Arachnoiditis: Looking to talk with others

I have it in my back too...from epidurals and a few spinal. My Dr didn't find mine until I was in surgery. The bad thing about it is that it can cause all kinds of problems with nerves. Mine were glued together and frayed. Operating on it does no good because it just comes back even worse than before. What has your surgeon recommended for you as a treatment ?

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I
have had a lot of pain in my back, fatigue, bowels and bladder dysfunction. The pain has gotten worse, got several steroids injections, for the past 3 years the I have had pain in my butts, legs, feet. The tingling, burning and twisting in my feet are unbearable at times. Thanks for listening.Chantaburi,

I have symptoms of Arachnoiditis. I was diagnosed with Transverse in 2012. I read a lot about Dr. Tennant who treated people with this disease. Unfortunately he was forced to retire. I am going to see a doctor and get a confirmation that I have this disease. I have pain in my back, butts. Tingling, numbness, burning, spasms, and twitching. It’s unbearable some days. I take pain pills and have stemulators in my back. Thank you. Chantaburi.

Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012. An ABSOLUTE idiotic Dr was SUPPOSED to inject a combination of cortisone/dye into a herniated disc on my spine. Well, instead, he put both of the medications INTO my SPINAL CORD with NO WAY of removing it! Dye is poison to nerves, and I had an IMMEDIATE painful reaction so bad, my family removed me from North Memorial Hospital to Mayo Clinic IMMEDIATELY. Where they compared the MRI from North Memorial to the one they took after the procedure. And my ALL OF MY NERVES were ALREADY in a "sticky, hairball at the bottom of my spinal cord sac". That's how my specialist explains it in layman's terms.
He also says that if anyone asks how to describe the pain, he told me to tell them "it's worse than someone with stage 4 bone cancer".
I would just like to open a line of communication with ANYONE ELSE who understands what we're going through. I've felt so alone, depressed, misunderstood and have NEVER spoke to, let alone met ANYONE else with Arachnoiditis. PLEASE feel free to respond with your story, and forward mine to anyone else you think might understand me. And I'd love to talk to ANYONE who is the partner, so I can try and understand how THEY FEEL. I think that's JUST as important if you are in a relationship, (or want to be) and I REALLY want to hear it from their point of view. Then I can explain it to someone I might get serious with, so they'll know EXACTLY what to expect.
Thank you for reading my story. I look forward to hearing from you or anyone ELSE!
Rachel

@rachelarachgirl Im so sorry for what your going through because of that Dr. You have a good case to sue if you need money for your life now.

Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through similar situations as you are currently facing. While we wait for the other members already in this discussion, I would like to also invite @thelmalouise76, @ledgerwp, @jlfisher56, @lconroy, @annmaria, and @galady to this discussion to share their experiences with you on living with arachnoiditis.

@rachelarachgirl, if you are comfortable sharing more, you mentioned that your physician at Mayo Clinic helped with your diagnosis and recognized your pain, was there any recommendation on controlling your pain or what you can do moving forward?

Hi Rachel, I am so sorry what that doctor did to you. What an idiot. I don’t know what caused all this pain. I have several steroid injections, three back surgeries, and cat scans. I am making an appointment tomorrow to an neurologist to
confirm that I have Arachnoiditis. People don’t understand how much pain this disease causes.
They would say but “you look good”. I read about the hormone imbalance from Dr. Forrest Tennant’s article. I contacted my
Primary Physician and she said the hormones are NOT recommended for someone over 65. The side affects are too risky. Thank you.

Hi Rachel. I was diagnosed with arachnoidiitis 28 years ago and was single at the time. I also did not know anyone who had it at the time of my diagnosis. 12 years ago I met and married a very special man.He was widowed and spent several years taking care of his late wife. I told him up front about my condition and that I really had no idea if I wanted to be in a relationship with what I dealt with from the arach every day. He was dead set on us being together, so within a few months we were married. I asked him his point of view and he said "I get pretty frustrated with the lack of interest in the condition in the medical field and that my wife suffers so much. I have never had to do hands on care for her, but I am always trying to find ways for her to get the help she needs. I feel like "we" have arachnoiditis because it affects us both when it comes to our relationship. I watch her suffer so much and I would do anything to take this pain and suffering from her if I could. She is such a cheerful and upbuilding person, she makes me feel loved and cared about despite her pain and I could not imagine being without her. If you truly care for someone it is not about what their health is, it is about making the time you have together worthwhile and adapting to each other's needs. I know she would feel the same for me if I was the one who had the health issue. She does not know one minute to the next what she is going to be able to do so we plan activities with that in mind. She has to use a scooter when we go places that require alot of walking so we research ahead of time if they are handicapped friendly. I learned to do therapeutic massage and bought a massage table so that I could ease some of her muscle cramping using these techniques. Bottom line, if you both truly love and care about someone, you are going to adapt around their needs just as they are going to do for you. You both have to be willing to change how you do things so as to help each other. Is it difficult watching someone you love suffer, YES. Do I worry about her, YES. You have to be strong enough to handle that. You cannot just selfishly leave them behind while you go off and do your own thing. I saw that happen in my own family growing up and I was determined not to make that same mistake. It needs to be a family affair with activities that include my wife, done in a way that she can do it. If others are not willing to work around that then we have no use for them. She has made so many changes to accommodate me as well. I don't know if this helps or not but these are my thoughts." Well I hope his thoughts are useful to you. If you have any questions, I will ask him and he can be more specific. I am sorry for what you are going through, it is not an easy condition to live with.

@racelarachgirl - which doctor did you see at Mayo? I was diagnosed in July 2018 after my husband demanded that the nurse practitioner (for the back surgeon) give us more/better/different answers to what I was experiencing. She looked back at an MRI from October 2017 and said "when did you have the MRI with contrast?" I explained that I had never had an MRI with contrast - that I wasn't told to or scheduled for one. She told me that the radiologist saw indications of arachnoiditis on the MRI, but wanted to confirm. A week later, it was confirmed and the back surgeon told me that he could do surgery on my spondylolothesis, but not the arachnoiditis. I had looked it up after the first mention, so I declined surgery since I've read that it makes the AA progress faster. No doctors here know ANYTHING about AA - all they want to do is inject me or cut on me. I'm desperate to see a doctor who understands what it is and how much it hurts (and affects my LIFE!). Thank you in advance!