Liberated PPMS'ers, please post your experiences here!

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

Postby Astrid1961 » Wed May 26, 2010 1:12 am

I am 48, and have ppms. I will have the scans in Germany, Dusseldorf, on 17 june. Mri( 3 tesla) , echo-doppler, and ct scan( this is a trial, and because of this it is free) . For me Dusseldorf is only 1.5 hour driving bij car.
They start this week.

When you have treatment there you get 5 sorts off tests first, they do only balloonig and no stents. And after 90 days you come back for a check up with doppler, and all off the tests. When there is restenosis , you get a new treatment for free.

Astrid
User avatar
Astrid1961
Newbie
 
Posts: 7
Joined: Sun Dec 27, 2009 4:00 pm

Postby willm » Wed May 26, 2010 2:44 am

Can I just offer a BIG THANKYOU to TIMS and its many contributors for the information and support that you've provided over the last year or so and the last 6 months especially!

I was diagnosed with PPMS in 2007 having experienced a very slow deterioration in leg strength over the previous 8 or 9 years. I am now at the point where I need a walking stick to walk anywhere outside the house and can only cover short distances before having to rest as I suffer greatly from physical fatigue. My stomach muscle strength has also been affected. Apart from urinary urgency and cold hands and feet, I do not experience any other symptoms and my upper body seems to be currently uneffected.

I underwent angioplasty to the lower parts of both jugulars on the 12th May 2010 in Katowice, Poland. There was a narrowing at the base of the left and what appeared to be a late opening valve at the base of the right. The before and after videos seem to show slight improvements in flow.

I have not experienced any improvements in my symptoms to date (though it's only 14 days) and my hands and feet are still cold. I was told in Katowice that it can take up to 3 months to experience any changes. I have always rigourously monitered my progress and I am confident that if anything happens I will know.

I had really hoped for some sort of indication of an improvement such as the warm hands and feet that so many people report post-procedure. I guess it's just a waiting game now possibly followed by some tough decisions regarding another trip to Poland for more tests and maybe stents.
User avatar
willm
Family Member
 
Posts: 26
Joined: Fri Nov 27, 2009 4:00 pm

Postby esta » Wed May 26, 2010 9:04 am

NZer1
we had a better test in katowice than the ones here. when i went back for retesting because i was still in europe and i requested it...i completed the simple test again which was 4 pages long, and we could see the changes. maybe someone could get a copy and download it here and we could use it.
too bad i never thought of it while i was there.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby esta » Wed May 26, 2010 9:13 am

DBird
no one knows what to do for followup but Dr Schlfani recomended we find one Dr for it. i'd say per province or somerhing. my plan, because i live in BC is to try False Creek, Dr Godley...I don't think many are returning to Poland.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby Downunder » Wed May 26, 2010 7:45 pm

willm wrote:

I have not experienced any improvements in my symptoms to date (though it's only 14 days) and my hands and feet are still cold. I was told in Katowice that it can take up to 3 months to experience any changes. I have always rigourously monitered my progress and I am confident that if anything happens I will know.

I had really hoped for some sort of indication of an improvement such as the warm hands and feet that so many people report post-procedure. I guess it's just a waiting game now possibly followed by some tough decisions regarding another trip to Poland for more tests and maybe stents.



I too have PPMS. It took a while after the procedure to notice any changes, but there were a few............ a little more energy, less heat intolerance, my 'bad' hand started to straighten out.

I re-stenosed 6 weeks after the procedure and have had a repeat venoplasty (at 10 wks). Within 24hrs my hand started to re-open again.
I have not had any change to my cold (frozen) foot at any time, so don't rely on that as an indicator.

Give yourself that 3 months as the crap has to be drained from your brain and then repairs can begin.

Good luck Jennifer
User avatar
Downunder
Family Member
 
Posts: 89
Joined: Mon Dec 21, 2009 4:00 pm
Location: Melbourne, Australia

Postby Fernie12 » Sun Aug 08, 2010 5:47 pm

BUMPING THIS ONE!!

I was diagnosed with PPMS in January, 2008. I had the treatment in NY last week - no changes yet, but it's really, really early. Any other PPMSers with any updates to tell?

Thanks!
User avatar
Fernie12
Family Member
 
Posts: 51
Joined: Mon May 03, 2010 3:00 pm

Postby newlywed4ever » Sun Aug 08, 2010 6:08 pm

I was dx PPMS in 2000 (never had RRMS) and had angioplasty 8/5/10 in Albany. My right foot is warmer, balance is better, I might have better heat tolerance (it's still miserably hot, tho!), I can walk backwards and can squat down and stand back up w/o getting dizzy, and the fatigue level is better. I was 100% blocked in left IJV and also had angioplasty of azygous (both were ballooned - no stents). I was also the worse case of May-Thurner the doc had ever seen but he advised that my body has compensated efficiently. I'm thrilled - will pursue PT and I hope the right foot drop improves! My daughter was dx 2009 with RRMS and she also rec'd treatment...I had wondered if we had similar blockages but she had 50% blockage in the right IJV. Thanks to everyone before me who has posted their experience - it means alot! And so does the reports yet to come....
newlywed4ever
Family Elder
 
Posts: 255
Joined: Thu Apr 17, 2008 3:00 pm
Location: Michigan

albany

Postby blossom » Wed Aug 11, 2010 8:31 pm

symptoms started 1990 after bad fall. diag. ppms in 1994. i am a white female i will be will be 64 in sept. in wheelchair-can transfer-bladder problem-r.side pretty much done-left side weakening. very purple cold swollen feet after sitting a short time. always normal and warm when i first get up. hands usually cold.
treated in albany by dr. englander aug. 3. i wish i were awake during procedure but do not recall a thing. was told in recovery both juglars were ballooned-no stents-no may thurner. dr. sisken did doppler next day-said it was flowing good. he said he could not check the agygos vein with his office doppler. it was a very brief visit. i did talk to dr. englander today by phone and she said there was some problems with agyous but it was corrected. i will be on plavix 3 mo. no bad bruiseing no bleeding not a bit sore anywhere.
my left leg has numbness it did not have before that was noticeable as soon as i came out of recovery. i talked to dr. englander today about it hopefully because there are nerves by the groin area it will take time but go away.
small improvement is that from early on my r. eyelid blinked slower than the left one. not hard to live with none the less i can say it improved.
at times i think my feet and hands maybe warmer. and i don't seem quite as stiff at times.
i can't explain this only to say it feels like deep in my muscles they are itchy-i want to hope it is blood flow improvement.
so, i'm trying to rest and wait and hope. it is really hard to travel the distance i had to and that in itself can take it's toll.
i didn't get this way overnight so it will take time and in the meantime i feel there are doctors that are flying under the radar who are working on ways together that will help us all. i hope it's soon we all deserve and want a life. i am grateful for the chance to try and i am anxious and hopeful for the future. i sure hoped for more than an improved eye wink but hey it's not over till it's over. will post if any improvment and if 3 mo or a yr. from now i'm the same then that's a hugh improvement. but i do want more just like all of you do. soooooooooooo time will tell.
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

Postby Trish317 » Wed Aug 11, 2010 8:52 pm

Sending you prayers for continued healing, Blossom. Rest and take good care of yourself.
User avatar
Trish317
Family Elder
 
Posts: 357
Joined: Sat Sep 06, 2008 3:00 pm
Location: Rhode Island

Postby Fernie12 » Thu Aug 12, 2010 9:41 pm

Thanks so much for your responses! If/when I notice improvements I'll let you all know.

I had a balloon in my LJV - it was "pretty" stenosed and one in my RJV "kinda" stenosed...to use some medical jargon! LOL! I did not have any narrowings in my Azy at all - this kind of surprised me, but that is what the Doc said.
User avatar
Fernie12
Family Member
 
Posts: 51
Joined: Mon May 03, 2010 3:00 pm

Postby esta » Fri Aug 13, 2010 8:54 am

hi fernie22
where did you have your procedure done? i was surprised my azygos vein wasn't stenosed too as i have PPMS. I'm leaving to return to Katowice next week, as i have restenosed in my RJV and will ask him to ck my azygos sitting up this time.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby EnjoyingTheRide » Sat Aug 14, 2010 8:13 am

Last week I had a follow-up ultrasound, using the Zamboni protocol. If you are interested, please read the update at my blog:

http://www.enjoyingtheride.com/2010/08/ccsvi-diagnosis-and-treatment-log-entry.html

I had both jugulars and azygos ballooned on March 17- Dr. Sclafani.

Long story short- I now meet none of the 5 criteria, of which you only need to meet 2 for a positive diagnosis of CCSVI. I wish I had this test before my March procedure for comparison.

What really matters to me though, is whether my progression has slowed, stopped, or remained steady, and I still cannot answer that question yet.
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 Fernie12 » Sat Aug 14, 2010 9:04 am

@ETR: I truly believe there is more to this than meets the eye - crazy that you have 0 of the 5 criteria!

@esta: I had the procedure done by Dr. Mondato (works with Siskin) in Albany

@blossom: I hope for you to have continued improvements too. Time will tell - and heal, I hope!

I am feeling less fatigue the last day or so, both mentally and physically - might be the change in weather, but I hope it's more than that. Fingers crossed!
User avatar
Fernie12
Family Member
 
Posts: 51
Joined: Mon May 03, 2010 3:00 pm

Postby Donnchadh » Sat Aug 14, 2010 11:44 am

Downunder wrote:
I too have PPMS. It took a while after the procedure to notice any changes, but there were a few............ a little more energy, less heat intolerance, my 'bad' hand started to straighten out.

I re-stenosed 6 weeks after the procedure and have had a repeat venoplasty (at 10 wks). Within 24hrs my hand started to re-open again.
I have not had any change to my cold (frozen) foot at any time, so don't rely on that as an indicator.

Give yourself that 3 months as the crap has to be drained from your brain and then repairs can begin.

Good luck Jennifer


Jennifer:

Has your second liberation procedure sustained the opened veins? How long has it been since your second procedure? What are the improvements and how great are they compared to your symptoms before your first procedure?

I am also progressive "MS." My first procedure resulted in dramatic improvements for all of my symptoms, but unfortunately my IJV's re-stenosis after only six days post procedure. This was later confirmed by ultrasound and MRV.

After my second procedure (the IR only opened up the left IJV; the right IJV is still collapsed), there were some improvements but not as comprehensive as after the first time.

However, I have developed an iron savaging protocol which seems to be producing gradual but steady improvements. I am thinking more and more that many CCSVI patients are going to need at least two treatments due to the high rate of re-stenosis. Also, most are overlooking the second key part of Dr. Zamboni's CCSVI theory: deposited free iron is the culprit for initiating the cascade of "MS" symptoms. I am trying to aid the body in its recovery by helping get rid of this free iron-because its been twenty years since my injury there's a lot to get rid of.

One of the symptoms which partially disappeared after the second procedure was tinnitus in both ears. There was still some left in my right ear, and would especially hear it after waking up (which makes sense because when you are supine that's when the IJV's are supposed to be open and draining blood-mine weren't).

After 3 weeks into my protocol, the ringing is almost entirely gone, even after waking up. In the meantime, I am hoping my first IR's IRB gets approved!!!!

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

ccsvi

Postby blossom » Sat Aug 14, 2010 1:26 pm

donchadh, would you mind shareing what you are doing to help the iron issues?
User avatar
blossom
Family Elder
 
Posts: 1368
Joined: Thu Dec 03, 2009 4:00 pm
Location: south western pa.

PreviousNext

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