Slow miracles are just as good as fast miracles......they just aren't as flashy. We are in the midst of a slow miracle here and we are grateful for every bit of it.
Linda mentioned to me just a little while ago, "the procedure really has made a difference. I'm not in molasses like I usually am at this time of the day." That was the first thing I observed on the day of the procedure....she seemed to have more energy than usual. Today, she confirmed that without the molasses effect, her energy level has picked up.
We've been back from the trip to Albany 24 hours now, and it's at home where we can really gauge how it is going. Here at home we notice several things: 1) more energy as mentioned above; 2) a left hand and arm that is functioning better; 3) more perceived body warmth; and 4) less pain. Let me elaborate a little.
Linda in the last couple of years has been fairly low energy in the afternoon and evening. She just has "worn out". It doesn't seem so surprising now.....her jugular veins were not allowing good blood flow from her cranium.
Second, her left arm has been following the path of the left leg toward immobility. Her left leg is largely frozen in the extended position. It can be moved, but only with external force. She doesn't have the ability to move it. Her left hand has been gradually diminishing in its ability to work. She mentioned yesterday on the airplane, "my hand is still working better than it was."
Linda has always wanted a warmer room temperature than me, and I doubt that will ever change. In the last couple of years, however, she has wanted a LOT of warm things around her. If we sit to watch a movie, she has wanted a lot of cover, even with many warm clothes. Today she said, "I'm warmer than I have been." Nice!
The pain issue has been a big deal. She's not much of a complainer, but I have known that it was tough for her. Involuntary grunts of pain in the night were very common. Now, she seems to be sleeping more easily and is struggling less with pain during the day.
This is what we have seen so far. We are a couple of grateful people.
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights". We are grateful for this gift of a slow miracle.
We're also grateful for pioneers like Dr. Gary Siskin at Community Care Physicians and Albany Medical Center, and the team there. What a gift they have been to us and to many others.
Friday, September 24, 2010
Wednesday, September 22, 2010
Day Two After "Liberation"
It's called the Liberation Treatment because a fair number of MS sufferers around the world have been "liberated" from many or most of their symptoms by it. My wife Linda had the treatment Monday. This is day two after her CCSVI was repaired with balloon angioplasty in her jugular and azygous veins.
It feels as if her energy level has markedly increased. Yesterday morning she reported that her hand was working easily for the first time in many weeks. Her pain level was down yesterday.
Today, the report is still good. She seems to have more energy than before. That alone is a good result. Pain is up, and hand is not working quite so well. Some of that may be due to tiredness from the driving around we have been doing.
The docs at Albany Medical Center recommend not forming a firm judgment about the results of the procedure for at least three months. That's the way we're going to look at it. We see some good things, but hope for more as the repaired veins do their work!
It feels as if her energy level has markedly increased. Yesterday morning she reported that her hand was working easily for the first time in many weeks. Her pain level was down yesterday.
Today, the report is still good. She seems to have more energy than before. That alone is a good result. Pain is up, and hand is not working quite so well. Some of that may be due to tiredness from the driving around we have been doing.
The docs at Albany Medical Center recommend not forming a firm judgment about the results of the procedure for at least three months. That's the way we're going to look at it. We see some good things, but hope for more as the repaired veins do their work!
Monday, September 20, 2010
The Tide is Returning?
The tide may be returning. Already Linda feels better with more energy and seems more resistant to the cold. Even just a few hours after the procedure, she is moving around with more energy that I have seen in months.
At noon today, we went into the Albany Medical Center (AMC) where Linda was made ready for the catheterization procedure. Dr. Gary Siskin came in and talked with us again. He had called the previous day to ask what questions we had, and to help us with pre-procedure anxiety, and to help us manage expectations.
He’s a careful physician, but compassionate. On Sunday he basically said there is no telling what this procedure will bring about. Don’t expect U-Tube results, but hope for good outcomes was his message. Changes may be subtle, he said.
At AMC, the radiology team told us they have now done more than 200 of these procedures. The team at AMC was open, friendly and professional. It does make a difference to be among friendly people when going through something like this.
The procedure took only 90 minutes, which is the average, one of the nurses told me. I waited in a larger waiting room with a pager they supplied.
When I got back to the recovery area, Linda was already there resting comfortably. That doesn’t sound like a big deal….resting comfortably…..but that has not been the path she has been on in recent months. Mostly she has been in pain.
And she was laying there talking about big plans that she had for a choice piece of cooked bovis domesticus.
Dr. Siskin explained what happened to the table. He said that her azygous vein looked pretty good, and he only smoothed it out a bit. On the other hand, both jugular veins had noticeable stenoses occurring high up the neck. He said the constriction was impressive in both of them; more than the norm he sees. He did an angioplasty in both. That helped the blood flow a lot, he said. He could see it in the imaging. He provided a DVD copy of some of the images.
He recommended that we visit an Interventional Radiologist closer to Anchorage for a three month followup. He wants Linda to take aspirin daily for three months. He also asked us to email him with information on how it is going.
I didn’t realize the emotions bottled up in me until I called our daughter….and found at places in my oral description that I could hardly talk. It’s mainly relief that she is okay, but also a sense that this could be the beginning of the tide starting to return.
Whether it comes in all the way – and who would not wish for that – or only part of the way, we’re grateful for the hope that this has engendered. Praise God from whom all blessings flow!
At noon today, we went into the Albany Medical Center (AMC) where Linda was made ready for the catheterization procedure. Dr. Gary Siskin came in and talked with us again. He had called the previous day to ask what questions we had, and to help us with pre-procedure anxiety, and to help us manage expectations.He’s a careful physician, but compassionate. On Sunday he basically said there is no telling what this procedure will bring about. Don’t expect U-Tube results, but hope for good outcomes was his message. Changes may be subtle, he said.
At AMC, the radiology team told us they have now done more than 200 of these procedures. The team at AMC was open, friendly and professional. It does make a difference to be among friendly people when going through something like this.
The procedure took only 90 minutes, which is the average, one of the nurses told me. I waited in a larger waiting room with a pager they supplied.
When I got back to the recovery area, Linda was already there resting comfortably. That doesn’t sound like a big deal….resting comfortably…..but that has not been the path she has been on in recent months. Mostly she has been in pain.
And she was laying there talking about big plans that she had for a choice piece of cooked bovis domesticus.
Dr. Siskin explained what happened to the table. He said that her azygous vein looked pretty good, and he only smoothed it out a bit. On the other hand, both jugular veins had noticeable stenoses occurring high up the neck. He said the constriction was impressive in both of them; more than the norm he sees. He did an angioplasty in both. That helped the blood flow a lot, he said. He could see it in the imaging. He provided a DVD copy of some of the images.
He recommended that we visit an Interventional Radiologist closer to Anchorage for a three month followup. He wants Linda to take aspirin daily for three months. He also asked us to email him with information on how it is going.
I didn’t realize the emotions bottled up in me until I called our daughter….and found at places in my oral description that I could hardly talk. It’s mainly relief that she is okay, but also a sense that this could be the beginning of the tide starting to return.
Whether it comes in all the way – and who would not wish for that – or only part of the way, we’re grateful for the hope that this has engendered. Praise God from whom all blessings flow!
Wednesday, September 15, 2010
Hope for a Tidal Change in Linda's Health
On Friday morning, Linda and I take off for Albany, New York for an unproven medical treatment that we are expecting will halt the symptoms of the multiple sclerosis that has been slowly, inexorably stealing her mobility and motion.
By faith, I believe this treatment will provide that firm halt, and provide a base for rebuilding mobility. God made our bodies to heal, and once the offense is ended, they will heal. The tide of her health has been ebbing. I believe that tide is going to rise!
We have been trusting God throughout the 16 years of this affliction. This procedure feels to me like His provision. But even if I'm wrong, we're going to continue to trust.
The medical community is divided on the "liberation treatment" that she will experience on Monday. The investigations so far have been inconsistent, with results ranging from substantial success to inability to replicate findings. Neurologists tend to argue against it, urging suffers to wait for definitive results.
We can't wait. In the years that it could take for more definitive answers on this treatment, Linda could be wheelchair- or even bed-bound. I understand the desire of physicians to have good science-based treatments.....but I also clearly understand the desire of patients to grasp at what offers hope.
A small band of Interventional Radiologists are offering the procedure, arguing that it appears to be helping some. When we made the arrangements for this trip a few months ago, the only USA option was Community Care Physicians in Albany, NY. Others in the USA had started, but have been stopped by their institutions, at least temporarily. A number of clinics in Mexico, Europe and India have been providing this service for many months now, with good many good reports. Hundreds and hundreds of MS sufferers have now undergone the treatment worldwide. Some have reported spectacular results, others a little bit of help, and others....nothing.
Briefly, the treatment involves threading a catheter into the veins that drain the brain and repairing kinks or constrictions. The point of this is to allow better blood flow. It has been known for over 100 years that MS sufferers have deposits of iron around veins draining the brain. The theory is that constricted drainage leads to iron from blood hemoglobin crossing the blood/brain barrier, killing sensitive nerve tissue. The condition has been dubbed chronic cerebro-spinal venous insufficiency (CCSVI).
It appears that Linda is being attacked by secondary progressive multiple sclerosis (SPMS). In this variation, motor control is progressively lost. Drug therapies are generally modestly helpful, if at all, and there are a number of serious side effects associated with them. The effects of SPMS in her have been devastating to her ability to walk. In the 2001-2005 time period, she and I walked over 1,000 miles while we lived in Uppsala. Today, she can only walk with an electric nerve stimulator that lifts her left foot and using a walker for balance, and then only for short distances. Her left side is particularly affected, but there are deficits in her right as well.
So....to Albany we go. If you remember of us at 9 AM (Alaska time) on Monday, September 20, please pray for good results. No....don't pray for good results....pray for amazing results!
Thank you for your love, your concern and your prayers.
 |
| From Cruise |
We have been trusting God throughout the 16 years of this affliction. This procedure feels to me like His provision. But even if I'm wrong, we're going to continue to trust.
The medical community is divided on the "liberation treatment" that she will experience on Monday. The investigations so far have been inconsistent, with results ranging from substantial success to inability to replicate findings. Neurologists tend to argue against it, urging suffers to wait for definitive results.
We can't wait. In the years that it could take for more definitive answers on this treatment, Linda could be wheelchair- or even bed-bound. I understand the desire of physicians to have good science-based treatments.....but I also clearly understand the desire of patients to grasp at what offers hope.
A small band of Interventional Radiologists are offering the procedure, arguing that it appears to be helping some. When we made the arrangements for this trip a few months ago, the only USA option was Community Care Physicians in Albany, NY. Others in the USA had started, but have been stopped by their institutions, at least temporarily. A number of clinics in Mexico, Europe and India have been providing this service for many months now, with good many good reports. Hundreds and hundreds of MS sufferers have now undergone the treatment worldwide. Some have reported spectacular results, others a little bit of help, and others....nothing.
Briefly, the treatment involves threading a catheter into the veins that drain the brain and repairing kinks or constrictions. The point of this is to allow better blood flow. It has been known for over 100 years that MS sufferers have deposits of iron around veins draining the brain. The theory is that constricted drainage leads to iron from blood hemoglobin crossing the blood/brain barrier, killing sensitive nerve tissue. The condition has been dubbed chronic cerebro-spinal venous insufficiency (CCSVI).
It appears that Linda is being attacked by secondary progressive multiple sclerosis (SPMS). In this variation, motor control is progressively lost. Drug therapies are generally modestly helpful, if at all, and there are a number of serious side effects associated with them. The effects of SPMS in her have been devastating to her ability to walk. In the 2001-2005 time period, she and I walked over 1,000 miles while we lived in Uppsala. Today, she can only walk with an electric nerve stimulator that lifts her left foot and using a walker for balance, and then only for short distances. Her left side is particularly affected, but there are deficits in her right as well.
So....to Albany we go. If you remember of us at 9 AM (Alaska time) on Monday, September 20, please pray for good results. No....don't pray for good results....pray for amazing results!
Thank you for your love, your concern and your prayers.
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