Any Adhesive Arachnoiditis members here?

AA sufferer here. Diagnosed May 2022 after having it for 3-4 years. 32 year old male who was active playing sports, hiking, in the gym, etc. for 6-8 hours a day most days before my first back surgery in 2016. Been through hell and back with multiple botched surgeries from doctors that should be in jail, not just from how badly they messed up with the surgeries themselves, but how they handled everything that went on afterward. AA was caused from a botched fusion where the surgeon misplaced two screws, one of which went through my spinal cord. Was a potentially fixable situation if the doctor had actually listened to my actual screams and ER visits instead of telling me that the screw on the X-Ray was "within normal range" and telling me "it's normal post surgical pain" and pumping me with 2400-3600mg ibuprofen daily. Can't take any normal NSAIDs now because I literally have no stomach lining left, even 3 years since I stopped them. I'm on Diamox for the BIH which helps with the headaches and brain fog most of the time, but it's never fully gone. SCS trial October 16th, had great success with it (50-60%, which I'm sure any of you dealing with AA is life changing), and then had the permanent one installed Nov 16th. It's providing 15-20% relief from my peak pain, but I have to sit for a full hour and a half to charge it, so I'm only at my peak pain BECAUSE of the stimulator. Battery is dying in 36 hours which is less than half the time I was told before surgery. 36 hours and 24 hours are no different. I have to charge it nightly because I can't just stop in the middle of the day to charge it. Pain management and MedTronic Reps are an absolute joke, both are suddenly telling me that the battery life is normal for the rate of stimulation I'm at. That was not only not communicated with me before the surgery, but I was specifically told that I would be charging twice a week max. Both of their answers to why the battery is dying so fast (The Pain Management NP and BOTH Medtronic Reps) was "just give your body time to heal. My body healing has nothing to do with the life of the battery. My neurosurgeon who implanted the device finally got involved, so hopefully he can help me figure a few things out. He's extremely concerned about the device not providing the relief that it did during the trial though. I have flexiril and I should be on oxy, but after losing most of my physical abilities, I refuse to take anything that altars my mental status, especially during the day. So I had my doctor prescribe me methocarbamol. Brings the pain down half a point so its not much, but it still allows me to focus throughout the day and not lose any cognitive function. I take THC and CBD gummies some nights when I can't sleep, but just enough to relax me, not enough to get me much of a high. Not sure about everyone else on here, but being active helps with my pain tremendously. Spring/Summer/Fall I'm working out in the garden and on smaller carpentry and woodworking projects. That slight bit of productivity helps so much mentally. I've heard great things about Lyrica so that's the next option, but I can't start that until I get my SCS figured out because I would have the potential of not knowing which treatment is helping.

That's where I am with all of that. Want to add at the end that as bad as the pain is, the mental pain can be even worse. Nobody that I've ever talked to has ever heard of AA and they have no idea how serious it is or how debilitating the 24/7 pain is. I've been accused of "using my back pain to my advantage" more times than I can count, because there are a LOT of days where you have to be selective about what you do. The simple act of going out to dinner most days is absolute hell because of the sitting involved. If it were up to me, I would eat dinner at home every single night. But I/we do it anyways because I want to do anything I can to have a resemblance of a social life and spend time with family. Not because we care about going out to eat. So if you're on here because you're looking for advice on treatment for a friend of family member - you're already doing more than the vast majority of people, so it's probably not even worth saying. But just try to have patience with anyone dealing with this, or any other form of chronic pain. Because yes, sometimes we have to be selective about what we can and can't do. Not because we want to be lazy and not participate in something, but literally for mental sanity.

I'm not sure but if you might want to contact one of the appointment offices and they might be able to tell you. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

My friend who has AA went to Mayo Clinic. After spending 2 days there he was told they couldn’t help him. He is now suicidal.

@meri91364, I am very sorry that your friend's unresolved pain and lack of answers has him thinking that suicide is the only answer. Pain can lead to such desperate thinking. You must feel at a loss and want to help him.

Here are a few thoughts that may sound like trite and insurmountable at the same time when dealing with pain. But I sincerely hope they give you and your friend a starting point.
1. Contact the Office of Patient Experience at Mayo Clinic to understand why they couldn't help him.
Here's the contact info:
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

2. Call or text 988 the 988 Suicide & Crisis Lifeline (https://988lifeline.org/) to speak with a trained counsellor.

3. If you are worried that he may take his life, you can also call or text the 988 Suicide & Crisis Lifeline (https://988lifeline.org/) to speak with a trained counsellor or visit their website for helpful information of how to support your friend: https://988lifeline.org

Is your friend currently in the care of an AA specialist or neurologist?

There is no treatment for AA.
I know this because I have it too. I’m just trying to cope but I’m in a lot of pain.

My suggestion would be to contact Dr Forest Tennant. He has treated 800 patients with adhesive arachnoiditis. He can go on Arachnoitis hope and find a lot of very helpful information. He also has made several utube videos which are extremely helpful. He is a Godsend. There is no miracle drug for AA but there is a protocol to follow.

Check out Arachnoiditis hope on-line.

Read “clinical diagnosis and treatment of Adhesive Arachnoiditis” by Dr Forest Tennant. It contains a wealth of information. You can order it on Amazon.

mmata- I too have AA. I am sorry for your husband's pain and for your long standing trying to find help for him. I hsve had 8 back surgeries as well as several, too many to count, other procedures. My long standing pain mgt dr tried his hardest to find something to lessen my pain but after many various medications and combinations of medications as well as various injections and a Spinal Cord Stimulator implant (that helped the first almost 4 years) that was completely replaced twice, but that no longer relieved any pain for me. This pain mgt dr put his hands in the air and said he wished me well, but he didn't have any more suggestions for me. No more appt s. were scheduled. Since then I have gone to private practice drs and pain clinic drs and Neurologists and Neurosurgeons and acupuncture drs - and the list goes on. Each place that I went to for help, ended up turning me away either after a 10 minute appt or a few appts
4 - 5. I am still looking. If I discover anything beneficial, I will try to reach you here. Wishing you both the discovery of something helpful and very positive.

So sorry. I know the pain can be extremely intense. I’ve been going to a warm water therapy pool which gives tremendous relief while I’m in the pool. Of course the pain returns. I also take opiods and gabapentin plus a multitude of supplements. Has anyone tried corticosteroids and what were the side effects? I know there is no cure but I’m trying to keep it from progressing.