Anyone been diagnosed with arachnoiditis after spine surgery?

Thank you again!
I realized had not been prescribed the bupremorohine is because I am on other medicines for trigéminas neuralgia that clannot be taken with this one.
I have a dilaudid pain pump but it’s high in my neck entering my brain for the trigeminal so it’s not really helping the AA
Let’s stay strong and hoping for new ways to treat AA
I would gladly participae in trials but having rheumatoid arthritis and TN excludes me from anything ):
Good luck to all!
Please keep in touch!

Please accept my apologies for the typos !

I would gladly be part of trial for help,on arnoiditis. To do is a big day of feeling I am screaming “HELP!” I’m exhausted already today and it’s only half past noon..

Hello @judithelaine, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear you are in so much pain. Have you been diagnosed with arachnoiditis? Are you able to share about any treatments you've had and had any relief?

Dear John, I’m sad to say I have had no respite, and things are getting exponentially more difficult, and I can offer nothing that is helping. It is quite a lonely journey, isn’t it? I had fusion surgery at L 4/5, along with laminectomy and discectomy 13 years ago. My pain management has gone from least invasive upward, and ending with radio frequency, which was a reactive three weeks of H—L. The electric “evader” was tried to no avail. Then he looked at me and said there were no more options, and with trial and error, we came up with serious pain meds.

I bought two of Dr. Tennant’s books, and watched his webinar of 2020. I bought his recommended Tumeric/Curcumin and pregnenolone at a health food store, and we shall see. I live in NYC, I have Medicare and Medicaid with no out of pocket medical options due to personal finances. However, this Tennant approach of going through blood/brain barrier makes sense. Do you know doctors here who are willing to try his protocols for this mind-destroying pain?

Sometimes I wonder if I’m doing something wrong, like trying to “trick” contractions to spiral out. What an imagination, heh.

Have you any thoughts on things that may be helpful?

Again, thank you, John for reaching out.

Oh, and “yes I have been diagnosed with it. However, a neurologist he sent me to, had another MRI done, and it was not in that report.

There is another discussion you may want to check out that other members have used to treat chronic pain from various conditions - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I sent you a PM but am also posting this here because I think it may also help others.

I'm so sorry to hear about your pain. I can definitely relate. The first thing you need to do is go to http://www.arachnoiditishope.com and read all you can. Print the surveys, lab tests, medical protocol recommendations, and anything else you think might help the doctor to help you. First and foremost the inflammation needs to be addressed. Once that happens you will get some pain relief and you can start to manage your pain from there. Unfortunately, arachnoiditis is one of the possible risks that comes with any kind of spine surgery. Once inflammation takes hold and is not addressed things start to spiral from there. Don't get me wrong, I completely understand how you feel about the doctors because I've had 18 years of what you have described including doctors that have been rude, thought I was a drug seeker, etc. I now understand that, just like the Tarlov cysts that I have/had (I had surgery), arachnoiditis is an "incidental finding" and will not always be noted on an MRI and that most doctors have little to no knowledge about it. Those that do should definitely take heed and recommend the rheumatologist. I have arachnoiditis, most likely adhesive, but my other doctors and I believe I had it long before the surgery. The inflammation and pain has gotten worse since surgery. I am now waiting for my labs (recommended by Dr. Tennant from http://www.arachnoiditishope.com) to come back. Then I can take my MRIs, labs, and surveys to a rheumatologist. Also, don't hesitate to email questions to Dr. Tennant and his team. They are very supportive and helpful. You will also need a pain management provider that is willing to take the time to look into your condition and is willing to work with you. When you go in for you initial appt. present them with your information right away and ask them if they are willing to learn a little bit more about your condition and work with you. If not, then you need to move on to the next doctor. I found one of the most knowledgeable doctors in interventional pain management. Look for one with expertise in anesthesiology. You are also welcome to read some of my other posts for more into. Tarlov cysts and arachnoiditis go hand in hand and have a lot of similar traits and symptoms. I wish you the best of luck and hope you find some relief! Take care!

Hello, not sure if this discussion is still open, Due to spondylolithesis and incredible pain I underwent L5-S1 spinal fusion August 2020. I have had nerve pain throughout my recovery. I had an MRI in April 2021 which showed arachnoiditis along with a huge seroma at right surgical site. Tried to have seroma drained and it produced 60cc fluid but also incredible burning pain nearing completion of drain. Recent ( July 2020) shows seroma back as large as before and very calcified. I am scheduled for surgical removal on August 23rd but concerned another surgery could increase the symptoms and progression of arachnoiditis. My orthopedic surgeon denied arachnoiditis diagnosis but I just went to a neurosurgeon for 2nd opinion and he confirmed arachnoiditis dx. I am a long time CT Technologist so some medical background. I am very much interested in further studies etc. in regards to arachnoiditis as well as seroma presentation post lumbar surgery.
Thank

Hi, I read your comments. Is it under control now? Did you have leg pain? Where do you live?