1. < Spine Health
Profile picture for arannek72

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

Interested in more discussions like this? Go to the Spine Health Support Group.

Profile picture for sherij
sherij | @sherij | 1 day ago

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?

REPLY
Profile picture for smn1
smn1 | @smn1 | 6 hours ago
In reply to @marcototti "@mmata573085 your comment os so lovely it warmed my heart thank you God bless you, I'm..." + (show)
Profile picture for marcototti @marcototti

@mmata573085 your comment os so lovely it warmed my heart thank you God bless you, I'm still trying to learn and come to terms with the endless suffering and how to do it with grace and positivity I'm 34 been suffering for the last 10 years with nerve/back issues no one could figure it out. Is bitter sweet to get a diagnosis finally to find out its not fixable and could possibly progress even worst is a hard pill to swallow.

Guess I have to say goodbye to the old me who could climb mountains and had energy for days, my body is broken but my soul is still beaming with light.

It's 2am on the pain train once again oxycodone,morphine diazepam,pregablin and my final friend ketamine keeping me company, I just want to say I love you all this is a hard road but we must walk it in faith this test we have received I have to believe this is just the human experience and after this on to the next life 🙏 ❤️

Jump to this post

@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

REPLY
Please sign in or register to post a reply.