Arachnoiditis: Looking to talk with others

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.

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?

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 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.

@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!

Please do try to stop having any epidurals. This, as recommended by both Dr. Tennant and Dr. Aldrete, known authorities in this disorder. It can take a while to "show up" because it has to do with the formation of scar tissue wherever the needle went through. Read up all you can on Arachnoiditis. ANY needle into one´s spinal cord or spine is an "insult" that will result in scar formation and ARC. Dr. Aldrete called epidurals the TSUNAMI still to come in terms of this disease. I believe he was writing, or wrote, about it. Look up anything written by Dr. Aldrete and Dr. Tennant. Sorry am a bit abrupt....my dog is on my lap and did not like I was not paying enough attention to her.....Good luck, Fellow Arachniacs.....thinking of all the sufferers everywhere! Love you all....this is a terrible disease CAUSED by medical professionals who don´t always understand the delicate structures in our spines.....

Loved your note to Rachel, Gerisues... and your husband´s words. I too have an amazing husband, who married me right after my original laminectomy and fusion in 1973, so he has gone through it all. I had three kids at the time, all of whom he adopted and carry his name, and love him dearly. So we were both very fortunate to meet up with an Angel along the way. Still, it doesn´t always stop my bad moods caused by pain and frustration....yet reading your note made me stop-and-think about all he has done and continues to do to help me. We have a five hour trip up to Mayo coming up soon....hoping against hope for more help. Have been diagnosed locally with Normal Pressure Hydrocephalus (mostly an older person´s diagnosis) but to confirm they require a Spinal Tap. Yet, this is a No-No for us Arachniacs....so am scared to death. Have insisted on a "second opinion" at Mayo to see if I can be a candidate for brain shunt treatment....no guarantees I will be. So as time has gone by, seems complications come up. My gut feel is that NPH is a sort of "progression" of ARC, but this is just my gut feel after reading and reading and reading about both conditions. Hydrocephalus (or "water" on the brain) is actually excessive Cerebral Spinal Fluid on the brain. But why? Because there is an obstruction in the spinal cord so that Cerebral Spinal Fluid is not "flowing" to the brain as it should. However, this is just my layman´s assessment of a form of ARC progression.

I close now, saying, "I´m scared to death, but once on this horse, no way to get off." Am old enough now (76) that realistically I don´t have too many choices. If you are young, please keep reading and learning about self-help modalities. Not all doctors can help, you´re mostly on your own--although am sure hoping Mayo can help. I´ve had some very good years and am very grateful.... May be getting closer to the time to sign-off. But am grateful.

Keep plugging ahead! And do it one-day-at-a-time, with hope and self-awareness.

Hi Chris, thanks for your sweet answer and comments. Yes, indeed, we had laminectomy around the same time, though mine was due to a bad fall which ruined my spine several years before, and was misdiagnosed at first as "kidney problems." Well, I was living in South America at the time....not much help there. When I finally got to a US hospital it was the era when there were no MRI´s yet, and all that was used was a chemical (produced by Eastman Kodak) called Pantopaque, which was sent into the spinal cord to determine where the problem was. I actually could see it as it went down to the obstruction or fractured vertebra. That chemical was taken off the market right around the same time, but it continued to actually be used for several years...in spite of an FDA Whistleblower complaint.

In the UK and Australia it was called Myodil. Same stuff though, and the "chemical insult" caused arachnoiditis, which is now at the adhesive stage, and perhaps the next stage (ossificans). Patients all over the world acknowledge it, but in this country it is NOT. Because of its iatrogenic nature. In fact, in 2010 there was a worldwide conference in France about Arachnoiditis....that´s where I got the name of the ONLY US speaker: Dr. Antonio Aldrete. The older doc who gave me a 5 hour appointment in the Florida Panhandle, with all my films for diagnosis. And confirmed the dreaded ARC.

I´m actually coming to Mayo not for ARC, but for Normal Pressure Hydrocephalus. The reason I mentioned being scared is because the spinal tap for NPH is a No-No for Arachnoiditis....and I worry about how Mayo will get around that aspect of diagnosing NPH, symptoms which are increasing day by day. However, my evaluation is scheduled to be with a true expert in NPH, hence I do have hope. Apparently a diagnosis cannot be confirmed unless the spinal tap can help determine the pressure of CSF traversing the spinal cord through the arachnoid villi. And whether brain surgery to implant a shunt will be feasible. This is the longest I´ve written about my condition, and today I seem to have let loose. But I wanted to explain that maybe it was an exaggeration to say I was "scared to death." I know coming to Mayo is the best I can do,.. and I do have faith.

I wonder if in the future I should write on a "private" basis. Don´t mean to bore anyone, yet, maybe there are some worthwhile kernels for somewhere else. I do reiterate: read all you can, and keep reading. There is now so much out there....which didn´t use to be the case. I´ve been reading, copying, highlighting, and making 3-ring binders for at least 9 years now. And it does help. Ultimately this falls within Central Nervous System, Pain and Arachnoiditis interest groups....so I do hope not to bore anyone or sound repetitive..... We have to be aggressively pro-active about it all!

Have a good week Everyone!

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.

@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!