1. < Spine Health

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.

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lanieg | @lanieg | Mar 29, 2023
In reply to @amandajro "Hello @lanieg. You will notice I have moved your post into an existing discussion on arachnoiditis,..." + (show)
@amandajro

Hello @lanieg. You will notice I have moved your post into an existing discussion on arachnoiditis, which you can find here:
- Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/

I did this so you may continue your discussion with @dadcue and @bannisterkl while also connecting with other members such as @lynetteh1 @skeeter79 @escobedoch23 and @milesdaviskindofblue who have shared previously.

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Thank you very much!!

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Hayabusa1300 | @milesdaviskindofblue | Mar 29, 2023

Hello all living with Spinal Arachnoiditis I’ve said it for years no surgeries, injections , cutting what so ever that it makes things worse but you will still have some doctors want to inject and again you have to tell them you have this disease and it’s a no .. no for any sort period be your own advocate
not a lot you can do but try to stay moving and push through the pain
Don’t give up I will refuse to let this beat me 🙏🏻 Hang in there with me folks and if anyone wants to talk you can pm me god bless

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christi91 | @christi91 | Apr 11, 2023

I'm so sorry for your diagnosis. I was just diagnosed also. Please feel free to contact me.

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christi91 | @christi91 | Apr 11, 2023
In reply to @toiolinger "I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I have..." + (show)
@toiolinger

I was diagnosed with Transverse Mylitis in 2012. My feet dropped, had to wear AFOs.I
have had a lot of pain in my back, fatigue, bowels and bladder dysfunction. The pain has gotten worse, got several steroids injections, for the past 3 years the I have had pain in my butts, legs, feet. The tingling, burning and twisting in my feet are unbearable at times. Thanks for listening.Chantaburi,

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If u don't mind. How did u get a referral to have a pain pump & are u rethinking it now with reducing your meds.

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tennis123 | @tennis123 | May 19, 2023

Hi,

If anyone is still on this message board, I need advice please. I am in my 20s and started having lumbar and sacral back pain about 6 months ago. At first it was mild. In addition to the pain, I have had a strange crawling sensation in the same area too. The pain has waxed and waned since then but now is almost always there. Most of the time it feels like I have a tight band around my back, pelvis and low abdomen. About 2 months ago, I began having spasms and feeling like I needed to pee all the time. About 2 weeks ago, I started spasming really badly in all my pelvic muscles while still having the back pain and now am barely able to have a bowel movement because my muscles won't relax. I also have terrible vibrating/tingling in my sacral/pelvic area every time I sit down. I had an MRI of my entire spine that was normal about a month ago. I've also had numerous normal labs. Believe me, I've had almost everything checked. Acute phase reactants have been normal 3 times. I don't know what to do at this point. Does anything know what this could possibly be? Does it sound like arachnoiditis? I have no obvious known triggers like any spinal surgeries. I did have myself tested for HSV-2 and tested borderline positive for antibodies but have never had any obvious outbreaks that I've ever noticed.

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1 reply
mmata | @mmata | Jun 12, 2023
In reply to @justjenna "@racelarachgirl - which doctor did you see at Mayo? I was diagnosed in July 2018 after..." + (show)
@justjenna

@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!

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I am so sorry that you are having such pain. I understand what you are dealing with daily. I have had Adhesive Arachnoiditis for a little more then 17 yeears. It keeps progressing and pain keeps spreading and has intensified significantly. From doctor to doctor I'm told that nothing is available that I haven't already tried. So I try to keep and "attitude of gratitude " and to start each day 🙏🏼 being positive about family and friends that I can talk with, and gratitude for my surroundings, in the apt and looking out my window. The TV with shows to help give me something to do, and to see if there is anyone that I can somehow help, maybe by listening and really hearing them. Maybe by somehow making them laugh. Than at night, I try to go over the day in my mind and heart and think about the many good things I have to be greatful for, big things and seemingly little things. I will say a prayer for you each day. Do I suceed in doing this daily? Sometimes it's a 1 step forward and 2steps backward. But the next day holds possibilities that may make my heart smile. Hang in there.
mmata

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heather9167 | @heather9167 | Jan 30 4:36pm

Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't familiar with it. So I tell them about. So they prescribe me meds. Well if they don't know what they are treating. How can u truly give them the proper medication for this disease. So any advice?

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3 replies
danny5 | @danny5 | Jan 30 6:04pm
In reply to @heather9167 "Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't..." + (show)
@heather9167

Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't familiar with it. So I tell them about. So they prescribe me meds. Well if they don't know what they are treating. How can u truly give them the proper medication for this disease. So any advice?

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i agree. but, to be honest with you, i'm glad they are giving you some type of pain med. i hope. cause most doctors now are afraid to do that. and then you suffer. i have a Herniated disc. my doctor only suggests PT. HUH? or a muscle relaxant. i wonder how that helps with the bones. 🤷‍♂️🤷‍♂️

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Sophie46 | @sophie46 | Jan 31 11:32am
In reply to @heather9167 "Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't..." + (show)
@heather9167

Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't familiar with it. So I tell them about. So they prescribe me meds. Well if they don't know what they are treating. How can u truly give them the proper medication for this disease. So any advice?

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I too have Adhesive Arachnoiditis. I am sorry you have this painful disease. To treat the pain I went to a pain specialist, which was helpful.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 2 10:30am
In reply to @heather9167 "Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't..." + (show)
@heather9167

Hi.I have a spinal cord disorder called Arachnoiditis. No cure and very rare. Pain Specialist aren't familiar with it. So I tell them about. So they prescribe me meds. Well if they don't know what they are treating. How can u truly give them the proper medication for this disease. So any advice?

Jump to this post

Hello @heather9167, I combined your discussion with an existing discussion titled, "Arachnoiditis: Looking to talk with others" - https://connect.mayoclinic.org/discussion/arachnoiditis/

Here are a few more discussions you may find relevant as well:
Epidural to relieve arachnoiditis pain, https://connect.mayoclinic.org/discussion/epidural-to-relieve-arachnoiditis-pain/
Arachnoiditis: Trying to find a specialist, https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

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