Should patients have backup plan?

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

Should patients have backup plan?

Postby eric593 » Tue Mar 30, 2010 3:48 pm

Reading some of the questions to Dr. Sclafani from those who have gone elsewhere for treatment, it seems to me that a local IR would be necessary to follow up care.

Are people trying to have a local IR in place so that they can be followed after treatment non-locally? With a 50% restenosis rate that Dr. Zamboni outlined, and the risks of stent migration, clotting, etc., I would think that a local doctor would be absolutely necessary in order to consult with and to follow up to make sure everything is going smoothly.

Are those having treatment outside of their local area not even attempting to have local followup expertise available, or are they unable to find it in spite of repeated efforts? It just seems prudent and vital to have someone experienced in IR to follow up with unless people are already prepared (financially, time-wise and based on the availability of the original IR) to go to the original treating physician.

Is this something people are taking into consideration when going outside their local area? It seems that the doctors doing the original interventions are also incredibly busy, so an influx of 50% or more of their patients due to restenosis or problems/concerns that arise doesn't seem feasible either.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Advertisement

have same thoughts

Postby Kuly » Tue Mar 30, 2010 4:04 pm

8)

kuly
User avatar
Kuly
Getting to Know You...
 
Posts: 12
Joined: Sat Jan 09, 2010 3:00 pm

Postby mangio » Tue Mar 30, 2010 4:14 pm

Some of the stories now arising from distant interventions are concerning.
It has been repeated many times by many to try to go local but
it's of course a big challenge. Let's hope more locations will soon be
offering treatment options. It might also be worth reminding folks
of the recent study from Ohio that clearly showed exercise between controls and non-controls reduced damage to the basal ganglia compartments by 50pc. Now that's got to be worth the effort.
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 3:00 pm

Postby ozarkcanoer » Tue Mar 30, 2010 4:35 pm

eric593,

I think having a local doctor is very very important. I have been on this TIMS CCSVI board since last October and have been working hard to get local attention to CCSVI in my city. I have a neuroradiologist with a big reputation who I have consulted with. He wants me to go to BNAC for the testing. And I am planning to do that. But I want to have the procedure done at home. My PCP and my neurologist and my neuroradiologist all three know I am pursuing this. I do not know what the BNAC testing will tell me. But whatever, I have a doctor, a professor of medicine, who I can consult with at home after I get my results. I hope with all my heart and soul that CCSVI is the answer to MS and I am trying to do everything in my not so powerful power to find out.

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri

Postby annad » Tue Mar 30, 2010 4:53 pm

The ease in which you are able to acquire a doctor back home, to do a follow up, depends on which country you are from, I would think.
I'm from Canada. I was told it would be difficult.
Yes, it's something I considered and it's concerns me but I figure one battle at a time.
User avatar
annad
Family Elder
 
Posts: 207
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ontario, Canada

Postby ikulo » Tue Mar 30, 2010 5:22 pm

mangio wrote:Some of the stories now arising from distant interventions are concerning.
It has been repeated many times by many to try to go local but
it's of course a big challenge. Let's hope more locations will soon be
offering treatment options. It might also be worth reminding folks
of the recent study from Ohio that clearly showed exercise between controls and non-controls reduced damage to the basal ganglia compartments by 50pc. Now that's got to be worth the effort.


do you have a link to this study? thanks!
User avatar
ikulo
Family Elder
 
Posts: 444
Joined: Tue Aug 04, 2009 2:00 pm
Location: colorado

Postby mangio » Tue Mar 30, 2010 7:42 pm

Ikulo,
The paper was from the psychology dept. and fMRI was used for the study. Ohio State if I recall correctly, but with my mind these days I could
have that wrong. I will have to search for it tomorrow. It really interested
me because the b.g. is where I have alot of damage.
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 3:00 pm

Postby eric593 » Tue Mar 30, 2010 8:48 pm

ikulo wrote:do you have a link to this study? thanks!


Here is the link that thumbsup posted on the General Discussion forum here:

http://www.medicalnewstoday.com/articles/179659.php

But I don't think the study shows that exercise REDUCES the damage, only that there is a relationship between those that exercised having less damage. To me, it could more accurately mean that healthier people with less damage are also less affected in their ability to exercise, but the more brain damage you get, the more it affects you, including your ability to exercise. I don't think the study shows that exercise RESULTS in less damage. At least that's my take on it.

Getting back to the original topic, I think for me and with such a high risk of re-stenosis and potentially serious risks and complications that it appears only a very experienced IR can deal with, I don't think I'd GET treatment for CCSVI abroad until I had someone local who I know could take care of me when I got home afterwards (I'm in Canada too). Aftercare seems to me to be too important not to be taken into consideration when even deciding to go for treatment somewhere else.

I see quite a few people asking Dr. Sclafani serious questions about their care, or what could be happening with them after-treatment that really should be directed at a treating physician. I think they need someone to examine them and take scans to determine what's going on with them now. It's scary for me to look at these people needing medical assessment who are relying on an internet diagnosis and assessment when they are in serious need of hands-on care. I don't think that's a situation I want to be in, asking a (very fine) doctor over the internet to tell me what could possibly be going on with my angioplasty or stents because I'm not improving or I seem to be having side effects. I just can't see me putting myself in that position, it sounds too scary and an even worse situation, one that I'm not prepared to assume right now, even though I'm quite affected by MS. But that sounds potentially even worse. I'm just wondering how others decided to go for treatment, if they even thought about it or tried to find local medical care to deal with them afterwards.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Postby shye » Tue Mar 30, 2010 9:20 pm

You express the serious challanges very well Eric 593--I tend to the more conservative approach you have, but i can also see how some take action with a sort of spontaneous hope. CCSVI just seems so very right. and there are good stories every day. I think we need to push for better tracking, since clearly we do not see all the good reports, and probably even fewer of the bad. We need to know these.
And Dr Sclafani provides the invaluable service of answering questions not just of those who have had the procedure done, but the many enquiries for those trying to make informed decisions.

I think we need to use this forum to set up a tracking of the drs who are willing to do follow-up, maybe state by state, province by province etc--I'm not good at organizing that kind of thing, but would be good if someone designed a track system for that.
User avatar
shye
Family Elder
 
Posts: 758
Joined: Sun Nov 29, 2009 3:00 pm
Location: NYC

Postby annad » Wed Mar 31, 2010 4:06 am

I think we need to use this forum to set up a tracking of the drs who are willing to do follow-up, maybe state by state, province by province etc--I'm not good at organizing that kind of thing, but would be good if someone designed a track system for that.

------

I was thinking that too. Same way we know which doctors are willing to treat we need to start finding out who is willing to do a follow up. If I find one, will let you know.
a
User avatar
annad
Family Elder
 
Posts: 207
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ontario, Canada

Postby eric593 » Wed Mar 31, 2010 4:08 am

Good idea. If someone can start a sticky at the top for this, that would be great.
User avatar
eric593
Family Elder
 
Posts: 475
Joined: Sun Feb 17, 2008 3:00 pm

Postby SandyK » Wed Mar 31, 2010 7:47 am

My problem with follow-up care is the lack of insurance. I can get to Poland and get the procedure done but when I come back home I can't get help because I have no health insurance. Am I supposed to miss an opportunity to finally feel better? I struggle with this everyday.
Diagnosed 1994, Self EDSS is 6.5
User avatar
SandyK
Family Elder
 
Posts: 221
Joined: Wed Oct 14, 2009 2:00 pm
Location: WA

Postby mangio » Wed Mar 31, 2010 8:04 am

Eric,
Thanks for putting that up. I couldn't disagree more. More grey matter,
less lesion load, lesion load size smaller, more functionally cognitive,
almost the same gray matter volume (fittest msers) to normal controls -
no drug can do that - I'll take it anyday anyway.
User avatar
mangio
Family Elder
 
Posts: 288
Joined: Thu Dec 31, 2009 3:00 pm


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