Well, it's been one week today since I was treated in Brooklyn, NY. I received today the report of my procedure. It was interesting to read as this was all discussed to me during the course of the procedure and again at the end while I was still on the table but still in a state of &#?*#!
I'm feeling better and stronger every day but my neck area on the left side is still very sore. I suspect this area is taking longer to recover as the left side demonstrated multiple areas of abnormal valves and hyperplastic areas of these veins. According to the report it required multiple dilations at up to 20 atmospheres of the 18-mm angioplasty balloon before the stenosis was ultimately overcome. I also had narrowing higher up where a 14-mm balloon was placed in that region and inflated to 20 atmospheres. While doing the left side there was a loud pop at some point that could be heard by both doctors. While I was worried, the doctors seemed pleased upon hearing this loud sound, go figure!
While doing the azygous area, the doctor had me lift both my arms over my head during this procedure. This was something new that was not performed in Poland.
I will be attaching my full report if anyone is interested in reading it. It is 4 pages compared to the 10 lines on my Poland report which I could not understand anyways, hi hi.
Friday, December 10, 2010
Saturday, December 4, 2010
Second Liberation Procedure - December 3rd, 2010
It's Saturday morning and I'm sitting in my hotel room at Hotel Le Blue in Brooklyn, NY, the day after my liberation procedure by Dr. Sclafani and another doctor who he was training to do the CCSVI procedure.
I have not written in my blog since October because I no longer had any improvements. I put my procedure on YouTube and sent the link to Dr. Sclafani and this is what he had to say about it:
dear Sue
i reviewed your youtube video. You have a very pronounced stenosis of the valves of the azygos vein that needs angioplasty. the valves are not opening properly. it is very well seen on the video.
Also the right jugular angioplasty seems undersized. Would like a second look at the left jugular too
WELL that is how I ended up here getting a second procedure.
On Thursday, I had an doppler ultrasound at King's County Hospital where the technologist saw abnormalities, reflux and valve prolems with my left and right jugulars. I also met two people who were scheduled for the procedure on Saturday. There was a lady from Toronto and a man from Long Island, NY.
On Friday, I had my procedure at the American Access Care in Brooklyn. I was in the procedure room for close to 3 hours where I had the following done: The wire and catheter was inserted in my left groan area. The first thing he checked for was May-Thurner Syndrome and he confirmed that I did NOT have May-Thurners. Then he checked my right jugular which had restenosed (blocked back up) and they angioplastied it using a much bigger balloon than the one in Poland which was only a 10mm. I think it was an 18mm but I have to wait for the report to confirm this. He then proceeded to the left side where I had two places angioplastied. One in the area of the collar bone and the other way up by the ear. In Poland they had told me that the flow was a bit reduced but it was not worth the risk to angioplasty. Dr. Sclafani did mention that my vein on this side was much more narrower than the right side. They then proceeded to my azygos where he proceeded to do an angioplasty there. Here Poland saw no problem with this area!
I was in excellent hands yesterday. The staff and the care I received was top-notch. I should mention that I got sick after the procedure, which they suspect was a result of the medication I received during the procedure. I also have a history of not tolerating pain medication very well, so I could not enjoy the wonderful sandwich they had prepared for me. A nurse is on call 24-hours and the doctor is available at any time. I actually spoke with him this morning to report nausea and weakness from not being able to eat and drink. But I'm happy to report that this has since past and I feeling much better.
I will keep you updated as to my progress!
I have not written in my blog since October because I no longer had any improvements. I put my procedure on YouTube and sent the link to Dr. Sclafani and this is what he had to say about it:
dear Sue
i reviewed your youtube video. You have a very pronounced stenosis of the valves of the azygos vein that needs angioplasty. the valves are not opening properly. it is very well seen on the video.
Also the right jugular angioplasty seems undersized. Would like a second look at the left jugular too
WELL that is how I ended up here getting a second procedure.
On Thursday, I had an doppler ultrasound at King's County Hospital where the technologist saw abnormalities, reflux and valve prolems with my left and right jugulars. I also met two people who were scheduled for the procedure on Saturday. There was a lady from Toronto and a man from Long Island, NY.
On Friday, I had my procedure at the American Access Care in Brooklyn. I was in the procedure room for close to 3 hours where I had the following done: The wire and catheter was inserted in my left groan area. The first thing he checked for was May-Thurner Syndrome and he confirmed that I did NOT have May-Thurners. Then he checked my right jugular which had restenosed (blocked back up) and they angioplastied it using a much bigger balloon than the one in Poland which was only a 10mm. I think it was an 18mm but I have to wait for the report to confirm this. He then proceeded to the left side where I had two places angioplastied. One in the area of the collar bone and the other way up by the ear. In Poland they had told me that the flow was a bit reduced but it was not worth the risk to angioplasty. Dr. Sclafani did mention that my vein on this side was much more narrower than the right side. They then proceeded to my azygos where he proceeded to do an angioplasty there. Here Poland saw no problem with this area!
I was in excellent hands yesterday. The staff and the care I received was top-notch. I should mention that I got sick after the procedure, which they suspect was a result of the medication I received during the procedure. I also have a history of not tolerating pain medication very well, so I could not enjoy the wonderful sandwich they had prepared for me. A nurse is on call 24-hours and the doctor is available at any time. I actually spoke with him this morning to report nausea and weakness from not being able to eat and drink. But I'm happy to report that this has since past and I feeling much better.
I will keep you updated as to my progress!
Tuesday, October 26, 2010
ALMOST 17 WEEKS (4 MONTHS) POST PROCEDURE
Well you know how I said earlier that I should not get discouraged because they said it could just take time for my body to heal or just get used to this new blood flow..... well I am DISCOURAGED! This week has not been a good week. My foot is still very sore even though I have been wearing my new orthotics and my back and neck are killing me. I have been fighting a cold for the last few weeks but this week my cold is gone and I am still feeling crappy.
My mobility is getting worse all the time. I still have not used my walker but my balance is definitely getting worse. I took a tumble last week but it was first thing in the morning and I was still have asleep.
Having put my procedure on youtube, I decided to send the link to a few doctors in the states who perform this treatment to get some feedback. Two doctors replied. One said that it sounds like restenosis and I would probably benefit from a repeat procedure. The other said that he only watched first few seconds. He said: Your azygous is clearly abnormal. Did you notice how the contrast in the lower part just sat there? I will look at rest later but thought you should know that azygous is abnormal.
I find it hard to believe that I would have blocked back up since my doppler in Barrie, Ont. showed everything as normal. Did Poland miss my azygos area? I heard that clearing up blockages in the azy area helps with mobility. Do I need a second procedure?
My mobility is getting worse all the time. I still have not used my walker but my balance is definitely getting worse. I took a tumble last week but it was first thing in the morning and I was still have asleep.
Having put my procedure on youtube, I decided to send the link to a few doctors in the states who perform this treatment to get some feedback. Two doctors replied. One said that it sounds like restenosis and I would probably benefit from a repeat procedure. The other said that he only watched first few seconds. He said: Your azygous is clearly abnormal. Did you notice how the contrast in the lower part just sat there? I will look at rest later but thought you should know that azygous is abnormal.
I find it hard to believe that I would have blocked back up since my doppler in Barrie, Ont. showed everything as normal. Did Poland miss my azygos area? I heard that clearing up blockages in the azy area helps with mobility. Do I need a second procedure?
Tuesday, October 12, 2010
My Procedure Video is on YouTube - Oct. 12, 2010
I managed to put my procedure video on YouTube so you can see the video instead of pictures like I had posted earlier. Here is the link for that: http://www.youtube.com/watch?v=ODdfR3G4Mf8
The first part of the procedure is with my Azygos area where I suspect there might be a constriction. This is something that does not show up in a doppler ultrasound like I had in Barrie, Ontario, a few weeks ago. The lady mentioned above had blockages there when she went for a second procedure.
I was also interviewed for the the Local Newspaper again and this time they have included a picture of me. Here is the link for that: http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2777260
The first part of the procedure is with my Azygos area where I suspect there might be a constriction. This is something that does not show up in a doppler ultrasound like I had in Barrie, Ontario, a few weeks ago. The lady mentioned above had blockages there when she went for a second procedure.
I was also interviewed for the the Local Newspaper again and this time they have included a picture of me. Here is the link for that: http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2777260
Tuesday, September 28, 2010
My Follow-up Doppler Ultrasound - Tuesday, Sept.28
Well on Friday, I went for a 3-month follow-up doppler ultrasound in Barrie, Ontario. The technician there said she was trained in Italy by Dr. Zamboni.
I have had 3 of those scans so far and she is the first to scan so far up behind the ears, but she only did this on one side?? She scanned both laying down and sitting up. She mentioned that everything was normal.
I told her that I think that I blocked back up. She said that it just takes time and be patient. She used the analogy that it is like someone with strep throat. If someone goes and gets antibiotics as soon as symptoms appear, it will heal a lot faster. If someone waits to long then the healing process will take a lot longer. She said that it even took Dr. Zamboni's wife many, many months to start feeling all the benefits.
When I asked her why I got so many benefits the first five weeks and lost some of them, I think she said that having the angioplasty was a shock to the system. Not sure but the body is like on a high from the new increased flow. I asked her if she thought that finishing the drug Plavix had anything to do with it since I was on that for 5 weeks, she said no. It was probably just coincidence but I should continue taking baby aspirin! She said it was important to keep moving!
While I was in the waiting room I met a lady who had the liberation procedure done by the same doctors in Poland that I had. She was from Newfoundland and was in Barrie for her 1-month follow-up. She met the two couples that went there from my home town. Talk about a small world!!!
One of these couples was in the Cornwall Newspaper last week and I was also mentioned as the first person with MS going to Poland from Cornwall. In the article they mention that I can now walk with just my cane which is true for walking around inside the house, but I still don't feel very confident yet walking outdoors. I still prefer walking holding on to someone's arm or using my scooter or walker. Here is a link to the article http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2765581
I have had 3 of those scans so far and she is the first to scan so far up behind the ears, but she only did this on one side?? She scanned both laying down and sitting up. She mentioned that everything was normal.
I told her that I think that I blocked back up. She said that it just takes time and be patient. She used the analogy that it is like someone with strep throat. If someone goes and gets antibiotics as soon as symptoms appear, it will heal a lot faster. If someone waits to long then the healing process will take a lot longer. She said that it even took Dr. Zamboni's wife many, many months to start feeling all the benefits.
When I asked her why I got so many benefits the first five weeks and lost some of them, I think she said that having the angioplasty was a shock to the system. Not sure but the body is like on a high from the new increased flow. I asked her if she thought that finishing the drug Plavix had anything to do with it since I was on that for 5 weeks, she said no. It was probably just coincidence but I should continue taking baby aspirin! She said it was important to keep moving!
While I was in the waiting room I met a lady who had the liberation procedure done by the same doctors in Poland that I had. She was from Newfoundland and was in Barrie for her 1-month follow-up. She met the two couples that went there from my home town. Talk about a small world!!!
One of these couples was in the Cornwall Newspaper last week and I was also mentioned as the first person with MS going to Poland from Cornwall. In the article they mention that I can now walk with just my cane which is true for walking around inside the house, but I still don't feel very confident yet walking outdoors. I still prefer walking holding on to someone's arm or using my scooter or walker. Here is a link to the article http://www.standard-freeholder.com/ArticleDisplay.aspx?e=2765581
Thursday, September 16, 2010
Sept. 16 - 11 weeks post procedure
I have not updated my blog for 3 weeks now as I don't have any changes to report. Last week I was having a lot of back pain but this week it is much better. Next Friday I have a follow-up appointment for a doppler ultrasound here in Canada at Barrie Vascular Imaging in Barrie, Ontario. The couple I went to Poland with had their appointment last week and they found that both his jugulars were still flowing perfectly. He also has seen marked improvement since his return from Poland were he had both jugulars ballooned.
Something interesting is that one of the ladies that I went to Poland with, had a second procedure done in California last week. Since she had not felt any improvements from her trip to Poland, she sent her scans to a radiologist in her home state of California who is now treating CCSVI. Here is a brief summary of her 2nd procedure
"So my wife had her 2nd round yesterday, with Dr Arata. RIJV 80% blocked, ballooned to 16mm (low pressure). LIJV stent seems to have migrated a tad in its first week, still stenosed rather badly, some 12mm high-pressure ballooning seemed to help there, but the flow was still slow. He checked her left sinusoid vein, nothing to fix. AZY had a pretty bad stenosis that he ballooned with 8mm and 10mm. Heading to Hubbard for a follow-up scan at noon."
Waiting to hear how she is doing!
If anyone is interested and since there might not be such a long waiting list as Dr. Siskin in Albany NY, here is the information for Dr. Arata in California. Michael Arata, Pacific Interventionalists (Newport Beach in Southern California). He's been doing veins for 20 years and May-Thurner for 10. http://www.pacificinterventional.com/ (949) 221-0128 and 221-0129
Something interesting is that one of the ladies that I went to Poland with, had a second procedure done in California last week. Since she had not felt any improvements from her trip to Poland, she sent her scans to a radiologist in her home state of California who is now treating CCSVI. Here is a brief summary of her 2nd procedure
"So my wife had her 2nd round yesterday, with Dr Arata. RIJV 80% blocked, ballooned to 16mm (low pressure). LIJV stent seems to have migrated a tad in its first week, still stenosed rather badly, some 12mm high-pressure ballooning seemed to help there, but the flow was still slow. He checked her left sinusoid vein, nothing to fix. AZY had a pretty bad stenosis that he ballooned with 8mm and 10mm. Heading to Hubbard for a follow-up scan at noon."
Waiting to hear how she is doing!
If anyone is interested and since there might not be such a long waiting list as Dr. Siskin in Albany NY, here is the information for Dr. Arata in California. Michael Arata, Pacific Interventionalists (Newport Beach in Southern California). He's been doing veins for 20 years and May-Thurner for 10. http://www.pacificinterventional.com/ (949) 221-0128 and 221-0129
Friday, August 27, 2010
August 27th – 8 weeks Post Procedure
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.
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.
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