Skip to main content

IT'S HAPPENING

Wow, the information available on CCSVI on the internet is truly amazing! I have to admit: I did not research this topic as well as I could have. I did not read the study from Poland before my procedure. I did not realize all the excitement combined with incredible knowledge that is coming out of Georgetown. I am just reading them now and I can hardly contain myself. There is so much data available on CCSVI from around the world. I acted more on a deep gut feeling that CCSVI was real and was my path to healing. I was a little desperate as I felt myself sliding over the last year and didn't feel right with the auto-immune drugs. CCSVI just made sense to me; really good sense. Now reading the data, I am so excited for huge numbers of people to get healed/opened/freed!

After doing a little research, it seems that nearly all people with definite MS have CCSVI. It also seems that people with MS who have the procedure have less flairs over time and a better quality of life. Some get a lot of function back(improved neurologic symptoms). Some not as much; but most everyone has better energy and less decline.

I don't know where I will fall. I would love to run again even just a little bit. It doesn't really matter because I am touching something I have not in years -- excitement for living. I love having more energy already at 15 days. It feels great to think less about my gait and to be going faster and easier. I dream of more improvement, but I would be ok if this were the full extent of my return. I'm still "herky-jerky" and stiff but maybe I could flow a little bit again. I have hope and I have gratitude and those are friends I have only "tried" to have for years. Now they are just there.

Now onto the project of helping people with MS get liberated. The "proceduralists" are ready -- they are always ready to do what they do so well. They love to open pipes -- arteries, veins,ducts, whatever. They are just waiting for the whistle, their call to battle. SO now,we just have to get people tested. Conservative instutions may balk but they will be left behind. There are imaging centers all over this country(and the world) that have been waiting for this time. They love to image and that is what we need -- imaging. A picture is worth a thousand words and a new picture of an old disease is waiting to be unveiled. The data is flowing in and a conservative approach is no longer an option.

MRV's or ultrasounds -- that is the question. I think they both show the culprit in MS. MRV's are more accessible at this time because, in my understanding, these ultrasounds require special training and skill from the technicians. MRV's of the brain and neck have a standard protocol which requires no additional training. Only a few centers that I am aware offer this newer ultrasound so far. I am sure it will spread quickly. MRV is more expensive but people just have to get these veins looked at soon. So, do what you have to do depending on your location, finances, insurance but just do it!

Comments

Tami said…
I have been following this research from the beginning and I am very interested in learning of your continued progress. Please keep us updated as the end results of this procedure are all that seem to be lacking. God speed and I look forward to more encouraging improvements.
Bev B. said…
Thank you for stating your confidence in the tried and true test, centuries old...."gut feeling". We know without knowing, maybe a God given tool. CCSVI is real and the excitment has been almost overwhelming. But I don't think we've seen anything yet.... Keep up posted and keep getting well....Bev
Ginger said…
AWESOME!! I am so happy for you! I too am going to Poland for surgery so everything you are saying sounds like it comes from my mind. I wish you continued improvement!
Anonymous said…
Hi, here in Melbourne, Australia (at Melbourne Radiology) you can get ultrasound for CCSVI and it's very cheap ($300). They don't do the whole deal, but the neck ultrasound is enough to show problems in many people. If you have problems then you can go straight to an interventional radiologist... here in Melbourne they will book you straight into surgery and do the venography and ballooning in the same procedure.

MRV is much more complex, requires the contrast dye (bad for breastfeeding) and is much more expensive. You can get it at Melbourne Radiology as well, but our IR said that it was unnecessary as he needs to measure the pressure differentials directly anyway, so he can see where to balloon.

so contrary to your comment, I think a partial ultrasound is a good starting point, is much cheaper and if it can lead to a date with an IR then it's a lot easier than jumping through all these hoops.

Note that we did have the support of our GP while we did this...
Anonymous said…
dont waste your time on the expensive testing. the proof is in the pudding. go right to the venogram.
Anonymous said…
Ginger
Have you received the treatment yet? If so how are you? I am interested in having the contacts, #'s, doctors, organizations who helped you get there. I too, want to get this done. I have been waiting to see if it gets local, but it appears it might be halted for the name of research. I dont want to miss the boat. I can be reached directly at tmcgreg1@shaw.ca. I hope all is well and I look forward to hearing from you very soon.
t

Popular posts from this blog

Connecting to the World

This is a picture from the Eucalyptus Grove At UCSD -- my dogs' favorite walk. Upon our return from our adventure, I read this from Buddhist psychologist, Rick Hanson. I really resonate with this aspect of connection. Connecting is in 3 directions -- inside with oneself, with others and with the world. When we strengthen one direction, we simultaneously strengthen our general connection. This is guidance to connect more deeply with the world. What makes you feel connected? I'd like to know.   Are we really so separate? The Practice   Love the world. Why?   Your brain evolved in three stages (to simplify a complex process): Reptile - Brainstem, focused on AVOIDING harm Mammal - Limbic system, focused on APPROACHING rewards Primate - Cortex, focused on ATTACHING to "us" With a fun use (to me, at least) of animal themes, the first JOT in this series -  pet the lizard  - was about how to soothe the most ancient structures of the...

A Guest Post from Jenna Walters

Tai Chi for Health Tai Chi is a secret weapon in the battle against the physical and mental demands of life. It has been able to help improve health in individuals with illnesses ranging from peritoneal mesothelioma to migraines . Its quiet and slow movements bring a calm balance to the mind. It also brings strength and balance to the body. Tai Chi demands very little from its participants. The focus is on body awareness and deep breathing. Its stretching is soft and fluid and its movements are low-impact. Young, old, athletic, or the rehabilitating can all gain better health with Tai Chi. Studies have shown that Tai Chi improves physical health . Although the movements are slow and require no added weight, those that practice Tai Chi become stronger in both upper and lower body. There is also proof that flexibility and balance are improved. The fact that the gentleness of this exercise has such positive results makes it perfect for the unfit, the elderly and for those recovering f...

Becoming Aware

In doing the work that I am so happy to be doing at Pando Health Groups, I have become acutely aware of the painful, demeaning,  limiting and downright cruel thoughts that people carry around and repeatedly tell themselves. Amazingly successful, intelligent and gifted people continually return to a dark and very negative image of themselves that is not based on current reality or supported by their current performance, relationships or modern lives. However, the tape is still playing. Worse yet, the tape hurts them deep down and affects all that they care about, desire and create. It takes away energy. It zaps power and limits potential. It creates misery and suffering. It, too often, makes their lives stay "stuck in the groove on the record". This tape can be turned off (or destroyed) but for too many it keeps raising its head when circumstances replicate past wounds or when there is an ongoing, overpowering, loud voice that just keeps breaking into one's hea...