Update from Tennessee patient on Kovacik Protocol

Pasting in email received from Connie in Tennessee. This was sent on Dec. 2, 2009 and just picked up by Karen Kovacik, today, Dec. 3, 2009:

Connie sent you a message.

Subject: latest treatment

"Hi! Karen - Just wanted to send you a quick note to let you know that the Vit. C - Mag - GSH treatment that I got on Mon. pm was the best treatment yet - relief was almost immediate & it has continued thru today. I'll get the PK protocol tomorrow. Tell Dr. Holsworth that he's the greatest - you too, for allowing me to be included in the trial. I walked 3 miles today."

Accidentally deleted Wendy's comment

Wendy,

Could you please resubmit your comment to Gregg's post? We accidentally deleted it.

Thank you, Wendy!

LWA

Eric Drew

Please welcome Eric Drew. Eric's email address is eric@ericdrew.com.

Eric says:

"I have been recently diagnosed, so I am just learning about the disease."

Welcome Eric. Please reach out to our membership with questions. Visit our Facebook at Life With Arachnoiditis for face to face interaction with others.

LWA

Sherri Crider

Please welcome Sherri Crider. Sherri's email address is dscrider@att.net. Sherri says:

"I have AA and am seeking information. Thank you."

Sherri, welcome to our group. Please feel free to email others for more information. Our Facebook is becoming more popular and is a way to interact with others face to face. You can find us at Facebook and search for Life With Arachnoiditis.

LWA

Jacqueline Fox of Cambridgeshire England

Please welcome Jacqueline Fox from Cambridgeshire England. Her email address is: silver_fox1410@hotmail.com

Jacqueline says:

"I'm with the NHS UK. Hello there, I developed Arachnoiditis, after my Dura-mater was accidentally cut during a back op, in 2000. Since then I've been controlled resonably with Gabapentin/Tylex & Volterol. I am now on the maximum dose of Gabapentin, wondering if any other treatments or drugs out there? Regards Jacqueline"

Welcome Jacqueline. Please reach out and email others and be sure to visit our Facebook where you can "see" and interact with others.

LWA

Rosy of Texas

Please welcome Rosy of Texas. Rosy's email address is rosy457@yahoo.com.

Rosy says:

"I need tips on managing the pain."

Welcome to LWA, Rosy. Please reach out and email others that have listed their email address. We are here for you.

LWA

Derek from Australia

Please welcome Derek from Australia. Derek's email address is:
aussie_redback66@yahoo.com.au

Derek's diagnosis is: Chemically Induced Adhesive Arachnoiditis caused by the contrast medium used being too toxic for human use, also arachnoiditis and fibrosis.

Welcome to our group, Derek.

LWA

Anna Morgan

Please welcome Anna Morgan of Florida. Anna's emails is annathea25@gmaail.com

Anna says:

"Arachnoiditis was featured on an MRI taken in 1995. I had had four laminectomies and then had a 4 level fusion (L-4 - S-1). I also had 2 myelograms in the 1970's. After the fusion I hAd a year and a half of relief, then I had unrelenting pain which required large amounts of prescription pain killers. In 2002 I was lucky enough to receive an intrathecal pain pump, which changed my life. This horrible disease forced me to neglect my family and ended my career. I have a Master's degree in education and had taught for 27 years. Two years ago I received my SS Disability on the first request. Today I live the best I can with a fantastic husband and daughter. They are the world's best at understanding and helping. I also have complete foot drop in my left foot."

Input from Patient on Kovacik Protocol

Hello! My name is Connie Keeler and I'm the patient from Tennessee that visited Karen and Dr. Holsworth for 10 days. I had a wonderful time walking with Karen each morning and seeing Dr. Holsworth for the treatments. I've been back home for one week and have been able to continue my treatments. I have been able to decrease the amount of pain medicine that I take by 25% and I'm sleeping better. I can't say enough good things about Dr. Holsworth and the protocol that Karen and I are on. My doctor in Tennessee has been able to communicate with Dr. Holsworth and supported my trip to Colorado and is ordering the same treatments for me in TN. I am very excited about my improvement. I would encourage any one with arachnoiditis to consider getting in touch with Dr. Holsworth and going to see him so that you too may also receive the treatments and begin to fell better. I feel that I have received an early Christmas present. God does wonderful things through his special angels (Karen & Dr. Holsworth)!

Patient from Tennessee

There is another patient on the exact Karen Kovacik protocol. A patient visited Colorado, undergoing treatment with Dr. Holsworth for two weeks in November. This patient also experienced improvement while undergoing therapy. Patient wrote after returning home to Tennessee that she continues to improve after each treatment.

This particular patient never had back surgery but did have many ESI's. Patient was diagnosed with arachnoiditis in May 2009.

We have asked this patient to publish her experience. Things don't always move fast when you have arachnoiditis, so her story make take some time.

Karen Kovacik, LWA

Update on Karen Kovacik

Progress Updated to November 27, 2009:

I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising and I am narcotic free now for over 6 months. Diazepam free just about 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. Made 4.6 miles handily and it may be time to look at titrating off robaxin.

For a few months now I have had twice weekly therapy. The ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. Dr. Holsworth also added a glutathione push (GSH) after each C/mag IV and it has worked beautifully. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water.

Almost all leg nerve pain is gone ... most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart! The past few weeks I can crawl into bed at night without pain creeping in after a few minutes .... and I mean *no* pain. I've teasingly told Dr. Holsworth, "If I get any better, you won't be able to stand me!" I am so thankful and so very humbled by the progress we've made. What a gift to have Dr. Holsworth on my team.

To stay updated on my activities, send me a friend request on Facebook. Look up Karen Kovacik and in your friend request message box please identify yourself as having read my profile on Life With Arachnoiditis.

Go to www.acam.org to learn more about alternative medicine.  I've learned the "impossible just takes longer!" I am very close to having my life back ... it will be a life long journey I believe.

God bless you all. Please don't hesitate to contact me if you need anything.

Karen

Welcome Brian Heilmann

Please welcome Brian Heilmann of Arizona. His email is sentinel50@frontiernet.net. He has been diagnosed with arachnoiditis and has had surgeries in 91, 96, 99, and 07.

Brian says:

"I use to be a Special Ops Member for the USDOJ until I was in a repelling accident 1991. I had a discectomy and it was ok until I got injured on the job again. Laminectomy in 1996; and then Instrumentation 1999 and retirement. In 2007 I had a failed attempt to put a SCS in my back. Too much scare tissue so Percacet and Lyrica. I still have tremendous pain I am getting very tired of it. I am interested in exercise and the vitamin regements suggested in the lead article by KK. thank you Brian Heilmann"

Welcome Gregg

Please welcome Gregg Newman. Gregg's email is greggoo7@aol.com. He is from Pennsylvania and has been diagnosed with arachnoiditis and failed back surgery syndrome.

Gregg says:

"I have had 7 lumbar surgeries over the years. I am now experiencing severe pain, throbing, electrical shooting, numbness, tingling, burning, freezing cold and many other horribly debilitating sensations in both my legs and feet all the time. I was wondering if anyone else has these very painful symptoms and what do they do for relief of them. I've heard Neurontin works well, is there any thing else? Is anyone using Neurontin successfully? What strength are you using? What about those experimental drugs? I would like to be in the trial if possible. Please help me. My pain and other symptoms are getting progressively worse."

Welcome Mary-Ann

Please welcome Mary-Ann Brewster-Leroy of South Africa. Her diagnosis is arachnoiditis. Email her at mary-annb@xsinet.co.za

Mary-Ann says:

"I have just been diagnosed with arachnoiditis and have looked on
the internet for articles. I feel very frightened as the doctor who
diagnosed me let the phsyiotherapist tell me then he left for overseas.
I am 58 years old and normally nothing knocks me down but this is just too
much.How does this progress? Is it quick or is it over many years. I need
to prepare my future life.
My husband is 84 years old and my daughter and family leave for Austrailia
soon then I have no-one.I am so frightened."

Welcome Candi White

Please welcome Candi White of Florida. Candi's diagnosis is epidural fibrosis, fibromyalgia, brachial neuritis or radiculitis. Candi's email address is
candee2b@aol.com

Candi says:
"i am 44 years old. my first surgery was 13 yrs ago, a discectomy for a ruptured disc. my second surgery was 21 months ago, a interbody lumbar fusion with instramentation at L-5 and S-1. i did great until 5 months after surgery, i started feeling alot of pain, kept getting worse, tried pt, made it worse. i was diagnosed with severe epidural fibrosis of the L-5 and S-1 nerves. i have tried epidural injections and am now on pain managment with narcotics. i am in pain all the time and have to walk with a cane most of the time. when i go shopping, i have to go wherever there are scooters. i cannot pick up or do many things with my 2 year old grandson. i also have a herniated disc pressing on my spinal cord at C-4 and C-5 which caused chronic pain, headaches and my arms to constantly fall asleep. i drop things all the time. i also have just recently been diagnosed with fibro myalgia and am on cymbalta. can't take lyrica, makes me feel drunk. Thank the lord for my husband!
, he is the most understanding, wonderful loving man in the world and i could not get through this without him. there is nothing they can do so i try to deal with this the best i can. i applied for disability one year ago, they denied me two times. i have a lawyer and we filed an appeal 7 months ago. just waiting. before all this happened, i was a regional manager of one of the largest appraisal companies in florida. now i can't sit for more than 15 min, stand for more that 5 and cannot walk very far. there is nothing i can do for work and my husband is doing all he can. the medical bills are killing us. i have great faith in the lord and know this is happening for a reason, i just don't know what it is yet. thanks for listening. i pray for a miricle."

Message from Jon McHann, Cofounder

Jon sent in a message and asked if we would post it for readership:

I have great admiration for Dr. Jones. When I was first diagnosed, her published work was the first thing I ever read on A.A. and I use her work constantly as a resource. I have recomended her work to every single person I have responded to through LWA and privately. OUTSTANDING!!!!!

Life has really slowed down for me. Pain dictates what I do and how fast it gets done. I only go to town now for appointments, and I have days when I cant take very good care of myself. I try to get out and walk with my animals once per day. Most of the time I get out to the barn, sit in the doorway where I have a chair. And hold court with a pail of cracked corn. I have not even been able to get to church for months now.

I am planning a trip to Huntsville, AL. to see my "local" leading neurosurgeon. We will talk about what can be done surgically for long term pain relief. My body is having a real hard time processing medications. So I now live in high pain 24/7. I am open to what he may have to offer, but I am not expecting anything. Deteriorating disease in my Cauda Equina is progressing, and of couse my lumbar AA just above that is constantly agitated due to that deterioration. I have lost all feeling in my pelvic area, and dowm both legs to my knees, then constant pain from my knees down. Any vibration sets off the A.A. symptoms. I spend most of my time sleeping in 2 hour periods all day. Bladder and bowel issues take up a fair bit of time.

Computer time for me is now down to a half hour a day a best. I dont even open alot of mail that contains humor type stuff as I don't want to waste my time, when I could be writting a letter like this one. Karen I am so proud of how you have carried on. The only thing I would like to see is possibly a closer knit membership. But that will come in time as we (LWA) is still young. I am fading fast here Karen, would you be so kind as to post this to F.B. for me and the LWA site. I am writing you personally first! It may be nice to use this as an update for folks as I "dont get out much anymore".

The relationship with God and his son, my saviour keeps me positive and in my trenches doing my battle every day. There is no way I would be here enjoying my animals, a great relationship with my wife and family without Jesus by my side.

God Bless You and all LWA members
Jon McHann

Diane Hardman and David Bolnick

Please welcome Diane and David. Their information follows.

David Bolnick of Nevada, email bolnick@kkb-law.com. David says:
"I had a left-sided hemilaminectomy, foraminotomy, and medial facetectomy at L5-S1.

I had a great deal of left radicular leg pain after the surgery, which pain resolved 6 months after surgery, but for only 3 weeks. The pain then returned and got progressively worse.

I am now 8 months post-op. My surgeon says that the continued pain is caused by a disc which is impinging on the nerve root and denies that it is caused by E.F., although my post-operative MRI states "minimal epidural scarring and fibrosis along the left lateral aspect of the spinal canal extending out the L5-S1 foramen."

I am now on ibuprofen, lyrica, amyltriptyoline, welbutron, and hydrocodone, and the pain is worse now then it was before the surgery.

I read all of the biographies of the co-founders of your organization and I commend you all for your bravery and fortitude in the light of your very painful ordeals.

Kindest regards.

David Bolnick

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Diane Hardman of Pennsylvania, email hardman3@netscape.com. Diane says;

Article or Research to Submit?: "No, but I have been looking into the fact that allot of us have had Depo-Medrol used during spinal operations."

"I had a Laminectomy on my L3/l4 and L/5 a partial discetomy in May of 08. That was after having gone through P/T and then they tried Epidural shots in my spine but I had a bad reaction. Only 1 other time did I have a reaction and that was through oral presidone but we found that I am allergic to all Steroids only other option was surgery. First surgery I thought went well my legs didn't fell as bad as they did when I first came in 2 days after op went home that night noticed leakage and started to get headache, I was told that I may have some so didn't pay attion to it. Next morning I woke up saturated in what looked like pink fluid, called husband at work then called doctors office no one called back they were gone it was a weekend, finally had one of my Dr.'s associates call me and said if it bothers me to sit up then to have someone take me to hosp. ER, Hubby came home and off we went. ER was busy and I was about to faint when they let me in to lay on one!
of their tables, after that I woke up in hosp. room. They didn't fix it till 3 days when my dr. usually does operations during that time I was on strict order not to move and not traveling to bathroom. Long story short he had to reopen suture tear in spinal cord clean up field and close. When I was allowed to get up pain was 100X worse than the beginning. Did the P/T thing again 1st in water which helped than land and water, land sucked. after awhile @4-5 mos. told dr. that something must be wrong felt like back wants to break in 2 pieces. He ordered a new MRI then said there was nothing much he could do and dropped me. Well I was still in severe pain went to see a neurosurgeon and he sent me out for a series of tests MRI,xrays of spin forward and backward and a Spect Scan. That's when I was diagnosed with all these things now wrong with me. I have lost 60 lbs., can hardly shower and change myself, new trick my legs give out and I fall alot (just broke ankle 2 days ago) and my arm strength is nill cannot pick or pull myself up anymore.
I feel like my body is wasting away, my eyesight is shot can't get a right script for glasses, my fingers and feet fell pins and needles and bunched up socks on my toes that even without socks and I do not trust my doctor anymore it seams he and the first doctor use to run a practice together and the last time I saw him he said not to make any appointments unless my Pain Management doctor orders it. Sorry about the book I must go and lay down now this was way too long.
Diane"

Rebecca's Provider

Rebecca Lockley, email; lockleyhouse@yahoo.com, would like to suggest her provider:

"I am currently a patient of Dr Todd Sitzman in Hattiesburg Ms and I would recommend him to anybody."

Welcome Michael and Deb

Please welcome Michael Soares of Colorado. Michael's email address is scoares@yahoo.com. Michael would like to suggest a provider, Dr. Scott Hompland, DO, of Denver, Colorado for pain management.

Also welcome Deb of California. Her email is dophindeb@sbcglobal.net. Deb says:
"I am new to absorbing the reality of my arachnoiditis diagnosis, and my new doctor is avoiding giving me information. My entire lumbar spine is fused after 3 surgeries that started 7 years ago. My challenge is trying to get my needs met with my "insurance coverage" with workman's comp. So, I'd appreciate any contact with someone experienced with work comp barriers. I was also just "awarded" Social Security Disability money that I'll be living on the rest of my life.....and it's not very much. I have no one to move in with, live alone in a big house on 14 acres, and am scared on so many levels."

From LWA: Please visit our members page and reach out to other members for more information. Also be sure to visit our Facebook page.

Michelle needs our help

Welcoming New Members:

Michelle Knapp of Connecticut. Michelle's email is jmsns1989@aol.com. Michelle says:
"I am looking for any and all information I can collect about what I have been diagnosed with. I am confused, because from what I have read, all of the treatments that I have been put through seem to make things so much worse, yet doctor after doctor seem to make me repeat all of the same things over and over again. October 13,2009 will be one year that I have been experiencing my symptoms.

I suddenly awoke at 3am to being completely numb from the waist down, once I changed position, I got "pins and needles" and the feeling came back slowly. I went back to sleep and when I woke up that morning I was struck with some of the worst pain I ever felt in my life, to this day I am still in pain, there seems to be no relief ever.. I am afraid of becoming depressed.. I have so much difficulty even doing simple daily tasks like laundry for my children, I am no longer able to go out for walks and play with my kids.. I am losing hope.. I am scared, and feel very much alone.

My husband of 10 years is very supportive, although I still feel that no one understands and I need to hide my pain so as not to upset my family. I have been taking pain killers for months, I try to limit myself taking them so as not to become dependent on them. However; there are days that I simply cannot muster the strength to get out of bed without them.

I do not understand how or why this happened to me, I went the majority of my life without ever having any sort of serious injury or illness. The most I have had was a common cold and an occasional flu. How does one simply wake up with this one morning?

I am going to start a third round of physical therapy tomorrow. I am afraid of it, because the last two rounds caused me to become so overwhelmed with pain I lost conciousness on more than one occasion. My life is falling apart, my children are suffering right along with me because they do not have the mother that they did one year ago... and they do not understand where she went! I feel I am going to become more and more of a burden on my husband and parents. I have always been an active self supporter, very upbeat and positive.. and now I feel as though I may be heading towards a serious downward spiral. I need someone who understands what I am going through, someone to tell me how to regain my spirit. Please help me!"

From LWA: Michelle, please go to our members page and reach out to other members. Also sign up on our Facebook page. You are not alone.

Welcoming New Members

Michael of Pennsylvania: Michael's father has Arachnoiditis. You may email Michael at levenson.michael@gmail.com. Michael says:

"My father was diagnosed with this disease over 20 years ago.

I recently have been encouraging my father to try a holistic approach to fighting this disease. Currently he is hesitant, as there is no information to support this approach. Coming across your website, is exactly what I need.

It is amazing to read your success stories and I look forward to reading more.

If you have any suggestions, please feel free to email me.

Happy healthy days ahead.

Michael Levenson"

**********

Raina Yarroch of Alabama. You may email Raina at raina.yarroch@gmail.com. Raina says:

"I would like to get in touch with the Doctor that is treating Karen and talk to him. I am a nurse and would like to know the treatment Karen is taking so that I may try it.

Thank you,
Raina"

**********

Below is the information submitted on Sep-20-2009 12:16 EST
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Joan Bernard of Connecticut. You may email Joan at joanb800@yahoo.com. Joan says:

"I have had adhesive arachnoiditis since at least 1990. I was diagnosed with class 3 AA in 1995 and was told that I would be paraplegic but avoided this with acupuncture, diet, vitamin therapy and keeping as active as possible, however I had a full spinal mylelogram, lumbar, thoracic, cervical and brain in 1987. I had a bad epidural in October 2008 that caused me to go into a severe flare which by 3'09 had me paralyzed in lower extremities from hip down and caused non stop severe spasms in legs, back, neck, arms and forehead as well as 10+ pain and headaches. Acupuncture has freed the left side partially but right still paralyzed leaving me bedridden with a large L5/S1 'cyst'"

**********

Ted, Connie, Stephen

Please welcome our new registrants:

Ted Hochman of New Jersey. Ted has a friend with arachnoiditis. You may email Ted at TedHochman@yahoo.com

Connie Benitou of California. Email benitou@sbcglobal.net. Connie would love to be contacted with anything hopeful. Connie says:
"Feeling very afraid, hopeless. Want to know of any meds/treatments, etc. people have found useful. Anyone experienced implantations for Arachnoiditis? Looking for ways to get through the day. Thanks."

Stephen O'Rourke of New South Wales, Australia. Stephen says:
"I was diagnosed with arachnoiditis about three years ago after about thirty years of back problems. When I read the list of possible causes I ticked nearly all the boxes. Oil and acrylic based myleograms, two laminectomies for ruptured discs, a couple of bad falls in my twenties and playing rugby football in my teens. I have had to stop doing pilates because of pain coming from irritated nerves and am unable to walk for long as my feet are numb and stiff in the joints.

I have a good physiotherapist who keeps joints relatively free and have had success with cortesone injections although I now wonder whether they are part of the problem.

I take oxy-contin slow release and short acting, and lyrica and get some relief although it is not really effective as a life situation. I also use prednisolone from time to time to have a 'normal' day but the payback is bad sleep and the desire to overeat.

In November when my last child finishes school I shall go to an ayurvedic centre in Kerala, south India to see what it can offer.

I no longer work for money having spent my working life in theatre, film and television and have a 'life project' in study Asia before the arrival of the Europeans and immediately after.

I am very unfit as exercise always aggravates the pain and am unable to sit for long and write. I am turning into a grumpy old man which is very boring for those around me. I have done quite a lot of psychological work on myself and have some understanding of how I operate.

I was pleased to come across this web page and hope I may learn from others and contribute something my self. I am married with two girls in their thirties and an 18year old son. My wife works internationally in the movie business and is quite supportive of my situation but like most people believes there must be something I 'can do to change things'."

Anna needs help

Anna Wright wrote in:

"I've been battling non-stop burning, stabbing, shooting pain in my lower spine since March of 2009. I had to go in for a spinal tap on 3/21/09 because the doctors found abnormal white matter on the right side of my brain. They thought I had MS or LUPUS, which it turns out I don't have either.

Since the spinal tap I have been going through non stop intense burning, stabbing, shooting pain in my spine and it shoots down in my legs. I can't sit for a very long time, it's very tender and its worse to sit. I have seen several acupuncturists, chiropractors, neurologists. I have been doing my own research and believe I have this disease.

I would love to know what is my next step. please help me..."

Ann's email address is: foxiemiss_82@yahoo.com

Request from Paula (Maine)

Paula's email address is: lumbpaula@gmail.com

Paula says:

"I was diagnosed with thoracic, idiopathic syringomyelia in 8/08, with two thoracic syrinxes (upper and a long lower one) that during the course of 8 months "grew" together. No one in Maine either knew what the diagnosis was or had so little experience of exposure to it that I had to search in Boston for a knowledgeable group of neurosurgeons...luckily finding a group and doctor at Tufts Medical Center.

Surgery occurred in 6/08 and at that time they "discovered" that I had adhesive arachnoiditis that had literally "banded" itself around the entire upper part of my syrinx. They got to the spine with a laminectomy from T2-6, lysis of adhesions, and then did a duraplasty along the entire length of T2-6 to widen the spinal cord canal, hopefully freeing up the flow (with the removal of the adhesions), and, God willing, over time the syrinx will collapse.

However, I am guardedly optimistic and hope that the adhesive arachnoiditis doesn't glob up my spine with even more scar tissue.

Is there anyone out there with similar history or experience, and can you share your story with me?"

Connie Keeler request

LWA received an email from Connie Keeler this morning. Connie's email address is cmkeeler@comcast.net and she resides in Tennessee.

Connie says:

"I was diagnosed with Arachnoiditis after an MRI 5/2009. I've had back problems for over 25 years & have received multiple steroid injections, but never any back surgery. Now I'm trying to learn everything I can about Arachnoiditis so that I can deal with this new & rare diagnosis."

LWA: Please respond to Connie. Thanks.

Welcome Sandie

Please welcome Sandie Buckley. Sandie lives in Massachusetts and her email address is Sandiebuck37@aol.com

LWA

Welcome Patricia Uhl

Please welcome Patricia Uhl. Patricia lives in Pennsylvania and her email address is yuletide@echoes.net.

Patricia says:

"Please help me find help with this horrible disease. I live in North East, Pa. and there is really not one doctor here who understands this problem. I have other problems such as extreme scar tissue neuropathy. I need a doctor who understands and can treat this disease. I now have kidney stones and other painful issues.

Please help me make my way thru this awful situation. I have no life .....I can hardly leave my home. Thank you for any information you can provide. I have had this condition for 6 years.

Patty"

From LWA - Patty, please reach out to anyone on our members' page listing an email address.

Welcome Garry Harvey

Please welcome Garry Harvey. Garry lives in North Carolina and his email address is garryharvey@triad.rr.com.

Garry says:

"What is this new IV treatment I read about on your blog? My partner was diagnosed with arachnoiditis almost 14 years ago. He has intrathecal pump but doctor is not providing dosage needed to control pain. On some days he takes as many as 18 vicodin and even this doesn't help. Thanks for any suggestions. Garry"

Welcome, Garry.

LWA

Input re newest IV therapy patient

This short message was received two days after this patient's first IV therapy:

"My Mom had her first good night in a long time last night. No pain. She is hopeful, as you can well imagine. I hope that Dr. Holsworth is getting together the plan as he said he would. We are on a roll. May try to change time. I will let you know. Thanks!"

From: Denver patient's family receiving therapy in Monte Vista, Colorado.

Welcome Cheryl Burnett

Please welcome Cheryl Burnett, of Florida. Cheryl would love to hear from members. Her email is burnettnowak@embarqmail.com.

Welcome to our Life With Arachnoiditis group, Cheryl!

LWA

New IV Therapy Patient's Input

Copying in the text from letter received today from the daughter of arachnoiditis patient (Cookie, in her 80's!) from Denver, Colorado. They flew from Denver, Colorado into Alamosa, Colorado on Tuesday for a consultation with Dr. Holsworth and this patient had her first IV therapy treatment:
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Karen,

Thrilled that we had the opportunity to meet and visit with you. You are so smart, a phenomenal role model and will always hold a special place in our hearts. Seeing you in your present state and knowing what you have gone through to get there, is astounding. The whole thing does seem to be miraculous....but, through you alone, Dr. Holsworth has proven to be just that; a miracle worker.

He is certainly a brilliant man and we feel so fortunate to have had the privilege of spending time in his company (and yours!) and listening to his unique and positive perspective. Up until now all we have heard is negativity; pain pills, more pain pills and incurable. The fact that Dr. Holsworth was a scientist before becoming a doctor gives him an ability that most Doctors do not possess. His knowledge and thought process far succeeds anything I have ever encountered in the medical world.

Of course, it is way too soon to tell if this protocol will be as miraculous for Mother as it has been for you. But, at least we have SOMETHING that looks promising (that is non-invasive and harmless!)....and the fact that the Doctor said, if this combination does not do the trick, there are many others to try. How amazing is that?

We will be coming next week to get Mom's second treatment and will get the necessary information from Dr. Holsworth as to who he recommends we see in Denver to carry out his plan. He appears to be very forthcoming and willing to share his ideas with other doctors closer to our home. To me that is not only a humble doctor, but a remarkably caring person.

Thank you for taking the time to tell your story online and make yourself available to those who need to hear it. And, too, thank you for the time and effort you put forth to come to the clinic, meet us and be an integral part of our experience. Most of all, thank you for giving Mother hope......if nothing more. Yesterday I saw a very happy lady, because of you. If it were not for your reaching out, we would be in the same place that we have been for a long while. Thank you just doesn't touch it....."You," as my Mother put so beautifully, "are our angel."

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Please direct correspondence to info@lifewitharachnoiditis.com or if you wish to write to Karen directly you may email her at kkovacik12@netzero.com

LWA is on Facebook under Life with Arachnoiditis. We invite you to become a fan. You may participate in discussion groups on that page or start a new discussion of your own.

LWA

Please welcome Vicki

Please welcome our new member, Vickie C, of Nevada. Vicki would love to hear from you. her email address is macpeanut@gmail.com.

Vicki says:

"I'm using Suboxone now for pain relief until I undergo a spinal stimulator trial in September. I have really weird symptoms, like I break out into nasty ice cold sweats all over, strange sensations in my legs and buttocks, urological control issues too. I wanted to recommend Suboxone for those people wanting to get off heavy opiates and have a quality of life. I am able to drive, read, converse, be a part of my family, whereas on 180 mg oxycontin a day I was pretty much a veg. Thanks--Vickie"

LWA

Three Patients undergoing IV therapy - another soon

This is a short update on IV therapy.

To date, three patients are undergoing IV therapy at one level or another. ALL have shown some level of improvement in pain level upon administration of the IV protocol. Not all have been able to obtain regular treatment within the United States and European medical system. The largest obstacle seems to be the awareness of the reasons why the protocol can help as well as lack of physician knowledge of basic chemistry and biology!!

A new patient is scheduled to begin IV therapy today in Colorado. Karen Kovacik is meeting with this patient and their family this morning. We will report back as we know how this patient reacts to IV therapy.

PLEASE, your prayers for guidance and enlightenment are needed in this quest. As you must know, this is new and we need a true break. Nothing else is working ..... anything that has a chance at improving quality of life needs exploration.

Our experimental group is soon to be N=4.

Your *positive* comments are welcomed and INVITED.

LWA

From Karen Kovacik: "Personal replies and input may be sent to Karen at kkovacik12@netzero.com - Please REMEMBER, I am an AA patient as well with the same struggles you experience. I will NOT respond to any negative email. It is a full time job to keep up with AA patients that write me personally. It is my mission to offer hope to each and everyone reaching out to me. We must find answers!"

Please welcome Connie Keeler

Please welcome "Connie" Keeler of Tennessee. Connie's email address is cmkeeler@camcast.net

Connie says:

"I have just been diagnosed with arachnoiditis - felt to be caused by intrathecal steroid injections for post herpatic neuralgia. I'm having trouble finding information about treatment and prognosis. My neurologist has never seen or treated anyone with arachnoiditis; and knows of no MD that has. I'm searching for answers."

LWA

Welcome Pet Campbell

Welcome our new member, Pet Campbell. Pet resides in Florida and her email address is: petcampbel@gmail.com

Pet's spouse has arachnoiditis, osteomyelitis and diskitis.

Pet would love to hear from members.

LWA

Welcome new member, Suzie

Please welcome Suzie of California. Her email address is healthinfo2468@aol.com.

Welcome, Suzie.

LWA

Welcome Carl Fisher

Please join us in welcoming Carl Fisher of Ohio.

Carl's email address is c1fisher@hotmail.com

LWA

Welcome Alex Parou

Please welcome Alex Parou. Alex resides in Pennsylvania and his email address is parou254@comcast.net

Alex says:

"I have just been diagnosed with arachnoiditis and have had two previous back surgeries in the same area. My pain is slowly getting worse and would like to know what options for pain management are available?"

LWA

Welcome Joe White

Please welcome Joe White of Pennsylvania. Joe's email address is jgtxjoe@aol.comm. Joe would like to hear from other members.

Joe says:

"I am 50 years old. I have been fighting back issues since I was 17. I was born with Spinal Stenosis. I have had 4 back surgeries last one with fusion all in the last four years. Now fighting Adhesive Arachnoiditus. Have been trying pain meds for 8 months. Up to a 75mcg Fentanyl Patch now. Also taking Percoset, Ibupropin 800mg (3/day), and Nortryptolene, for break through pain. Still spend most days lying down or in bed.

Dr has prescribed the Medtronics Mophine pump. I have heard mixed reviews. Would anyone like yo tell me their experience with them. I have had the psychological exam and all is OK. It is up to me now.

Any feedback is greatly appreciated.

God bless you all!!!!!Hope you have many good days!!!!"

LWA

Welcome Carla Rae Caswell

Please welcome our new member, Carla Rae Caswell, of Wyoming.

Carla's email address is snuggles@rangeweb.net

Carla wishes to be contacted by email.

Welcome, Carla.

LWA

Welcome Dr. Grace Brame

Dr. Grace Brame of Delaware has a friend with Arachnoiditis. Dr. Brame's email address is grace@gracebrame.com

Grace says:

"My friend has ARACHNOIDITIS. After 9 years following a laminectomy, my friend finally received the diagnosis of Arachnoiditis. She is in constant, terrible pain, and her doctor will give her only 1/3 of the normal prescribed amount of controlled medicine. (He says it might hurt her heart. Another knowledgeable person says he does not want to be investigated by the government.)

WHAT ARE THE BEST MEDICINES OTHER THAN NARCOTICS that will not make her sleepy?

WHERE IS THE BEST PLACE/DOCTOR TO GO TO? - I am investigating Dr. J. Antonio Aldrete in Birmingham, AL who wrote the book: ARACHNOIDITIS: THE SILENT EPIDEMIC. I am also looking at the Cleveland Clinic, Duke University Medical Research, and Washington University in St. Louis. There is also a place in Maryland which I intend to find. We live in Wilmington, Delaware.

We are looking for a doctor who will tend her case comprehensively, speaking to or reading the reports of all those who are attempting to assist her with her 8 to 9 constant pain level.

MY DEEP THANKS to anyone who really can help.

I cannot afford to just chat because I must get my work done. (I am an academician, not a medical doctor.)

Blessing, GB"

LWA

Welcome new member - Traci Daniels

Please welcome Traci Daniels, email tracee42870@yahoo.com. Traci lives in Ohio.

Traci states:

"Just newly diagnosed with Arachnoiditis, actually go see the doctor on Aug 18th. The ortho doctor that sent me for the MRI and then another MRI is referring me to Dr Deshpande. I have only read about this disease, have not actually sat down with any doctor yet.

I'm really scared and unsure what my future holds. I'm trying to stay positive and praying everything will be okay."

Please feel free to email Traci.

LWA

Kovacik Update

Co-Founder, Karen Kovacik, has an update to August 11, 2009 on her Progress Page which is found on the 3rd page of her bio at http://www.lifewitharachnoiditis.com/cofounderskaren3.html

There is also information posted on that page on how to contact Karen personally through Facebook.

LWA

New members

LWA has new members. We will be posting the end of this week.

Thanks.

LWA

Welcome Sherry Warner

Sherry Warner has registered with Life With Arachnoiditis. Sherry lives in Indiana. Her email address is gramms328@aol.com. She welcomes your contact.

Welcome, Sherry.

LWA

Welcome Christine Poulin

We wish to welcome our new member, Christine Poulin. Christine would love to have anyone email her. Her email address is radiocorcoran@hotmail.com

Christine in Idaho and has been diagnosed with Adhesive Arachnoiditis.

Welcome, Christine.

LWA

Welcome Harriet Lyons

Please welcome our new member, Harriet Lyons from Pennsylvania. You may email Harriet at crowskid@comcast.net Harriet has a diagnosis of Failed Back Syndrome, Degenerative Disk Disease, and Arthritis.

Hariett says:

"I had my first lumbar laminectomy in Oct 2001 at age 37 due to a "fragmented" disc at what was called the L-5/L-6 level. I had to have another one at the same sight in April 2007. Admitted to rehab for a week for foot drop. Immediately after both surgeries, I had intense pain and burning sensation across my lower back and buttocks area. Bone scans were done and I was told it was arthritis. Pain only worsened and I was no longer able to wear a shoe on my right foot because of the pain it would cause to the outside of my foot.

Was sent to a Pain Management specialist who conducted a series of epidural injections, none of which relieved the pain.

In January 2009, I had a SPC implanted. The day after, I was in the ER complaining of a terrible burning sensation at the generator sight. It literally felt like my hip was on fire. I couldn't wear clothes, or let anything touch this area. In May, it had to be completely redone because it was not in the right position. I did get some relief in my legs, but nothing in my lower back. The pain is intense and non-stop.

Currently taking Oxycodone for the pain, which helps, but doesn't alleviate the pain. I have been having headaches, strange sensations in my legs and feet, swelling in my ankles, wetting myself and having what appears to be bouts of IBS, although I have never been diagnosed. I have weird sensations in my legs which I chalked up to RLS. Sometimes, it feels like there is water running down my legs, but there is nothing there.

Had to quit my job in May 2008 because I can neither sit, nor stand for any prolonged period of time and I couldn't concentrate because of the pain. Even now I forget what I was saying, forget words and conversations that had just taken place.

Just last night I ran across the diagnosis Arachnoiditis...this seems to answer EVERYTHING. Nobody has ever told me I have this, but it explains a lot of things that couldn't be explained before. I have a doctor's appointment at the end of the month and would like to confront him with this diagnosis, but don't want to sound like a fool.

Can anyone provide any assistance? Is there anyway to confirm that it is arachnoiditis without an MRI? Since I have the SPC, I can't have an MRI unless the SPC is removed. Would it be worth it to have this done?

Thank you for any help you may be able to provide."

Welcome to our group, Harriet.

LWA

Please welcome Sandi Levi

Please join us in welcoming Sandi Levi to Life With Arachnoiditis. Sandy is located in Arizona and has a diagnosis of arachnoiditis. She welcomes your email.

Sandi says:

"I was wondering if there is a support group in Scottsdake AZ or the surrounding area."

From LWA: As we all know, support groups are virtually non existent. Please email Sandi in an effort to be of support. One day we hope support groups will be there for us all.

Welcome to LWA Sandi!

LWA

Welcome Tammy Duffy!

Please welcome Tammy Duffy of Texas. Many of you may know Tammy! Tammy has a diagnosis of Arachnoiditis as well as Fibromyalgia. Her treating facility is The Texas Back Institute. She would love to hear from you and encourages you to email her.

Tammy says:

"Previous to my first back surgery in 2003, I endured a discogram and myleogram, where I believe the dye was injected incorrectly. After enduring increasing spine pain, I was finally diagnosed in 2005 with Arachnoiditis.

Currently I seek pain treatment from a doctor at the TX Back Institute. He has worked diligently with me to get my pain under control. Currently I use the Fentantyl patch, Lidocaine patches, Cymbalta, Ultram ER, and Vicodin to control the pain. For the most part, I have very little pain. However, I do still have some bad days. I have also found swiimming in the pool is a great form of exercise for people with Arachnoiditis and Fibromyalgia."

Welcome Tammy!

LWA

Welcome Carla Spicker

Please welcome our new member, Carla Spicker. You may email Carla at cjspickler@comcast.net

Carla is from South Carolina and has a diagnosis of Arachnoiditis.

Welcome, Carla!

LWA

Kovacik Progress Update

For those that are interested, there has been an update to Karen Kovacik's progress. Progress as of July 15, 2009 has been posted on her bio.

You may see her progress at www.lifewitharachnoiditis.com/cofounders.html and click through to Karen's bio. Her progress is posted on the third page of her bio.

Email from Peter Rutkin

Perhaps some of our readers might respond to Peter's email?

Peter says:

"In 1992, I had a laminectomy and discectomy after myelogram using a dye. The surgeon delayed this operation for 4 days and resulted in a cauda equina syndrome.

For two years I had reasonably good walking but in 1994, I started to get tightness in my calves especially in the left.

Over the years, I took baclophen tablets and then had a baclophen pump inserted.

Slowly the tightness has crept down my legs and severe tightness occurs when i walk or stand. I can not sit for a long time and the matter is now reaching severity."

LWA

Welcome our New Member, Steve Rothgeb

Please welcome our new member, Steve Rothgeb of New York. Steve's email is mulefool13@roadrunner.com

Steve says:

"I used to have a full, rich life. I loved my career as a working chef and was finally getting the money that my skill and talent deserved when...all hell broke loose! I had an injury on the job that "required" a back surgery. So, in 7/96 I had my 1st back surgery--I felt better almost immediately and was soon up and walking. After 6 weeks I was cleared for work; I would have gone back regardless--I had gone into debt waiting for Worker's Comp to "kick-in". After the surgery, it was mildly suggested that I find some other work...I barely took note as I was making very good money for this area of New York State [ ADK- Lake Placid]. P/T was never mentioned and work I did! The owners of the business replaced me with 3 people, and he wanted to get rid of all 3 when I got back [really, I'm not out to blow my own whistle!]. I lasted 18 months back on the job...3 months prior to my 2nd bout with back pain--I begged the mgt to put me on hourly vs. salary pay. However, it was already too late. So, I'm out of work again...

I saw Dr's who disagreed on my diagnosis...some said I needed surgery--some did not. I suffered through epidurals [1 of which was a bloody tap!] and other invasive procedures [something called a discogram really stood out as being especially cruel and unusual].

I did some research on AA and was horrified! One Dr. likened it to being worse than what a terminal cancer patient has in terms of pain, adding that for the cancer patients that is temporary--it ends with death! We, the AA people do not have that escape...that is not for a while.

I'm worse off now than ever! In the winter I hardly leave my warm HUD apt...I go out for Dr's visits and to the pharmacy...do food shopping if I can't find someone else to help me. And now, even in the summer--I do these few small errands daily, and when I'm back home [a half hour later]--I'm exhausted! I'm also in constant stress because of money worries...no friends to speak of and in constant mind-blowing pain...WC just denied me a decent settlement, SS delayed and denied me until a time limitation kicked in--so, now there is no chance of getting any outside help! I can't even clean my little apt...and I am depressed as can be as pain is my only friend [or so it would seem]. I'm getting worse and no one seems to care...and with the AA, I've been getting secondary problems with my health.

Anywho--there's more but I've been sitting far too long to really go into everything--please write back... Seriously, I hope to forge some contact with the humans....I sorely miss them!"

LWA
(Steve's story has been abbreviated due to space issues)

Please welcome Beverly Murphy from Florida

Please welcome our new member, Beverly Murphy, of Florida. Beverly's email address is BEVTMURPHY@AOL.COM

Beverly writes:

"Experienced pain in left hip for several years and diagnosed with piriformis syndrome and trochanteric bursitis. Received numerous steroid injections for those over the same period. Finally, an MRI was done and revealed a very large herniated disc at L5-S1. Consulted neurosurgeon and he said the bad disc was pinching the nerves and recommended a laminectomy. Had it done in April, 2001. Within 5 days they had to re-explore and do a repeat laminectomy for additional disc fragment. Never improved so had fusion from L4-S1 in early December 2001. Ten days later when they went to take out the staples they found a serious CSF leak that had nearly burst through the surface. Surgery was done immediately to repair the leak. 2 months later I started with a horrible headache. but the neurosurgeon sent me to their group's neurologist who felt it was a migraine. I had checked that I do get migraines, but the Dr. would not allow me to explain they only occurred when I was getting off or on my hormones AND playing soccer in high heat - running at least 5 miles in a game. To sum up, I called in a favor and got into a physician in Gainesville who got the neuroradiologists to review the MRI. They said it was STILL a CSF leak. Before I had the chance to go up there to have it fixed, it got so large it began creating a cauda equina episode and the neurosurgeon here fixed it with a synthetic patch. 2 months later, another CSF showed up, this time they fixed it with a fascia latte graft from my thigh, kept me flat for 5 days with a drain in place to keep the spinal fluid pressure low. That was the 6th surgery in 13 months, and I looked like a skeleton by then and could barely function. I kept working until December, 2008, when I was fired from the place I had worked for 30 years. I just couldn't function at that level anymore. I never had 'back' pain, just pain in my left leg and thigh. That is gone, now I have similar pain in the RIGHT leg and thigh, terrible pain in my right foot that it is being crushed, electric charges coursing up and down my right leg and severe shocking sensations in my right leg and foot. The left foot and leg weren't so bad, but the pain specialists I have tried all wanted to inject the left too, so now it is experiencing all the same symptoms in an alarmingly increasing pattern.

I really liked my job, and sought help from about everywhere I knew to go: Massachusetts General Hospital (Harvard) doc actually told me I was just depressed. REALLY! This was shortly after the 6th surgery and I was so beaten down I could hardly walked. I wrote him back and told him his comments were similar to those made by physicians to women about their 'female hysterias back in the 1800s and he should be ashamed of himself that was all he could come up with. He didn't even examine me! Don't bother to go there!

I went to Shands Neurology affiliated with the University of Florida, and they were kind, but didn't have any suggestions.

Same story with the Cleveland Clinic near West Palm Beach. No suggestions other than to try the meds I'd already tried - neurontin and other drugs in that category, elavil, topomax, etc. All of them just made me loopy, sleepy, depressed and didn't do anything for the pain.

I went to West Palm for prolotherapy (which insurance doesn't pay for). That was huge waste of money and hurt so bad to have it done, and hurt for days after each treatment. He also ablated one of the nerves with electrical current, but I can't tell any difference. He tried numerous facet injections, epidural injection, SI injections. Nothing helped AT ALL!

Tried another pain specialist in Bradenton who tried more injections in all the same places, and a few more. No results. He wanted to try a spinal cord stimulator, so I had the psych exam for that and a trial of one. It hurt something awful to have it put in, and hurt so bad I couldn't even breathe for at least 2 days. I just lay on the couch and cried. They could never get the device to send signals below my knees, so it was a useless endeavor. I was told my anatomy was no longer normal, and they would not be able to help.

I sought advice from one more doctor, a neurosurgeon in Naples. He was very kind and patient, probably because I knew his parents. He opened up enough to say that he, and all neurosurgeons, eventually have a few patients end up like me. Ones that everything goes wrong with for no apparent reason and they are left much worse than when they started seeking medical assistance. He also said that no one would operate on my back again (in his opinion) and if I got someone to it wouldn't help anyway.

I do pretty well with meds, my control nature keeps me from taking even the full amount of percocet they prescribe. It seems that it works better if you take it only when you really need it, and you get tolerant if you take too much. Also take medicine to sleep as the leg pain increases when I lay down. I take Skelaxin, but it doesn't seem to help the muscle spasms. My lower legs lock up during the night into spasms that curl my toes and make my feet point in or sometimes down. Getting up in morning and convincing them to walk takes quite a while. I can only wear tennis shoes, and only have one pair of those my feet can tolerate because they are so sensitive. I have to wear socks all the time because my feet just can't stand the feeling of contact with the floors.

Wrapping up this epic tale, HELP! Is everyone else facing these same problems of dealing with the pain, spasms and frustrations that no one can help you? Is there anything positive out there, or a direction we can take to make us feel like we're doing SOMETHING to help ourselves?This is very frustrating. I was a professional in the health care administration field so have had good contacts. That hasn't helped me either and I'm just at the end of the road.

I also applied for SS disability last week, but it sounds like they will take forever to review it. Any advice on things to do/not do to speed this process through? Guess it's time I got to know other folks in the same boat. I've just spent the past 7 years denying I had a huge problem, but now I'm trying to learn how to deal with it."

LWA

Wrestling with God: Inspiration sent in and authored by Aaron Rabin

Wrestling with God: Never Let Go
by: Aaron Rabin

“I will not let You go unless You bless me!”
At first glance, this seems like a bold statement from someone who knows exactly what he wants and will go to great measures to obtain it. When we press the rewind button, however, we find the desperation at the core of Jacob’s encounter with God.
It was Jacob’s fear of Esau that drove him into this wrestling match. Traveling toward the brother he offended, fearing for his life and the lives of his family and those who traveled with him, Jacob sent servants ahead with gifts for Esau. He hoped these offerings would appease Esau’s anger and lead to a peaceful reunion.
The night before the encounter was anything but peaceful. “Then Jacob was left alone; and a Man wrestled with him until the breaking of day. Now when He saw that He did not prevail against him, He touched the socket of his hip; and the socket of Jacob’s hip was out of joint as He wrestled with him.”
Jacob, alone in the darkness of the desert night, full of anxiety and desperation, entered into a wrestling match with Almighty God. Add to that a dislocated hip, and no one would blame Jacob for caving in and giving up.
Jacob did just the opposite. With only the strength of his heart’s desire, he continued to wrestle with God and prevailed. It was a blessing that not only changed his immediate circumstances; it changed his entire life and his name. From his desperate need to be blessed by the Lord—and his persistence in obtaining that blessing—a people set apart for God received their name: Israel.
I believe that all of the things that happened to Jacob had driven him to this moment. It was the way he obtained his blessing from Isaac and the turmoil he experienced with Laban that caused him to become desperate for a personal encounter with God.
As I look back on my life, I can see the difference between the times that I ran to God in my most desperate moments and the times that I tried to take matters into my own hands. Although I have been successful at overcoming trials on my own at times, I cannot count one time that I walked away from those experiences with a blessing. It is only when I have trusted the resolution into my Savior’s hands, looked to Him for His will and purpose for my life, and refused to let go of Him until I walked away with a special touch from Him that I have received His blessings.
Many people talk about the things we need to let go of in life to find peace. Although that is true at times, the ultimate victory comes not from what we let go of, but rather Who we take hold of.
I know that no matter what darkness comes my way and however much I may limp along the path He has paved for me, when I come face to face with my Heavenly Father, His glory continues to be the light that guides me.

Welcome Lee Collins - New Member

Please welcome our new member, Lee Collins. Lee seeks information on diagnosis and care. You may email Lee at leecol211@yahoo.com

Lee writes:

"I'm grateful already to have found this site! I've never had back surgery, so whatever is wrong is not FBSS. I did fall causing trauma to my neck and back. I also had spinal/epidural anesthesia with dura morph (which I had a BAD reaction to) for surgery in 1992. Recently, two epiduragrams , one lumbar and one caudal revealed extensive scarring and adhesions through out my lumbar and sacral spine. I have Raynaud's & Sjogren's syndromes that have been fairly stable lately, but I'm concerned that my history of autoimmune disorders cause me to be at risk for having or getting arachnoiditis. My pain and radiculopathy affect my right lumbar and sacral spine. The symptoms that affect my neck, left shoulder and arm haven't been addressed yet. The idea of continuing to have spinal injections without a clearer diagnosis concerns me. According to the doctor, the injections haven't been very effective because the medications aren't able to penetrate the adhesions. I'm guilty of letting this go on for a long time because I knew that the initial doctors I saw didn't believe me, so I just stopped going. I'm an RN and I understood my symptoms were coming from more than one nerve root, so the clinical picture wasn't very clear, but being treated as if I was fabricating all this when I was in so much pain made it difficult for me to advocate for myself. I gave up! I would greatly appreciate any suggestions about where and how to get an accurate diagnosis and safe effective treatment. Thank You! Lee"

Welcome to our group, Lee. Please email any of our members listing an email address. They will be pleased to offer support.

LWA

Welcome Tim Carter - New Member

Please welcome Tim Carter to our group. Tim lives in Kentucky and welcomes your email. Email him at timcarter12345@hotmail.com.

Welcome, Tim!

LWA

New articles posted on research page at www.lifewitharachnoiditis.com

Two new articles have been posted for those readers that are interested in learning more about factors that play into arachnoiditis.

One article is on Vitamin C and it's titration and uses in disease. It's a great article ... Cathcart Tolerance.

The second article is Ion Channels for Beginners. This is a good start for anyone wanting to learn neural behavior which may play into arachnoiditis. Ion Channels is a basic framework for understanding other issues such as immunological responses.

LWA

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

New Clinical Trials Update Posted

Pasting in from email received today, May 31, 2009:

New clinical trials are now available at ClinicalConnection.com! 563 new featured clinical trials have been added to the ClinicalConnection.com database for hundreds of conditions and over 120,000 clinical trials have been made available in our new multi-database search engine.

Please take a moment to review the new clinical trials listed for your area. Also, remember that you may always refer your friends and family members to clinical trials that they may be interested in. To view all new clinical trials in your area please use your zip code to search for studies at http://www.clinicalconnection.com/SearchStudies.aspx.

LWA Cofounders

Cofounder Health Update Sunday May 30, 2009

Partial insert of a note written by Karen Kovacik, one of the cofounders of LWA, to other LWA cofounders follows. I wanted to share with our readership:

Last night I put the bottle of narcotics away in the "emergency" drawer. Where those items go that you might need once a year. As I have not had narcotics since last Monday, I feel the withdrawal issues are pretty much behind me. They were not friendly.

Thursday I hiked 4.6 miles, Friday I hiked 4.6 miles, yesterday I hiked 4.6 miles and another 1.2 miles around 7pm with my retriever and played frisbee with him.

Last night I slept the entire night - EIGHT hours ... without waking. I have not done that in over 20 years. The world looks different outside a drug induced haze. Last night, I took 1500mg robaxin plus 20mg diazepam (which is not much for me based on past usage). It was the second night in a row with only one dose of medications at bedtime.

I cannot believe what I have come through AND that I have come this far in what seems such a short period of time. This treatment started around Nov 2008 on a more sporadic basis but really kicked into high gear within the past 6 weeks or so ...... what I can tie to this particular time frame is weekly IV without fail (from Apothecure .... special compound), purer form of natto PN20K in higher doses, increase of D3 to 6000 IU per day and resveratrol.

To say I am overwhelmed with emotion at this progress is an understatement. I have no words to express my profound gratitude to everyone involved and for your support even in the face of "research" saying this can't be done. I do believe I still have arachnoiditis .... I don't know if I will always have it. I also believe we've proven it can be put into a state that is not "inflammatory" and remission and/or improvement is quite possible for many people if we keep knives and chemicals away. Don't EVER believe "there is no cure." Until a person achieves "Supreme Being" status, they are IGNORANT if they say, "there is no hope, no cure." The body/mind connection is also impressive.

As for MY life, I've decided to devote more time to LWA and other non profit efforts, promoting health and "living my life." My personal life is non existent due to non health related circumstances beyond my control. That's OKAY!! Dealing with AA has taught me it does not need to be that way. Yesterday I listed my home in South Fork for sale. Many of you know my lodge is already for sale. I'll be "around" as these events unfold. These actions will free me up to be anywhere at anytime to further this and similar causes. At all times I will remain in contact and "near" you plus those that come within our realm of influence and my friend/treating physician (if your treating physician isn't your "friend," get another physician) to see how far I can take this "cure." I just plan to see a lot of highway, lots of beaches, perhaps some politicians (I'll wash my hands after the politicians!).

I am looking forward to having you on board and to seeing you become as well as you can personally be.

Much love and may God bless our efforts.

Karen Kovacik
Cofounder LWA

Karen Kovacik

Cofounder No Longer on Pain Meds

From Karen Kovacik, Cofounder:

The last day of narcotic pain medication was Monday, May 25, 2009. Wanted to wait to make certain to correctly reflect my true status on this blog. Had been on pain medication for minimum three years and more so since diagnosis of Arachnoiditis in 2008.

On Thursday I hiked 4.6 miles. On Friday I hiked 4.6 miles. Friday night (last night) I had the best night's sleep I can recall.

I am pain medication free. Still working with muscle spasm medication which is to be expected.

Wanted to share this progress with readers.

God bless you all.

Karen Kovacik
Cofounder LWA

Research Page to be Updated at www.lifewitharachnoiditis.com

Greetings all.

We have a bit more in the way of research materials to be shared today. Some time today we hope to update the Research page with documentation on a few issues.

LWA

Laughter, Normalcy and Joy

Note from Karen Kovacik today:

Today I go for IV vitamin C therapy. Tomorrow or Thursday I will update my Progress page at www.lifewitharachnoiditis.com

I strongly encourage you to laugh as much as possible, to establish as much normalcy as possible in your lives (under the circumstances) and to take in as much joy as you possibly can. The body/mind connection is huge. Think "happy." Think "well." Focus on what you "CAN DO."

A really funny thing happened to me last night .... it did involve a fall, blood and much laughter. Hope to share it on my progress page ... am still giggling.

Love to all ...

Karen Kovacik
Cofounder LWA

URGENT - Support needed - Leona Anderson, MS

Please do not post "comment" to this but email Leona at admissions123@gmail.com

Here is Leona's story:

My name is Leona Anderson. My husband has been diagnosed with Arachnoiditis. This journey started with back surgery for spinal stenosis on November 4, 2008. He came home the same day after surgery. For two weeks he felt like a new man. Sunday night before Thanksgiving, he was feeling really tired and weird. He went and laid down and to adjust himself on the bed, he pushed himself up on the bed with his right foot and felt a pop on his lower right back side with excruciating pain that radiated to the front. He could not sit, stand or lay down without pain. He was rushed to the ER. They got him out of pain and sent him home.We went back to the neurosurgeon who preformed the surgery only to be told he didn't know what was wrong. He sent him to a General Surgeon and a Urologist. Of course, they didn't understand why they were seeing him. He has been back at the ER two more times since then. The latter he was admitted to the hospital because his was in so much pain he passed out and and had a seizure. He had a sever headache and after I called the doctors attention to the headache they decide to do a CT scan. The scan revealed a subarachnoid hemorrhage.The doctors then diagnosed him with Arachnoiditis. The doctors we are dealing with are not that familiar with this disease. They do not know what caused this to happen. Before they found this hemorrhage they were going to treat him for Chronic pain. We are just getting the run around. We are now home after a month stay in the hospital and inpatient Rehab. His medication consist of Nimidopine which he finished on May 16, 2009, Depakote, valium, neurontin, vitamin C and perocet when needed for severe pain. He is going to Physical Therapy for three days a week for an hour. He can't laugh, cough, sneeze or bend with out lightning pain shooting through him. We go back to the neurosurgeon on May 28. Could you give me some questions I need to ask? My husband is not aware of the severity of his disease. He is still recuperating from his stay in the hospital. If you have any advise you could give would be greatly appreciated.I am thankful I have found your website. I was feeling all alone in dealing with this. He has some good days but says he is always hurting. His pain is about a 5 every day. He is not working right now. He is on short term disability. We are hoping he will be able to return to work. I like the idea of maybe he will be able to treat his pain with out narcotic drugs. If you are able to direct me in the direction I need to be able to accomplish this for him it well be greatly appreciated. Thank you for taking the time to read my email. I look forward to hearing from you. Leona Anderson admissions123@gmail.com

The Vitamin C Connection - Not to be missed!

Vitamin C: Past, Present, Future Applications by Thomas Levy, MD. - The American College for Advancement in Medicine - This is the AMAC site where they offer video presentations on demand. For this presentation, scroll down to the presentation on Vitamin C by Levy.

More information will be posted soon on other courses of alternative treatments.

LWA

Alternative & Integrative Practioners - Where to find them!

Finally we have more information available. Many of you have asked how to find a doctor familiar with alternative treatment. It is now published on our Provider Page and here is a paste in of the link. There are many throughout the United States and other locations.

The American College for Advancement in Medicine (ACAM) - Not-for-profit association dedicated to educating physicians and other health care professionals on latest findings and emerging procedures in complementary, alternative and integrative (CAIM) medicine. ACAM is the voice of integrative medicine; our goals are to improve physician skills, knowledge and diagnostic procedures as they relate to complementary and alternative medicine; to support integrative medicine research; and to develop awareness of alternative methods of medical treatment. Celebrating more than a quarter century of service, ACAM represents more than 1,000 physicians in 30 countries. ACAM is the largest and oldest organization of its kind in the world dedicated exclusively to serving the needs of the integrative medicine industry.

LWA

Juliette Curtis has questions. Can any of you help? If so her email is below! Thank you.

Juliette Curtis is a new member. We are pasting in her request for information/support below.

Anything any of you can do to share or respond to Juliette would be appreciated!

Her email is curtisjuliette@yahoo.com

Here is her request:

"I am so glad to be part of this blog. Can anyone share with me there experiences with topamax, and maybe even if they have taken along with darvocet and dilaudid.

Also, is there anyone here from central oregon that has a good doctor that knows about arachnoiditis? I like my doctor. but he just seem so uninformed, at times I feel like I know more than he does and I do not know very much.

Thanks."

Please respond directly to Juliette if you can. Our "comments" are not as visible as the blog posts and I think it would be helpful if you could start communicating with "each other."

Thank you for any help anyone can offer Juliette.

LWA Cofounders

Two New Members Added May 20, 2009

We have added two new members to the Members' Page today.

Please go to our web site at www.lifewitharachnoiditis.com and click on the Member Page. Look for:

Donna Mayfield -Arachnoiditis, Fibromyalgia - Seeks support and informatioin. Please email her!

Juliette Curtis - Arachnoiditis - Mom with an eight year old son. Perhaps some of you with children at home might make contact with Juliette?

Thanks.

LWA Cofounders

Welcome to new member - this member has requested assistance!

We have a new member today: Theresa Bugnatto

Her email is tinkybell803@hotmail.com

She has visited our Facebook Page and listed her story there under "Discussions." To see her story, please go to http://www.facebook.com/ and in the search window enter "Life With Arachnoiditis"

Once on our page, click on the Discussions Tab.

Welcome, Theresa.

LWA