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Tag Archives: Multiple Sclerosis
On Friday, Linda and I returned from a six day trip to southern California where she received the CCSVI treatment that I have written of in previous posts. Note that the Wikipedia article linked above is not very favorable to the topic and is probably not the best source of information. If you want more I’ll put you in touch with Linda if you don’t know her already. I wanted to post something before we left, but I didn’t want to tell the whole world that our house would be empty for several days.
To put it very simply for those who haven’t heard of it, CCSVI refers to a condition of narrowed jugular or azygos veins. The theory is that the slight backup of blood resulting from the narrowed veins causes iron deposits in the brain. This damages cells and triggers the autoimmune disease we call Multiple Sclerosis. There may be other veins involved as well, illustrated by what was found in Linda’s case. I’ll get to that. The treatment involves widening the veins, either through angioplasty or the use of stents where appropriate.
This is the second time Linda has been treated. The first was back in March of this year by a local interventional radiologist. That’s a whole other story. She did get some relief from that. Her eyeglass prescription had to be altered because her eyesight got better. She had better balance and clarity of thought. However, the effects were short lived. In the last couple of months she began to decline again. Two weeks before we left she began experiencing severe vertigo, which went beyond anything she had in the past.
We had a decision to make. The individual she saw here would not work with her any further. She has been trying to get physicians in this area to offer the treatment so that those who do not have the means to travel might have hope of getting it. She has not given up this mission, but she was failing fast and we needed to take action. It is our hope that the positive results from the second treatment will help to open local doors. Thus we headed out to Synergy Health Concepts in Costa Mesa to see doctors who have experience and believe in the efficacy of the procedure.
Things got off to a rough start, but everything was made right and I consider the trip a success. The support staff at Synergy could be a little better at organizing the details of the trip, but the doctors inspired confidence and everyone was friendly and helpful. On Monday we had the testing and consultation. Dr. Hewett showed us the pictures and explained what was being shown. We left on Monday feeling more comfortable about what we were doing. The driver for the medical transportation service that is contracted to handle getting people between the hotel and various facilities then took us to a peer on the beach where we looked out on the ocean and took a few pictures. Watch Facebook for those. We don’t have them up yet. There was an extra cost for the side trips, but it made the whole experience more pleasant.
Tuesday was the big day. It was Dr. Arata who performed the actual procedure at Linda’s request, as she had been conversing with him on Facebook. It was in the post-op consultation that we learned they had found something unique in their experience. She did need angioplasty in the expected places, but also had a closed renal vein that required a stent to insure that it would stay open. Blood was backing up along her spine, possibly explaining the MS lesions we knew were there from a previous MRI. The stent has been causing her some pain, but we understand that to be normal and temporary. We went back to the hotel and sat on the patio for a light lunch before retiring to the room for her to lie down. Even with the discomfort from the stent, she felt better. The vertigo was gone. Her extremities were not as prone to be cold.
On Wednesday we went back to Synergy to go over what was done, again with Dr. Hewett. We would have preferred to talk more with the doctor who performed the procedure, but we have no complaints. Dr. Hewett was very thorough in showing us what was done, explaining what we should do next, and explaining what we could reasonably expect. He showed us an example of the stent that was used and assured us that because of its placement it wasn’t going to go anywhere. Afterwards we were taken to a good seafood restaurant on the beachfront along with the other couple who had come from Canada for treatment.
Thanksgiving day was pleasant. I missed being with family, but we sure didn’t miss a good meal. The hotel put on quite a buffet. I joked that I would come back again just to get the pecan pie that night with the room service guy, and he brought us some. No doubt the fact that Linda and I had been double-tipping him inadvertently for the past couple of days helped. The day was clear and sunny in contrast to what it was like when we arrived. We walked around the grounds for a while before settling in for the evening.
We were both ready to come home when the day came. The trip home was a little better than the trip in, but not by much. The hotel couldn’t get our bill right. The airport curbside checker for American Airlines was rude. I could devote a whole post to what happened in the security line and I just might. I don’t fault the agents as much as I do the government that mandates such an unconstitutional invasion of privacy that has not stopped one terrorist.
So ended our latest mad dash in the pursuit of hope for Linda’s recovery. The dramatic results we dreamed of have not yet shown themselves. In fact she was dismayed to find she had more trouble walking after we got back than she did before we left. Yet I hold onto hope. She didn’t walk at all during the time we were there except to get to and from her seat on the airplane. That in combination with irritation from the procedure may well account for her present difficulty. I expect that she will now begin to improve, knowing that she will not give up.
I suppose we all chase hope of some kind or other. When we lose hope we lose the will to live. That is why I thank Jesus that we have a hope that goes beyond anything we face in this life. We may lose hope of healing, but we will not lose hope in Yahweh. We cannot know what this life will bring, but we can know what will happen when our lives on earth are complete. We have life in Him. Our hope does not rest on these temporal supports, but on the Rock of ages. That hope we do not have to chase. It is with us always whatever happens next. If that’s the kind of hope you are looking for, please contact me. I’d love to share it with you.
It has been quite a while since I did any serious writing here, but my intent is to change that. I’m trying to rearrange my priorities to allow time for at least one good post every weekend. That may not be important to anyone but me, but I have these wild ideas about writing something for publication some day. For that I need practice.
If you followed me on Facebook or Twitter this week you already know that the big event this week was Linda’s treatment. I didn’t’ post anything directly to the blog since the people who would be interested are in touch with me on those platforms. Linda’s procedure on Wednesday was the culmination of more than a year’s effort on her part to find someone who would be willing to do it locally. For a little background on what I’m talking about, have a look at this. Very briefly, recent findings suggest that Multiple Sclerosis may have it’s root cause in the lack of adequate blood flow through the veins leading out of the brain. Because treating MS this way is new and controversial, not many physicians know about it, fewer are willing to consider it, and fewer still are willing to try it. The results can be dramatic. A quick search for CCSVI (the acronym for the condition’s medical moniker) on YouTube will turn up first-hand testimonials by people who have been able to get it.
Linda has been working to get it done here because we know many people who do not have the option to travel elsewhere. I have to say I am very proud of her for that. We could have jumped on a plane when this first came out and flown overseas or across the country, but she stuck to her decision to see it happen right here.
Now for the obvious question, did it work? The short answer, yes. Did we see the dramatic results we were hoping for? No, but we knew that was a possibility. I considered it a more likely outcome, not because I doubted the veracity of the theory, but because I didn’t think it was reasonable that someone having the level of damage that Linda has sustained would miraculously begin running down the halls after getting the root cause of the problem fixed. Yet for some that appears to be the case, so we had high hopes.
She is doing better. Immediately she could feel her toes and move them. She feels better, thinks more clearly, and I think she moves better as well. She remains upbeat and thankful for what she has gained and what it means. Unfortunately we’re not yet getting whole-hearted support from the physicians involved, but we’re confident that God led Linda down this path and He will finish what He started. I expect that she will continue to improve, knowing her as I do. She will continue to push her limits and thus they will continue to expand now that the underlying problem is corrected. It has become very clear to me over the past few years that God rarely if ever does something the way we think it should be done. We have seen so much of His mercy and grace that I can do nothing but trust Him whatever happens next.
Many of you know that my wife has started a non-profit organization aimed at finding ways to assist people with disabilities to find and engage in the ministry to which God has called them. This remains our goal but the execution may take many forms. As anyone who has known Linda in the past year has heard, a new and promising treatment for Multiple Sclerosis has recently been discovered.
However, though many people are benefiting greatly from
the treatment, it remains unknown to most MS sufferers living in the United States. Though not a guarantee of recovery, some people have gone from wheelchairs to walking normally and lives have been saved. This is why Linda has for a season dedicated Mission Accessible to the task of publicizing the new treatment and making it accessible to people in the United States and around the world wherever they live. I’m more proud than I know how to express that she chose to delay her own procedure in order to establish a place right here in our area where others we know who cannot travel will have the opportunity to get it.
I’m publishing her “Opportunity Letter” to help get the word out and to give you an opportunity to be part of this effort. I’ve been deliberately vague about the details, because I want you to read her letter and then join us as we work to liberate hundreds of thousands of people here in the U.S. and as many as two million world wide from this progressively debilitating disease.
Click Here to read the letter. Adobe Reader required.