Since I don't want to come off as a Debbie Downer I have happier news this week. :) Introducing CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) drum-roll please......it's a fairly new concept that was started by a doctor in Italy who's wife suffers from MS and whom he wanted to help. He ran tests and found that she had blocked veins in her neck and chest that can cause blood to reflux back causing iron deposits (which can cause headaches, dizziness, heat sensitivity) and many other problems. After the procedure she felt MUCH better from the MS and had even regained a lot of what her body had lost because of the disease. Thus The Liberation Treatment was born, a term used for CCSVI that would later come back to bite us where the sun don't shine. This procedure has to be done by Vascular Surgeons or Interventional Radiologists, it's an angioplasty but it goes all the way up to your chest and/or neck. A lot of people with CCSVI have blockage in their Jugular Vein which is the biggest vein in the neck. I know there can be complications but when you're in a lose/lose situation you have to take the chance. 90% of MSers have CCSVI and all of the Msers I know that have had this done have gotten miraculous results. :) Turns out that MS is not the blame-all culprit for all our ailments afterall. For example, my facebook friend Denise, a fellow MSer and the person that penned the term MonSter, had a lot of the same symptoms I do and now she can walk long distances, wear high heel shoes (these are just dreams for me since I can't do either anymore), doesn't have insomnia, fatigue, heat sensitivity and now lives her life virtually MS free thanks to CCSVI. It's not a cure but it's the best that we got right now. :) They've found though, that the blockages can come back after a while and/or may have missed some blocked veins, so they might have to do the procedure repeated times. Oh well, better than nothing by a LONG shot and definitely worth the risk. :) :) :) :)
There was much debate last year about this, neurologists and pharma companies were trying SO hard not to lose their cash cow (MS) that they were putting all kinds of obstacles in our way since they're heartless a-holes that only care about fattening their own pockets!! So they came up with whatever they could to stall this, starting with attacking the name "Liberation Treatment" by saying that we're just looking for a miracle, that it's all due to the placebo effect, that it's not proven, it can be dangerous, there have been no studies, blah blah blah. A lot of Vascular Surgeons were shut down last year because of this. :( So the poor MSers had to go to Switzerland, Holland, Italy to have this done costing them thousands of dollars. If people wanted to get the treatment in the US or Canada they had to pass on that we should NOT say that we have MS but that we are just suffering from headaches and dizziness and needed to see if we had blocked veins. And the insurance companies were NOT covering the procedure 'cause they didn't think it was "medically necessary". Ok so they DON'T think that having a blocked Jugular vein and other veins is important and could cause one's quality of life to suffer because of the side effects?! And furthermore, they WOULD consider it medically necessary for anyone that DOESN'T have MS, but having MS immediately made it not "medically necessary"???!! WTH?? So imagine my happy shock when I saw an article on Facebook about Baylor College of Medicine here in Houston doing the CCSVI procedure! :) And not even having to hide that they're doing it specifically for MS patients since the proof is in the pudding and those pharma/neuro fools can suck it!! LOL I think the reason why Baylor's not being picked on is because they are just using a balloon to open the veins, then removing the balloon and are not inserting stints to keep the veins open. There was some controversy with using stints not meant for the Jugular and other veins. That's why I wanted them to sort these things out before I pursued this. So being the mature, rational thinker that I am I gave myself some time to think about it......yeah right! Thought about it for 2 seconds and of course contacted the Vascular Surgeon at Baylor and almost 2 weeks later (the wait was brutal!), I have an appointment for an ultrasound and to see the Dr the same day, on June 2nd. :) He IS participating with my insurance which I hope means that they WILL pay for all or most of this procedure. Anything that brings hope of normalcy and does not break the bank is welcomed in the Blackwell household. :) I hate that I have to wait until June 2nd being that the facial spasms although way better, are still there, plus I now am having issues with weakness and clumsiness with my left leg, making it hard to walk or stand for long. :( That MS always keeping me on my toes! Whatever! I now have hope I didn't see coming my way for a very long time. :) So although this might sound weird to people without MS, I REALLLLLYYYYY hope that I have several blocked veins so they can do the CCSVI procedure on me!! :) :) :)
This is the link to Baylor's CCSVI page if you wanna check out specifics about it. Those without MS should keep in mind that u too could have CCSVI, so I encourage you to check it out as well. It's important to find a surgeon close to you because as I said, you will probably have to get this done more than once and traveling can get expensive =
http://www.debakeydepartmentofsurgery.org/home/content.cfm?proc_name=Chronic+Cerebro-Spinal+Venous+Insufficiency+%28CCSVI%29&content_id=272
Stay tuned to learn about the holistic treatments that have helped me so much in the last few years and hopefully read about how CCSVI has changed my life for the better. :)
