I may have most of the answer to your question as described in the 3 part presentation that I posted to Youtube about 2 weeks ago. It is called "From Stenoses to Fatigue and Scleroses" I hope this helps.
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
Please read the Wikipedia article, and other articles, on the placebo effect. That aside, note how cutting off blood flow at, say, your elbow can make your fingers go numb, and how increasing blood flow to a wound can speed healing. There is also such a thing as heavy metal poisoning. Any combination of these things, and others I haven't thought of, may help explain the results some people see from CCSVI treatments.
Some folks like fighting, that's part of the human story. Some days it's cloudy, sometimes it's fine. M.S. is part of the constant back-drop for us for now. Fight fight fight while you can.
I wonder why some people with MS have the blockage and some don't. There are so many people with MS that present differently. The MS hug and numbness in my right leg and foot were my first symptoms. I was on Copaxone for three years, but am doing better off the drug now for the last four years. Fatigue is my worse symptom with upper back pain and stabbing pains in my legs and feet. I also have Raynauds and mild RA. Best wishes to all and hopes for a cure!
Do you also think that there are techniques that make one Doctor able to perform this procedure better then others? I mean there are surgeons that are better then others too. I know that there are expert doctors in many areas for example, cathetar heart surgery-there are higher level doctors who perform this. I do not think that any ir doctor is the same as all. What do you think?
@support2gether I think that there needs to be a standard protocol. I am hearing from others that many of the IR's are doing different things. I think anyone should check out ther doctor before they have this done. There are so many different ideas of what needs to be done. Now some are focusing on the valves and have said that you will have to have this done again over your life time to maintain it. I am waiting on the blinded studies to see if I want to have this done again.
You've made some really good points. We don't really know how the drugs work on lesions either. I don't know much about the science but it seems that by far the most common improvements from the procedure have been with brain fog and fatigue. Makes sense too that having a properly functioning brain could improve all sorts of things. Terrible that so many people are trying to profit from us, but I guess that's part of human nature. I'll be making a video soon, in the middle of moving house...
I am a blind acceptor of CCSVI. During my procedure, I had improvements in cogfog and toes wiggling. My bladder.bowel issues also quickly improved.
Why does CCSVI work? Kind of like nature. Swampland can be hurt by man, then fresh water flows in and the swamp returns to full life. Our bodies are like swamps because they are a multi-organ based beings. If one organ is not getting enriched or is damaged, the whole body suffers. If the problem is corrected, the body can improve.
@MrBronte14 I am very happy for you that it helped so much. For myself I need a little more info explained as to how it really works. From what I am hearing once you have as much damage say as I do on my spine, that can't be repaired. If the procedure helps stop or slow my progression that would be worth it all to me. Only time and more studies will tell, in my opinion.
I am not very good in English writing so I quote my opinion about CCSVI
for me its placebo effect, her the quote
By extension, "fake" surgery and "fake" therapies are considered placebos.
The idea of the placebo in modern times originated with H. K. Beecher. He evaluated 15 clinical trials concerned with different diseases and found that 35% of 1,082 patients were satisfactorily relieved by a placebo alone
@egil4427 While I understand the placebo affect, you can not discount the people who have had very good results from the procedure lasting many months after it. That is where I don't see how it can be a placebo?
I've read that a number of MSers have had spinal treatments & their MS symptoms have disappeared. Google 'thisisms uprightdoc' if your interested. Some have also had the angioplasty but claim that the spinal treatments stop restenosis.
Hi Andrea, an intelligent & sensitive video. Agree with much of what youve said. Ive been interested in the spinal hypothesis for a while put forward by Dr, Flanagan, chiro, cos of my horrendous back probs. He believes that spinal probs have a causal relation to venous malformations. I think cos I only had a stenosed azygos that it makes sense to me, but who knows??
@rickileeway This is something that I am very interested in. Since I now have some scoliosis of my spine and have lost 2 inches in height, I wonder if something is going on and causing all my hug and neck pain to be so severe?? Will talk with the doc about this next visit. Thanks!
I Have Inus, !! Am NOT PAYING A FUCKING OF MY RETIREMENT UNLESS INUS> PAYS.... were all dying have been since birth! but till they pay for angio! am paying these folks NOTHING! unless they can help me ?? GET ME AN IR GET ME SOMEONE TO UNCLOG VEINS! am not paying anyone that gives me no SUPPORT! That word can be defined IN SO MANY ways................ am annoyed! just abit love you all :)
YES I DID although for some reason Kerri Kesscass (messed) This cold ass weather this year has put me down so far. MRI lower back set soon! doing our driving trip Apr.18 to AZ and quit spot in Vegas at the Bellaigo we missed Vermont st. and the bone neon yard in Feb. Maybe you and Pete would join us for the buffet? OUR treat of course! Apr. 18th is our day there then then painted desert and my sister vac house on the 17 green, casa grande does Pete golf?
please don't count me out for video response I can't at this time! I know that those that video respond get the better responses! I hope you don;t count me out! my Bullock Oriels have come for the humming bird nectar this is the 3rd yard last yr they mated and stayed with the hummers! I have now 8 feeders going but its cheap 1 cup sugar to 4 cups water... EASY cocktail hour is fun as over the years I have returns extra! watching 100s feast for their nighttime cocktail is very amusing.
It's me again. I just got the explanation about what you were unclear about regarding the blood flow. I remember seeing this experience of a Dr. who did surgery on his wife. From what I understand, we're here in Canada waiting for the opportunity to afford this treatment. It looks promising.
I just might get so desperate enough to find the money to do this myself. I think it could really be a major breakthrough.
@tocamelaconga Yes you in Canada are having a hell of a time even getting after care! That is BS, you should have the right to choose what you want to have done, like we do here in the states. All I can tell you is do your homework on where you go if you decide to have it done. There are a lot of different prices being quoted etc. There are very good doctors out there who have been doing this and training others. Good Luck!
@MSVlogSupport Thank you so much for the advice. I'm currently taking plenty of Homeopathic supplements to reverse this thing. It's really difficult to stick to a strict diet with the pills but I am trying. I'll have to wait & see what happens.
Hi Andrea. I agree with you about respecting other people's choices in how they want to treat their MS.
I must admit, I will be googling the "hug", "T4" & "CCSVI"? Apparently, I don't know very much about MS. I have been taking Homeopathic ($ $ $) remedies, on & off, since my diagnosis 10 yrs. ago. Thank you for your question & your experiences. I will look into this in order to better educate myself about our condition. Take care.
good questions, I don't think anyone truly has all the answers to them. I would have done a video response, but I feel really awful today, so I'll think about what you asked, but I have some of the same questions. My biggest argument with the drug companies has always been their insane costs, and fudging on study results. My biggest thing for CCSVI is to at least have that option available to those who want to try, where in Canada, we aren't allowed, and then become medical pariah at home :(
@BrendaRaven1 Hi Brenda, I hope your feeling better? I agree with you about how Canada is handling this and the lack of even getting after care is so wrong. I do hope you will do a video for me!!
I may do a video response. I think the real doctors working on this have the same questions as you. All of this is being looked at in their research. Doctors at this time do not know. What if the lesion itself is not the actual cause of a symptom? I'm not sure why my legs are stronger. But as you can see, I fall into that 2nd third of "some benefit" from procedure.
@donotconcede I gotta say though, it is troublesome that there is a fear of being jumped on. As far as choice, certain people are literally rabid, crying out "its my personal choice" even when no one said it was not. I'm truthfully REALLY annoyed that these people. BTW Facebook sucks and so do the CCSVI profiteers. Like anything there are those that WILL scam. A real doctor IS covered by insurance OR will work with the patient. Mine did.
@donotconcede I hope you do a video reply Judy! One of the places I was talking about that is cash only is doing a lot of the procedures. They seem very legit so I wonder why cash only?
Andrea, Great questions, I have the same ones. Can't wait to see your video responses. I personally think its not going to be one thing that controls our MS but a ccombination of things. Like CCSVI and stem cell treatment. Who knows? I will never go back on immunsurpressant drigs again! Avonex sucked, Tysabri just about killed me. I'm just going to watch and see and stay on the LDN. I'm a middle of the road person too. Do not want to make anyone mad. If you skype maybe we should talk sometime.
@Stacy9286 It's not so much about making anyone mad, I just don't want to alienate people. I can see both sides of this debate and trying to find some answers for a question that I feel is important. How are you doing on the LDN? I tried it but it made my symptoms worse. May give it another try since I have it all! Send me your Skype info!!
I am a middle of the road MSer too. I have not gotten the procedure for CCSVI yet, can't afford it. I do believe that blood flow factors into this, I'm not sure how. Can't wait to read your replies. I do get some help with the CRAB drugs (financially), but no help with CCSVI.
@mzdjpb Can ask which crab your on and how you are doing with it? That is another thing the cost for the procedure it varies so much from place to place. I still believe that it plays a part in it and there is more to learn!
Yes personal choices matter the most I know I got angry with some folks and I was wrong, we here to help each other no matter what... My anger is am out of options (drugs) that is and am happy after my near death with the T drug but am finding and working on other ways to manage my MS.
I also have wondered. My last MRI showed multiple liaisons (not active) but more then they wanted to count I guess, I call it up to better flow and oxygen, just the hope am sure lifts the spirit. xoxo susan
@ThePennygirl Hi Susan! I just try and remember that we all have the same disease and it is very hard sometimes to make decisions on what you can do to help yourself. I am sorry that things have been so rough for you. Would love to Skpe again, did you get your camera working right???
Hello Andrea
I may have most of the answer to your question as described in the 3 part presentation that I posted to Youtube about 2 weeks ago. It is called "From Stenoses to Fatigue and Scleroses" I hope this helps.
Dr. Trevor Tucker
3ttucker 7 months ago
@3ttucker Feel free to send them as video responses!!!
MSVlogSupport 7 months ago
This has been flagged as spam show
A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures.
The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.
CCSVIROMANIA 9 months ago
For heavy metal poisoning are tablets. Look up chelation therapy and Deferoxamine.
egil4427 10 months ago
Please read the Wikipedia article, and other articles, on the placebo effect. That aside, note how cutting off blood flow at, say, your elbow can make your fingers go numb, and how increasing blood flow to a wound can speed healing. There is also such a thing as heavy metal poisoning. Any combination of these things, and others I haven't thought of, may help explain the results some people see from CCSVI treatments.
kennita728 10 months ago
Thank you for asking those questions and thank you for sharing.
MsHopeforhealing 10 months ago
Some folks like fighting, that's part of the human story. Some days it's cloudy, sometimes it's fine. M.S. is part of the constant back-drop for us for now. Fight fight fight while you can.
Alexknobsob 10 months ago
I wonder why some people with MS have the blockage and some don't. There are so many people with MS that present differently. The MS hug and numbness in my right leg and foot were my first symptoms. I was on Copaxone for three years, but am doing better off the drug now for the last four years. Fatigue is my worse symptom with upper back pain and stabbing pains in my legs and feet. I also have Raynauds and mild RA. Best wishes to all and hopes for a cure!
katherinebelinda 10 months ago
Hi Andrea! I sent you a response on FB. Please take a look and let me know what you think. Best, Ann :-)
anncarolg1 11 months ago
Do you also think that there are techniques that make one Doctor able to perform this procedure better then others? I mean there are surgeons that are better then others too. I know that there are expert doctors in many areas for example, cathetar heart surgery-there are higher level doctors who perform this. I do not think that any ir doctor is the same as all. What do you think?
support2gether 11 months ago
@support2gether I think that there needs to be a standard protocol. I am hearing from others that many of the IR's are doing different things. I think anyone should check out ther doctor before they have this done. There are so many different ideas of what needs to be done. Now some are focusing on the valves and have said that you will have to have this done again over your life time to maintain it. I am waiting on the blinded studies to see if I want to have this done again.
MSVlogSupport 10 months ago
@MSVlogSupport
I agree with you on that.
support2gether 10 months ago
You've made some really good points. We don't really know how the drugs work on lesions either. I don't know much about the science but it seems that by far the most common improvements from the procedure have been with brain fog and fatigue. Makes sense too that having a properly functioning brain could improve all sorts of things. Terrible that so many people are trying to profit from us, but I guess that's part of human nature. I'll be making a video soon, in the middle of moving house...
missalgernon 11 months ago
@missalgernon Thanks Amanda, moving is a pain! I look forward to your video :-)
MSVlogSupport 10 months ago
I am a blind acceptor of CCSVI. During my procedure, I had improvements in cogfog and toes wiggling. My bladder.bowel issues also quickly improved.
Why does CCSVI work? Kind of like nature. Swampland can be hurt by man, then fresh water flows in and the swamp returns to full life. Our bodies are like swamps because they are a multi-organ based beings. If one organ is not getting enriched or is damaged, the whole body suffers. If the problem is corrected, the body can improve.
MrBronte14 11 months ago
@MrBronte14 I am very happy for you that it helped so much. For myself I need a little more info explained as to how it really works. From what I am hearing once you have as much damage say as I do on my spine, that can't be repaired. If the procedure helps stop or slow my progression that would be worth it all to me. Only time and more studies will tell, in my opinion.
MSVlogSupport 10 months ago
I am not very good in English writing so I quote my opinion about CCSVI
for me its placebo effect, her the quote
By extension, "fake" surgery and "fake" therapies are considered placebos.
The idea of the placebo in modern times originated with H. K. Beecher. He evaluated 15 clinical trials concerned with different diseases and found that 35% of 1,082 patients were satisfactorily relieved by a placebo alone
Full story
skepdic.com/placebo.html
egil4427 11 months ago
@egil4427 While I understand the placebo affect, you can not discount the people who have had very good results from the procedure lasting many months after it. That is where I don't see how it can be a placebo?
MSVlogSupport 10 months ago
@MSVlogSupport
Months is very little time, in MS we must talk years. Most people have 1 relapse in 1 year or less.
Second, I don’t believe its only thing what’s helping. Like you, they train, taking vitamins and so on.
Its like massage, what don’t help directly, only gives good feeling and the end it is good.
Can you confirm what its 100% CCVI what is improved your condition.
When you say this, I believe, and hope it will make your life more enjoyable.
egil4427 10 months ago
I've read that a number of MSers have had spinal treatments & their MS symptoms have disappeared. Google 'thisisms uprightdoc' if your interested. Some have also had the angioplasty but claim that the spinal treatments stop restenosis.
rickileeway 11 months ago
Hi Andrea, an intelligent & sensitive video. Agree with much of what youve said. Ive been interested in the spinal hypothesis for a while put forward by Dr, Flanagan, chiro, cos of my horrendous back probs. He believes that spinal probs have a causal relation to venous malformations. I think cos I only had a stenosed azygos that it makes sense to me, but who knows??
.
rickileeway 11 months ago
@rickileeway This is something that I am very interested in. Since I now have some scoliosis of my spine and have lost 2 inches in height, I wonder if something is going on and causing all my hug and neck pain to be so severe?? Will talk with the doc about this next visit. Thanks!
MSVlogSupport 10 months ago
I Have Inus, !! Am NOT PAYING A FUCKING OF MY RETIREMENT UNLESS INUS> PAYS.... were all dying have been since birth! but till they pay for angio! am paying these folks NOTHING! unless they can help me ?? GET ME AN IR GET ME SOMEONE TO UNCLOG VEINS! am not paying anyone that gives me no SUPPORT! That word can be defined IN SO MANY ways................ am annoyed! just abit love you all :)
ThePennygirl 11 months ago
YES I DID although for some reason Kerri Kesscass (messed) This cold ass weather this year has put me down so far. MRI lower back set soon! doing our driving trip Apr.18 to AZ and quit spot in Vegas at the Bellaigo we missed Vermont st. and the bone neon yard in Feb. Maybe you and Pete would join us for the buffet? OUR treat of course! Apr. 18th is our day there then then painted desert and my sister vac house on the 17 green, casa grande does Pete golf?
Much more stuff to say
ThePennygirl 11 months ago
please don't count me out for video response I can't at this time! I know that those that video respond get the better responses! I hope you don;t count me out! my Bullock Oriels have come for the humming bird nectar this is the 3rd yard last yr they mated and stayed with the hummers! I have now 8 feeders going but its cheap 1 cup sugar to 4 cups water... EASY cocktail hour is fun as over the years I have returns extra! watching 100s feast for their nighttime cocktail is very amusing.
ThePennygirl 11 months ago
It's me again. I just got the explanation about what you were unclear about regarding the blood flow. I remember seeing this experience of a Dr. who did surgery on his wife. From what I understand, we're here in Canada waiting for the opportunity to afford this treatment. It looks promising.
I just might get so desperate enough to find the money to do this myself. I think it could really be a major breakthrough.
God knows, I want my life back.
tocamelaconga 11 months ago
@tocamelaconga Yes you in Canada are having a hell of a time even getting after care! That is BS, you should have the right to choose what you want to have done, like we do here in the states. All I can tell you is do your homework on where you go if you decide to have it done. There are a lot of different prices being quoted etc. There are very good doctors out there who have been doing this and training others. Good Luck!
MSVlogSupport 10 months ago
@MSVlogSupport Thank you so much for the advice. I'm currently taking plenty of Homeopathic supplements to reverse this thing. It's really difficult to stick to a strict diet with the pills but I am trying. I'll have to wait & see what happens.
tocamelaconga 10 months ago
Hi Andrea. I agree with you about respecting other people's choices in how they want to treat their MS.
I must admit, I will be googling the "hug", "T4" & "CCSVI"? Apparently, I don't know very much about MS. I have been taking Homeopathic ($ $ $) remedies, on & off, since my diagnosis 10 yrs. ago. Thank you for your question & your experiences. I will look into this in order to better educate myself about our condition. Take care.
tocamelaconga 11 months ago
Comment removed
justincaseido 11 months ago
good questions, I don't think anyone truly has all the answers to them. I would have done a video response, but I feel really awful today, so I'll think about what you asked, but I have some of the same questions. My biggest argument with the drug companies has always been their insane costs, and fudging on study results. My biggest thing for CCSVI is to at least have that option available to those who want to try, where in Canada, we aren't allowed, and then become medical pariah at home :(
BrendaRaven1 11 months ago
@BrendaRaven1 Hi Brenda, I hope your feeling better? I agree with you about how Canada is handling this and the lack of even getting after care is so wrong. I do hope you will do a video for me!!
Hugs,
Andrea
MSVlogSupport 10 months ago
@MSVlogSupport hi Andrea :) I will try, this week is a little nuts, but I'll really try... plus my hairdresser chopped my bangs off so badly!! LOL
BrendaRaven1 10 months ago
I may do a video response. I think the real doctors working on this have the same questions as you. All of this is being looked at in their research. Doctors at this time do not know. What if the lesion itself is not the actual cause of a symptom? I'm not sure why my legs are stronger. But as you can see, I fall into that 2nd third of "some benefit" from procedure.
donotconcede 11 months ago
@donotconcede I gotta say though, it is troublesome that there is a fear of being jumped on. As far as choice, certain people are literally rabid, crying out "its my personal choice" even when no one said it was not. I'm truthfully REALLY annoyed that these people. BTW Facebook sucks and so do the CCSVI profiteers. Like anything there are those that WILL scam. A real doctor IS covered by insurance OR will work with the patient. Mine did.
donotconcede 11 months ago
@donotconcede I hope you do a video reply Judy! One of the places I was talking about that is cash only is doing a lot of the procedures. They seem very legit so I wonder why cash only?
MSVlogSupport 11 months ago
Andrea, Great questions, I have the same ones. Can't wait to see your video responses. I personally think its not going to be one thing that controls our MS but a ccombination of things. Like CCSVI and stem cell treatment. Who knows? I will never go back on immunsurpressant drigs again! Avonex sucked, Tysabri just about killed me. I'm just going to watch and see and stay on the LDN. I'm a middle of the road person too. Do not want to make anyone mad. If you skype maybe we should talk sometime.
Stacy9286 11 months ago
@Stacy9286 It's not so much about making anyone mad, I just don't want to alienate people. I can see both sides of this debate and trying to find some answers for a question that I feel is important. How are you doing on the LDN? I tried it but it made my symptoms worse. May give it another try since I have it all! Send me your Skype info!!
Andrea
MSVlogSupport 11 months ago
I am a middle of the road MSer too. I have not gotten the procedure for CCSVI yet, can't afford it. I do believe that blood flow factors into this, I'm not sure how. Can't wait to read your replies. I do get some help with the CRAB drugs (financially), but no help with CCSVI.
mzdjpb 11 months ago
@mzdjpb Can ask which crab your on and how you are doing with it? That is another thing the cost for the procedure it varies so much from place to place. I still believe that it plays a part in it and there is more to learn!
MSVlogSupport 11 months ago
PS lets skype soon?
ThePennygirl 11 months ago
Yes personal choices matter the most I know I got angry with some folks and I was wrong, we here to help each other no matter what... My anger is am out of options (drugs) that is and am happy after my near death with the T drug but am finding and working on other ways to manage my MS.
I also have wondered. My last MRI showed multiple liaisons (not active) but more then they wanted to count I guess, I call it up to better flow and oxygen, just the hope am sure lifts the spirit. xoxo susan
ThePennygirl 11 months ago
@ThePennygirl Hi Susan! I just try and remember that we all have the same disease and it is very hard sometimes to make decisions on what you can do to help yourself. I am sorry that things have been so rough for you. Would love to Skpe again, did you get your camera working right???
Hugs
MSVlogSupport 11 months ago