Monday, July 27, 2009

Welcome Sherry Warner

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

Welcome, Sherry.


Saturday, July 25, 2009

Welcome Christine Poulin

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

Christine in Idaho and has been diagnosed with Adhesive Arachnoiditis.

Welcome, Christine.


Monday, July 20, 2009

Welcome Harriet Lyons

Please welcome our new member, Harriet Lyons from Pennsylvania. You may email Harriet at 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.


Sunday, July 19, 2009

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!


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!


Welcome Carla Spicker

Please welcome our new member, Carla Spicker. You may email Carla at

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

Welcome, Carla!


Wednesday, July 15, 2009

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 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."


Welcome our New Member, Steve Rothgeb

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

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 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 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!"

(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."


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.

Friday, July 10, 2009

Welcome Lee Collins - New Member

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

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.


Welcome Tim Carter - New Member

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

Welcome, Tim!


Wednesday, July 1, 2009

New articles posted on research page at

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.