Sunday, May 30, 2010
Hey, I thought that I would take some time to explain velocity of the veins. So this is how it was explained to me. The average velocity if the jugular veins is 40 -50. The velocity is how much blood is being drained from the vein. If the vein is compromised than it has to push the blood through harder, this is why the number goes up. For example pre -CCSVI my velocity was 300, so my vein was so pinched that the blood was pushing so much harder to drain from the brain.
When you go in for the Doppler you can hear the blood flow in the veins. If it is really loud it is pushing really hard to get through. If it is quiet than it is flowing more normally. When I went in I heard this loud sound almost like liquid in one spot on my neck. Then when they moved the ultra sound down my neck it was quiet. So not only can you see where the vein is compromised you can hear the blood trying to get through the compromised area. And that is velocity as I know it.
I have also been hearing that some of you are a little nervous about this procedure. So I want to tell you that I am a HUGE baby when it comes to pain and or anything medical that is happening to me. I know that most of you have had spinal taps or Lumbar punctures. That my friends is 100 times worse. I think that if I explain step by step what happened the day of my CCSVI it will help to calm your nerves.
First of all I did not have time to be scared. They told me to go to an MRV at 8am and take a valium. SO I did and I took it with food. I had had 2 Dopplers before this. I came back from my MRV happy and calm and they said your going into the O.R. in 30 mins. Once the MRV confirmed what the 2 Dopplers told them they did not want to waste anytime. ( which is exactly the kind of treatment you will receive; if they do a Doppler and MRV on Monday you are going in for CCSVI Tuesday) I checked into the hospital across the street from the clinic. I wanted to have anesthesia but because I had ate they could not give it to me. So we went with an I.V. of valium. I was awake the entire time and it took about 2 and half hours. My right side went by really fast as its velocity was 260. The left side took twice as Long because of how blocked it was. They had to get a different size balloon to get it open. I wont lie and say you don't feel anything. When they blow the balloon open you get a terrible headache on the entire side of your face. Your teeth hurt your ear, eyes, nose and head. But that only lasts for 5 mins. Then it goes away. That was the only thing I felt the whole time. I had to lie flat without moving my legs fro 4 hours in recovery to wait for blood to clot. Where they enter through the groin area. Once the blood clots, you have to take plavix so blood does not clot in the vein. They send you home with painkillers because your neck and leg are sore for about a week. I hope that helps. Any questions??
When you go in for the Doppler you can hear the blood flow in the veins. If it is really loud it is pushing really hard to get through. If it is quiet than it is flowing more normally. When I went in I heard this loud sound almost like liquid in one spot on my neck. Then when they moved the ultra sound down my neck it was quiet. So not only can you see where the vein is compromised you can hear the blood trying to get through the compromised area. And that is velocity as I know it.
I have also been hearing that some of you are a little nervous about this procedure. So I want to tell you that I am a HUGE baby when it comes to pain and or anything medical that is happening to me. I know that most of you have had spinal taps or Lumbar punctures. That my friends is 100 times worse. I think that if I explain step by step what happened the day of my CCSVI it will help to calm your nerves.
First of all I did not have time to be scared. They told me to go to an MRV at 8am and take a valium. SO I did and I took it with food. I had had 2 Dopplers before this. I came back from my MRV happy and calm and they said your going into the O.R. in 30 mins. Once the MRV confirmed what the 2 Dopplers told them they did not want to waste anytime. ( which is exactly the kind of treatment you will receive; if they do a Doppler and MRV on Monday you are going in for CCSVI Tuesday) I checked into the hospital across the street from the clinic. I wanted to have anesthesia but because I had ate they could not give it to me. So we went with an I.V. of valium. I was awake the entire time and it took about 2 and half hours. My right side went by really fast as its velocity was 260. The left side took twice as Long because of how blocked it was. They had to get a different size balloon to get it open. I wont lie and say you don't feel anything. When they blow the balloon open you get a terrible headache on the entire side of your face. Your teeth hurt your ear, eyes, nose and head. But that only lasts for 5 mins. Then it goes away. That was the only thing I felt the whole time. I had to lie flat without moving my legs fro 4 hours in recovery to wait for blood to clot. Where they enter through the groin area. Once the blood clots, you have to take plavix so blood does not clot in the vein. They send you home with painkillers because your neck and leg are sore for about a week. I hope that helps. Any questions??
Saturday, May 29, 2010
30 days post jugular Angioplasty
Hello All,
Yes I had my 30 day follow up. The news was not bad. Originally the velocity on my left jugular vein was 300 when it should be between 40-50. And on the right side it was 260. Dr. D opened my veins to a 40 velocity on both sides. 30 days later the right side is still at a 40!!! Yeah that's great news! However the left side went up to an 84. They are not going to re-angioplasty it because an 84 is still way better than a 300, however I have to go back in 30 more days to see if it closes more. If so I might have to have another angioplasty if not I'm good.
I'm feeling great! My headaches have gone away. I have not had one headache in 30 days knock on wood. I used to get them about once every week. So that is a major improvement. I finally feel like I have energy again. Today was one of the first days I felt like myself again.
So I am staying positive. If the Doctors aren't worried than I'm not either. I spoke with my MS Dr. about the news and he said, " we are learning that it is not just the velocity Tisa, but that the blood is flowing away from the brain or down." My blood is flowing in the right direction so that is good. He will also check me in 30 days to see if my lesions are going away and make sure that there is no disease progression. SO I guess we will just stay positive and wait another 30 days. Thanks for all your concern and support, T
Yes I had my 30 day follow up. The news was not bad. Originally the velocity on my left jugular vein was 300 when it should be between 40-50. And on the right side it was 260. Dr. D opened my veins to a 40 velocity on both sides. 30 days later the right side is still at a 40!!! Yeah that's great news! However the left side went up to an 84. They are not going to re-angioplasty it because an 84 is still way better than a 300, however I have to go back in 30 more days to see if it closes more. If so I might have to have another angioplasty if not I'm good.
I'm feeling great! My headaches have gone away. I have not had one headache in 30 days knock on wood. I used to get them about once every week. So that is a major improvement. I finally feel like I have energy again. Today was one of the first days I felt like myself again.
So I am staying positive. If the Doctors aren't worried than I'm not either. I spoke with my MS Dr. about the news and he said, " we are learning that it is not just the velocity Tisa, but that the blood is flowing away from the brain or down." My blood is flowing in the right direction so that is good. He will also check me in 30 days to see if my lesions are going away and make sure that there is no disease progression. SO I guess we will just stay positive and wait another 30 days. Thanks for all your concern and support, T
Wednesday, May 26, 2010
How to be put on the list for CCSVI in USA
Step One: Email me tisamccay@gmail.com
Step two: Just your NAME and PHONE NUMBER
Step three: Wait for Teresa to contact you. 3 weeks
Step four: Read my blog as you will find all of your answers in here
Step five: I DO NOT KNOW THE COST AND DO NOT WORK FOR THEM
Step six: I am just doing this to help all of you.
Step seven: I asked them how I can help and they said make a list of people who need treatment. So that is what I am doing.
Step eight: If you do not find an answer in this blog please email me your questions and I will answer.
Thanks
I had to put it in these terms because so many people email me on Facebook. And so many others do not include their phone number. And then others ask for DR.'s number which I can not give out.
Step two: Just your NAME and PHONE NUMBER
Step three: Wait for Teresa to contact you. 3 weeks
Step four: Read my blog as you will find all of your answers in here
Step five: I DO NOT KNOW THE COST AND DO NOT WORK FOR THEM
Step six: I am just doing this to help all of you.
Step seven: I asked them how I can help and they said make a list of people who need treatment. So that is what I am doing.
Step eight: If you do not find an answer in this blog please email me your questions and I will answer.
Thanks
I had to put it in these terms because so many people email me on Facebook. And so many others do not include their phone number. And then others ask for DR.'s number which I can not give out.
Tuesday, May 25, 2010
Thursday I go for my 30 day follow up
Hey Everyone, Just wanted to write to tell you I will be going in on Thursday for my follow up to make sure my veins are still open. I will keep you all posted. Every time I see my Dr. He talks to me about CCSVI in medical terms; I've never even heard of. He talks to me like a fellow Dr. because I showed him a treatment he did know anything about. But he has learned so much. He is constantly studying up on CCSVI now and speaking with Dr. Dake. He is so excited! I honestly think that he is just as excited as all of you. He has studied it so much he has even added another step to Zambonni's protocol. He will have the Doppler or ultra sound in the O. R. so that while he is in the vein with the catheter he can check velocity with the Doppler. He is so into this guys! Its awesome to see a Dr. who really wants to help people with new and innovative treatments. I have said before and I will repeat because I am so excited they are starting treatment at the beginning of July!!!
So lets all stay positive and be happy. He truly is an amazing Dr. I cant wait for all of you to meet him
So lets all stay positive and be happy. He truly is an amazing Dr. I cant wait for all of you to meet him
NEW COMERS TO MY BLOG
I know some of you do not have the time to read everything I write. SO I will keep posting the info on how to have CCSVI in the US. Just email me your name and number and I will send it to my Dr. And his nurse will contact you. They will begin treatment in July. There is already 100+ on the waiting list so get your name and number to tisamccay@gmail.com . Also if you have more questions please read my entire blog as you will find out the answers. Lastly I do not know how much the treatment costs. That is something you can discuss with Teresa the nurse when she contacts you. Thanks and I cant wait to hear from all of you when you are liberated!!!
How long have Dr.s known about Iron in the brain? Thanks Joan for this info
Now, let's talk about the iron issue. This has been Dr. Zamboni's "smoking gun." He wrote a paper on iron called "The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis"- in which he explicitly outlines the parallels between chronic venous insufficiency in the legs and iron deposition and what we see in MS brains. If you haven't read it yet, it's a must read-
http://jrsm.rsmjournals.com/cgi/content/full/99/11/589?maxtoshow&HITS=10&hits=10&RESULTFORMAT&fulltext=zamboni&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
So, how long have doctors known about this connection of iron and the MS brain? Here is a paper from 1988- yes, that is over 20 years ago- discussing the cerebral vein walls and iron deposition in multiple sclerosis-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1031540/pdf/jnnpsyc00537-0096.pdf
"C W M ADAMS
From the Division of Histopathology, United Medical and Dental Schools of Guy's and St Thomas's Hospitals, University of London, UK
SUMMARY Evidence of damage to cerebral vein walls was sought in 70 cases of multiple sclerosis. Seventy control cases were also examined. The multiple sclerosis cases showed venous intramural fibrinoid deposition (7 %), recent haemorrhages (17%), old haemorrhages revealed by haemosiderin deposition (30%), thrombosis (6%) and thickened veins (19%). In all, 41% of all multiple sclerosis cases showed some evidence of vein damage. Occasional control cases showed haemosiderin deposition in the brain but, unlike the multiple sclerosis cases, these were diffuse and almost entirely related to coexistent cardiovascular or cerebrovascular disease. Haemosiderin deposition was common in the substantia nigra and other pigmented nuclei in all cases. It is concluded that the cerebral vein wall in multiple sclerosis is subject to chronic inflammatory damage, which promotes haemorrhage and increased permeability, and constitutes a form of vasculitis."
-so, here we have a study in 1988 showing vein damage in almost half of the MS patients- and the researchers note hemorrhage, hemosiderin (iron storage) deposition, thickened vein walls and call it a form of "vasculitis."
"The results reported here reinforce the view that damage to the vein wall is an important aspect of the pathology of the multiple sclerosis plaque. The vasculitis caused is different from and of a more modest nature than that, for example, in systemic lupus or polyarteritis nodosa but is, nevertheless, enough to cause haemorrhage, and structural and permeability
changes in the vessel wall. The term proposed by Lendrum for a wide range of vasculitic disorders is plasmatic vasculosis, and the damage to the vein wall in multiple sclerosis could be regarded as causing a minor degree of such plasmatic vasculosis. Inflammatory and reparative changes in the vein wall might be exacerbated by pulsations or surges in intracranial venous pressure and may result in increased permeability of the multiple sclerosis plaque, as shown at necropsy, by immunohistochemistry and by brain scan."
OK. So, the researchers note that this is different than vasculitis- it's really about damage to the VEIN wall. They even posit that this damage may be caused by PULSATIONS or SURGES of intracranial venous pressure (like from venous reflux, perhaps?)
-Let's just move ahead 20 years....thru the vast miasma of autoimmune research- - -
Here is Dr. Haacke's paper from earlier this year. This is research completed BEFORE he read Dr. Zamboni's research. Dr. Haacke has since became so convinced that Dr. Zamboni's research provided the missing link, he is now covering the globe, opening research centers to diagnose venous stenosis and reflux.
http://www.direct-ms.org/pdf/CCSVI/Haacke%20imaging%20Fe%20in%20MS%2009.pdf
There are many, many papers linking iron deposition and disability in MS brains. If you want to read more and post them, please go ahead.
My Doctor in Arizona will begin treatment after the 4th of July. So get your names and numbers in. There are already 100 people on the list. tisamccay@gmail.com
Monday, May 24, 2010
I am re posting my 5th blog so people can understand how I got CCSVI in the US
Hello Again,
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.
After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.
After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.
Send just your name and contact number to tisamccay@gmail.com and I will send it to my Doctor who will begin treating people in July. Then his nurse will contact you with more info. Thanks Tisa
Thursday, May 20, 2010
Thank you all
Hi Everyone, I just wanted to thank all of you for sharing information and knowledge that you all have that I do not know about yet. I honestly feel like all of us with MS combined know more than than most Doctors about our disease. People with MS may have lesions that affect their brain, but they are not stupid or uninformed. I find my self telling Doctors things that they have no clue about all the time. This is thanks to our little community of MSers sharing information with one another. I learn something new everyday, and I teach Doctors and others new things everyday. We all are here to fight!! Most doctors just want to write a prescription and send us on our way. They don't care about new approaches or treatments, they are just glorified drug dealers. And I am referring to most Doctors. There is always an exception to the rule right?
For instance; I saw 4 MS specialists and only 1 out of the 4 was willing to listen to me, and learn from me. When I said NO Drugs, I want to find a different way to treat this, he agreed and never once tried to push the ABCs on me. All 3 other Doctors, did not listen and made me feel like I was a horrible person for not wanting their drugs. None of the 3 would even listen to anything about LDN or CCSVI or even vitamins and hormones. One of the 3 actually told me to not speak until it was my turn. Its no wonder we are having such a difficult time getting CCSVI approved, no one will listen!! They are all stuck in their ways. I call it tunnel vision all they see is drugs drugs drugs.
However I was blessed to find my Cardiologist who did listen and study and treat me. Also lucky to have my MS Dr support me. I cant wait for all of you to receive the treatment you have been waiting for since the day you were told you would have to inject your self everyday with drugs for the rest of your lives.
So keep the positive attitudes! Keep the research flowing. Keep sharing your stories! Keep your Dr.s on their feet!! And keep the faith. And KEEP the emails coming. We are very close to opening up treatment. Just waiting on Doppler machine that can see the brain. God Bless, T
For instance; I saw 4 MS specialists and only 1 out of the 4 was willing to listen to me, and learn from me. When I said NO Drugs, I want to find a different way to treat this, he agreed and never once tried to push the ABCs on me. All 3 other Doctors, did not listen and made me feel like I was a horrible person for not wanting their drugs. None of the 3 would even listen to anything about LDN or CCSVI or even vitamins and hormones. One of the 3 actually told me to not speak until it was my turn. Its no wonder we are having such a difficult time getting CCSVI approved, no one will listen!! They are all stuck in their ways. I call it tunnel vision all they see is drugs drugs drugs.
However I was blessed to find my Cardiologist who did listen and study and treat me. Also lucky to have my MS Dr support me. I cant wait for all of you to receive the treatment you have been waiting for since the day you were told you would have to inject your self everyday with drugs for the rest of your lives.
So keep the positive attitudes! Keep the research flowing. Keep sharing your stories! Keep your Dr.s on their feet!! And keep the faith. And KEEP the emails coming. We are very close to opening up treatment. Just waiting on Doppler machine that can see the brain. God Bless, T
New Water that can help MS
http://www.viddler.com/explore/drkaplan/videos/4/
http://www.viddler.com/explore/drkaplan/videos/6/
http://www.viddler.com/explore/drkaplan/videos/5/
http://www.viddler.com/explore/drkaplan/videos/8/
http://www.viddler.com/explore/drkaplan/videos/6/
http://www.viddler.com/explore/drkaplan/videos/5/
http://www.viddler.com/explore/drkaplan/videos/8/
Wednesday, May 19, 2010
Im Back, and ready to keep helping.
Hello Again,
Just a Note to begin: You can now leave comments without following my blog!! YEAH so leave some!! I always want feedback and or questions.
More Exciting news: I spoke with my MS specialist today, and he said that because of me his neurology department here in Phoenix is also looking into setting up to treat CCSVI.. Now they were totally opposed when I first asked them, And now that they have seen and heard all about what my Cardiologist did for me and will soon be doing for all of you. They have opened their eyes. My MS Dr. has always been on board and even began teaming up with my cardiologist so that he could be a part of treating and researching CCSVI. So when his hospital full of neurologists heard that he was going else where to be a part of it. They now want to be a part of it too.
That being said they are not as far along as my Dr. who treated me and who I am referring all of you to. However it is still exciting news that there MAY be one more place in the US and in AZ that can treat CCSVI.
On another note as I am sure most of you have heard Montell Williams has recently started to investigate CCSVI. It would be great if he could get us some more press. As I know lots of you in Canada have done a great job with getting the media to talk about it. Not a lot of people are even familiar with CCSVI in the US. So we need to get the word out there!!! Thanks for reading, T
Just a Note to begin: You can now leave comments without following my blog!! YEAH so leave some!! I always want feedback and or questions.
More Exciting news: I spoke with my MS specialist today, and he said that because of me his neurology department here in Phoenix is also looking into setting up to treat CCSVI.. Now they were totally opposed when I first asked them, And now that they have seen and heard all about what my Cardiologist did for me and will soon be doing for all of you. They have opened their eyes. My MS Dr. has always been on board and even began teaming up with my cardiologist so that he could be a part of treating and researching CCSVI. So when his hospital full of neurologists heard that he was going else where to be a part of it. They now want to be a part of it too.
That being said they are not as far along as my Dr. who treated me and who I am referring all of you to. However it is still exciting news that there MAY be one more place in the US and in AZ that can treat CCSVI.
On another note as I am sure most of you have heard Montell Williams has recently started to investigate CCSVI. It would be great if he could get us some more press. As I know lots of you in Canada have done a great job with getting the media to talk about it. Not a lot of people are even familiar with CCSVI in the US. So we need to get the word out there!!! Thanks for reading, T
Sunday, May 16, 2010
Hi again,
I originally started this blog to let others know how the recovery of CCSVI is and how it is working for me and my case. But then I realized I could help others get treatment as well, and for the past few weeks I have only been blogging about how to contact my Dr. It is so important to me that others have the same opportunity that I did. Sometimes I really cant believe that people can go and choose to have life threatening plastic surgery but they can not convince a single Dr. to simply open blocked veins. Its CRAZY. So yes I found a Dr that did open my veins and will soon be opening as many of you as possible.
Lots of you ask how I have been feeling? As I said in my first blog I have only had MS for 5 months now, so I felt pretty much the same after treatment. I will say that my neck was pretty sore for a week or so. It went away but today it has been sore again. Also just as I finally felt 100% better from my angioplasty ( about 1-2 weeks) I got strep throat. So I am still recovering from that. I don't like to write to much about how I feel, because I know that there are so many of you out there that are so much worse than I ever was to begin with.
On another note: I talked to another woman who had CCSVI by Dr. Dake about 6 months ago, and she said all of her lesions on her brain where gone 2 months after treatment. She had MS like me very mild. She told me that if you are more of a mild case it takes longer to see the results. In 2 weeks I will go for my 2nd MRV to check and make sure the veins are open. They will also look at my brain and see if lesions are starting to go away!! I am excited about the possibility of that happening. But we all know how yuck MRI and MRVs are. So I will keep you posted, and please keep emailing me your info for my Dr. I love helping in any way possible.
I originally started this blog to let others know how the recovery of CCSVI is and how it is working for me and my case. But then I realized I could help others get treatment as well, and for the past few weeks I have only been blogging about how to contact my Dr. It is so important to me that others have the same opportunity that I did. Sometimes I really cant believe that people can go and choose to have life threatening plastic surgery but they can not convince a single Dr. to simply open blocked veins. Its CRAZY. So yes I found a Dr that did open my veins and will soon be opening as many of you as possible.
Lots of you ask how I have been feeling? As I said in my first blog I have only had MS for 5 months now, so I felt pretty much the same after treatment. I will say that my neck was pretty sore for a week or so. It went away but today it has been sore again. Also just as I finally felt 100% better from my angioplasty ( about 1-2 weeks) I got strep throat. So I am still recovering from that. I don't like to write to much about how I feel, because I know that there are so many of you out there that are so much worse than I ever was to begin with.
On another note: I talked to another woman who had CCSVI by Dr. Dake about 6 months ago, and she said all of her lesions on her brain where gone 2 months after treatment. She had MS like me very mild. She told me that if you are more of a mild case it takes longer to see the results. In 2 weeks I will go for my 2nd MRV to check and make sure the veins are open. They will also look at my brain and see if lesions are starting to go away!! I am excited about the possibility of that happening. But we all know how yuck MRI and MRVs are. So I will keep you posted, and please keep emailing me your info for my Dr. I love helping in any way possible.
Friday, May 14, 2010
For those seeking treatment
Hello, I have received all of your emails. 50 in the past 2 days. I automatically forward them directly to my Dr. I try to write each and everyone of you back to let you know that your information has been sent to the Dr. SO if you email me your name and phone number to tisamccay@gmail.com I WILL SEND IT TO MY DR. AS SOON AS I RECEIVE IT!! My Dr.'s nurse Teresa will call you in 2-3 weeks. The list is starting to get long, so if you want treatment get your name and number to me ASAP. Thanks and sorry if I seem a bit crazy. It is hard trying to be on vacation and getting so many emails. I LOVE to help you all, just please don't ask me if your information has been sent to the DR. after I already sent an email telling you that it was. I really do get great joy and pride in helping all of you, and I do not mind forwarding your emails to my Dr. even while I am on vacation. So keep um coming! I know Teresa was able to call a lot of you back today.Also if this is your first visit to my blog please read my first few entries about how I got treatment. Thanks Again T
Tuesday, May 11, 2010
Hey Everyone, I spoke with my Doctor's nurse today, and she wanted me to tell you that they are moving forward, and if you have added your name to my list, or called her directly, she will be calling you in the next week or so to fill you in on when they will start treating people!!! This is more exciting news!! So if you are not on the list and are interested in treatment, please email me tisamccay@gmail.com . Cant wait till you are emailing me to tell me you are feeling better, after treatment. I am going out of town again for a few days, so I wont be blogging. but I will keep forwarding your contact info to my Dr. Thanks for reading, T
Sunday, May 9, 2010
MS and Iron & MS and Pregnancy
Hi Everyone,
I am back for a few days before I leave again. So I was thinking about all the testing I had done and came to my own hypothesis. It may not be true and as you all know I am not a Dr. but I have an educated guess about something.
So when I was first trying to figure out what was wrong with me. I went to the G.P. she though that I was anemic. When the results came back she said I actually had high levels of iron In my blood. So Dr. Zambonni explains the whole iron depositing in brain as part of his theory on MS developing. So I think it wouldn't hurt to go and have your iron levels checked, as mine were high and both my jugular veins were clogged.
Next Pregnancy, every MS Dr. I have spoken with tells me my chances of having an attack while pregnant go down by 50% why? They don't know. However pregnant women have more blood flow than non pregnant women. So in theory if their veins are blocked and they become pregnant, the blood can flow through the entire body much easier. And the Dr.s think its hormones.
Everyday I find a new reason or two as to why CCSVI makes so much sense. So I thought I would share those two things that make sense in my head. Especially the iron. When I first watched the news story on Dr. Zambonni, and heard about the iron, I said to my husband, " that's crazy because I had such high levels of iron in my blood and do not eat very much meat at all". Food for thought
I am back for a few days before I leave again. So I was thinking about all the testing I had done and came to my own hypothesis. It may not be true and as you all know I am not a Dr. but I have an educated guess about something.
So when I was first trying to figure out what was wrong with me. I went to the G.P. she though that I was anemic. When the results came back she said I actually had high levels of iron In my blood. So Dr. Zambonni explains the whole iron depositing in brain as part of his theory on MS developing. So I think it wouldn't hurt to go and have your iron levels checked, as mine were high and both my jugular veins were clogged.
Next Pregnancy, every MS Dr. I have spoken with tells me my chances of having an attack while pregnant go down by 50% why? They don't know. However pregnant women have more blood flow than non pregnant women. So in theory if their veins are blocked and they become pregnant, the blood can flow through the entire body much easier. And the Dr.s think its hormones.
Everyday I find a new reason or two as to why CCSVI makes so much sense. So I thought I would share those two things that make sense in my head. Especially the iron. When I first watched the news story on Dr. Zambonni, and heard about the iron, I said to my husband, " that's crazy because I had such high levels of iron in my blood and do not eat very much meat at all". Food for thought
Friday, May 7, 2010
Hi Everyone
I'm off on vacation, not even bringing my laptop. I will check emails again on Sunday for new patients names and numbers. Thanks Tisa
Thursday, May 6, 2010
Hey Guys, Heading out of town tomorrow so I will not be blogging for a few days. Please keep your emails coming for the list to be treated. The longer the list gets the faster they will start. Then they will know how many people are willing to travel and have this done. Add your name and number now if you want treatment, as I will send it to Doctors tonight. If you do not feel comfortable with this send me an email and tell me and I will help you contact the Doctors directly. Thanks. You are all in my prayers, Tisa
Wednesday, May 5, 2010
Good News from Dr.s head nurse today. They are moving foward! just emailed her all the names and numbers of people that email me. So keep emailing me your info!! tisamccay@gmail.com
Other Ways to help MS without the ABC's of MS drugs
Hi Again,http://www.lowdosenaltrexone.org/ldn_and_ms.htm
Today I wanted to talk about things my Dr. and others have told me about fighting MS without drugs. I have a homeopathic or holistic Dr. who actually cured his wife from Parkinson's Disease. She was diagnosed 7 years ago, and he was a cardiovascular surgeon. He quit his job and began studying natural approaches to curing his wife. He tested heavy metals in her urine and blood. She was positive with high levels of Mercury and Lead. He used keylation to for a couple of years to get all the toxins and metals out of her body. He put her on a vitamin regiment of 30 different pills a day. Keep in mind his wife had never even so much as taken a Tylenol before this. He also changed her diet to a low fat all organic diet. Long story short after 5 years of doing everything he said, he took her back to the same Neurologist that diagnosed her, and he said, "she is in remission" She has been for 2 years now. This is a touching a very true story.
So how does this help People with MS? Well I went to see him and he tested everything in my body. Hormones, Heavy metals, fecal, urine, blood, and saliva. What did he find? Well first thing I was extremely low in vitamin D (even though I grew up in Arizona where the Sun never stops shining, as well as Southern California. Not to mention I am in the sun all the time without block) My vitamin D level was 20. So he put me on 10,000 iu of vitamin D a day. I'm sure most MSers know to take vitamin D. Next he found that I had higher than normal levels of mercury and led in my body, so he is starting me on 3 months of keylation. ( after I finish the meds I am currently on for angioplasty) He found that I was low in both estrogen and progesterone. Why does that matter? Well UCLA is currently conducting a study as to why most women go into MS remission while they are pregnant, they believe that the hormone levels play a big role in this. So I am taking bio identical hormones. I am also taking fish oil, primrose oil, multi vitamins, folic acid, and digested enzymes to help my body break it all down.
Next thing I changed was my diet. I am now on a low Saturated fat diet, which basically means no diary except organic skim milk. This was and still is a hard change for me. Cheese is and was my favorite of all foods. Red meat is also high in fat. So my meals basically consist of organic chicken or wild fish with organic fruit veggies and brown rice. I can still have pasta thank God cause I am Italian.
Now a lot of Dr.s especially the heavy pharm pushing ones will say this is all nonsense. Then why have a found 3 different books on "I cured myself from MS" if this is not true. And how is my Dr.'s wife cured of Parkinson's?
My view is if it stops me from having new attacks and helps to heal my exsisting lesions, than why not go the natural way?
Also I have a prescription for LDN or Low Dose Naltrexone. I am going to attach the info on LDN for all of you. The link is at the top of this blog.I have not started this treatment yet because of my recent CCSVI. I will have to wait a month to start LDN because it can interfere with the painkillers they gave me. Hope this helps. Although I know a lot of you know about most of this if you research MS, but those new to it may find some new ways to help themselves. Thanks for reading, Tisa
Today I wanted to talk about things my Dr. and others have told me about fighting MS without drugs. I have a homeopathic or holistic Dr. who actually cured his wife from Parkinson's Disease. She was diagnosed 7 years ago, and he was a cardiovascular surgeon. He quit his job and began studying natural approaches to curing his wife. He tested heavy metals in her urine and blood. She was positive with high levels of Mercury and Lead. He used keylation to for a couple of years to get all the toxins and metals out of her body. He put her on a vitamin regiment of 30 different pills a day. Keep in mind his wife had never even so much as taken a Tylenol before this. He also changed her diet to a low fat all organic diet. Long story short after 5 years of doing everything he said, he took her back to the same Neurologist that diagnosed her, and he said, "she is in remission" She has been for 2 years now. This is a touching a very true story.
So how does this help People with MS? Well I went to see him and he tested everything in my body. Hormones, Heavy metals, fecal, urine, blood, and saliva. What did he find? Well first thing I was extremely low in vitamin D (even though I grew up in Arizona where the Sun never stops shining, as well as Southern California. Not to mention I am in the sun all the time without block) My vitamin D level was 20. So he put me on 10,000 iu of vitamin D a day. I'm sure most MSers know to take vitamin D. Next he found that I had higher than normal levels of mercury and led in my body, so he is starting me on 3 months of keylation. ( after I finish the meds I am currently on for angioplasty) He found that I was low in both estrogen and progesterone. Why does that matter? Well UCLA is currently conducting a study as to why most women go into MS remission while they are pregnant, they believe that the hormone levels play a big role in this. So I am taking bio identical hormones. I am also taking fish oil, primrose oil, multi vitamins, folic acid, and digested enzymes to help my body break it all down.
Next thing I changed was my diet. I am now on a low Saturated fat diet, which basically means no diary except organic skim milk. This was and still is a hard change for me. Cheese is and was my favorite of all foods. Red meat is also high in fat. So my meals basically consist of organic chicken or wild fish with organic fruit veggies and brown rice. I can still have pasta thank God cause I am Italian.
Now a lot of Dr.s especially the heavy pharm pushing ones will say this is all nonsense. Then why have a found 3 different books on "I cured myself from MS" if this is not true. And how is my Dr.'s wife cured of Parkinson's?
My view is if it stops me from having new attacks and helps to heal my exsisting lesions, than why not go the natural way?
Also I have a prescription for LDN or Low Dose Naltrexone. I am going to attach the info on LDN for all of you. The link is at the top of this blog.I have not started this treatment yet because of my recent CCSVI. I will have to wait a month to start LDN because it can interfere with the painkillers they gave me. Hope this helps. Although I know a lot of you know about most of this if you research MS, but those new to it may find some new ways to help themselves. Thanks for reading, Tisa
Tuesday, May 4, 2010
P.S For those asking about how I am
As I said yesterday, my Dr. took me off Plavix, because I had rashes all over my body, sore throat, my ears kept clicking, and so on. Today after 32 hrs off Plavix no rash or any other symptoms. Now I take baby asprin. And I am feeling so much better!!! :)
Also I will be on vacation starting this Friday, so I most likely will not blog for a week starting Friday. So please if you want to be on the list email me before then. Thanks
Also I will be on vacation starting this Friday, so I most likely will not blog for a week starting Friday. So please if you want to be on the list email me before then. Thanks
CCSVI in Arizona
Hi Again Everyone.
I have received numerous emails today regarding treatment in AZ. Don't worry everyone I am staying on top of the Dr.s and their nurses. I spoke with my Dr.s today, and here is where we stand. It is going to take at least a month to get set up to treat the masses of people who not only want but need this procedure. Yesterday was the 1st of many meeting to come. What I got today was they are all on board, but they are still determining cost for patients that have to pay out of pocket ie Canadians, if they will need all out of state patients to first be seen by my local MS specialist, if out of state patients need to come 2 times once to have doppler and meet MS specialist and another for procedure, as well as getting government apprvol to treat as a vasicular problem. So as you can see it cant get done in one day of meetings, although I wish for all of you it could.
So here is what they have asked me to do (because I wanted to help) I am going to be taking a list of people who want to come to AZ for treatment. I know I have spoken with so many of you but I will need all of you to email me at tisamccay@gmail.com with your name first and last name contact info IE mobile number and email. So I am sure you are all like where does this put us? It puts you on the list. The very first list that I will be emailing to the Dr directly as soon as he is open to treat. I am make the list and going over it with my MS specialist. So even if you have already contacted my Dr. please still send me your info. They are so busy trying to make this work, that they said this is what I could do to help. So I hope that you find joy in knowing you will be on the 1st list of people to be treated once they get the go ahead. Any questions please email me or comment on this post, as my FB is getting overloaded.
As far as how I am feeling?? Pretty good except for the fact that I want all of you to get your liberation ASAP. It sucks that it takes so much time and so many different approvals. However a month or two is not that long when some of you have been waiting 20 or 30 yrs right. I hope you are all staying positive and praying with me that this will happen sooner than later.
Also when I spoke with my MS specialist who is a part of this he told me that my leg cramps are from my spinal lesion, and they have nothing to do with the liberation. He also told me I have no new lesions knock on wood. Thanks for reading, Tisa
I have received numerous emails today regarding treatment in AZ. Don't worry everyone I am staying on top of the Dr.s and their nurses. I spoke with my Dr.s today, and here is where we stand. It is going to take at least a month to get set up to treat the masses of people who not only want but need this procedure. Yesterday was the 1st of many meeting to come. What I got today was they are all on board, but they are still determining cost for patients that have to pay out of pocket ie Canadians, if they will need all out of state patients to first be seen by my local MS specialist, if out of state patients need to come 2 times once to have doppler and meet MS specialist and another for procedure, as well as getting government apprvol to treat as a vasicular problem. So as you can see it cant get done in one day of meetings, although I wish for all of you it could.
So here is what they have asked me to do (because I wanted to help) I am going to be taking a list of people who want to come to AZ for treatment. I know I have spoken with so many of you but I will need all of you to email me at tisamccay@gmail.com with your name first and last name contact info IE mobile number and email. So I am sure you are all like where does this put us? It puts you on the list. The very first list that I will be emailing to the Dr directly as soon as he is open to treat. I am make the list and going over it with my MS specialist. So even if you have already contacted my Dr. please still send me your info. They are so busy trying to make this work, that they said this is what I could do to help. So I hope that you find joy in knowing you will be on the 1st list of people to be treated once they get the go ahead. Any questions please email me or comment on this post, as my FB is getting overloaded.
As far as how I am feeling?? Pretty good except for the fact that I want all of you to get your liberation ASAP. It sucks that it takes so much time and so many different approvals. However a month or two is not that long when some of you have been waiting 20 or 30 yrs right. I hope you are all staying positive and praying with me that this will happen sooner than later.
Also when I spoke with my MS specialist who is a part of this he told me that my leg cramps are from my spinal lesion, and they have nothing to do with the liberation. He also told me I have no new lesions knock on wood. Thanks for reading, Tisa
Monday, May 3, 2010
Day 6 after ccsvi Note to people looking for ccsvi treatment, and how I was diagnosed with RRMS
Wow!! I have so many of you reading my blog! It's Amazing! Thank you!
So I went to a follow up apt. today with my Dr. I was starting to get a rash, as well as cramps on the lower part of my right leg. He determined that I was allergic to plavix. The blood thinner he gave me to keep from clotting, so he switched me to baby aspirin. So I am excited that everything is going well, except for this minor allergic reaction. On May 28Th, I will go in for a follow up MRV to see if my veins are staying open. Oddly enough my leg cramps are feeling better today.
Note to people looking for CCSVI: I spoke with my Dr. again today regarding getting you all treated. he is going to take a different approach than his fellow ccsvi Dr.s who are getting shut down. He will code it under a vascular problem not relating it to MS, although he will study how it effects MS. We will know by May 17th if the hospital is going to let him proceed. He is very excited and has been in contact with Dr. Dake almost everyday. He (my Dr.) is trying to find a way to do this without getting shut down. So this is Great News for all of you. Lets keep hoping and praying that the hospital lets him do this. First meeting is today at 5pm keep your fingers crossed :)
Some of you who read my blog, just because you are my friends, love you for that. Don't really know a lot about MS. I mean you can google it, but you don't know how I came to find out I had MS. So here is my story. Back in Dec 2009 I started having dizzy spells. They were mild at first, just felt light headed like I needed to sit down. Then the headaches came. Terrible ones that would not go away for days. The first person I saw was my G.P. she said she thought I was anemic. Nope. Diabetic. Nope. And finally Dehydrated. Tested me for all of the above and nothing. Then my dizzy spells became worse. To the point where the entire room would spin for 30 seconds. One day I was driving home and I had a spinning attack and almost crashed my car because I could not see. My loving adoring most perfect husband took me to the ER. They told me I had vertigo. Which means the balance in your inner ear is off. They told me to see an Ear Nose and throat Dr. so I did. Lots of balance tests later No vertigo. So what was wrong with me? I started to feel like I was going crazy and it was all in my head. The dizziness finally went away after 2 long weeks, and next my eyes. I couldn't focus on anything, everything was blurry and it felt like my brain could not process what I saw. Off to the eye Dr. No honey you have 20/20 vision. Okay I am crazy. Then 2 weeks later my eyes are back and my feet are completely numb. Like they are asleep and nothing wakes them up. After 3 days of this again my husband takes me to the ER. They said and I quote, "If you are not dying don't come here" make an apt. with a neurologist. So finally I saw a neurologist in AZ. But not just any a Nero surgeon. He took an MRI and had to magnify it 3x to see that I had two lesions on my brain. When he realized I most likely had MS he referred me to a general neurologist and he sent me to have a L.P. or spinal tap. No fun No fun at all. The spinal tap caused such terrible headaches because the fluid was leaking that hey had to go in and do a blood patch to stop the fluid from leaking. Ouch! Just writing about it again hurts me. Long story short in Feb 2010 I was diagnosed with Relapsing Remitting Multiple Sclerosis. I have not taken any MS drugs because of there harmful side effects. I am taking vitamins and hoping CCSVI prevents me from having another attack. But like I said before we wont know for 6 months to a year. Thanks for reading.
So I went to a follow up apt. today with my Dr. I was starting to get a rash, as well as cramps on the lower part of my right leg. He determined that I was allergic to plavix. The blood thinner he gave me to keep from clotting, so he switched me to baby aspirin. So I am excited that everything is going well, except for this minor allergic reaction. On May 28Th, I will go in for a follow up MRV to see if my veins are staying open. Oddly enough my leg cramps are feeling better today.
Note to people looking for CCSVI: I spoke with my Dr. again today regarding getting you all treated. he is going to take a different approach than his fellow ccsvi Dr.s who are getting shut down. He will code it under a vascular problem not relating it to MS, although he will study how it effects MS. We will know by May 17th if the hospital is going to let him proceed. He is very excited and has been in contact with Dr. Dake almost everyday. He (my Dr.) is trying to find a way to do this without getting shut down. So this is Great News for all of you. Lets keep hoping and praying that the hospital lets him do this. First meeting is today at 5pm keep your fingers crossed :)
Some of you who read my blog, just because you are my friends, love you for that. Don't really know a lot about MS. I mean you can google it, but you don't know how I came to find out I had MS. So here is my story. Back in Dec 2009 I started having dizzy spells. They were mild at first, just felt light headed like I needed to sit down. Then the headaches came. Terrible ones that would not go away for days. The first person I saw was my G.P. she said she thought I was anemic. Nope. Diabetic. Nope. And finally Dehydrated. Tested me for all of the above and nothing. Then my dizzy spells became worse. To the point where the entire room would spin for 30 seconds. One day I was driving home and I had a spinning attack and almost crashed my car because I could not see. My loving adoring most perfect husband took me to the ER. They told me I had vertigo. Which means the balance in your inner ear is off. They told me to see an Ear Nose and throat Dr. so I did. Lots of balance tests later No vertigo. So what was wrong with me? I started to feel like I was going crazy and it was all in my head. The dizziness finally went away after 2 long weeks, and next my eyes. I couldn't focus on anything, everything was blurry and it felt like my brain could not process what I saw. Off to the eye Dr. No honey you have 20/20 vision. Okay I am crazy. Then 2 weeks later my eyes are back and my feet are completely numb. Like they are asleep and nothing wakes them up. After 3 days of this again my husband takes me to the ER. They said and I quote, "If you are not dying don't come here" make an apt. with a neurologist. So finally I saw a neurologist in AZ. But not just any a Nero surgeon. He took an MRI and had to magnify it 3x to see that I had two lesions on my brain. When he realized I most likely had MS he referred me to a general neurologist and he sent me to have a L.P. or spinal tap. No fun No fun at all. The spinal tap caused such terrible headaches because the fluid was leaking that hey had to go in and do a blood patch to stop the fluid from leaking. Ouch! Just writing about it again hurts me. Long story short in Feb 2010 I was diagnosed with Relapsing Remitting Multiple Sclerosis. I have not taken any MS drugs because of there harmful side effects. I am taking vitamins and hoping CCSVI prevents me from having another attack. But like I said before we wont know for 6 months to a year. Thanks for reading.
Sunday, May 2, 2010
Day 5 post CCSVI
Hello Again,
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.
After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.
I just wanted to write about how lucky I was to receive CCSVI in the US.
How it happened.... My brother in law (PHILL who may have saved me) emailed me info about CCSVI. I had never even heard about it. I immediately googled it and found even more studies and research on it. I got so excited. I forwarded the emails to my MS Dr.s, they were advising against as I knew they would. I talked to my mom, who then said," your Dad has had 3 angioplasties for his heart, (because of this she went on the board at the heart hospital and raised a ton of money for them. She also had become great friends with the chief of cardio surgery) she emailed him my findings on ccsvi, and said Tisa, "If anyone will do it, he will. He does angioplasties everyday. He became very interested. He started making calls to all the Dr.s he could find that were doing the treatment. Turns out he went to school with Dr. Zamboni's best friend. He also spoke with Dr. Dake at Standford. Then he said to my mom, "bring her in, the least I can do is scan her veins for this." As I live in CA and my mother in AZ I drove in the very next weekend. As I said in my last blog it was clear as day that both jugular veins were clogged. He had never seen anything like it before as he usually deals with clogged arteries near the heart not the jugular veins. However it is the exact same procedure minus stints. He began to call in fellow Dr.s. They even made me come back the next day and do another ultra sound, because they wanted to make sure I wasn't just tilting my head the wrong way. But then again clear as day, so they sent me immediately to am MRV with contrast, saw it again and then I went straight into the O.R. Where I had about 7 Dr.s in the room and another 8 or 9 observing in the theatre.
After it was all said and done, I am not going to lie I have had some pain. Nothing that has kept me bed ridden but my leg is super sore as well as my neck. I realize that I was so lucky to have a DR friend of the family to do this for me. But I must say it makes me feel terrible for all you who are worse off than I. And can't find you treatment. So I have dedicated, so much time and energy with this Dr as well as an MS specialist. I have got them all on board to start treating people. They go into the first meeting with their lawyers on Monday to see if they can make it happen some how some way. I will not stop until all those who want to be liberated have the option to. I am keeping in close contact with both the MS specialist and Cardio to find out the progress. If they can get this done I will soon post their info on my blog as well as facebook to help as many as possible. If they can not find approval, I plan on going to the media. I will stop at nothing to help you all.
Saturday, May 1, 2010
Why we 're fighting...
This is a true story of someone getting turned away for CCSVI. It broke my heart. If people are allowed to have elective surgery like breast augmentation, they should also have the ability to get their veins opened, don't you think?
Received CCSVI or Jugular Angioplasty on April 27, 2010 as treatment for MS
Hello Everyone, This is my first blog. I am here to write about my experience with CCSVI for MS. I had both of my Jugular Veins scanned via ultra sound on April 26Th. It was clear to anyone's eye that they were both blocked. Next the Dr. sent me to an MRV scan which is like a MRI but of the veins. This scan showed the same thing 2 blocked jugular veins. The next day they took me in for an angioplasty of the jugular veins. I was awake for the procedure with intravenous sedatives. The procedure was a little un comfortable. When they used the balloon to open my veins I could feel the air up each side of my face which caused a terrible headache like pain for about 5 mins on each side. The procedure took two hours. I was told that the blood pressure through the jugular veins should be between 40-50. Mine was 260 on one side and 300 on the other. Due to the blockage my blood had to push much harder to get to the brain or to drain from the brain. My amazing Dr. opened my veins back up to a 40. It has been 4 days since my liberation and I am still a little sore in my neck as well as my leg/groin area where the entered with the catheter.
Here is a little bit about my MS. I was diagnosed with RRMS in Jan of this year. So I have only had one attack and that attack happened in Jan. i only have 3 lesions two on the brain one on the spine all very small. I opp ed out of taking any MS drugs. My Dr. said because of how new my MS is it will take 6 months to a year to tell if the treatment has helped me. So I plan to blog on my progress and most of all help others to find there liberation. Thanks for reading Tisa
Here is a little bit about my MS. I was diagnosed with RRMS in Jan of this year. So I have only had one attack and that attack happened in Jan. i only have 3 lesions two on the brain one on the spine all very small. I opp ed out of taking any MS drugs. My Dr. said because of how new my MS is it will take 6 months to a year to tell if the treatment has helped me. So I plan to blog on my progress and most of all help others to find there liberation. Thanks for reading Tisa
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