John Yurechko - New Member

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

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

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

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

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

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

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 welcome Regine of Germany

We have a new member and her name is Regine.

Regine developed adhesive arachnoiditis after a lumbar tap in February. Regine resides in Germany. She would appreciate anyone that would like to email her their experience with arachnoiditis.

You may email Regine at heuserre@yahoo.de

LWA

How to view Kovacik progress

We received some comments regarding where to view progress on our cofounder, Karen Kovacik. Unfortunately we made the assumption that our readers would know where to find Karen's bio.

Please understand LWA does not endorse any particular treatment. While LWA desires to make information available to all, LWA is not advocating any particular protocol.

To view Karen's progress please see http://www.lifewitharachnoiditis.com/cofounderskaren.html

In order to get to up-to-date news you must go through the bio information links. It is only fair you read the illness path prior to jumping to the progress path.

Thank you for your understanding.

LWA

Welcome Two New Members June 10, 2009

Welcome to our newest members:

Fr Stephen Petrovich - Diagnosis, adhesive arachnoiditis. Needs long term care advice and possible social worker assistance. Please write to him at ukiebishop@gmail.com

Hollie Sanderson - Diagnosis, spinal adhesive arachnoiditis. Hollie has requested support. Please write to her at email crystalblu76@aol.com

LWA

Bio Update - Cofounder

For those interested in an update on the progress of Karen Kovacik, Cofounder, please go to her bio page and see Progress Notes. Her bio has been updated reflecting progress to June 9, 2009.

Modification to American Pain Foundation Post of 6/8/09 - URGENT

Pasted in from American Pain Foundation (this is just the top portion - they are modifying yesterday's alert):

APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
Correction: We made a mistake in the Alert we sent yesterday by identifying the FDA as the “Federal Drug Administration” instead of the “Food and Drug Administration.” We apologize for the error. Please forward this alert to your networks.
The Food and Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.

Feeling Better

Hello LWA,

Challenges for us come in many forms. I have been pretty challenged lately. Busy battling an infection, and then another. Please accept my apologies for not being available. I am busy going through several hundred e-mails and blog posts. Its kind of like triage, trying to get to the urgent ones first. I will get to all of them.

I am impressed with Karen's work on keeping us posted on her treatments, and posting important news we all need to be made aware of.

This is YOUR blog. I would like to hear from anyone that has Cauda Equina Syndrome along with Adhesive Arachnoiditis. Like myself these folks have some special requirements as far a pain relief. So if you have these two diseases/disorders I would like to hear from you at jon.mchann@gmail.com

I also would like to hear from anyone who has run across data or articles linking together Arachnoiditis with M.S. or other Immune System related issues.

For those of you that are wondering from my pictures on the web page, I raise Alpacas and have had 2 boys and 1 girl added to the head count and moms and babies (crias) are all well. Thank you for your prayers during my illnesses. God bless us all as we try to live in his likeness while battling our diseases and disorders.

God Bless
Jon McHann

American Pain Foundation Alert & Call to Action!

This is pasted in from an Action Alert received today from the American Pain Foundation:

ACTION ALERT
APF URGES YOU TO READ THIS ALERT AND TAKE ACTION TODAY!
To: All individuals and organizations who care about access to pain care in America.
URGENT CALL TO ACTION!
The Federal Drug Administration (FDA) may remove important pain medications from the market or could very likely limit access to certain pain medications that are currently legally prescribed to millions of Americans suffering from pain.
The FDA needs to hear how vital access to these medications is to people with pain and what tragic results could occur if they were denied access to these medications or if additional barriers were created making access more difficult for people who are legally prescribed these medications.
ACTION REQUESTED
Send a letter to the FDA sharing your story about how their decisions would impact you or your loved one. The FDA MUST receive your letters by Tuesday, June 30th, so don’t delay.
Please review the following to assist in your letter writing and to provide further information on the issue:
Go to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=090000648095e49e for FDA comment submission page to submit your letter electronically or mail your letters to:
Division of Dockets Management (HFA305)Food and Drug Administration5630 Fishers Lane, Room 1061 Rockville, MD 20852
Please Note: All letters sent electronically or through the mail must clearly include the following information at the top of your letter: Docket No. FDA-2009-N-0143. Please send a copy of your letter to advocacy@painfoundation.org so we can also have an opportunity to hear your commentary.
Testimony of Pain Advocates at FDA Hearing, May 27th and 28th. These testimonies may also help you write your letter.
FDA's REMS Information - http://www.fda.gov/OHRMS/DOCKETS/98fr/E9-8992.htm
THANK YOU FOR SUBMITTING YOUR LETTER AND ALLOWING YOUR VOICE TO BE HEARD!
Sincerely,
American Pain Foundation