Showing posts with label Parkinsonism. Show all posts
Showing posts with label Parkinsonism. Show all posts

Sunday, February 13, 2011

Post #6 Results

It is now a year since Mariko received her stem cell treatment at XCell-Center in Germany. I apologize for not keeping you informed on a periodic basis over the course of the past year as promised. I'm not sure if that was due only to laziness on my part, or if the apparent lack of results from her stem cell treatment contributed. Perhaps some of each. Nevertheless, my perceptions of the results are summarized below.

My “gut” feeling is that the stem cell therapy as carried out by XCell Center was not effective. It appears to be a “one-size-fits-all” type of therapy, which begs some serious questions in the first place as to its chances of success. Most neurologists we talked with also considered the probability that the stem cells could transport themselves from the region of implantation to the area of the brain that they would be needed as unlikely. Bottom line—I think the probability that this procedure would be considered fraudulent in the U.S. is fairly high.

It should be noted, however, that Mariko and I read the same blogs, the same advertisements, the same medical information, and the same research reports, and we typically came up with different conclusions regarding the probable efficacy of the type of stem cell therapy they were performing in either China or Germany. It is difficult to say whether I would have been as positive (hopeful) about the procedure as she was if I were the one with the disease. In the end, it had to be her choice, and I was as hopeful as she, even if I remained more skeptical.

In all fairness, however, one can never be sure to what degree it might have had some positive effect because one can never completely assess the ongoing degenerative nature of the disease. It’s possible it slowed the disease, though that can’t be determined one way or the other. She was evaluated by a physical therapist before and after the therapy (4 times total), and the results there, too, were inconclusive. The data never showed a clear improvement; rather, they seem to have indicated an overall steady deterioration, although there were some flip-flops among some of the individual tests.

Additionally, the Center’s general unwillingness to share what I considered valid, up-to-date statistical information with us became suspicious, as well as their apparent unwillingness to supply us with an unedited, unbiased network of those who had received the treatment (though we acknowledge there will be some privacy issues that need to be taken into consideration). Moreover, there appears to be little follow-up on their part to gather information that might lead to valid statistics regarding the efficacy of their treatments. For example, we have never been contacted again by the Center asking us for any information regarding the effect of the treatment, perceived by us or documented by medical professionals.


I hope the above information hs been helpful, though I realize it may not have been what you were hoping to hear. Please feel free to either write or call if you would like additional information. We are always willing to share whatever information we might have.




Wednesday, February 10, 2010

Post #4 XCell-Center Treatment on Feb 4, 2010

At this time we would like to continue sharing our research and experiences related to stem cell treatments with you. This post will describe Mariko's recent stem cell treatment, while the next one will focus on our research regarding stem cell treatments in general, as well as more specific information and impressions regarding XCell-Center in Germany.

Mariko received a stem cell treatment at XCell-Center in Germany on February 4th. Bone marrow was collected on February 2nd, after which the stem cells were isolated from the bone marrow and subsequently implanted on February 4th into the cerebro-spinal fluid by lumbar puncture. Over 4 million stem cells were harvested with a vitality in excess of 90 per cent. The theory is that since the cerebro-spinal fluid circulates, the implanted stem cells are transported directly to the damaged tissue in the brain.

The procedure went well, without incident. However, there were some unexpected side-effects. Although the headache was avoided that sometimes, reportedly, accompanies the treatment, she did experience severe discomfort (severe enough to be considered pain) in the legs and buttocks for 2-3 days. And although the leg discomfort subsided after about the 3rd day, there is still some discomfort in the area of the buttocks (especially when she bends over), almost one week after treatment.

Reportedly, the beneficial effects of the treatment will likely not be felt until sometime during the 2nd or 3rd month following the stem cell implantation. We both remain hopeful there will be noticeable benefits, even though we recognize this is not a cure for the disease, and as such any continuing benefits will be limited due to the degenerative nature of the disease.

It is our objective to post results here as accurately as possible (we recognize that some of our measurement criteria will be somewhat subjective in nature) and on a periodic, somewhat regular basis (at least every 2-4 weeks). If anyone has specific questions for us, we have posted our e-mail address, and we will respond in as timely a manner as possible.

Monday, November 23, 2009

Post #3 Stem Cell Treatments

We have been researching the stem cell therapies that are being carried out in both China and Germany and are seriously considering pursuing treatment in one of those countries. Although recently we have had more contact with the XCell-Center in Germany, we are interested in hearing from anyone, especially with a neurological disease, who has already had stem cell treatments or who knows of someone who has been treated with stem cell therapies. We are interested in hearing from you, regardless of where you might have had the treatments, and regardless of the results. If you prefer writing to us directly, rather than posting below under comments, our e-mail address is fmsalveson@gmail.com.

ANY INFORMATION OR CONTACTS YOU CAN PROVIDE US WITH AT THIS STAGE IN OUR OWN SEARCH FOR ANSWERS WILL BE GREATLY APPRECIATED.

Thank you in advance.

NOTE: We will continue to make updates and changes to this blog, so please check back on at least a periodic basis. We promise that we will keep you as honestly and accurately informed of Mariko's treatment(s) and condition/progress as possible.

Thursday, November 19, 2009

Post #1 Introduction

Multiple system atrophy (MSA) is a degenerative, neurological disorder, which is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance and autonomic functions of the body. For a more extensive definition of MSA, please consider going to Wikipedia at http://en.wikipedia.org/wiki/Multiple_system_atrophy, or to NINDS (National Institute of Neurological Disorders and Stroke at http://www.ninds.nih.gov/disorders/msa/msa.htm. Other sources of information about MSA are listed in this blog's index.

There is no cure for MSA, and currently, there are no proven treatments to delay the progress of neurodegeneration in the brain. A possible "hope" for at least slowing the degeneration is stem cell therapy, which I will discuss in a separate post.

My primary purpose in writing here is to share information I have read and gathered about MSA with you. Of course, I'm also hoping this blog will be a conduit for exchanging MSA-related stories and information that might be beneficial to anyone affected by this or a related illness.

To leave a remark or to view what others have said, just click on the word "comment" at the end of each post. Alternately, if you wish to contact me directly with either information or questions, please feel free to do so. My e-mail, also listed above as an e-mail link, is fmsalveson@gmail.com.

My next post will be a brief description of my MSA history, and several related links will also follow. My husband and I look forward to an ongoing exchange of ideas and information with each of you who chooses to establish a relationship with us, either through this blog or personally through e-mails.