Wow, I can’t believe it has been 8 weeks since I was in Poland getting angioplasty in my blocked jugular veins. I am so fortunate and grateful that I was able to get this procedure. Although I felt that I had a setback a few weeks ago, I am now feeling energetic and good again. My balance, energy and endurance is noticeably better and I do not experience the total feeling of exhaustion when performing tasks that I used to feel prior to going to Poland.
Being diagnosed secondary progressive left me with nothing to look forward, as there is no treatment for this stage of the disease. I now feel like my body is in a healing mode and that the blood in my brain is now flowing properly and with time will dispose of the excess iron buildup
Since coming back from Poland I have really tried to stick with a heart healthy diet, low in saturated fat, processed food and eating more fruits and vegetables as this is so important in keeping the blood flowing. Exercise is another thing that is good for my circulatory system and I have slowly started incorporating easy exercises and stretching in my daily routine.
I strongly believe that I will continue to improve and look forward to more positive posts in the weeks ahead.
Friday, August 27, 2010
Thursday, August 26, 2010
Why I believe in MS and the Vascular Theory?
I was asked this question today and decided I would answer it in my blog.
I guess I’m just tired of the autoimmune theory that for some unknown reason, our system goes haywire and starts attacking our own cells. It was such good news to hear that a vascular surgeon (Dr. Zamboni) doing research, as his wife has MS, found vascular abnormalities in almost 100% of MS patients he studied. I know that his theories have to be proven and that studies have to be done before CCSVI can be accepted as scientific fact but there is a lot of documentation dating as far back as pre-1990 talking about iron deposition and vascular damage in people with MS. When I was in Poland, the 23 MS people who were there, all had blockages and there are now thousands of people getting the procedure with the same results. Many people have reported significant improvement of their MS-related symptoms following venous angioplasty even those who were progressive got some type of benefit. Here in Canada, Dr Sandy Macdonald found that 90% of the almost 300 MS patients he has tested in Barrie Ontario had CCSVI.
Another important aspect is that it has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process. I read that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily.
Researchers at Georgetown University have concluded and published comprehensive scientific papers that show that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.
Finally I found a link between CCSVI and alternative treatments and supplements and why some MS patients found symptom relief:
Prokarin - combines histamine and caffeine. Both are known vasodilators (open the blood vessels).
LDN - low dose naltrexone. One of the effects of LDN is angiognesis, the creation of new blood vessels.
BEE STINGS - increases histamine in the system, which creates vasodilation (opening of blood vessels).
EGCG - green tea extract- chelates iron from brain tissue and is an anti-oxidant.
HBO - hyperbaric oxygen treatments- increases oxygen delivery to the brain.
I guess I’m just tired of the autoimmune theory that for some unknown reason, our system goes haywire and starts attacking our own cells. It was such good news to hear that a vascular surgeon (Dr. Zamboni) doing research, as his wife has MS, found vascular abnormalities in almost 100% of MS patients he studied. I know that his theories have to be proven and that studies have to be done before CCSVI can be accepted as scientific fact but there is a lot of documentation dating as far back as pre-1990 talking about iron deposition and vascular damage in people with MS. When I was in Poland, the 23 MS people who were there, all had blockages and there are now thousands of people getting the procedure with the same results. Many people have reported significant improvement of their MS-related symptoms following venous angioplasty even those who were progressive got some type of benefit. Here in Canada, Dr Sandy Macdonald found that 90% of the almost 300 MS patients he has tested in Barrie Ontario had CCSVI.
Another important aspect is that it has always been a problem to explain why the autoimmune cells were able to cross the BBB so easily in the MS disease process. I read that the biological mechanisms associated with CCSVI degrade the integrity of the BBB and allow the autoaggressive immune cells to cross the BBB much more easily.
Researchers at Georgetown University have concluded and published comprehensive scientific papers that show that the venous malformations that drive CCSVI are almost exclusively congenital, that is, they were there at birth. This is critical because it shows that CCSVI precedes the MS disease process and is not an effect of it.
Finally I found a link between CCSVI and alternative treatments and supplements and why some MS patients found symptom relief:
Prokarin - combines histamine and caffeine. Both are known vasodilators (open the blood vessels).
LDN - low dose naltrexone. One of the effects of LDN is angiognesis, the creation of new blood vessels.
BEE STINGS - increases histamine in the system, which creates vasodilation (opening of blood vessels).
EGCG - green tea extract- chelates iron from brain tissue and is an anti-oxidant.
HBO - hyperbaric oxygen treatments- increases oxygen delivery to the brain.
Getting the Procedure Done in Albany, New York
A few people have asked me if I saw the lady called Maria who was on CTV News last week. Here is the link to the story - (http://www.youtube.com/watch?v=s_jydBqNh7Y). She mentions that she got the liberation treatment in the US for $5,000. I had already made my plans for Poland when I found out about Dr. Siskin in Albany, New York back in May but I would definitely go there this time around if I find out my vein has blocked back up (restenosed) which happened according to Dr. Zamboni in approx. 50% of the people he did the procedure on.
I believe that the lady on CTV might have gotten the procedure done by Dr. Siskin in Albany, New York. From forums that I have read, many Canadians are going to Albany, New York. Don't quote me on this but I read somewhere that they perform the procedure for $3,000 plus $2,000 per stent if done at the clinic and prices are more if done at the hospital. There is a waiting list of 3-4 months. If you want more information here is the link to this clinic -
http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI.asp
There was a CCSVI Symposium a few weeks ago in New York where the doctors performing the procedure spoke. Dr. Siskin was there and if you want to hear him talk about his procedures that he has performed, here are the links:
Part 1
http://www.youtube.com/watch?v=ZL5DmnXw9BQ&feature=PlayList&p=F8484225816B8685&index=7
Part 2
http://www.youtube.com/watch?v=riX3g8CN2Gs&feature=PlayList&p=F8484225816B8685&index=3
If you feel like doing some reading, there is also a link on the internet called This is MS where people talk about their experience of getting the procedure done in Albany, NY: http://www.thisisms.com/ftopic-11660-days0-orderasc-0.html
There is another doctor that does the procedure in Albany NY and his name is Dr. Mehta. I read that he only does unilateral venoplasty -- he only does one jugular at a time for safety reasons but he will two in the same week. Dr. Manish Mehta's phone number: 518-262-5640 and his website is: http://www.albanyvascular.com/index.htm To read what other people have said about him, go to this link - - http://www.thisisms.com/ftopic-9998-days0-orderasc-0.html
I believe that the lady on CTV might have gotten the procedure done by Dr. Siskin in Albany, New York. From forums that I have read, many Canadians are going to Albany, New York. Don't quote me on this but I read somewhere that they perform the procedure for $3,000 plus $2,000 per stent if done at the clinic and prices are more if done at the hospital. There is a waiting list of 3-4 months. If you want more information here is the link to this clinic -
http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI.asp
There was a CCSVI Symposium a few weeks ago in New York where the doctors performing the procedure spoke. Dr. Siskin was there and if you want to hear him talk about his procedures that he has performed, here are the links:
Part 1
http://www.youtube.com/watch?v=ZL5DmnXw9BQ&feature=PlayList&p=F8484225816B8685&index=7
Part 2
http://www.youtube.com/watch?v=riX3g8CN2Gs&feature=PlayList&p=F8484225816B8685&index=3
If you feel like doing some reading, there is also a link on the internet called This is MS where people talk about their experience of getting the procedure done in Albany, NY: http://www.thisisms.com/ftopic-11660-days0-orderasc-0.html
There is another doctor that does the procedure in Albany NY and his name is Dr. Mehta. I read that he only does unilateral venoplasty -- he only does one jugular at a time for safety reasons but he will two in the same week. Dr. Manish Mehta's phone number: 518-262-5640 and his website is: http://www.albanyvascular.com/index.htm To read what other people have said about him, go to this link - - http://www.thisisms.com/ftopic-9998-days0-orderasc-0.html
Friday, August 20, 2010
Friday, August 20th - 7 weeks post-procedure
Yesterday, I went to pick up my orthotics and hope this helps my arch that completely collapses and turns in when I walk. As for the arthritis and swelling in this foot, it was suggested that I massage it with Arnica cream 3-4 times a day. I now have to slowly get use to my new orthotics by wearing them every day but to start slowly and increase the time in them every day.
I can still walk in the house with just my cane but I don't feel as sturdy as I did from two weeks ago. Although I walked up the stairs from the basement last night, it was a lot more strenuous than a few weeks ago.
I sent in my procedure CD to Dr. Sandy McDonald who I will be seeing for a follow-up doppler ultrasound in Barrie, Ontario on Sept. 24th. I worry about re-stenosis!
Someone on the MS forum mentioned the following analogy which makes a lot of sense to me in regards to our collapsed veins and one of the Doctors who does the procedure calls this "elastic recoil":
Imagine a garden hose that has been lying in the sun with a huge, heavy rock on it - say from 30-60 years. Suddenly someone notices and removes the rock. Where the rock was the hose is squished flat & no water gets through. Now you can manipulate this hose, run a stick thru it, etc. and get it to re-inflate to it's normal size. But because the structure of the hose had become so accustomed to being flattened where the rock was, gradually it may recollapse. Maybe it will, maybe it won't. If it does, you have to decide is the hose strong enough to endure another manipulation?
I follow the people who were with me in Poland and her are some of the comments that they have mentioned:
- Some small positive effects to symptoms but the main gait/spasticity/drop foot hasn't seen much improvement. Varies all the time which I've become accustomed to over the years so definitely not worse.
- I'm not doing well either. I have alot of fluctuations of symptoms and very low energy, still fatigued. My neuralgia seems worse and other symptoms the same.
- My wife has also had a few worse days. She had her walker parked until this morning. Saturday when we went for our walk she was having trouble with just a cane. With the walker today it went well.
- I have no changes to report. Nothing really changed for me after Poland, except maybe a little clearer head and more frequent symptom fluctuation. I am starting to think about a round two angioplasty. I'll be a little more aggressive this time (as I declined a stent in Poland).
- I am wondering if they will put in a second stent? I would probably get a second one if I could. My energy seems to be slipping away which saddens me. I do not want to go back to where I was before Poland. However my body seems stronger and my walking has remained good.
- In my case (SPMS for 3 years), I saw some improvement in vitality, walking, libido, erection and warn hands and feet for about 10 days. Except warmer hands and feet, all is gone now. Why, I really don't know. I had no stenosis but faulty valves. Was it a placebo effect, or will the effect of the treatment amount to nothing more then stopping the disease? Or are the valves screwed up again, I just don't know. Only time will tell and I guess no one knows! I intend to go back to Tyche for follow up in October.
- You mentioned warm hands and feet, something I had wished for but alas that never came to be. Still there are little pluses I hope will stay. A return to Poland is not in my plans, hope to find a place closer to home for any further tests. If this will stop progression that would be great.
- I experienced some positive symptom relief and then lost some of the improvement. But right now I'm doing better than before the procedure. And I feel that I know what works to improve my health if I need to get some kind of treatment in the future.
I can still walk in the house with just my cane but I don't feel as sturdy as I did from two weeks ago. Although I walked up the stairs from the basement last night, it was a lot more strenuous than a few weeks ago.
I sent in my procedure CD to Dr. Sandy McDonald who I will be seeing for a follow-up doppler ultrasound in Barrie, Ontario on Sept. 24th. I worry about re-stenosis!
Someone on the MS forum mentioned the following analogy which makes a lot of sense to me in regards to our collapsed veins and one of the Doctors who does the procedure calls this "elastic recoil":
Imagine a garden hose that has been lying in the sun with a huge, heavy rock on it - say from 30-60 years. Suddenly someone notices and removes the rock. Where the rock was the hose is squished flat & no water gets through. Now you can manipulate this hose, run a stick thru it, etc. and get it to re-inflate to it's normal size. But because the structure of the hose had become so accustomed to being flattened where the rock was, gradually it may recollapse. Maybe it will, maybe it won't. If it does, you have to decide is the hose strong enough to endure another manipulation?
I follow the people who were with me in Poland and her are some of the comments that they have mentioned:
- Some small positive effects to symptoms but the main gait/spasticity/drop foot hasn't seen much improvement. Varies all the time which I've become accustomed to over the years so definitely not worse.
- I'm not doing well either. I have alot of fluctuations of symptoms and very low energy, still fatigued. My neuralgia seems worse and other symptoms the same.
- My wife has also had a few worse days. She had her walker parked until this morning. Saturday when we went for our walk she was having trouble with just a cane. With the walker today it went well.
- I have no changes to report. Nothing really changed for me after Poland, except maybe a little clearer head and more frequent symptom fluctuation. I am starting to think about a round two angioplasty. I'll be a little more aggressive this time (as I declined a stent in Poland).
- I am wondering if they will put in a second stent? I would probably get a second one if I could. My energy seems to be slipping away which saddens me. I do not want to go back to where I was before Poland. However my body seems stronger and my walking has remained good.
- In my case (SPMS for 3 years), I saw some improvement in vitality, walking, libido, erection and warn hands and feet for about 10 days. Except warmer hands and feet, all is gone now. Why, I really don't know. I had no stenosis but faulty valves. Was it a placebo effect, or will the effect of the treatment amount to nothing more then stopping the disease? Or are the valves screwed up again, I just don't know. Only time will tell and I guess no one knows! I intend to go back to Tyche for follow up in October.
- You mentioned warm hands and feet, something I had wished for but alas that never came to be. Still there are little pluses I hope will stay. A return to Poland is not in my plans, hope to find a place closer to home for any further tests. If this will stop progression that would be great.
- I experienced some positive symptom relief and then lost some of the improvement. But right now I'm doing better than before the procedure. And I feel that I know what works to improve my health if I need to get some kind of treatment in the future.
Sunday, August 15, 2010
Doing Better - Sunday, August 15
Just to let everyone know that I'm doing better. My energy level is back and I have less stiffness. My neck is better. I guess those 100 sit-ups I did on the ab rocket were not done properly! I will definitely pace myself this time around and only do weight-bearing exercises. I do have an in-ground heated pool which I was in yesterday. I know this is the best exercise!
I'm walking better but I have a lot of pain in my left foot. I went to see a foot specialist who recommended some custom moulded foot orthotics and a good supporting shoe. Although my foot x-ray looks great except for a bit of arthritis, my foot arch totally collapses in when I stand.
I'm walking better but I have a lot of pain in my left foot. I went to see a foot specialist who recommended some custom moulded foot orthotics and a good supporting shoe. Although my foot x-ray looks great except for a bit of arthritis, my foot arch totally collapses in when I stand.
Sunday, August 8, 2010
Not a Good Day Yesterday! - August 8th
Yesterday I was supposed to go to a BBQ Party at my friend's place in Ottawa. I woke up yesterday morning feeling tired and achy. Tired, because I did not have a good sleep as my left foot had shooting pains in it during the night and achy with a sore back because I think I overdid it with 2 days of exercise.
I have been having problems with soreness and swelling on my left foot for over a year. I had an x-ray taken and saw a specialist. He says that I need orthotics because of the way I walk and I have very flat feet. He also says that my x-ray shows some arthritis near my big toe. My foot does crack sometimes when I walk! Not sure what that is about, maybe it is so used to being dragged that it cracks when I do try to walk on it.
Well I had every good intention of going to the party and was hoping that my body would be more cooperative as the day went on. My husband was working on the shower in the basement and I was going to use him as an excuse for not going to Ottawa but the truth is I did not want to show up at the party struggling. Since I have not seen many of these friends that were going to be at this party and they contributed financially to my procedure, I did not want to let them down. I wanted to walk in with my cane without using my husband's arm for support.
I guess I should be content for the improvements so far and stop worrying about everything else. I know this is still an unproven treatment. But based on many positive testimonials of people who have had the procedure, I was hoping for better results so far. I know it's still early and I have not been able to walk unaided for quite some time. I have to remember that I originally hoped to simply halt the progression and that any other benefits would be a bonus.
I made an appointment for Tuesday to see a podiatrist. Maybe he will be able to help me with my foot. I will let you know how it goes.
I have been having problems with soreness and swelling on my left foot for over a year. I had an x-ray taken and saw a specialist. He says that I need orthotics because of the way I walk and I have very flat feet. He also says that my x-ray shows some arthritis near my big toe. My foot does crack sometimes when I walk! Not sure what that is about, maybe it is so used to being dragged that it cracks when I do try to walk on it.
Well I had every good intention of going to the party and was hoping that my body would be more cooperative as the day went on. My husband was working on the shower in the basement and I was going to use him as an excuse for not going to Ottawa but the truth is I did not want to show up at the party struggling. Since I have not seen many of these friends that were going to be at this party and they contributed financially to my procedure, I did not want to let them down. I wanted to walk in with my cane without using my husband's arm for support.
I guess I should be content for the improvements so far and stop worrying about everything else. I know this is still an unproven treatment. But based on many positive testimonials of people who have had the procedure, I was hoping for better results so far. I know it's still early and I have not been able to walk unaided for quite some time. I have to remember that I originally hoped to simply halt the progression and that any other benefits would be a bonus.
I made an appointment for Tuesday to see a podiatrist. Maybe he will be able to help me with my foot. I will let you know how it goes.
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