I know I haven't posted in a while, but there was not much to report. I'm still waiting for this blood clot to dissolve so I can get off this Coumadin. I went for another doppler ultrasound in Barrie yesterday and was told that there is much better flow but the clot has not totally disolved. I'm to stay on Coumadin and see them in another four months. I continue to have someone come to the house and take blood, once a week to keep my levels in the right range.
In the meantime I'm going to try to get a doppler done in Cornwall so I don't have to go back to Barrie. One thing that is good about going to Barrie is that I get to visit my sister and her husband. We have such a good time when we go there. We have made some new friends and they treat us very well and make us the best meals.
Last week I started back on Prozac cause I felt like crying all the time. I had a knot in my throat for the stupidest things ie sad articles and movies, struggling to make my bed etc. The doctor had taken me off when I started the Coumadin and I really did not think I needed it anymore. Well, I guessed wrong as I'm feeling much better emotionally!
My energy seems to be up and down, so I'm not sure if it's the effects of the Coumadin. I've been reading a lot about CCSVI and there is still a lot of mixed reviews as some do really well while others do not. Is it placebo, who knows!
In the meantime, I walk around the house using my walker and try to keep positive!
Tuesday, May 3, 2011
Saturday, February 26, 2011
Results of my Doppler Ultrasound - February 26th
On Tuesday, February 22nd, the day of my 20th wedding anniversary, I received some good news. I went to the Imaging Clinic in Barrie to have my 3-week follow-up doppler ultrasound. The technician told me that the blood clot in my left jugular is starting to dissolve and there is now some blood flow getting through. The Coumadin is working. I went for blood work on Tuesday and my levels were 2.7. On Friday, I called the doctor to get Thursday's results and it had increased slightly to 2.9. He told me to continue on the 2 pills a day (10 mg).
I updated my doctor in Brooklyn and he mentioned that this was great news. He said he doesn't know what happened as he had a group of patients with clotting, the likes of which he has never seen before and has backed off a bit in the over dilation.
I have lost my balance and have fallen three times in the last week so I'm now using my walker before I really hurt myself. I can still feel the bruise on my head from the fall I took last week at my sister's place.
Despite not having any improvements from my last procedure, I am very optimistic that the increased blood flow will change things. I go back to Barrie in 2 months time and hopefully the blood clot will be completely gone by then.
I updated my doctor in Brooklyn and he mentioned that this was great news. He said he doesn't know what happened as he had a group of patients with clotting, the likes of which he has never seen before and has backed off a bit in the over dilation.
I have lost my balance and have fallen three times in the last week so I'm now using my walker before I really hurt myself. I can still feel the bruise on my head from the fall I took last week at my sister's place.
Despite not having any improvements from my last procedure, I am very optimistic that the increased blood flow will change things. I go back to Barrie in 2 months time and hopefully the blood clot will be completely gone by then.
Tuesday, February 15, 2011
More Blood Work - February 15
Today I got the doppler ultrasound results from my appointment on Feb. 2. It shows that my right internal jugular vein to be normal flow. But on the left side it says that the internal jugular vein does not appear patent with trombus imaged. No flow was obtained by pulsed doppler suggestive of venous trombosis.
I started to take coumadin (an anticoagulant drug) that day and have since been having blood work done twice a week. This test is called the PT/INR and it used to monitor the effects of blood thinning drugs. The normal ratio is 1 and my results were 1 the first week and then 1.1 last Friday. My doctor has increased my coumadin amounts twice so that I am up to 2 pills or 10 mg a day. I guess the best ratio for anyone with a blood clot is to get it betwen 2 and 3. I had a blood test today and will be having another one on Thursday so I'm anxious to see if the extra coumadin gets the level up!
I go for another doppler ultrasound in Barrie next Tuesday, Feb. 22nd which is also the day of our 20th wedding anniversary so getting good results would be a nice gift!
I had a good friend and his wife over this weekend. This friend has had MS for about 25 years and at one time spent about 8 years in a wheelchair. It's so nice to see him walking around without any aids. When I asked him what his secret is, well he says he doesn't have one. He never had the CCSVI procedure and it's a total mystery why his MRI shows remyelination. He is on his threadmill everyday and his laugh and good humour is infectious. He is my inspiration!
Most days I walk around the house with my walker now since I still have a lot of back pain. Although my energy is still very good, my body is not very cooperative and I still drag both feet a lot, more so with the left leg. I know I should be exercising but lack the motivation.
I will post again once I get back from Barrie next week. The good thing about this trip is seeing my sister and brother-in-law more often as they live in Orangeville. I wish they lived closer as I love spending time with them
I started to take coumadin (an anticoagulant drug) that day and have since been having blood work done twice a week. This test is called the PT/INR and it used to monitor the effects of blood thinning drugs. The normal ratio is 1 and my results were 1 the first week and then 1.1 last Friday. My doctor has increased my coumadin amounts twice so that I am up to 2 pills or 10 mg a day. I guess the best ratio for anyone with a blood clot is to get it betwen 2 and 3. I had a blood test today and will be having another one on Thursday so I'm anxious to see if the extra coumadin gets the level up!
I go for another doppler ultrasound in Barrie next Tuesday, Feb. 22nd which is also the day of our 20th wedding anniversary so getting good results would be a nice gift!
I had a good friend and his wife over this weekend. This friend has had MS for about 25 years and at one time spent about 8 years in a wheelchair. It's so nice to see him walking around without any aids. When I asked him what his secret is, well he says he doesn't have one. He never had the CCSVI procedure and it's a total mystery why his MRI shows remyelination. He is on his threadmill everyday and his laugh and good humour is infectious. He is my inspiration!
Most days I walk around the house with my walker now since I still have a lot of back pain. Although my energy is still very good, my body is not very cooperative and I still drag both feet a lot, more so with the left leg. I know I should be exercising but lack the motivation.
I will post again once I get back from Barrie next week. The good thing about this trip is seeing my sister and brother-in-law more often as they live in Orangeville. I wish they lived closer as I love spending time with them
Tuesday, February 1, 2011
February 1, 2011 - Blood Clot
I know I haven't written in a while but it's because I was waiting to go for my doppler ultrasound in Barrie, Ontario yesterday. The technician did not have good news for me as I was told I have a blood clot in my left internal jugular vein. This is the vein that Dr. Sclafani had some difficulty with. In his report, he mentions that it was quite difficult to get into the left internal jugular vein. There were multiple areas of abnormal valves and hyperplastic areas. I finally had two areas on that side ballooned and after the procedure that side was very painful and I was told to take Tylenol.
I was really surprised that I had a blood clot since I don't have a stent and I was on an anticoagulant for 21 days after the procedure and then I continued on baby aspirin every day. I'm a bit worried about this blood clot especially after seeing the urgency at the clinic in getting in touch with my doctor and still having some discomfort in my neck since my procedure depending on how I turn my head. Also, for the past few weeks I wake up feeling like I have a headache starting or more like some slight head pressure but it eventually clears up somewhat. I also wonder if this is why I have not had any major improvements. I don't know much about this and whether blood thinners alone can disolve the blood clot but at least it's been discovered and I have proper followup. I also informed Dr. Sclafani, the doctor in Brooklyn, and he was sorry that this happened. He wants me to keep him informed so that we can look at what we need to do after the anticoagulation is completed.
I was really surprised that I had a blood clot since I don't have a stent and I was on an anticoagulant for 21 days after the procedure and then I continued on baby aspirin every day. I'm a bit worried about this blood clot especially after seeing the urgency at the clinic in getting in touch with my doctor and still having some discomfort in my neck since my procedure depending on how I turn my head. Also, for the past few weeks I wake up feeling like I have a headache starting or more like some slight head pressure but it eventually clears up somewhat. I also wonder if this is why I have not had any major improvements. I don't know much about this and whether blood thinners alone can disolve the blood clot but at least it's been discovered and I have proper followup. I also informed Dr. Sclafani, the doctor in Brooklyn, and he was sorry that this happened. He wants me to keep him informed so that we can look at what we need to do after the anticoagulation is completed.
Thursday, January 13, 2011
A Video of My Brooklyn Procedure - January 13, 2011
Last week I received the CD of my procedure from Brooklyn. I was disappointed that this was strictly images and not like the one I got from Poland which was video where you can actually see your heart beating! However I combined all the images into a show and uploaded it to YouTube. Here is the link:
http://www.youtube.com/watch?v=kbCC6iBSzf8
You can clearly see where the blockages were as the inserted balloons show the area of constriction. If you want to compare it with the written report, it is included in a tab above.
This past weekend I spent it in Kingston since my daughter was in a hockey tournament. I went to the arenas for 3 our of the 4 games she played. There is no way in the winter I could walk alone with just my cane as hitting water could send me for a tumble. Thank god my husband does not mind (well he says he doesn't) walk slowly with me hanging off of him!
My lower back is still very sore but I actually spent time yesterday and today doing stretches and getting on my recumbent bicycle. My left leg is not very cooperative and I sometimes have to use my arm to make it turn. Since I just started using the bicyble, I am hoping that every day gets easier. I will keep you updated on my progress.
http://www.youtube.com/watch?v=kbCC6iBSzf8
You can clearly see where the blockages were as the inserted balloons show the area of constriction. If you want to compare it with the written report, it is included in a tab above.
This past weekend I spent it in Kingston since my daughter was in a hockey tournament. I went to the arenas for 3 our of the 4 games she played. There is no way in the winter I could walk alone with just my cane as hitting water could send me for a tumble. Thank god my husband does not mind (well he says he doesn't) walk slowly with me hanging off of him!
My lower back is still very sore but I actually spent time yesterday and today doing stretches and getting on my recumbent bicycle. My left leg is not very cooperative and I sometimes have to use my arm to make it turn. Since I just started using the bicyble, I am hoping that every day gets easier. I will keep you updated on my progress.
Saturday, January 1, 2011
Happy New Year
I am convinced that this year will prove that venous obstruction is in some way related to the symptoms and deterioration of multiple sclerosis. CCSVI will continue to be a big part of the news in 2011.
Yesterday was 4 weeks since my procedure in Brooklyn, NY and although I don't have any major improvements in my walking ability, my energy level has greatly improved. My balance is also much better. I noticed this when I'm in the shower or when I pull a sweater over my head and don't have to hold on. One thing that is really bothering me is a very sore lower back. This is something that I have struggled with for quite some time and it sort of comes and goes but it has been pretty constant the last 2-3 weeks.
I will continue to keep you updated!
Yesterday was 4 weeks since my procedure in Brooklyn, NY and although I don't have any major improvements in my walking ability, my energy level has greatly improved. My balance is also much better. I noticed this when I'm in the shower or when I pull a sweater over my head and don't have to hold on. One thing that is really bothering me is a very sore lower back. This is something that I have struggled with for quite some time and it sort of comes and goes but it has been pretty constant the last 2-3 weeks.
I will continue to keep you updated!
Monday, December 13, 2010
The Report of My Procedure
I have attached the report of my CCSVI Procedure if anyone is interested in reading it. It is included in the tab above.
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