Arachnoiditis – when the cure/treatment is worse than the disease ?

tom bresnahan

My Life with Arachnoiditis

http://www.painnewsnetwork.org/stories/2015/3/23/my-life-with-arachnoiditis

By Tom Bresnahan

Let me tell you briefly about my past before I describe the hell I live with every day.

Before moving to Florida in 2000, I owned and operated a 6 store Domino’s Pizza franchise in Tacoma, Washington. I served as an elected fire commissioner, belonged to two search and rescue groups, and was trained and certified as a swift water rescue technician. As you can see, I’m no couch potato.

tom bresnahan

After selling my business and moving to Florida I decided to pursue a career in healthcare, something I had wanted to do for many years. I went back to school and received a degree in Radiological Technology.

While attending school I fell off of a roof, damaged my back, and required surgery. In 2003, I had a triple fusion of my lumbar region performed by a local orthopedic surgeon. Everything went well and I went on to work as cardiac catheter technician, a fast paced, adrenaline junkie’s dream job! I took a lot of calls and enjoyed the challenge of working with a team trying to save the life of someone having a heart attack. 

In 2009, I started to have sciatica pain in my right leg. It was interfering with my work, so I went back to the doctor who had performed my surgery. He suggested a series of epidural steroid injections. He said they were extremely safe and could eliminate my pain.

When I arrived for my first injection, I reminded the nurse to tell the doctor of the “outpouching” I had on my spinal cord. This is known as a pseudomeningoceale. It was caused when the doctor doing my first back surgery performed a laminectomy and didn’t take the right steps to keep the pouch from forming. When I discovered this on an MRI and asked him about it, I was told that it was completely normal and that I shouldn’t be concerned. 

The image on the right shows the pouch as a white mass on my spine.

The first steroid injection had no effect, so a few months later I went in for a second. Again I reminded the nurse about the outpouching. This message was never shared with the doctor, although he should have looked at my chart prior to the procedure.  The injection was given and within hours my pain became elevated. I called the doctor and was told this is normal and not to be concerned.

Over the next several days my pain increased, and it was difficult to concentrate and perform my job. I was seen again by the doctor and he scheduled a discogram, a test is to see if a disk is ruptured or torn. It is a very painful test. The results came back stating I had a torn disk above the level of my first surgery. The doctor said I would need another fusion. 

I went in for surgery on September 8, 2009. By then the pain was quite bad and I was looking for anything to give me some relief. After I was partially sedated the doctor came in and told my wife that this surgery would most likely not help with my pain. I was nearly out and she didn’t know what to do, so in I went for what would be a totally unnecessary procedure. 

As the pain medication from surgery wore off, the pain was so bad it made me scream out loud. This went on for months! My wife took me to the ER and back to the doctor’s office, where I was told, “We don’t know what’s wrong.” 

I couldn’t work and after being out for 90 days I was terminated. I was devastated that I was losing a job I loved and spending every moment in horrific pain.  I finally went to see a neurosurgeon who ordered a myelogram, an image of my spine that was performed at the hospital where I had worked.

The neurosuregon, who I had worked with on several occasions, did the test. Afterward he came into the recovery room and said, “Tom, you’re screwed!” 

I laughed thinking he was joking. 

“You have a condition known as Adhesive Arachnoiditis,” the doctor told me. “You’re going to be in pain the rest of your life!” 

I was shocked and couldn’t believe this was happening. He told me the nerves within my spine were all clumped together. He said over time scar tissue would form and probably make the pain worse and cause things like bladder and bowel dysfunction. And there was no cure.

The test was done and I learned my fate on Dec 31, 2009. Happy New Year!   

Over the next few months I went through many medications, trying to get the pain under control. The drugs did very little to help. I also ordered copies of the dictations from all of the procedures I had done by my surgeon. On the dictation done for my last injection the surgeon stated, “I did get withdrawal so I repositioned the needle and did 4 injections.” 

The “withdrawal” was spinal fluid. He had punctured my spinal cord, yet continued to inject the steroid Depo-Medrol into my spine. When I confronted him at what was to be my last appointment, he told me, “You would have a hard time proving it!” 

Since that time I’ve been through the 5 stages of grief, with anger being the hardest to overcome.  I was determined to find a fix, but eventually realized there was none. 

I came close to ending my life on two occasions. My wife of 3 years told me, “I didn’t sign up for this!” We divorced shortly after that. 

I have spent the last 2 years trying to effect a change and educating people on the dangers of epidural steroid injections. I have tried to help others with Arachnoiditis find medications, support and the faith to continue on each day.

I have a phrase that I tell those who feel the desire to end their pain and their life, “As long as we are breathing there is hope!” 

The pain has gotten worse over the last 2 years. I have had episodes of not being able to move my legs when I wake up in the morning. This alone will scare a person terribly! My legs go numb if I sit for more than 15 minutes.  The pain now extends into my arms and hands. 

Because this condition affects the nervous system I have developed an internal thermostat problem. I will feel cold and actually shiver in a room that is 76 degrees. At other times I will break into a sweat that’s so bad I’m drenched within a few minutes, to the point that I have to change shirts. I can’t tell you how many times I’ve lain in bed screaming because the pain is so bad. 

I have never in my life been one to take it easy, yet I’ve had people actually tell me, “It couldn’t be that bad!” 

This is demoralizing, frustrating and depressing. Steroid injections are a band aid at best and the destroyer of life at worst. Please help us put a stop to these injections that are causing so many to suffer so much!

I want to thank you for taking the time to read my story. I pray every night that if we can stop anyone else from ending up with this hellish pain then I will feel that I have made a difference. 

Tom Bresnahan lives in Florida. He is a patient advocate and activist with the Arachnoiditis Society for Awareness and Prevention.

Pain News Network invites other readers to share their stories with us. 

Send them to:  editor@PainNewsNetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

9 Responses

  1. This is SO close to my story (which began with a car accident in 2007, followed by fusion with instrumentation, followed by Pain, followed by ESIs (3), followed by more pain, and later, the Arachnoiditis Diagnosis …..since then life is shot, especially thinks the “Opiod hysteria” has caused them to deny that anyone needs a strong dose of Pain Medicine ; I’ll die soon…… The only decent part is that my wife (of 29 yrs) and family have been good to me, which makes leaving them too hard for the moment….. I hope you have found some measure of piece….

  2. Tom, how are you doing now? One doctor at Duke has said that I have it but want. Sec0 d diagnosis. What things have you done that work?? Prayers go 9ut to you ….we need a cure!!

  3. I am so sorry the medical field you worked in and enjoyed and trust d d failed you so miserably! I will pray for you and I hope you find relief. I to suffer from pain daily and my very busy if came to a screeching halt last year! I understand the thought of ending things but I have a 18 year old to finish raising. Good luck and you are finding a reason to get up and to help others! I commend you!

  4. I am sorry. Please try to find pain medication that can allow you some sort of relief. Wishing you the best from this horrible disease that is usually caused by our doctors. So hoping the Fda will stop them.

  5. Yes Tom, I am so sorry this happened to you. Thank you warning everyone about those horrid injections, in by way, are only temporary and don’t last, even IF they help at all. So why in the world after seeing what happened to TOM would people continue to get these injections with such a high risk of permanent damage? The pain docs love you to get them, cha ching.. for them, money!
    Thanks for sharing your story.

    • Dear Tom, I’m so sorry for what happened to u..I agree that those injections are very dangerous! I went through them myself in my neck..I to have had a double fusion in my neck and now suffer with permanent nerve damage that effects my arms and hands..I have refused to have another fusion which would leave my whole neck fused..the pain is excruciating. It seems like all these doctors want to do is pass the buck..it’s frustrating and demoralizing like u say…I to was a very active hard working person before my life was taken..I also suffer with other chronic pain conditions..I would love to beable to start a support group to help others and educate people that have been newly diagnosed..but I can’t seem to get my pain at a level where I can function well enough to be any help to anyone..I understand what ur going through and I feel for u..u are an inspiration:)

  6. Hello Tom,

    I was coming to this website to read about a completely different issue that a journalist had a link when your story popped up!

    I’m sure you have tried everything, it sure sounds like it…I started taking courses about a year ago to be certified in different areas using MPS therapy with the Dolphin Neurostim device. It’s worked on so many people with so many different medical issues I can’t even count. It’s almost a form of acupuncture but without the needles.

    You wouldn’t need any certification to use this device on yourself and it can be prescribed so insurance might cover it. The books that they provided with mine have hundreds of treatment protocols. With your situation it would be one that had to be done in a series of treatment protocols to address all of the issues & get to the underlying root cause. I know it’s probably hard to consider or believe it could work after everything you have been through, but if you haven’t tried this MPS Therapy you might find it works miracles.

    I live in Florida too, I would be happy to share any information that I know or what I’ve learned. But here are the links to check this out I am not a salesperson I don’t get anything for a referral I really just read your story & thought I might just click past without saying a word and I just couldn’t.

    http://dolphinmps.com/

    here you can read all about the different things it treats and you can use it yourself. They are doing clinical studies on so many other things now but the acupuncture protocol book they have has many protocols for different medical problems that I have personally used and I’ve been amazed that it works. I swear I don’t believe in anything ever until I experience it myself so I hope that this could be helpful to you?

    Warm Regards,

    Jayme

  7. Tom, I’m so sorry this happened to you. Hopefully you’re not caught up in this pain medication debacle.

    I, too, have pain, but not your diagnosis, and not the severity of yours. There are days I literally take it one minute, one hour at a time.

    Bless you.

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