovebug.)

Keep in mind, this is my version of what he said--I could be off on the medical terms.

Good news:
:D The improvements I reported above (less a.m. stiffness, better bladder control, less swollen/lighter feet) are still holding.
:D Dr A doesn’t expect me to restenose again, because he opened my azygous & IJVs really wide—20mm for the right IJV. (He agrees with Dr Tariq in Kuwait that this is the way to go.)
:) I didn’t have May-Thurner.
:) We may have found the root of my problem—I don’t have a left ascending lumbar vein as I should; instead, I have a “lacy network” of tiny veins.

Bad news:
:( There’s no treatment for such tiny veins. So, although ballooning the azygous will help drainage out from the network, nothing can be done about any blockage or reflux inside that lacy network.


I’m still absorbing this news. If it means that I’ll stay how I am forever without getting worse, I can deal with that. Maybe I’ll pursue some of the iron removal ideas in this forum. But I think I’ve gotten all the benefit I’m going to get from liberation (and I’m not sneezing at that!)

I guess I’m more proof that PPMS does not have a simple open-the-neck-veins answer.
User avatar
val57gal
Family Member
 
Posts: 43
Joined: Wed Jun 16, 2010 3:00 pm

Postby Fernie12 » Sat Sep 04, 2010 5:51 am

That is really good news, Val. I am so happy that you are noticing improvements and there will be some kind of answer about your vein as the theory is more and more accepted. I really think so. Just keep hanging on to every little good nugget that comes from this and we'll be golden :-)
User avatar
Fernie12
Family Member
 
Posts: 51
Joined: Mon May 03, 2010 3:00 pm

Postby esta » Sat Sep 04, 2010 9:45 am

I have PPMS, and just retuened from Dr Simka for my 2nd procedure. I got my RJV stented, and he went in on the left to ck my azygos again, plus my iliac vein. I am grateful for the extra attention. Just finding this time is a slower recovery, but recovery it is!! I would like to get passed the jet lag, and non-stop company before I fully report my changes because by then they should be significant. I am half way towards my first changes...this is good news so far, and I'm so much more relaxed about it all.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Re: Good news & bad news

Postby Donnchadh » Sat Sep 04, 2010 9:54 am

[quote="val57gal"]

snip

:) We may have found the root of my problem—I don’t have a left ascending lumbar vein as I should; instead, I have a “lacy network” of tiny veins.

Bad news:
:( There’s no treatment for such tiny veins. So, although ballooning the azygous will help drainage out from the network, nothing can be done about any blockage or reflux inside that lacy network.

snip

quote]

I am glad you experiencing some improvements. Your "root problem" is
indicative that CCSVI is vascular in origin and (probably in most cases), congenital. Nothing about being an autoimmune response to some unknown causal agent.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 4:00 pm

Postby Daisy3 » Sat Sep 04, 2010 10:47 am

I agree with Donnachadh,

P.S. Love the kitty:_)
User avatar
Daisy3
Family Elder
 
Posts: 308
Joined: Tue Feb 09, 2010 4:00 pm

Postby val57gal » Sat Sep 04, 2010 10:50 am

Donnchadh says:
Your "root problem" is indicative that CCSVI is vascular in origin and (probably in most cases), congenital. Nothing about being an autoimmune response to some unknown causal agent.


Val57gal says:

I agree with you, but I wouldn't take my statement as proof--I already agree that MS/CCSVI start with a vascular problem, whereas most neuros would say it's not a root cause at all, just a coincidence.
User avatar
val57gal
Family Member
 
Posts: 43
Joined: Wed Jun 16, 2010 3:00 pm

Postby Cece » Sat Sep 04, 2010 6:26 pm

I'm no longer so concerned with what the neuros think. Ball's in the IRs court, I think, and they know what to do with it.

Val, will you keep us posted with your case especially? I am hopeful that with people with the unfixable lumbar vein problems, that the successful opening of the azygous will be enough to handle the overflow from what should've gone thorugh the ascending lumbar vein. The whole idea being that to have CCSVI leading to MS, you have to issues in more than one place, because the body has redundancy built in to compensate for a single blockage. Hopefully this will mean you will still see improvements and good health.
Cece
Family Elder
 
Posts: 8994
Joined: Mon Jan 04, 2010 4:00 pm

Postby EnjoyingTheRide » Wed Sep 15, 2010 3:43 pm

I just updated my blog (link at bottom) with my six month post treatment report. It's not good news.
Mitch
Please visit my blog at www.enjoyingtheride.com
User avatar
EnjoyingTheRide
Family Member
 
Posts: 75
Joined: Thu Nov 12, 2009 4:00 pm
Location: Maine

Postby Lyon » Wed Sep 15, 2010 4:07 pm

.
Last edited by Lyon on Sun Nov 20, 2011 6:21 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby newlywed4ever » Wed Sep 15, 2010 6:00 pm

Mitch/EnjoyingtheRide - your honest appraisal is very much appreciated and just as important as the glowing accounts. And, like you said, you are emotionally healthy - you are a hero and I thank you.
newlywed4ever
Family Elder
 
Posts: 255
Joined: Thu Apr 17, 2008 3:00 pm
Location: Michigan

Postby prairiegirl » Wed Sep 15, 2010 6:18 pm

Thanks Mitch for sharing your truth, and in such a poignant and eloquent (as always) way. I don't post many responses on your blog although I am a regular reader of it. You have some great insights and I appreciate your humour, philosophy and continued optimism even with the cards you have been dealt. Gotta say, your "black swan" posting was one of my faves. Thanks again for sharing your experience in such an honest and straight ahead way.
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 4:00 pm

Postby esta » Thu Sep 16, 2010 11:54 am

hi all
i almost feel guilty feeling good...almost
I feel happier-thats soooo much nicer
this week I just find i'm on, and feel strong and great, then fatique sets in as quick, and i can do nothing. it's the 2 forwarfd, 1 back dance. i am back at my pool, doing 1/4 of what i did for exercise, but at least i'm back..sleeping well, which is new, plus sleeping in...couldn't before.
its so slow, but, somehow better each week. its only by keeping track, that i know i am..
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby JCB » Wed Sep 22, 2010 1:59 pm

One week post liberation. Diagnosed PPMS 11/07. I was confident they would find something wrog with my azygous but they didn't. My symptoms are all right sided, arm, hand, leg and foot.

1 week post procedure, my gait is a little better, my arm is a little stroger. Still can't move my right toes but I have felt pretty good the last three days.

My right side is still a little cooler than my left, and my right hand is a little swollen still. I did my excersize band work out last night and feel good again today. I am in the wait and see mode. My muscles didn't atrophy overnight, I'm assuming it will take some time to get some strength back.

I don't feel "fixed" but I feel better. I feel like I can work at getting better now verses working at maintaining and still losing ground.
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm

Postby Rieja » Thu Sep 23, 2010 6:26 am

2 weeks after angio and no symptom relief. Will post weekely outcomes in this thread:
http://www.thisisms.com/ftopict-13757.html
User avatar
Rieja
Family Member
 
Posts: 82
Joined: Tue Jan 12, 2010 4:00 pm
Location: Pittsburgh PA - USA

Previous

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