CCSVI and CCVBP
From my Facebook page; CCSVI in New Zealand; https://www.facebook.com/pages/CCSVI-in ... 984?ref=ts
This is a must see for those who do not experience MS symptoms.
Here are a few symptoms you may recognise. very interesting observations. This needs to be used as a tool in vascular studies!
If you have trouble with the URL please go to my web site and find the comment on Hypoxia and MS.
This is a must see for those who do not experience MS symptoms.
Here are a few symptoms you may recognise. very interesting observations. This needs to be used as a tool in vascular studies!
If you have trouble with the URL please go to my web site and find the comment on Hypoxia and MS.
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uprightdoc
- Family Elder
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blossom
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- Joined: Thu Dec 03, 2009 3:00 pm
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ccsvi
i'm glad to see dr. shelling is willing to work with chiro.'s-"shows he really wants to help us' and that the other good dr.'s have at least read your book and hopefully come around to welcoming chiro.'s into the realm of things soon.
i as a patient want no stone left unturned and until mainstream comes up with a lot better answers than they have--we should not have to settle.
but, unfortunately, for me, and shame on the med. dr. i'm dealing with and the other dr.'s that shun chiropractic and they make a person as sick as i am have to deal with this beurocratic bull s--- just to get a test i need that because of their i feel ego comes into play and it's has to do with a field of med. they have no clue about. yet they can say i don't need the test or it's not gonna help. like any of their methods have helped with my symptoms.
so, while i'm spinning wheels and getting worse i have to try to figure out how to get done what i want and need. like i have energy to deal with this. but, somehow i will, but it won't be easy---was there ever a time things were easy--but, this should not be such a struggle---
i hope the ones that have been able to be treated and are improving are makeing sure they are letting their dr.'s know that chiropractic is helping them. would you please maybe just rub it in their face a little for me. if i am fortunate enough to be in that position someday because of any unmainstream treatment--i would just have to. but, only briefly, because i would want to get the word out there so others might benefit too.
i as a patient want no stone left unturned and until mainstream comes up with a lot better answers than they have--we should not have to settle.
but, unfortunately, for me, and shame on the med. dr. i'm dealing with and the other dr.'s that shun chiropractic and they make a person as sick as i am have to deal with this beurocratic bull s--- just to get a test i need that because of their i feel ego comes into play and it's has to do with a field of med. they have no clue about. yet they can say i don't need the test or it's not gonna help. like any of their methods have helped with my symptoms.
so, while i'm spinning wheels and getting worse i have to try to figure out how to get done what i want and need. like i have energy to deal with this. but, somehow i will, but it won't be easy---was there ever a time things were easy--but, this should not be such a struggle---
i hope the ones that have been able to be treated and are improving are makeing sure they are letting their dr.'s know that chiropractic is helping them. would you please maybe just rub it in their face a little for me. if i am fortunate enough to be in that position someday because of any unmainstream treatment--i would just have to. but, only briefly, because i would want to get the word out there so others might benefit too.
Thanks for writing your feelings and situation Blossom. I can say my experience is running a parallel at present.
I have rejoined the local region MS society (75 members) which I was a part of till late last year when there was a sprinter group that were only interested in themselves and had no understanding that there were others in our region who needed more than what they offered. We almost lost or MS nurse in this bazaar happening.
Any way I teamed up with another member, the then chairman and we found ways to get the committee back on track with new able bodied members and an able bodied Chairperson with guts.
So now the dust has settled I am back.
The key role that I offered of myself was to be a resource for finding answers to problems for our local PwMSers and to keep up as best I can with the research and study outcomes that are hitting the news. I have for some time had my own Facebook site https://www.facebook.com/pages/CCSVI-in ... 984?ref=ts where I try to put relevant data and info online for people.
Now in the process of rejoining the local group I was introduced to an Osteopath who is highly recommended. I want to find out from him about the medical world from an Osteopaths point of view and to see what the knowledge of vascular flows and spine alignment means from their angle. It seems that they are 'more accepted' by the general medical world than our learned friends, the Chiropractors.
I am of view that linking Osteopaths to the vascular and upper spine world of de-generative diseases will be a positive and I will keep you all posted.
Regards Nigel
I have rejoined the local region MS society (75 members) which I was a part of till late last year when there was a sprinter group that were only interested in themselves and had no understanding that there were others in our region who needed more than what they offered. We almost lost or MS nurse in this bazaar happening.
Any way I teamed up with another member, the then chairman and we found ways to get the committee back on track with new able bodied members and an able bodied Chairperson with guts.
So now the dust has settled I am back.
The key role that I offered of myself was to be a resource for finding answers to problems for our local PwMSers and to keep up as best I can with the research and study outcomes that are hitting the news. I have for some time had my own Facebook site https://www.facebook.com/pages/CCSVI-in ... 984?ref=ts where I try to put relevant data and info online for people.
Now in the process of rejoining the local group I was introduced to an Osteopath who is highly recommended. I want to find out from him about the medical world from an Osteopaths point of view and to see what the knowledge of vascular flows and spine alignment means from their angle. It seems that they are 'more accepted' by the general medical world than our learned friends, the Chiropractors.
I am of view that linking Osteopaths to the vascular and upper spine world of de-generative diseases will be a positive and I will keep you all posted.
Regards Nigel
The severity of chronic cerebrospinal venous insufficiency in patients with multiple sclerosis is related to altered cerebrospinal fluid dynamics
Zamboni P, Menegatti E, Weinstock-Guttman B, Schirda C, Cox JL, Malagoni AM, Hojnacki D, Kennedy C, Carl E, Dwyer MG, Bergsland N, Galeotti R, Hussein S, Bartolomei I, Salvi F, Ramanathan M, Zivadinov R. Functional Neurology 2009; Volume 24http://www.ncbi.nlm.nih.gov/pubmed/20018140
From;
Zamboni P, Menegatti E, Weinstock-Guttman B, Schirda C, Cox JL, Malagoni AM, Hojnacki D, Kennedy C, Carl E, Dwyer MG, Bergsland N, Galeotti R, Hussein S, Bartolomei I, Salvi F, Ramanathan M, Zivadinov R. Functional Neurology 2009; Volume 24http://www.ncbi.nlm.nih.gov/pubmed/20018140
From;
Chronic cerebrospinal venous insufficiency is related to inverted and decreased
cerebrospinal fluid flow and greater brain atrophy in patients with multiple sclerosis.
Zamboni P, Menegatti E, Weinstock-Guttman B, Cox JL, Claudiu S, Malagoni AM, Hojnacki D, Kennedy C, Carl E, Dwyer MG, Bergsland N, Galeotti R, Hussein S, Bartolomei I, Salvi F, Zivadinov R. Multiple Sclerosis 2009 Volume 15 (Supplement 2)
From;
cerebrospinal fluid flow and greater brain atrophy in patients with multiple sclerosis.
Zamboni P, Menegatti E, Weinstock-Guttman B, Cox JL, Claudiu S, Malagoni AM, Hojnacki D, Kennedy C, Carl E, Dwyer MG, Bergsland N, Galeotti R, Hussein S, Bartolomei I, Salvi F, Zivadinov R. Multiple Sclerosis 2009 Volume 15 (Supplement 2)
From;
Objective quantification of cerebrospinal fluid (CSF) flow rate in cerebral aqueduct in patients with multiple sclerosis
Schirda C, Zamboni P, Magnano C, Lindzen E, Wack D, Weinstock-Guttman B, Ramasamy D, Carl E, Hojnacki D, Kennedy C, Dwyer MG, Bergsland N, Cox JL, Salvi F, Zivadinov R..Neurology 2010; Volume 74 (Supplement 2)
From;
Schirda C, Zamboni P, Magnano C, Lindzen E, Wack D, Weinstock-Guttman B, Ramasamy D, Carl E, Hojnacki D, Kennedy C, Dwyer MG, Bergsland N, Cox JL, Salvi F, Zivadinov R..Neurology 2010; Volume 74 (Supplement 2)
From;
An objective quantification technique of the cerebrospinal fluid (CSF) flow in the cerebral aqueduct, in patients with multiple sclerosis.
Schirda C, Zamboni P, Magnano C, Lindzen E, Wack D, Weinstock-Guttman B, Ramasamy D, Carl E, Hojnacki D, Kennedy C, Dwyer MG, Bergsland N, Cox JL, Salvi F, Zivadinov R. Proceedings of the Society for Magnetic Resonance Medicine 2010
Cine cerebrospinal fluid imaging in multiple sclerosis. A case-control study.
Zivadinov R, Magnano C, Weinstock-Guttman B, Wack D, Lindzen E, Hojnacki D, Bergsland N, Kennedy C, Reuther J, Dwyer MG, Schirda C. Proceedings of the Society for Magnetic Resonance Medicine 2010 Revised March 21, 2011 Page 5 of 6
From;
Schirda C, Zamboni P, Magnano C, Lindzen E, Wack D, Weinstock-Guttman B, Ramasamy D, Carl E, Hojnacki D, Kennedy C, Dwyer MG, Bergsland N, Cox JL, Salvi F, Zivadinov R. Proceedings of the Society for Magnetic Resonance Medicine 2010
Cine cerebrospinal fluid imaging in multiple sclerosis. A case-control study.
Zivadinov R, Magnano C, Weinstock-Guttman B, Wack D, Lindzen E, Hojnacki D, Bergsland N, Kennedy C, Reuther J, Dwyer MG, Schirda C. Proceedings of the Society for Magnetic Resonance Medicine 2010 Revised March 21, 2011 Page 5 of 6
From;
Hi Dr. Flanagan,
I'm an "old timer" in tims but have been mia for awhile. I founded CCSVI Alliance and spent the past 5 months working on the Tampa Walk-n-Roll. I saw a few of your posts on other threads and my friend Marc, Wheelchair Kamikaze, told me all about you last week.
I started reading this thread on Saturday and finally reached p.61 late this afternoon (don't tell my boss!). Next I will read your book. Everything you say makes sense, especially coupled with ccsvi.
I had double vision in my left eye in 1998, and was diagnosed in 4 days w/a brain mri (one lesion) and spinal tap. I had no symptoms until the summer of 2006 when I started to limp on my left side. At that point I had my first spinal mri's - c-spine, lumbar annd thoracic, and all my lesions are in my c-spine. I went downhill very fast and by June 2008 stopped driving and was in a chair full time. I have no use of my legs and feet, although I can transfer and lock my knees. My left hand is weak, and the right is getting weaker. I have electric shocks in my upper left arm which come and go depending on the position of my head. If I look up or to the left it comes. My feet are freezing and are purple when they are down, and get red hot and feel like they are being squeezed when they are up. I have no fatique or cog fog.
I have ccsvi and was Dr. Sclafani's first patient - treated unsucessfully in the "ice age" of ccsvi treatment in 2009. I'm being treated again April 16th.
I've not had the major trauma that many of the posters talk about on this thread. I was hanging from my bent knees and fell off a parallel bar on my head and fainted when I was 10, had a car accident in 1987, hit from the rear and spun off the highway wearing no seat belt, and walked away without a scratch, bruise or ache. I remember going on a ride at a carnival the sping of 2006 where every time the car dropped, it felt like the blood was rushing back into my head. I was never big on rides, and never had any adverse effects, but that one did me in. I came off that ride feeling like my head was going to explode. My blood pressure is low normal, usually around 110/60. It always has been.
My father had polio during the Korean War, which developed into scoliosis. We have no family history of MS or other neurologic disorders.
I'm interested to be evaluated.
I live in Greenwich, CT and work in midtown Manhattan, near Grand Central. Do you have any drs you can recommend? I looked online thru different orgs and found a few that seem to be upper cervical specialists. This one is close by (and takes my insurance, a big +):
from uppercervical.org
Scott Bender, D.C.
Bender Chiropractic Center
Stamford, CT
Do you know anything about him or can you recommend anyone in lower Fairfield County, Westchester County or Manhattan?
Thank you for all the time you've given to everyone on TIMS, especially as you battle with your own problems. I truly hope the IRs are open-minded and will collaborate with you. Dr. Haacke is your bridge. I've met him several times and see how he brings people together with his infectious enthusiasm. MS is multi-factorial and it will take a meeting of the best minds from lots of disciplines to solve the mystery. I think you've solved a big piece of the puzzle.
best,
Michelle
I'm an "old timer" in tims but have been mia for awhile. I founded CCSVI Alliance and spent the past 5 months working on the Tampa Walk-n-Roll. I saw a few of your posts on other threads and my friend Marc, Wheelchair Kamikaze, told me all about you last week.
I started reading this thread on Saturday and finally reached p.61 late this afternoon (don't tell my boss!). Next I will read your book. Everything you say makes sense, especially coupled with ccsvi.
I had double vision in my left eye in 1998, and was diagnosed in 4 days w/a brain mri (one lesion) and spinal tap. I had no symptoms until the summer of 2006 when I started to limp on my left side. At that point I had my first spinal mri's - c-spine, lumbar annd thoracic, and all my lesions are in my c-spine. I went downhill very fast and by June 2008 stopped driving and was in a chair full time. I have no use of my legs and feet, although I can transfer and lock my knees. My left hand is weak, and the right is getting weaker. I have electric shocks in my upper left arm which come and go depending on the position of my head. If I look up or to the left it comes. My feet are freezing and are purple when they are down, and get red hot and feel like they are being squeezed when they are up. I have no fatique or cog fog.
I have ccsvi and was Dr. Sclafani's first patient - treated unsucessfully in the "ice age" of ccsvi treatment in 2009. I'm being treated again April 16th.
I've not had the major trauma that many of the posters talk about on this thread. I was hanging from my bent knees and fell off a parallel bar on my head and fainted when I was 10, had a car accident in 1987, hit from the rear and spun off the highway wearing no seat belt, and walked away without a scratch, bruise or ache. I remember going on a ride at a carnival the sping of 2006 where every time the car dropped, it felt like the blood was rushing back into my head. I was never big on rides, and never had any adverse effects, but that one did me in. I came off that ride feeling like my head was going to explode. My blood pressure is low normal, usually around 110/60. It always has been.
My father had polio during the Korean War, which developed into scoliosis. We have no family history of MS or other neurologic disorders.
I'm interested to be evaluated.
I live in Greenwich, CT and work in midtown Manhattan, near Grand Central. Do you have any drs you can recommend? I looked online thru different orgs and found a few that seem to be upper cervical specialists. This one is close by (and takes my insurance, a big +):
from uppercervical.org
Scott Bender, D.C.
Bender Chiropractic Center
Stamford, CT
Do you know anything about him or can you recommend anyone in lower Fairfield County, Westchester County or Manhattan?
Thank you for all the time you've given to everyone on TIMS, especially as you battle with your own problems. I truly hope the IRs are open-minded and will collaborate with you. Dr. Haacke is your bridge. I've met him several times and see how he brings people together with his infectious enthusiasm. MS is multi-factorial and it will take a meeting of the best minds from lots of disciplines to solve the mystery. I think you've solved a big piece of the puzzle.
best,
Michelle
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whyRwehere
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- Contact:
bestadmom,
Thank you for sharing your history with all of us. Can I just say that falling on your head and fainting sounds pretty traumatic to me.
I agree about the amusement rides. Took my husband to Disneyland (ugh) waited forever for a ride (thunder mountain) and realized during the ride, that it was a bad idea...we went home after that.
I will be following your treatment here, as I follow everyones, so please remember to update as you go along!
Thanks,
Why
Thank you for sharing your history with all of us. Can I just say that falling on your head and fainting sounds pretty traumatic to me.
I agree about the amusement rides. Took my husband to Disneyland (ugh) waited forever for a ride (thunder mountain) and realized during the ride, that it was a bad idea...we went home after that.
I will be following your treatment here, as I follow everyones, so please remember to update as you go along!
Thanks,
Why
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uprightdoc
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- Location: USA
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Hello Michelle,
I have to agree with whyRwehere. Falling onto your head and blacking out qualifies as serious trauma and is no doubt the cause of your current condition. The car accident probably made it worse. Dr. Scott Bender is board certified in Atlas Orthogonal, which is an excellent recognized method of upper cervical correction so give him a call. My personal battle is going very well. I just jogged three miles yesterday without a hitch. Please keep me posted. I would especially like to see your x-rays.
I have to agree with whyRwehere. Falling onto your head and blacking out qualifies as serious trauma and is no doubt the cause of your current condition. The car accident probably made it worse. Dr. Scott Bender is board certified in Atlas Orthogonal, which is an excellent recognized method of upper cervical correction so give him a call. My personal battle is going very well. I just jogged three miles yesterday without a hitch. Please keep me posted. I would especially like to see your x-rays.
Michelle,
Congratulations on a very successful fundraiser in Tampa. A team called "MS Demoliltion" had my support because the thought of "demolishing" MS appeals to me.
The other comments are spot on -- you did, indeed, suffer trauma. The human neck is a very fragile body part.
Atlas Orthogonal has been very good to me, and I pray AO will be very good to you, too. I'll also be praying that your upcoming procedure with Dr. Sclafani will be very good to you. You are one of my inspirational heroes.
Best wishes,
~HP
Congratulations on a very successful fundraiser in Tampa. A team called "MS Demoliltion" had my support because the thought of "demolishing" MS appeals to me.
The other comments are spot on -- you did, indeed, suffer trauma. The human neck is a very fragile body part.
Atlas Orthogonal has been very good to me, and I pray AO will be very good to you, too. I'll also be praying that your upcoming procedure with Dr. Sclafani will be very good to you. You are one of my inspirational heroes.
Best wishes,
~HP