CCSVI Ultrasound Test Result - Jan 2010
This is the video where I explained what my cardiologist told me on the phone about the Ultrasound test that I did last week.
Please, go and check about CCSVI on Facebook:
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/ ms.ccsvi.uk
Today, January 20, 2010 I went back to the hospital where I had the last two tests that I have to do to check the function of my heart. As I mentioned before, I decided to go to a cardiologist because I have been having strong chest pains, burning sensation in the thoracic area, spasms, palpitations and irregular heart beats especially at night time before falling asleep.
While I lived with the symptoms for about two weeks, I took the step of going to see the cardiologist that, after listening to my words and the explanation of what CCSVI is, agreed to let me do the ultrasound that I did last Thursday.
Today, while I was at the hospital doing an echocardiogram, I received the phone call from the doctor and when I got home I called him back and I was able to speak to him.
He was kind and attentive and I could tell that he had found something by the tone of his voice. He told me that, while the right side of my neck seems to be perfectly fine and that the jugular vein in the left side is ok, he saw that, in the very back part of my neck, in a very difficult area to see, there is a vein that is not draining properly.
He admitted that he had never paid attention to these things before and that he wasnt expecting this. I found him quite special because, usually, from what I have heard about doctors and their egos, I wouldnt expect a doctor to admit not knowing something and I appreciate his honesty and I thanked him so much for giving me the chance to do the test and for believing that I had something to prove.
I then explained to him about the Buffalo study and I asked him is he will be willing to learn and hear more about it, he kindly accepted and there was an enthusiasm in his voice that showed me once again that he is quite special
I am so lucky and so blessed! I might be alone in this country, I might not have very supportive people right around me, but I know that everything I am choosing to do is the right thing for me and that I will continue my journey confident that Dr. Zamboni will be able to help us.
This time, I plan to bring flowers to the nice woman that took the extra time to do the test the right awayhow could I not bring her flowers if I am Flowers4MS???
Thank you all for supporting me through this.
I will continue to be a spokesperson and an activist until all of us, all around the world, will be able to get the right careNow, its the time to dream and hope about the future for people with MSa future that has never been so bright
Hugs to all,
Angela
Пікірлер: 41
Dear Cristina, I was so fortunate and so lucky to meet the right people once again! Every time I meet someone, I open myself and I show who I am from the very beginning and sometimes this works out well for me and sometimes it doesn't....This time it did work and both the doctor and the tech person that did the test were very kind and they were touched by my MS story. Thank you for the wishes and for the blessings. I appreciate them a lot! Take good care and have a good night, hugs Angela
Dear Anna, thank you for coming and for writing! I saw your last video and I am so glad that you are doing well too! :) I dream of a day when we will have a better way to treat our MS and to cure it! This was just a first step for me and I am looking forward to the day when everyone will be able to do the right test, find out about CCSVI and get the right treatment so they can get better! Take good care, keep up the fight and keep on smiling! many hugs Angela
You are welcome, Tori. I hope you are feeling better now! Have a good day, Angela
Dear Angela, thanks for your explanation and detail. Hope you keep us posted on your next steps and how you made them happen. I just found you and Judy (Maryland) videos today. Wow, this is exciting. I've had MS since 1977 (1st attack) with visible symptoms since 1993. Thank you for action and encouragement. Barbara
Thank you so much Eliza! One day, we will get to have the right tests for everyone in every country of the world. I know it might take some time for this to happen but the more doctors will study this and will be interested in this type of research, more medical centersaround the world will offer the right ultrasound to MS patients. Thank you for the wishes! Good luck to you too! I hope that Romania will be one of the countries that will embrace this new discovery! Take care, Angela
Great advice Angela and nice to hear that your doctor and the tech were so open to this and wanting to do it the right way. Hearing things like this gives me hope, knowing that there are good doctors out there that truly care .
You are welcome, Lavonna. Thank you for coming and for watching the video. I hope you are doing well and that you are having a good day, hugs Angela
I'm so glad you found good people,dear Angela.May God help you always! God loves people like you because you love so much this life and all the people around you. I wish you all the best and may God shield you on every STEP!
Dear Bill, oh, you are so sweet and I am glad that the tears were joyful and not sad ones :) I will let everyone know more about the results of the test as soon as I can read them off a piece of paper and as soon as I can meet with the doctor for a follow up appointment. We spoke on the phone and he explained everything and he sounded surprise to find something like that. He wasn't expecting it! I am glad that I met you dear Bill and I am happy that we are friends! Have a good night Angela
Cara Marlo, I made everyone wait so much and I felt so bad about it!!!! and then - finalmente -the doctor called me at home and I was so happy to hear his voice! I am glad that I explained myself well (and thanks for letting me know that I did!) I would be in a lot of trouble if everyone that has MS would go to do the test and they would find nothing...because I think that they would get so mad at me!! We need trained people to do it or very special ones... Spero che stai bene! Un bacione
Dear Andrea I am happy that I was able to have this test done and that things went so well! The reason that I make videos on KZread is to bring hope so I hope that I am doing it :) One day soon I will post the video that I promised you and that I loved making very much. There are good doctors out there but I feel that they are quite rare so the good ones should go around the country to teach others how to be sensitive and caring doctors so we can all have one! Thank you for being a friend!
Oh-Mio-Dio! First of all, you kept us in suspence for a long time. hahaha. Seriously, this is incredible news. Thanks for explaining it so well and for explaining that it takes training to do it, because I was about to run to anyone to do it. I look forward to your updates, Angela! Baci, Marlo
Dear Angela, You are right, never give up! Upon arriving home last night my wife showed me an article in the paper advertising that there were Vein-us insufficiency screenings being done yesterday in a town near me. This is what we are up against- I think. There was no heads-up notice. Anyway, we are going to call today to find out if I can be screened. Take care dear friend and keep up the fight! Bill
Cara Tiziana, la versione in Italiano l'ho fatta pochi minuti fa ed arrivera`su KZread tra pochissimo! Grazie di essere venuta...aspetta un pochino ed arrivera`anche la versione Italiana! :) Un grosso bacio, Angela
@silbitpro2 Dear Barbara, I am so glad that Tysabri worked for you too and I understand why you stop taking it after 36 infusions! I have done only 16, but I might stop after 24...Thank you for telling me that it's possible to have emotional problems after stopping this drug and thank you for telling me that Ampyra has helped with your gait. Take good care and thanks for writing, hugs Angela
Dear Angela, You have me in tears.... Tears of joy! Thank you so much for the video and getting the word out. I can't wait for my tests if I can get them. Is the drainage problem at the back of your neck with the vein to the spinal cord? If so, that explains so much as to why they find lesions in the spinal cord too. Thank you again. I am so glad that I have met such a wonderful person like you. Bill
Caro Primoz, yes, please, talk to the MS specialist that you know in Slovenia and talk about CCSVI to cardioligists too, if you have the chance to do so. Thank you for the wishes! Ti auguro il meglio anche io! Un grande bacio, Angela
Dear Judy, I talked to the cardiologist on the phone and this is all I found out at this point. We will meet in February because he wants to see the results of the tests that I did yesterday and today. I am sure that I will learn more about this and I will make sure to share the news with all of you! I accepted your response video and thank you so much for making it! It is sooo cute!!!! Thanks! :) and have a good night, Angela
Dear Isabella, I am so happy about this step and I am going to enjoy it for a bit longer! Just like I said in the video, I plan to meet the cardiologist, find out more about the results of the other tests that I just did and then I will probably go up to Buffalo and possibly redo the test and see Dr. Zivadinov. I am also raising funds for the Buffalo center and I am going to be busy with that too. I am not going to have a treatment done yet. I have to find out more! I hope you are ok. Bises
If I find out more, I will let you know! Take care and have a good night, Angela
Thank you Angela! :-)
@silbitpro2 Dear Barbara, thank you for the message. I made an updated video about 3 weeks ago explaining why I didn't have the Liberation procedure yet. Life happened and many things did change in my life but. through it all, I am still a strong activist for CCSVI and I will always be! I meet Judy in Baltimore when I go to take Tysabri and it's good to meet a KZread friend in person! Hopefully, we will all be able to get the Liberation soon! Hugs, Angela
Glad to hear you're OK. I took tysabri for 36 months-- no side effets- all positive- first two months after stop was hard- emotional down and frequent loss of balance- just started ampyra- feeling a little more gait stability.
Dear Toby, I know what you mean! It is strange to be happy about receiving this news but I am! :) So...I will accept your "well done" and I do like it better than the commiserations! I am glad that I am able to do this and I will do my very best to keep you posted! Thanks for the kind words :) Hugs, Angela
Thank you Angela! I'll try to find out how the things are going with CCSVI ultrasound test in Romania. I don't have to many hopes. I'm waiting the results for your nexr test! And I wish good luck!
@kkkkkkatherine Dear Katie, thank you for the message! I am so glad that you have the appointment with an IR! This is very good news because he/she will be able to help you more than any other doctor would do! About the ultrasound, it's very important that the person doing the test is trained and knows what it's looking for because the person that did mine didn't know anything about CCSVI. Good luck with the test next week! Please, let me know how it goes! :) Hugs, Angela
@kkkkkkatherine You are very welcome. I hope what I do can help someone in need of information and in need of hope :) Thanks for the comment and good luck with your MS/CCSVI journey. I do believe every bit of testing is important but I also think that it's very important that the testing is done in the proper way so the patient can take the proper steps and get treated the right way. Good luck with everything! Take good care. Hugs, Angela
Dear Bill, one day soon, you will be able to get the right test done and you will finally get some answers. We are wondering about so many things and this is very frustrating, right? I will do my very best to let others doctors know about this discovery and let's hope that there will be more that will be willing to listen to us! And let's don't forget about Buffalo: you can go there, get the right test and get some answers! We will never give up, right? Have a good night and take care
:))))) sei sempre nel mio cuore, aspetto la versione in italiano, Dio sia con te
Dear Vivianne, I am sorry I didn't get to answer you before but KZread is giving me some trouble lately and I never saw your comment! Dr. Zamboni did show the relashion between the lesions on the spine and the venous problem and I am interested in this too because I have some lesions on the spine also and I would love to ask him lots of questions about this. I wrote to him a couple of days ago and he answered me right away but I didn't mention this in my e-mail. Maybe next time! Take care!
Angela, One question. Do you have spinal lesions? I wonder if your azygous vein is draining properly. This doctor sounds open and honest. This is a big step. I am proud of you for being persistent. God bless, Mark
Unfortunately, I don't know more than what I mentioned in the video because I haven't had the appointment with the cardiologist again (he is waiting for the other results) and he spoke to me on the phone. As soon as I will know about this, I promise you that I will explain more. I don't have the written results of the ultrasound in my hands yet but yes, it is difficult to see certain types of veins if you are not trained to look for them. I will tell you more as soon as I get more info! Hugs
Dear Mark, I do have lesions on my spine and many in my brain. The cardiologist didn't mention names of veins but our conversation was on the phone and I am sure that I will find out a lot more when we will meet in person at the next appointment. It is very possible that the vein that is not draining properly might have something to do with my spine. I am so curious to find out more! I will let everyone know more details as soon as I get them! Thanks for the comment and take care! Hugs Angela
Dear Enero, I wrote to Dr. Zivadinov to ask him who I should contact to make an appointment for the ultrasound and as soon as he answers me, I will post the information to the flowers4MS facebook page and I will talk about it in a future video. There are doctors in Canada that know how to do it , few in Poland and few in Italy. Hopefully, we will have more people getting the training necessary to learn how to do the right ultrasound and there will be more centers willing to offer it to patients
Dear Angela, I forgot to mention. I also had an E.K.G. done three or four years ago- maybe longer ago. They said that everything was okay, but I still feel tightness in my chest. I also asked numerous times about why my neck felt funny at times. I was tested and they found a goiter, but nothing else was done. Maybe the goiter is pinching on something. Who knows. Bill
July 30 -- I went to local Hospital's Cardiology unit for my Doppler...gave technician the Zamboni/Haake protocol BUT she just did Generic Mode of testing... pressed very hard on veins in my neck...yikes... Good news: I've got a local IR appt. next week....so every bit of testing helps? thanks for your posting Angela
Mark,have spinal lesions been specifically linked to problems with the Azygos vein? My azygos vein: don't know anything yet about it... (Simka could not check it with the doppler) would need an MRV. Steffi
Not that I am aware of, but CCSVI has made me wonder what vein would be blocked to cause spinal lesions. I have always just kind of wondered and I like to ask questions for further study. I would definitely ask why spinal lesions occur if I got to meet with Dr. SImka, Dake, Zamboni et al.
what great news! Can you tell me who the contact in Buffalo is for the self referrals? I have submitted my information for the trial in Buffalo but am curious to learn more about doctors who will perform the tests aside from the trial?
Hi! There are still more results on this particular screening? I did a video reply :D
Thank you Angela! I'll try to find out how the things are going with CCSVI ultrasound test in Romania. I don't have to many hopes. I'm waiting the results for your nexr test! And I wish good luck!