Arachnoiditis: Looking to talk with others

Currently getting workup to get confirmation of arachnoiditis Dx. I agree with everything that everybody says on these posts.. it’s comforting to hear that there are other people out there going through the same/ very similar things.
This is truly a hideous disease, not enough warnings are mentioned before you have epidurals, or even before back surgery. Warnings should be mentioned… nothing for me was EVER mentioned. Even when arachnoiditis was called in an MRI report and I asked my surgeons office about it .. I was told I did not have it . low and behold 4 months later with increasing pain , the exact same MRI is looked at by the same surgeon and I am asked if if arachnoiditis has ever been mentioned? Yeah!! Its in the report! Trying to stay positive but feel like I will be living the rest of my life very close to home. Pain makes it hard to do anything. Currently researching all I can to maintain whatever quality of life that I can and keep the pain at a tolerable level. I am fearful of progression. Does anyone know what or how that happens? There seems to be alot on management of pain which is of course a MUST but what about managing inflammation and nerve regeneration. Has anyone used any peptides?

@marcototti Amen, an Absolute Truth... Something you may want to investigate? I have just found it recently. Having been brought to the unfortunate conclusion. That I may have Epidural Fibrosis or potentially arachnoiditis. but it appears most surgeons. Don't care to discuss or dismiss this topic in my experience because Surgery is contri-indicated with EF... And a procedure that came about in the late 90s that actually addresses the problem. Has been ran under ground or out of town. By the huge medical device entities. Epidural lysis of adhesions. Is only available in a few states. And I'm not even sure if they actually provide it or just list it as a hook for potential new patients. So I found this protocol and was fortunate enough to find a Dr. who was willing to give me the opportunity just 2 days ago. So anyways something you might consider... https://www.researchgate.net/publication/8233322_Resolution_of_symptomatic_epidural_fibrosis_following_treatment_with_combined_pentoxifylline-tocopherol

@smn1
Thank you for this. I’ve bookmarked it and will read it.
I’ve done more research on this condition in the past week than I ever researched anything during my entire career as a medical Dosimetrist. I believe my arachnoiditis was caused by a nasty synovial cyst that was stuck to the Dura. I suffered multiple tears during the removal. .. and then for whatever reason that really doesn’t matter now multiple epidural injections were recommended to help with pain. After an entire year of suffering and questioning and reporting the same Pain, I’m now landing on this diagnosis. I do believe that the epidural injections that I had also probably made things much worse, but I don’t know if the problem was caused directly by them, I’m thinking no, but it certainly added to the scar tissue that’s there.
It helps to be on this forum to get information and Support.

Dear old Ferry Rd,
I am so glad the Lyrica is helping you with the pain. Problem “stitching “ your words together is an excellent way to describe the side effect! I didn’t have any problem with Lyrica at first - it was a great pain reliever . My dose is small 25mg 3 times a day.
Suddenly at the 6 month mark, I couldn’t talk, couldn’t string words into a thoughtful sentence. Couldn’t remember something 15 minutes later. I brought my hubby another sandwich when I had made him one 15 minutes earlier . I stared at the bread, mustard etc trying to remember what I did. Once, I took my meds twice because I didn’t remember having just took them.
We have come up with a particular way to lay out one day of meds and I can tell due to the pattern what I have already taken and what is left. But taking my meds twice really scared me. I took 2 Oxycodone, 4 muscle relaxers and 2 gabapentin within 1 hour! We called my daughter who is a nurse, and she told my hubby what he could get OTC to make me throw up. I spent the next couple of hours throwing up!! Not easy! My daughter helped me wean off Lyrica, and things went back to normal.
But now it’s spring, and with it comes extra chores. Weeding, planting, clearing - all leave me in extra pain, and I am back taking the Lyrica. Only now - I warn my family I took it and they keep a closer eye on me. As soon as I take some, I’m back to speech and memory issues. It’s sad and frustrating that something that gives such good pain relief, makes me unable to communicate well and makes me scary forgetful. And it is a small dose!

@toiolinger My husband and I have been on hormone replacement therapy for about ten years+ .
For the first time EVER I balanced my thyroid hormones.
The FDA just recently took the black box warning off of hormone replacement therapy . They know now, it actually helps, not hurts.
I am 65, my hubby will be 70. We feel much better on our hormones and plan to continue.Good luck!

@smtaylor
Can I ask what hormones you take? I am a female , and which doctor has prescribed them??
Thx!!

I take estrodial , testosterone , and progesterone. I moved from Utah to Tennessee and my primary care provider was comfortable just refilling current perscriptions. I am tested ever 6 months, and stay pretty steady. I have been on my current dose for several years now. It took a long time in Utah to dial in my dose, but once we did, we had our sweet spot. I take Naturethroid, and cytomel for my thyroid. After thyroid cancer, it took a few months to dial in my dose, but we hit the sweet spot and I have been very steady.
We retired to a small community in Tn and have a lake cottage we now call home. There are not many specialists here, and it is a 30 min drive to go to the doctor, or an hour if you need a specialist in Knoxville. We have a small grocery store 15 min away, but otherwise you are driving way more than I am used to!
As I mentioned before, the black box labels from hormone replacement drugs have been removed. Dr.s know better now. I could have told them years ago that I could not dial in my thyroid meds until I got my female hormones where they needed to be. But who listens to patients, right??

@sherij - do you now have confirmation from the doctor on a diagnosis of arachnoiditis?

How is your pain today?

@lisalucier
Recent Mri and lumbar puncture indicate arachnoiditis .
In addition , to complicate matters a dural leak is noted on both LP and MRI. I had multiple dural tears during my surgery a year ago. Possibly not fully repaired?
Pain is always present. Usually quite severe. Sometimes it is just unmanageable!!

@mdmo Lauren Seavertson. I've had Arachnoiditis for about 25 years. I now live in a suburb of Phoenix, in the cheapest retirement home in the valley. I was taking Dr Tennant's papers to my doctor's. Not one was really interested. I'm former RN & can't believe the ignorance, or attitudes of most doctor's They say the health care system is broken & of course getting worse with our new administration. My current pain clinic is a joke. I went there because every one says a pump is only answer, I had a trial of pump with Dilaudid but 95% of my pain is in my butt & down legs, with very severe, bilateral sciatica & horrible pain down both legs & bilateral pain both feet, top & bottom, & in every toe now. This all simultaneous. Sorry, but think iv'e lost about 20 IQ points. Had a substitute pain doc, since mine on vacation. She's familiar with Arachnoiditis & gave me Dilaudid ( allergic to Morphine) I didn't even have to ask. I get 2mg pills, one every 4 hours. it's better than OXY, but it really doesn't help that much... I'm fused C3 thru sacrum & all my whining is somewhere on this site. No doc's in this valley want to treat me, as a PCP. The minute i talk about managing my steroids, when i get a flare, they say they don't do that. Takes 6 plus months to get a neuro appointment & most neuros i've contacted tell me it doesn't interest them, because it's not interesting & u only need steroids. They all sub specialize. I have what looks like a small pharmacy in my little kitchen. I also get valium for, when i get my horrible, awful pain. Nothing much helps & I'm afraid the feds will come in & cut my meds, because they are doing this in Phoenix. I used to go to the hospital & beg to be hooked up to stronger meds ( used to get Dilaudud or Fentanyl & some benzos) but i'm afraid, as the damn Opioid crisis ruined it for everyone one of us with legitimate, severe pain. Since I'm fused everywhere, my pain is from top of my neck down both legs, feet, all toes. I can only lay flat & typing on the computer, is absolutely impossible. Had trial of pump with Dilaudid but not sure if it helps, cause no real back pain, it's all horrendous nerve pain in lower extremities. & in my neck & upper back, from all my hardware. I was totally paralyzed with MRSA in my spinal cord. I recovered from that some what, because i was in Northern US & got fantastic care. Now have permanent suprapubic catheter, with drug resistant. & infections & get horrendous flares & no one will manage my steroids or wants to mess with me & they tell me just take steroids, not difficult etc Can't sleep, can't use my arms much... I'm depressed & have a PHD with remote therapy. She's great, but I'm so isolated as i can't go downstairs & go to senior fitness or go to the dining room etc... I try, but i also have a torn rotator cuff & need a new shoulder... feel like i have wasted last 25 yrs, & I'm thinking that I'm going to die soon. I'm on Medicare & Medicaid, so out of most money ( of course, this get's in the way of a lot of good doctors etc) Need help, but some god docs just say they feel sorry for me. Any suggestions? Would love to talk to other's with this horrible condition. Hate Arachnoiditis & i'm sorry for typos, but feel like i am going to pass out!!! Sorry i am whining again