My Advocacy Plan

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

My Advocacy Plan

Postby rssugg » Wed Jun 30, 2010 5:46 am

-I have sent over 400 letters to Vein Specialists and IR doctors across the state of NC a letter appealing for them to do the liberation (with additional information including studies, references)

-I am currently developing a brochure to leave on the tables at my neuros offices for patients to pick up and read about CCSVI (disguised as professional brochures that litter their office anyway)

-I have sent a letter to over 50 Neuros in the state to encourage them to partner with local vein and IR specialists to offer the liberation treatment(since they do not have the training and experience to treat MS anymore)

-I also mail out research papers and information regarding CCSVI/liberation to a select set of neuros across the state

-I am currently making a CD of pre/post videos to send the neuros as well
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Advertisement

Postby bretzke » Wed Jun 30, 2010 5:59 am

How is the plan working, so far?

Brian
User avatar
bretzke
Family Member
 
Posts: 90
Joined: Wed Mar 24, 2010 4:00 pm
Location: Michigan

Postby costumenastional » Wed Jun 30, 2010 6:17 am

Well, i got to say well done!!!

Only yesterday i visited a lady neuro only to get some paperwork needed for my insurance carrier. While i was waiting in the lobby i felt the need to start a CCSVI conversation with some patients. It was kind of fun, cause half of them were looking at me like they were looking at a Salvador Dali's painting while the other half were like "WTF r u talking about man? Just leave us in peace". I was so bored to tell them that i have already done the treatment... i had to play dam at the time. No energy and all...

But it was discouraging i must say. I mean this "yes doctor" attitude is what made neuros so comfortable all these years and this is why the status kuo is so freaking solid.

So, when i went in, i spoke with the doctor about all these. I wouldn't but she asked me which doctor is following me. When i told her that there is nothing a neuro can do for me she gave me the alien look and started asking questions. She had "HEARD of Campath and CCSVI but..." When i told her some facts she was open for discussion and she wanted me to meet up with the head of the hospital's neurology clinic for some reason.

Finally, she prescribed a couple of MRIs for me, some other tests i wanted to have (Lyme etc) and all in all she was very supporting. She even admitted that they can do nothing for us at this point. Keep in mind that she works on salary and she doesn't practice in private ;)
If all these were to take place in a private office i would get a good ass spanking without any doubt.

What i got left with after this visit is the fact that a great percentage of MS patients are bored to "google" CCSVI leaving the rest of us to fight with the monsters.

It is not a matter of spreading the word. The word is out there for everyone to see. The problem comes within the patients cohort. We must all change our attitude towards neurologists.

IF CCSVI IS NOT THE CURE THEN THEY SHOULD GET THE FUCK OFF OF THEIR CHAIRS AND FIND ONE.
Last edited by costumenastional on Wed Jun 30, 2010 6:32 am, edited 1 time in total.
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby rssugg » Wed Jun 30, 2010 6:29 am

I have recieved a few emails from the IR community wanting to know where to get more information.

As always, the neuro community never responds - but i expect that (i secretly hope to piss them off and into submission)

I personally don't care if I hear anything back. Knowing that they get the information is just fine by me.
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Postby rssugg » Wed Jun 30, 2010 6:33 am

IF CCSVI IS NOT THE CURE THEN THEY SHOULD GET THE FUCK OFF OF THEIR CHAIRS AND FIND ONE.


Agreed!

I fight so hard because I live in a state that has the top medical teaching hospitals in the world, but they are letting this opportunity pass them by while the NMSS gives money to folks already in their back pocket.
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Postby costumenastional » Wed Jun 30, 2010 6:39 am

Don't get me wrong friend. You are doing the right thing if you ask me. No questions there.
Just sayin... we patients should be more demanding each one for his own self for starters. This ccsvi thing is a paradigm shift and this is what they are most afraid of.
Can you imagine patients win? It will be a first, only for other diseases to follow...

I hope you get in their nerves. The sooner the better ;)
User avatar
costumenastional
Family Elder
 
Posts: 740
Joined: Sat Jan 31, 2009 4:00 pm
Location: Greece

Postby bretzke » Wed Jun 30, 2010 6:55 am

rssugg wrote:I have recieved a few emails from the IR community wanting to know where to get more information.


I'm trying a different approach here in Michigan...

Am putting together a "business plan" model which shows how testing and treating CCSVI could be profitable for independent clinics. Will provide docs with info on the medical aspects of CCSVI, but am focusing my efforts on the business side.

To get more folks liberated, 80% of the focus needs to be on marketing and 20% on science.

Brian
User avatar
bretzke
Family Member
 
Posts: 90
Joined: Wed Mar 24, 2010 4:00 pm
Location: Michigan

Postby rssugg » Wed Jun 30, 2010 7:07 am

^That is an awesome idea. I may need to use that in next mailing if you can share

This ccsvi thing is a paradigm shift and this is what they are most afraid of.


You got that right - I actually started a post about this last night and never got to finishing it. In my mind, the paradigm shift needs to come from the patients (as you said) and needs to get folks moving away from the neuro establishment to the folks that can help out.

I also plan to give out a brochure and information at the NMSS bike rides and runs here locally. I do not want to trash NMSS (althogh i should), but i want to bring the truth out.
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Re: My Advocacy Plan

Postby sbr487 » Wed Jun 30, 2010 7:31 am

rssugg wrote:-I have sent over 400 letters to Vein Specialists and IR doctors across the state of NC a letter appealing for them to do the liberation (with additional information including studies, references)

-I am currently developing a brochure to leave on the tables at my neuros offices for patients to pick up and read about CCSVI (disguised as professional brochures that litter their office anyway)

-I have sent a letter to over 50 Neuros in the state to encourage them to partner with local vein and IR specialists to offer the liberation treatment(since they do not have the training and experience to treat MS anymore)

-I also mail out research papers and information regarding CCSVI/liberation to a select set of neuros across the state

-I am currently making a CD of pre/post videos to send the neuros as well


I recently came across a well educated person and I was quite surprised to know that she did not know anything about ccsvi (you can gauge by the fact the she asked me "what pill should i take to make this vein problem go away). Anyway, I was thinking how to reach out to patients who normally dont browse or if they do, they are mostly interating with close knit community?

Can we leave brochures in supermarkets?
Can we give a selfless advt in paper?
Can we visit meeting where MS patients gather and distribute?

My own feeling is that it is the patient community which is going to swing things in favor of CCSVI and nothing else ...
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Postby rssugg » Wed Jun 30, 2010 7:39 am

^Good idea - we need to take out a full page ad in large newspapers across the world (i would prefer the US, but this is a global issue).

Imagine opening up the WSJ, NY Times, Chicago Tribune....and:

LIBERATE
THOSE
WITH
MS
NOW!
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Postby TMrox » Wed Jun 30, 2010 8:34 am

Hi rssugg,

That is a brilliant idea! I had read about another person who took the yellow pages and contacted 20 vascular doctors in her area. 6 replied and 2 gave her a call.

I had posted the link to the blog of this CCSVI activist in myelis.org/forum. I'm now permanently banned from that forum for spreading the news about CCSVI research. so cannot check the link I had put there. I believe that this activist is also blogging in this site. Unfortunately cannot remember her name.

But anyway, I totally support your efforts. There are a few brave vascular doctors that are challenging the establishment and doing the liberation procedure.

I'm a great admirer of the determination of Dr Sclafani. If we can find a few more docs like him more research will be done.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby pklittle » Wed Jun 30, 2010 9:14 am

Sounds great, but it is tough to argue the point to doctors that are not proponents when the procedure didn't work for me and many others. Just sayin'.
User avatar
pklittle
Family Elder
 
Posts: 341
Joined: Sun Mar 07, 2010 4:00 pm

Postby magoo » Wed Jun 30, 2010 9:52 am

rssugg,
I think we are in the same city?
I think what you are doing is fantastic! Did you try Dr. Mowatt-Larrssen at Duke? He was interested in CCSVI and met Zamboni a while ago. I spoke with him once several months ago and told him about my improvements.
Are you seeing a new neuro here?
I used to be a speaking advocate for the NMSS here and when I had my procedure I wrote to them several times offering to speak about CCSVI, but they weren't interested. I would love to get CCSVI in their face.
Keep up the good work!
Last edited by magoo on Sun Jul 18, 2010 2:17 pm, edited 1 time in total.
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: 557
Joined: Thu Sep 10, 2009 3:00 pm
Location: Charlotte, NC

Postby TMrox » Wed Jun 30, 2010 9:57 am

Hi Pklitte,

Given the conflicting research evidence of some groups (English, German, Dutch) I agree that at this point is hard to find neuros or vascular docs that are willing to prescribe the liberation procedure outside clinical trials. That is why we need more research, more doctors that are willing to fight to get the IRB approval, funding and explore more.

I had seen your thread a few days ago where you say that you have not had any improvements. It is very important to listen to cases like you. You are a very important piece in this puzzle and the more information you can provide the better.

Have you got worse since the liberation procedure? Did you have another relapse? I had read in Zamboni's article that the liberation procedure cuts the chances of relapse, if I'm not mistaken by 50%.

Unfortunately the loss of myelin can produce some permanent damage to the axons. I do not think that the liberation procedure can repair the permanent damage or scaring to axons or nerves, I'm not a medical doctor, so take my view as the view of another patient, not an expert.

However, I believe that the liberation procedure can alleviate other problems. I understand that not all changes will be immediate. It takes a while for the body to repair. I cannot imagine how my poor spinal cord manage to live for more than 30 years with the azygous 100% blocked and my IL jugular more than 90% I suspect that all the damage that this caused will take a while to heal.

I'm 90% recovered, in my opinion all thanks to the liberation treatment. It is very puzzling to asses why it worked for me and why it has not worked in others. That is why we need more research and more info.

Please keep up posted with your progress or lack of it.
User avatar
TMrox
Family Elder
 
Posts: 263
Joined: Tue Jun 01, 2010 3:00 pm

Postby rssugg » Wed Jun 30, 2010 10:19 am

magoo - pm sent

here is my letter to teh NMSS and local chapters (share freely):

To Whom It May Concern,

I feel that I am a pretty lucky guy – I have a beautiful wife, healthy newborn daughter, a great career, and I have MS. Why am I lucky to have MS you might ask? The reason is that there is now treatment – a treatment that does not involve drugs and has a higher percentage rate of actually treating the disease. Fortunately, the NMSS and its local chapters encourage folks, with and without MS, to become involved by stating “Thousands of individuals nationwide are joining a grassroots movement of MS activism”. I cannot agree more – so I am writing to let you know I am taking up the call and joining the TENS of THOUSANDS of folks that are becoming activists for MS treatment through the liberation procedure.

I encourage you to take some time to reflect on the research and make your own connections. I am not going to speak out against drug companies, profits, or conspiracy theories in this letter. I will point out that venous abnormalities have been studied thoroughly in MS for decades and the research papers are easy to obtain and the technology now exists to identify and correct the venous cause of MS.

Last week I called your office to request a referral to doctors that might be performing the liberation treatment in NC, but I was immediately transferred to the NMSS national hotline. I was a little hot at first, but the lady on the line assured me that my neurologist should be able to assist with this information. I must say, it was good that the NMSS is trying to work to assist folks in obtaining this procedure although they don’t support the facts already associated with this treatment.

Unfortunately, we need to shift our paradigm toward researching and treating this issue. We also need to shift our paradigm away from the focus upon the neurology community, and focus on the interventional radiologist and other practitioners who can assist in identifying the measures that need to be taken to alleviate the burden of MS. The great news is that the instruments, protocols, and methods have already been developed to perform a liberation procedure and they are being used every day for other, similar venous issues.

The North Carolina MS community needs your support to begin contacting professionals across our great state to encourage them to take up the liberation procedure and begin healing our sick. We have the greatest teaching hospitals in the world located right here in NC, and they should know that you support them and that organizations such as yours should provide them with the encouragement and tools they need.

I have to say that I have a hard time supporting NMSS until CCSVI is brought to the forefront. The treatment has been proven by researchers and doctors and has been brought to the light of day by activists and people with MS. I will continue to bring CCSVI to the afflicted, to the caregivers, and to the doctors until this simple, safe, and affordable procedure is brought to the people who need it most. As you know, some folks cannot wait for trails to prove that an already accepted procedure is safe and effective.

MS stops people from moving, but it appears the only people not moving are the NMSS. Will you be willing to move with us?
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Next

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