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.
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