Once is never enough

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

Once is never enough

Postby LR1234 » Thu Apr 29, 2010 12:10 pm

Hi All,
I am going to have a second procedure done soon hopefully as I have what appears to be a vertigo relapse (I believe brought on by neck manipulation by an osteopath)

It seems that one treatment even with stenting is not enough some people seem to go back for at least a second treatment. (I have just had ballooning)

Has anyone managed to hold onto the improvements from the procedure first time or has everyone eventually felt the progression happening again?

I don't believe the benefits we feel in the weeks following the procedure are placebo and we do have genuine blockages and vein issues but is there anything else in the procedure i.e the fluid via IV or the dye being pumped round the body that could be also contributing to making us feel better?

Would be interested to hear your thoughts
Last edited by LR1234 on Thu Apr 29, 2010 1:02 pm, edited 1 time in total.
LR1234
Family Elder
 
Posts: 1495
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Advertisement

Postby ClaireParry » Thu Apr 29, 2010 12:38 pm

Hi LR,

I'm going to arrange another visit. I had ballooning and at the same time had a relapse. The improvements were really there and if I didn't really believe that I wouldn't go back.

I don't understand how drop foot, breathing issues etc can improve through placebo alone??

Hope you get there soon

Claire
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 3:00 pm
Location: Worcestershire, U.K

Postby LR1234 » Thu Apr 29, 2010 1:08 pm

I agree Claire, I don't believe its a placebo, but what I can't work out is why its so hard to hold onto those improvements. Why do they happen so dramatically straight after the procedure then seem to fade? I felt the improvements, I know they exist. I was able to exercise for weeks after the procedure which I couldn't do before.

I have managed to hold on to some of these improvements despite this relapse.

My eyes and the vertigo are my 2 main symptoms (as well as sensory issues I have had for years)

Are you still in your relapse? If so I wish you better soon x
LR1234
Family Elder
 
Posts: 1495
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby ClaireParry » Thu Apr 29, 2010 1:15 pm

Argh!! It's driving me mad!

I've never suffered with nerve pain before and now I know what it feels like. It's agony.

After the procedure the most notable changes were better fatigue, improved spasticity, far less breathing issues and improved drop foot. I keep hoping that as this relapse improves that may be things will improve, but I doubt they will.

Claire
User avatar
ClaireParry
Family Elder
 
Posts: 218
Joined: Tue Oct 20, 2009 3:00 pm
Location: Worcestershire, U.K

Postby LR1234 » Thu Apr 29, 2010 1:23 pm

So you were in a relapse when you had the ballooning?
I would love to have the procedure done this week to see what it does for the vertigo. I know the vertigo is more on my left side as I am feeling pressure in my left ear (that is the side I had ballooned originally) The nystagmus that comes with the vertigo is a nightmare!
LR1234
Family Elder
 
Posts: 1495
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby magoo » Thu Apr 29, 2010 1:47 pm

I'm good after only one procedure!
I hope you get some answers and relief soon.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Re: Once is never enough

Postby hoodyup » Thu Apr 29, 2010 3:26 pm

[quote="LR1234"]...is there anything else in the procedure i.e the fluid via IV or the dye being pumped round the body that could be also contributing to making us feel better?
quote]

Boopie says "It's the drugs!"

Sorry to hear about you guys needing repeat service. It isn't so much the procedure, but the waiting, the scheduling transportation and if you are paying for it yourself--the money. Best to you both in your 2nd proceures, hope it sticks this time.

Andrew
User avatar
hoodyup
Family Member
 
Posts: 59
Joined: Wed Sep 16, 2009 3:00 pm

Postby 1eye » Thu Apr 29, 2010 3:56 pm

Nope. Some would say placebo effect but I say, rubbish on that mythological voodoo. If you feel better, you feel better. If you re-stenosed, well, consider some people can very temporarily unstenose themselves with the Valsalva manouver, and balloons are a more solid treatment, but do not be surprised if the vein reverts towards its old shape. The veins are elastic, or stents wouldn't work. Maybe the balloons have to be left in place for longer in some people. Maybe the only thing that will hold it is a stent. A biodegradeable stent? I don't know. I am merely a hopeful patient, so don't take anything I say as advice.
User avatar
1eye
Family Elder
 
Posts: 2852
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby eric593 » Thu Apr 29, 2010 5:36 pm

This might be something really good to ask Dr. Sclafani as it would be interesting to hear a doctor's interpretation of why ballooned veins seem to revert back to their constricted status so quickly and easily and frequently.

Is it because we have this genetic mutation in our genes that predisposes or causes normal replication of vein cells to revert back to their stenotic state? I wonder how often veins replace themselves, if it's quickly like skin cells or not very often like other parts of the body.

A good question though. It does seem peculiar that there is such a high re-stenosis rate in veins. I wonder if it's just as high in arteries generally or in veins of non-MSer's.
User avatar
eric593
Family Elder
 
Posts: 473
Joined: Sun Feb 17, 2008 4:00 pm

Postby nicko » Thu Apr 29, 2010 5:50 pm

I hope that you both have had a re-occurrence of the stenosis. If not, then what???
User avatar
nicko
Family Member
 
Posts: 99
Joined: Fri Jul 08, 2005 3:00 pm

Postby Brynn » Thu Apr 29, 2010 7:45 pm

Hi everyone, I had one stent placed in January with tremendous improvements for 6 weeks then apparently re-stenosed on my left side, which had only been ballooned. I am scheduled in Poland for May 13th, so it will be interesting to see what is found and how I feel afterward, this time. I believe I will get a stent on the left side. I will keep you posted.
Rhonda- now you had a stent placed on both sides, from the beginning, right? It seems like your Stanford group, who mostly got stents, is having good long term success...
41 years old, dx 1998, current EDSS 6.5
User avatar
Brynn
Family Elder
 
Posts: 116
Joined: Sat Nov 28, 2009 4:00 pm
Location: Spokane, Wa

Postby magoo » Fri Apr 30, 2010 5:44 am

Good luck may 13th Brynn!
Yes, stents on both sides and it does seem like our group has done quite well. :D
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
User avatar
magoo
Family Elder
 
Posts: 550
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby tzootsi » Fri Apr 30, 2010 7:53 am

My wife had ballooning done on both jugulars 3 weeks ago. Her doctor is keeping her on Plavix for 3 months because he feels that it may help prevent restenosis.
User avatar
tzootsi
Family Elder
 
Posts: 361
Joined: Sun Nov 22, 2009 4:00 pm

Postby Cece » Fri Apr 30, 2010 7:59 am

eric593 wrote:This might be something really good to ask Dr. Sclafani as it would be interesting to hear a doctor's interpretation of why ballooned veins seem to revert back to their constricted status so quickly and easily and frequently.


His response, awhile back, was that it was elastic recoil.

I am not completely sure what elastic recoil means, but it's something to google. :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Postby daytrader » Fri Apr 30, 2010 10:37 am

I lasted a week. I am going back. No stents yet. No placebo effect here...didn't know what to expect going in so how would I ...........silly!
User avatar
daytrader
Family Member
 
Posts: 34
Joined: Wed Mar 17, 2010 4:00 pm
Location: central florida

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users