If you were wondering, I never did do the Low Dose Naltrexone. I went to my doctor, got a prescription for it, then thought, this isn't going to work any better than any of these other things, so I never bothered.
What I am going to do is start taking vitamins on a regular basis, specifically vitamin C, D, and. B complex and see if that helps at all.
Friday, December 30, 2011
Friday, December 23, 2011
11 months post CCSVI Operation
It has now been eleven month since my CCSVI operation and I have seen no improvement what so ever. In fact my MS has progressed. Now I can barely walk at all. Shuffling around home while using a cane is all I do. Going out anywhere, for anything has become such a burden, such a pain.
In any event, this is the end of my CCSVI journey. I was going to kill the blog, but I think I'll just turn it into my MS blog. After all, a guy has got to have a hobby.
In any event, this is the end of my CCSVI journey. I was going to kill the blog, but I think I'll just turn it into my MS blog. After all, a guy has got to have a hobby.
Monday, June 6, 2011
Followup visit with my MS neurologist
In May I had my yearly followup visit with my MS neurologist. She knew I was thinking of going for the CCSVI operation, so I let her know I did. I gave her a copy of the MRV, and the operating Doctors notes. I told her there were no changes.
She was quite sympathetic but said she didn't expect any changes. She had said before that she had lots of patients that went for this, so I asked if any of them had any improvements. She said lots of them wanted to get better so badly they thought they had improvements but really didn't. She also went on at great lengths about the placebo effect and how real it is and how the mind can cause the body to release "dopamine" [sp?]. I'm not sure what dopamine is, and really didn't want to get into it with her so simply asked "placebo effects for three, four, six months?"
Her answer was, "if you believe in something, or if you want something badly enough, you might just try a little bit harder, you might do all those little things that help a little bit more, like getting plenty of rest, and exercise, and you might appear to get better. Don't you have some days where you feel better, you feel positive and you walk better?"
My neurologist and the mainstream medical profession clearly have doubts about the whole thing, but their explanation of the apparent successes seem just as dubious. Who to believe.
I guess for anyone to get any real useful information the procedure must go through the rigours of the scientific process.
Of course I'm still looking for a cure or something to relieve my MS symptoms, it is just CCSVI isn't it.
I have a friend who has terminal cancer who sent me a link to the Low Dose Naltrexone Homepage, http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone . It is inexpensive, and according to my neurologist will do no harm. I think I'll give it a try and see what happens.
She was quite sympathetic but said she didn't expect any changes. She had said before that she had lots of patients that went for this, so I asked if any of them had any improvements. She said lots of them wanted to get better so badly they thought they had improvements but really didn't. She also went on at great lengths about the placebo effect and how real it is and how the mind can cause the body to release "dopamine" [sp?]. I'm not sure what dopamine is, and really didn't want to get into it with her so simply asked "placebo effects for three, four, six months?"
Her answer was, "if you believe in something, or if you want something badly enough, you might just try a little bit harder, you might do all those little things that help a little bit more, like getting plenty of rest, and exercise, and you might appear to get better. Don't you have some days where you feel better, you feel positive and you walk better?"
My neurologist and the mainstream medical profession clearly have doubts about the whole thing, but their explanation of the apparent successes seem just as dubious. Who to believe.
I guess for anyone to get any real useful information the procedure must go through the rigours of the scientific process.
Of course I'm still looking for a cure or something to relieve my MS symptoms, it is just CCSVI isn't it.
I have a friend who has terminal cancer who sent me a link to the Low Dose Naltrexone Homepage, http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone . It is inexpensive, and according to my neurologist will do no harm. I think I'll give it a try and see what happens.
June 6th, 2011
Well, I had the operation back in January and it is now June and I have had no discernible improvement. My right foot that was somewhat warmer went back to being ice cold a few days after getting back to Vancouver. So, for me, the operation did nothing.
I am, obviously, extremely disappointed, and even a little bit angry. Why didn't this work for me? Am I different again, even within the MS population? Or, is this whole CCSVI thing something that started with good intentions but is now just a big scam? Are all MS sufferers being mislead?
I am, obviously, extremely disappointed, and even a little bit angry. Why didn't this work for me? Am I different again, even within the MS population? Or, is this whole CCSVI thing something that started with good intentions but is now just a big scam? Are all MS sufferers being mislead?
Tuesday, February 1, 2011
Jan 28 day one post op
Today was kind of disappointing. The only symptom that has gone is my right foot is warm instead of freezing cold. I thought I'D be out dancing but no such luck.
The follow up appointment was a eight, which we were a little early for, but the office was locked. Dr Grewal showed up just before eight, but she did not have a key. We chatted in the hall for about ten minutes while someone found a key. We finally got in and continued the discussion in her office. I told her how disappointed I was and she said don't be too anxious. Actually only a few people experience an immediate effect. She said give it one too three months....and some people see no change at all. She said I'm right in the norm, just be patient. I told her I stayed in bed all last night, on my back, trying not to strain my neck veins. You don't need to do that, she said, continue your life as normal.
But isn't the vein split open from the operation? I asked.
no she said. Veins are very elastic. The blockage is not so much the vein but the little values in the veins. In our veins there are narrowings in the veins where essentially little flaps stop the blood from flowing backwards. In our arms and legs these are critical, but not in the neck. In the neck blood returning to the heart is not fighting gravity. These little valves in the neck veins is where the narrowing and blockage occurs. Dr Grewal said these valves are what they were rupturing and breaking, not the walls of the veins.
I thought I needed to be extremely careful with my neck from now on, but apparently I need not worry.
So, I pretty much misunderstood the procedure all the way along.
Now all I need are some positive results. More than just a warm foot.
Today was kind of disappointing. The only symptom that has gone is my right foot is warm instead of freezing cold. I thought I'D be out dancing but no such luck.
The follow up appointment was a eight, which we were a little early for, but the office was locked. Dr Grewal showed up just before eight, but she did not have a key. We chatted in the hall for about ten minutes while someone found a key. We finally got in and continued the discussion in her office. I told her how disappointed I was and she said don't be too anxious. Actually only a few people experience an immediate effect. She said give it one too three months....and some people see no change at all. She said I'm right in the norm, just be patient. I told her I stayed in bed all last night, on my back, trying not to strain my neck veins. You don't need to do that, she said, continue your life as normal.
But isn't the vein split open from the operation? I asked.
no she said. Veins are very elastic. The blockage is not so much the vein but the little values in the veins. In our veins there are narrowings in the veins where essentially little flaps stop the blood from flowing backwards. In our arms and legs these are critical, but not in the neck. In the neck blood returning to the heart is not fighting gravity. These little valves in the neck veins is where the narrowing and blockage occurs. Dr Grewal said these valves are what they were rupturing and breaking, not the walls of the veins.
I thought I needed to be extremely careful with my neck from now on, but apparently I need not worry.
So, I pretty much misunderstood the procedure all the way along.
Now all I need are some positive results. More than just a warm foot.
Saturday, January 29, 2011
January 29 - Day two post OP
Irene and I went to bed early last night. I had a really good sleep and got up around 8:30. Irene got up around 10. She said I was snoring very loudly last night. We went down for brunch a little later, around 10:30 ~ 11:00. We had a very leisurely meal then we spent about an hour reading the paper. Unrest in Egypt. It makes my problems seem tiny, but when you are living with them they are not.
Neither my walking nor any other symptom has improved. Right now it looks like a pretty huge expense to get a warm feeling right foot. But, I guess at least it is something.
I have some 'pre' and 'post' video of my walking which I'll post to YouTube and link to here once I get around to it. Of course they are both essentially the same so not really that amazing, but what the hell, I've got it and it might let some poor schmuck know that the CCSVI operation isn't all glamor and glory .
I was also going to continue posting every day and mark my amazing recovery, but it is just not there and continuing to post 'no change' just gets depressing. So, the posts are going to get sparse. I'll still keep a few coming though and will really ramp them up if there is any improvement.
Neither my walking nor any other symptom has improved. Right now it looks like a pretty huge expense to get a warm feeling right foot. But, I guess at least it is something.
I have some 'pre' and 'post' video of my walking which I'll post to YouTube and link to here once I get around to it. Of course they are both essentially the same so not really that amazing, but what the hell, I've got it and it might let some poor schmuck know that the CCSVI operation isn't all glamor and glory .
I was also going to continue posting every day and mark my amazing recovery, but it is just not there and continuing to post 'no change' just gets depressing. So, the posts are going to get sparse. I'll still keep a few coming though and will really ramp them up if there is any improvement.
Friday, January 28, 2011
January 28 - Day One Post OP
Today was kind of disappointing. The only symptom that has gone away is my right foot is warm instead of freezing cold. I thought I'd be out dancing, but no such luck.
The follow up appointment was a eight in the morning. We were a little early and the office was locked when we arrived. Dr Grewal showed up just before eight, but unfortunately she did not have a key. We chatted in the hall for about ten minutes while someone found a key. We finally got in and continued the discussion in her office.
I told her how disappointed I was and she said don't be too anxious. She said actually only a few people experience an immediate effect. She said give it one too three months. However she did also say some people see no change at all. So, she said I was right in the norm, and to just be patient.
I told her I stayed in bed all last night, on my back, trying not to strain my neck veins. She smiled and said, 'You don't need to do that, just continue with your life as normal.'
'But isn't the vein split open from the operation?' I asked,
'No', she said. 'Veins are very elastic and stretch with the angioplasty. The blockage or narrowing isn't so much the vein but the little valves in the veins. In our veins there are narrowings in the veins where essentially little flaps stop the blood from flowing backwards. In our arms and legs these are critical, but not so much in the neck. In the neck blood returning to the heart is not fighting gravity, but is being helped by gravity. These little valves in the neck veins are where the narrowing and blockage occurs. These valves are what we were trying to stretch or rupture and have heal back wider, not the walls of the veins.'
' But all your literature says stay in the area for 48 hours, isn't that in case there are complications?'
Yes, she said, but you had no complications. For the operation we give patients blood thinners, so one of the main issues is the small incision doesn't clot properly and continues to bleed. After the operation and during post OP yours stopped bleeding nicely, so was not an issue.
Hmmm. I booked the hotel till Monday and our flight back on Monday afternoon because I was envisioning complications and because I thought I needed to be extremely careful with my neck. Apparently I need not worry. I guess it is better to be safe than sorry.
Now all I need are some positive results, but more than just a warm foot.
The follow up appointment was a eight in the morning. We were a little early and the office was locked when we arrived. Dr Grewal showed up just before eight, but unfortunately she did not have a key. We chatted in the hall for about ten minutes while someone found a key. We finally got in and continued the discussion in her office.
I told her how disappointed I was and she said don't be too anxious. She said actually only a few people experience an immediate effect. She said give it one too three months. However she did also say some people see no change at all. So, she said I was right in the norm, and to just be patient.
I told her I stayed in bed all last night, on my back, trying not to strain my neck veins. She smiled and said, 'You don't need to do that, just continue with your life as normal.'
'But isn't the vein split open from the operation?' I asked,
'No', she said. 'Veins are very elastic and stretch with the angioplasty. The blockage or narrowing isn't so much the vein but the little valves in the veins. In our veins there are narrowings in the veins where essentially little flaps stop the blood from flowing backwards. In our arms and legs these are critical, but not so much in the neck. In the neck blood returning to the heart is not fighting gravity, but is being helped by gravity. These little valves in the neck veins are where the narrowing and blockage occurs. These valves are what we were trying to stretch or rupture and have heal back wider, not the walls of the veins.'
' But all your literature says stay in the area for 48 hours, isn't that in case there are complications?'
Yes, she said, but you had no complications. For the operation we give patients blood thinners, so one of the main issues is the small incision doesn't clot properly and continues to bleed. After the operation and during post OP yours stopped bleeding nicely, so was not an issue.
Hmmm. I booked the hotel till Monday and our flight back on Monday afternoon because I was envisioning complications and because I thought I needed to be extremely careful with my neck. Apparently I need not worry. I guess it is better to be safe than sorry.
Now all I need are some positive results, but more than just a warm foot.
Thursday, January 27, 2011
January 27 - Day Zero - Operation Day
My times were changed, made a little bit later, because of complications with the operation before me. This made me a little bit nervous, but I was committed.
The operation theater is quite different here than in Canada. It is not in or attached to a hospital, but is in a non nondescript office building. The office building is more or less all medical related, but the buildings location is in no particular place.
We spent a good half hour waiting before signing forms and then at least one, maybe two hours before going into the prep area. Once prepped, with IV and heart monitor, it was probably another hour wait. I was on a wheel-able bed so I did my best to sleep. Irene waited patiently with me.
When they finally wheeled me into the operating theater things proceeded very fast. Although I was only viewing things from an inclined position the operating theater looked very well equipped, modern and new.. I counted five people in the OR so it was well staffed. I felt I was in good and competent hands.
They say they will make an incision in your groin area, but it is actually a little higher and further out. You know that crease where your leg an torso meet? Well, they made my incision about an inch ~ inch and a half up that crease away from my groin.
They shaved and sterilized a large path in the upper right area of my groin, right leg. The Dr. made a small incision and inserted the catheter and 'wire'. Surprisingly they kept me awake for the procedure.
In less than a minute I heard some slight bubbling coming from my left neck, then this intense pain as they inflated the angioplasty. Susan, the nurse looking after my IV, gave me a quick blast of pain killer, thank God. Then, less than a minute later, they were in the right side of my neck. They must have inflated the angioplasty more on this side since the pain was greater and about three ~ five seconds long.
Then a few seconds later Dr Grewal asked me to take a deep breath and hold it. I did and there was this quick pain in my chest. There was a pause, Dr. Grewal asked me to take another big breath and hold it. I did and there was another quick pain in my chest.
Seconds later Dr Grewal said 'OK Roy, we are done'. I couldn't resist so I said 'Doc, will I be able to play the piano after the operation?'
She laughed and said 'well, I guess that depends on whether you could play the piano before or not.'
A nurse put pressure on the incision's dressing for about ten minutes before I was wheeled out into post OP where I stayed on the gurney for another hour before being helped dressed and sent back to the hotel.
When we got back to the hotel I went right to bed, lying on my back with a low pillow, trying not to move my neck. Staying in bed just on your back for 12 hours is not an easy thing to do, but i did it. I stayed in bed until the next day.
The operation theater is quite different here than in Canada. It is not in or attached to a hospital, but is in a non nondescript office building. The office building is more or less all medical related, but the buildings location is in no particular place.
We spent a good half hour waiting before signing forms and then at least one, maybe two hours before going into the prep area. Once prepped, with IV and heart monitor, it was probably another hour wait. I was on a wheel-able bed so I did my best to sleep. Irene waited patiently with me.
When they finally wheeled me into the operating theater things proceeded very fast. Although I was only viewing things from an inclined position the operating theater looked very well equipped, modern and new.. I counted five people in the OR so it was well staffed. I felt I was in good and competent hands.
They say they will make an incision in your groin area, but it is actually a little higher and further out. You know that crease where your leg an torso meet? Well, they made my incision about an inch ~ inch and a half up that crease away from my groin.
They shaved and sterilized a large path in the upper right area of my groin, right leg. The Dr. made a small incision and inserted the catheter and 'wire'. Surprisingly they kept me awake for the procedure.
In less than a minute I heard some slight bubbling coming from my left neck, then this intense pain as they inflated the angioplasty. Susan, the nurse looking after my IV, gave me a quick blast of pain killer, thank God. Then, less than a minute later, they were in the right side of my neck. They must have inflated the angioplasty more on this side since the pain was greater and about three ~ five seconds long.
Then a few seconds later Dr Grewal asked me to take a deep breath and hold it. I did and there was this quick pain in my chest. There was a pause, Dr. Grewal asked me to take another big breath and hold it. I did and there was another quick pain in my chest.
Seconds later Dr Grewal said 'OK Roy, we are done'. I couldn't resist so I said 'Doc, will I be able to play the piano after the operation?'
She laughed and said 'well, I guess that depends on whether you could play the piano before or not.'
A nurse put pressure on the incision's dressing for about ten minutes before I was wheeled out into post OP where I stayed on the gurney for another hour before being helped dressed and sent back to the hotel.
When we got back to the hotel I went right to bed, lying on my back with a low pillow, trying not to move my neck. Staying in bed just on your back for 12 hours is not an easy thing to do, but i did it. I stayed in bed until the next day.
Wednesday, January 26, 2011
January 26 - Day minus one - MRV & Dr. Consultation
This was a really busy day with the MRV in the morning and the Dr consultation at four.
The MRV was like any MRI; an hour and a half of loud buzzing, banging, clanging and hammering to the backdrop of classical music. Oh, and with no moving, and having every possible itch but not being able to scratch. It felt like a clockwork orange moment, except I don't hate classical music any more than I ever did. For the most part I swallowed, sniffled, and coughed during the silent moments between all the racket. About three quarter's of the way through I had to ask him to stop so I could cough three or four times.
All in all the technician said I did good and the pictures came out great.
The consultation seemed to be a lot of paperwork and an awful lot o waiting, but we met Dr. Grewal, the doctor who would be doing the surgery. Irene an I had about 15 ~20 minutes one on one chat with the doctor. She said the MRV indicated some blockage in both jugulars. I think shew said 50% in the left one and 70% in the right. This is good bad news. There is a problem, but there is also something to fix.
We asked some very poignant questions, although I can't remember what they were, and got some very honest answers. It was good. I felt comfortable with the doctor.
We went in for the consultation appointment at four and left at six, so even with the waiting we had a good meeting with the doctor.
The operation is tomorrow. I cannot have any food or drink after midnight.
This is going to happen.
The MRV was like any MRI; an hour and a half of loud buzzing, banging, clanging and hammering to the backdrop of classical music. Oh, and with no moving, and having every possible itch but not being able to scratch. It felt like a clockwork orange moment, except I don't hate classical music any more than I ever did. For the most part I swallowed, sniffled, and coughed during the silent moments between all the racket. About three quarter's of the way through I had to ask him to stop so I could cough three or four times.
All in all the technician said I did good and the pictures came out great.
The consultation seemed to be a lot of paperwork and an awful lot o waiting, but we met Dr. Grewal, the doctor who would be doing the surgery. Irene an I had about 15 ~20 minutes one on one chat with the doctor. She said the MRV indicated some blockage in both jugulars. I think shew said 50% in the left one and 70% in the right. This is good bad news. There is a problem, but there is also something to fix.
We asked some very poignant questions, although I can't remember what they were, and got some very honest answers. It was good. I felt comfortable with the doctor.
We went in for the consultation appointment at four and left at six, so even with the waiting we had a good meeting with the doctor.
The operation is tomorrow. I cannot have any food or drink after midnight.
This is going to happen.
Tuesday, January 25, 2011
January 25 - Day minus two - Travel day
All my bags are packed, I'm ready to go. ... Already I'm so excited I could die
Val brought Irene and I to the airport early, which is a really good thing. Check in, Security, and Custom all take time. There was a really nice steward from Air Canada that helped us through everything and wheeled me all the way down to our gate. So far this adventure has been really positive.
On another note, writing this one handed on my net-book is quite the challenge. Whomever invented the mouse glide pad should be shot, or forced to use one the rest of their life, both equal punishment.
The flight was uneventful. LAX airport seemed fairly quiet to me. We met our ground transportation, got out of the airport and bam, we were in bumper to bumper traffic; on a major free-way! Thank God for commuter lanes. The traffic let up a bit as we got closer to Newport Beach.
We're staying in the Marriott which is a nice hotel. They have pretty good handy capped rooms too. But $12.50 a day for internet access? Come on Marriott; don't be so chintzy.
Val brought Irene and I to the airport early, which is a really good thing. Check in, Security, and Custom all take time. There was a really nice steward from Air Canada that helped us through everything and wheeled me all the way down to our gate. So far this adventure has been really positive.
On another note, writing this one handed on my net-book is quite the challenge. Whomever invented the mouse glide pad should be shot, or forced to use one the rest of their life, both equal punishment.
The flight was uneventful. LAX airport seemed fairly quiet to me. We met our ground transportation, got out of the airport and bam, we were in bumper to bumper traffic; on a major free-way! Thank God for commuter lanes. The traffic let up a bit as we got closer to Newport Beach.
We're staying in the Marriott which is a nice hotel. They have pretty good handy capped rooms too. But $12.50 a day for internet access? Come on Marriott; don't be so chintzy.
Monday, January 24, 2011
My MS History
Hello. My name is Roy Stacey. I am in my mid fifties and have had MS for about sixteen years.
For the first couple of years my symptoms were relatively benign, but then they started to get a little bit worse. I eventually went onto Avonex and had about eight years relatively new symptom free. Unfortunately good things don't last forever.
About four years ago my ability to walk, basically use my entire right side, started to deteriorate. I went from walking about sixteen blocks daily to having difficulty walking in my own home. My neurologist said my MS had changed from relapsing remitting to secondary progressive. And progress it has.
My neurologist said the common MS drugs would not do me any good any more, but that they had some success with a chemo therapy drug called mitoxantrone.
I did about nine months of the treatments, saw no benefits, so stopped the regime in June of 2010.
I had been working until then [desk job of course] but over the summer realized I just couldn't keep it up. I met with my neurologist in September, got the forms signed for medical long term disability, and told her I was thinking of going for the 'Liberation treatment'. She was quite supportive, made some suggestions, and warned me of some possible pitfalls. I'm not sure if this is unusual in Canada, but I was certainly pleasantly surprised. I say this since the Canadian Government and Canadian Medical community do not condone this procedure.
So, that brings us to now. I 've been MS drug free for over six months and..
I'm going to have the liberation treatment in three days!
I am so excited!!
For the first couple of years my symptoms were relatively benign, but then they started to get a little bit worse. I eventually went onto Avonex and had about eight years relatively new symptom free. Unfortunately good things don't last forever.
About four years ago my ability to walk, basically use my entire right side, started to deteriorate. I went from walking about sixteen blocks daily to having difficulty walking in my own home. My neurologist said my MS had changed from relapsing remitting to secondary progressive. And progress it has.
My neurologist said the common MS drugs would not do me any good any more, but that they had some success with a chemo therapy drug called mitoxantrone.
I did about nine months of the treatments, saw no benefits, so stopped the regime in June of 2010.
I had been working until then [desk job of course] but over the summer realized I just couldn't keep it up. I met with my neurologist in September, got the forms signed for medical long term disability, and told her I was thinking of going for the 'Liberation treatment'. She was quite supportive, made some suggestions, and warned me of some possible pitfalls. I'm not sure if this is unusual in Canada, but I was certainly pleasantly surprised. I say this since the Canadian Government and Canadian Medical community do not condone this procedure.
So, that brings us to now. I 've been MS drug free for over six months and..
I'm going to have the liberation treatment in three days!
I am so excited!!
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