Please welcome John Yurechko of Virginia. John is 61 and has Arachnoiditis. John welcomes your contact and you may email him at John.Yurechko@gmail.com.
John's story: "I was diagnosed with arachnoiditis two months ago. I had back surgery in June 2008 for stenosis. The stenosis pain was taken care of, but approximately one month after the surgery I developed pain in glutes, hamstrings and calf muscles. I am still trying to come to grips with this; I am devastated. I did not understand some os the terminology in the article and some of the medicines (e.g. "N-Kinnase, high dose omega 3, hgh releaser (not enhancer, not a steroid), reservatrol, Robaxin." And to ask the obvious question, if this "cure" is working for you, why haven't other sufferers and doctors aware of it? Many thanks!"
Input from LWA:
John, you refer to Karen Kovacik's personal treatment and her personal bio (versus any recommendation by LWA). Karen is on a recovery path and will be in treatment long term. Her alternative route is aimed at an autoimmune system problem, not structural spine issues. It is accurate to term Karen's treatment as a "recovery path" versus "cure."
Karen's physican is an ACAM versus AMA physician and treatment is geared at helping Karen's body stop building scar tissue. Karen's protocol is undergoing rigorous examination at this time and an article will be published as to why Karen's treatment is working for her. Once the research and articles are complete, they will be posted for access by anyone that wishes to review them. The "traditional" medical establishment, as a whole, is not well versed in alternative care nor has the treatment of arachnoiditis been approached as an autoimmune disorder.
There is one study, referenced in Karen's bio, that shows a patient successfully reducing epidural fibrosis (scar tissue) by 50% over a three year period should readers wish to access it. There is also a video available on the research page on IV ascorbic acid which should really catch readers attention as to why intravenous ascorbic acid makes any difference whatsoever. We suggest interested readers access the information to better understand "why" Karen's treatment may be working for her.
Karen's treatment is her personal path and LWA does not endorse any single treatment.
LWA
Tuesday, June 30, 2009
Donna Tomczek - new member
Please welcome Donna Tomczek as a new member. Donna is from California and is 63. She has been diagnosed with arachnoiditis. Donna welcomes your email.
You may email Donna at: dtomczek@cox.net
Donna's story:
"Where do I start? I was diagnosed with Arachnoiditis in 1989 before PCs and the internet were common household products. At the time, NORD had very little information and reported fewer than 500 sufferers. The only support available was through a mailed newsletter from AISN, the Arachnoiditis Information and Support Network, which stopped due to lack of funds.It would take thousands of words to explain why I am now trying to find more information and support. Suffice it to say that I have not had the means nor the ability to use the resources available until now.I am fortunate to have an excellent pain management team that has kept me going since 1996, and I credit that team with having saved my life. However, with the lack of funds, time, etc., the medical world seems to have left information and resource gathering up to the patient. If we're lucky, we receive adequate medication and occasional counselling, but little else. I am tired of knowing as little as I do when there might be something other than my current regimen that might help me to live a better life.How do I start when there are more than 12,200 articles available? I am relatively new to computers, and am unable to sit for hours going through the good, bad, and ugly - not to mention inaccurate - information that I have seen so far. Could you recommend a course of action that will bring me up-to-date on this disease, research, treatment, and other need-to-know information? I would appreciate any and all assistance you can give me. Many thanks, Donna"
Welcome, Donna!
LWA
You may email Donna at: dtomczek@cox.net
Donna's story:
"Where do I start? I was diagnosed with Arachnoiditis in 1989 before PCs and the internet were common household products. At the time, NORD had very little information and reported fewer than 500 sufferers. The only support available was through a mailed newsletter from AISN, the Arachnoiditis Information and Support Network, which stopped due to lack of funds.It would take thousands of words to explain why I am now trying to find more information and support. Suffice it to say that I have not had the means nor the ability to use the resources available until now.I am fortunate to have an excellent pain management team that has kept me going since 1996, and I credit that team with having saved my life. However, with the lack of funds, time, etc., the medical world seems to have left information and resource gathering up to the patient. If we're lucky, we receive adequate medication and occasional counselling, but little else. I am tired of knowing as little as I do when there might be something other than my current regimen that might help me to live a better life.How do I start when there are more than 12,200 articles available? I am relatively new to computers, and am unable to sit for hours going through the good, bad, and ugly - not to mention inaccurate - information that I have seen so far. Could you recommend a course of action that will bring me up-to-date on this disease, research, treatment, and other need-to-know information? I would appreciate any and all assistance you can give me. Many thanks, Donna"
Welcome, Donna!
LWA
Jean Dargle - new member
Please welcome Jean Dargle to our group.
Jean is 41 and lives in Virginia. She has been diagnosed with arachnoditis.
You may email her at darglep@aol.com
LWA
Jean is 41 and lives in Virginia. She has been diagnosed with arachnoditis.
You may email her at darglep@aol.com
LWA
Tuesday, June 23, 2009
Sean and Cindy need our support
Sean Tarter is having more complications and in particular having severe motor control issues. Sean is desperately in need of prayer and support. If you pray, he needs prayer as never before. Any support is appreciated.
Cindy Hellman is in need of prayers and support. Her beloved service companion of ten years died unexpectedly ... losing a best friend is always very hard. Please email your support if you are able.
God bless you all ....
Karen Kovacik
Cindy Hellman is in need of prayers and support. Her beloved service companion of ten years died unexpectedly ... losing a best friend is always very hard. Please email your support if you are able.
God bless you all ....
Karen Kovacik
New member June 23, 2009
New member:
Aaron Rabin
Email aaronrabin3@gmail.com
California - Age 45
Diagnosis - Arachnoiditis
Please drop Aaron an email if you are able.
Thanks.
LWA
Aaron Rabin
Email aaronrabin3@gmail.com
California - Age 45
Diagnosis - Arachnoiditis
Please drop Aaron an email if you are able.
Thanks.
LWA
Monday, June 22, 2009
Two new members 6/22/09 - They need SUPPORT!
Two new members today:
Linda Alubicki-Freymuth, email linda_freymuth@yahoo.com - Connecticutt, age 53. Diagnosed with arachnoiditis, failed back surgery, spondylilosthesis. Linda states: I would like to fine a good pain management provider. Presently having a bad episode with extreme pain. Went to an area hospital last night for help. Following an MRI, I was given a script for 2mg dilaudid and 10mg of flexeril. However the pain is almost unbearable. Without something else I fear I will be back to the hospital tonight. Anyone have any suggestions? I have had five back surgeries, last one was the fusion at L4-5 L5-S1. I can't sleep, basically bedridden at the moment. Physically and mentally, I feel totally drained and alone.
Rita Airozo, email ritaairozo@yahoo.com - Colorado, Age 54. Diagnosis: chronic arachnoiditis. Rita states: I am on my second admition into the hospital with extreme foot and toe pain. It is nerve pain shooting, buring, etc... An MRI shows the arachnoiditis and I am sure this is causing this excrchiating pain. I cannot stand to sit with my feet down or to barely walk. Uneven tile feels like a bed of nails under my feet.
Please email these new members to provide whatever support you can offer.
Thank you.
LWA
Linda Alubicki-Freymuth, email linda_freymuth@yahoo.com - Connecticutt, age 53. Diagnosed with arachnoiditis, failed back surgery, spondylilosthesis. Linda states: I would like to fine a good pain management provider. Presently having a bad episode with extreme pain. Went to an area hospital last night for help. Following an MRI, I was given a script for 2mg dilaudid and 10mg of flexeril. However the pain is almost unbearable. Without something else I fear I will be back to the hospital tonight. Anyone have any suggestions? I have had five back surgeries, last one was the fusion at L4-5 L5-S1. I can't sleep, basically bedridden at the moment. Physically and mentally, I feel totally drained and alone.
Rita Airozo, email ritaairozo@yahoo.com - Colorado, Age 54. Diagnosis: chronic arachnoiditis. Rita states: I am on my second admition into the hospital with extreme foot and toe pain. It is nerve pain shooting, buring, etc... An MRI shows the arachnoiditis and I am sure this is causing this excrchiating pain. I cannot stand to sit with my feet down or to barely walk. Uneven tile feels like a bed of nails under my feet.
Please email these new members to provide whatever support you can offer.
Thank you.
LWA
Saturday, June 20, 2009
New member from California
Audrey Englert of California is a new member. You may email her at audwood65@hotmail.com. Audrey has lumbar adhesive arachnoiditis. She has requsted information regarding the progression of adhesive arachnoiditis plus information on what medications and injections are being used.
Please drop Audrey an email.
Welcome, Audrey.
LWA
Please drop Audrey an email.
Welcome, Audrey.
LWA
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