It has now been 4 months since I had the Liberation Procedure performed on my blocked jugular veins. I continue to improve. I walk several miles(usually 2-3) one or two times a day. My endurance is improving. My gait and balance are notably better(this is confirmed by physician friends who saw me before my procedure and since). I do hills without problem. My energy is good. This is the most notable of my improvements. I do not experience the exhaustion (both with exercise and as a part of everyday life) that was so much a part of my life prior to the procedure. I ride my bicycle 3 times a week including some very good inclines(most notably Torrey Pines hill). This level of activity was not possible for me over the last few years. I am beginning to include running in my walks. It does not feel good yet but I am running a little bit(at least 100 yards) every day.
Overall, I am infinitely grateful that I was able to get this procedure done on myself. I had faced a progressive decline over the last 5 years and now I am cycling up. I believe strongly that I will continue to improve as my brain is NOT exposed to blood and the inflammation associated with it. The neurologic deficits in my legs are improving albeit slowly. Time will tell how much healing I will get. I am eating more healthy now than I ever have before. I am motivated to keep my veins open and I believe their ongoing patency is a direct consequence of the foods I ingest.
I still take Plavix and a baby aspirin. I plan to continue the Plavix for 6 months post-procedure and the aspirin indefinitely.
I am sleeping better overall. I still have periods of insomnia which I relate to my neurotic tendencies. I am almost off all sleep medicines(formerly needed both Ativan and Remeron). I am off Ativan and weaning myself off Remeron. I am going slowly in this process as I get some "rebound"insomnia if I am too rapid in my tapering of Remeron.
I have not gone back to working as yet not because of any lack of energy or enthusiasm but because I am allowing myself the luxury to contemplate a new worklife and career that will be a tribute and reflection of the miraculous healing that I have been given. My return to health has revealed some great lessons to me about healing in general and about what is important and meaningful to me. I realize that my body was not the only thing that showed "multiple sclerosis". My mind also became rigid to the point of obsessiveness. I am allowing myself time and putting energy into healing this mental/emotional rigidity. I feel myself becoming not only "open" in my jugular veins but "open" in my heart and head.
My only regret is that others with multiple sclerosis who are more advanced than I ever was are being denied the gift of this healing. I read today a New York Times article From M.S. Patients, Outcry for Unproved Treatment - NYTimes.com on the procedure. There is a neurologist quoted as saying the biologic mechanism lacks plausibility. This is so incredibly arrogant, uneducated and actually indicative that this doctor is either financially beholden to the auto-immune theory(via drug company affiliations) or he is just plain ignorant. The auto-immune theory is the one lacking plausibility. Science always "grasped" at the possible hypotheses: post Epstein Barr viral infection, an immune system which suddenly turns on itself for completely unclear reasons.The venous theory that explains the location of the characteristic MS plaques(venocentric and scattered around the 3rd ventricle at the top of the venous plexus), the presence of venous malformations and blood as the etiology of the inflammation is infinitely more plausible than the traditional theory.
The national blockade(in the US and Canada) of this breakthrough healing approach is both shameful and embarrassing. However, the truth cannot and will not be suppressed. MS patients are too smart and too hungry for healing. Neurologists can bury their heads in the sand for as long as they want; the world will go right around their rigidity and self-interested greed. Mobility and freedom are at stake and nothing will block them from being recaptured by a very deserving crowd.
Overall, I am infinitely grateful that I was able to get this procedure done on myself. I had faced a progressive decline over the last 5 years and now I am cycling up. I believe strongly that I will continue to improve as my brain is NOT exposed to blood and the inflammation associated with it. The neurologic deficits in my legs are improving albeit slowly. Time will tell how much healing I will get. I am eating more healthy now than I ever have before. I am motivated to keep my veins open and I believe their ongoing patency is a direct consequence of the foods I ingest.
I still take Plavix and a baby aspirin. I plan to continue the Plavix for 6 months post-procedure and the aspirin indefinitely.
I am sleeping better overall. I still have periods of insomnia which I relate to my neurotic tendencies. I am almost off all sleep medicines(formerly needed both Ativan and Remeron). I am off Ativan and weaning myself off Remeron. I am going slowly in this process as I get some "rebound"insomnia if I am too rapid in my tapering of Remeron.
I have not gone back to working as yet not because of any lack of energy or enthusiasm but because I am allowing myself the luxury to contemplate a new worklife and career that will be a tribute and reflection of the miraculous healing that I have been given. My return to health has revealed some great lessons to me about healing in general and about what is important and meaningful to me. I realize that my body was not the only thing that showed "multiple sclerosis". My mind also became rigid to the point of obsessiveness. I am allowing myself time and putting energy into healing this mental/emotional rigidity. I feel myself becoming not only "open" in my jugular veins but "open" in my heart and head.
My only regret is that others with multiple sclerosis who are more advanced than I ever was are being denied the gift of this healing. I read today a New York Times article From M.S. Patients, Outcry for Unproved Treatment - NYTimes.com on the procedure. There is a neurologist quoted as saying the biologic mechanism lacks plausibility. This is so incredibly arrogant, uneducated and actually indicative that this doctor is either financially beholden to the auto-immune theory(via drug company affiliations) or he is just plain ignorant. The auto-immune theory is the one lacking plausibility. Science always "grasped" at the possible hypotheses: post Epstein Barr viral infection, an immune system which suddenly turns on itself for completely unclear reasons.The venous theory that explains the location of the characteristic MS plaques(venocentric and scattered around the 3rd ventricle at the top of the venous plexus), the presence of venous malformations and blood as the etiology of the inflammation is infinitely more plausible than the traditional theory.
The national blockade(in the US and Canada) of this breakthrough healing approach is both shameful and embarrassing. However, the truth cannot and will not be suppressed. MS patients are too smart and too hungry for healing. Neurologists can bury their heads in the sand for as long as they want; the world will go right around their rigidity and self-interested greed. Mobility and freedom are at stake and nothing will block them from being recaptured by a very deserving crowd.
Comments
Your friend in Pittsburgh suggested I contact you. Please send your email address to me at shh927144@yahoo.com. Thanks.
I love your recent blog on you taking inventory of your body and mind. You have become a human being for me to appreciate and respect you unconditionally. You write with such purpose and just love how your thinking is put online! I was going to say on paper then realized I see this online!!!
I do still hope that ONE DAY you will be an awesome advocate for those who deal with this awful issue.
I am looking forward to further blogs !!
Please take good care, we need you :)
Thank you for your honesty.
Shirley
Dx Jan. 1990
SPMS--in wheelchair over 8 years:(
I'm pleased to read that you agree, persons with the label of MS are too smart and too focused to let this go. I do believe we're making headway in both countries, albeit slower than any of us would like. It is so important to fight to have people who are more progressed treated ASAP!
I'm a 'veteran' at 30 years since diagnosis; just recently forced to label myself 'disabled' as working is no longer an option. The only thing standing between myself and "Liberation" is poverty and the lack of familial supports.
Still, your stories and others give me hope and my goal is to accomplish testing and treatment within the coming year somehow!
Thanks for adding your colorful perspective to the ever-growing library of STUFF out there!
I think there's more to the puzzle for degenerative patients, and hope that the Dr. at Stanford finds something as this recent stuff is very troubling as you could probably imagine. I just walked a city block and my legs simply wouldn't carry me anymore. I would go about 4x as far just a month ago with half the leg tingling and weakness. Something is amiss for sure. Thanks for the blog and keep on keepin' on!