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Epidural Fibrosis Options: The Lesser of the Evils?

Hi everyone!

This is my first post, so I'll give you guys a little bit of background.:) I'm 21, and started experiencing pain due to L4-L5 and L5-S1 herniations when I was 19 (not 100% sure what caused it, but I used to lift 100 lb baby calves at work for 65+ hours every week, and I was almost mauled to death by an angry cow right around the time I started having pain). I had to leave my job in March, and I've been on Worker's Comp ever since (what a pain in the butt that is). I've been through 2 rounds of physical therapy, 3 cortisone injections, and a bilateral lamenectony at L5-S1 in May of this year. Nothing has been done to the herniation at L4-L5, but it is mild, remains unchanged, and doesn't seem to affect the nerves at all. I've tried ibuprofen, meloxicam, ketorolac, and cyclobenzaprene with no success, and have had limited success with prednisone and oxycodone. I'm coming up on 6 months post-op, and I actually seem to have deteriorated from my pre-op condition. I still have full motor function, which I'm so thankful for, but my pain makes it very difficult to do even basic things like laundry, washing dishes, laying in bed, etc. I feel like I'm way too young to be this miserable! I feel terribly when I have to ask my boyfriend to help me with really simple tasks such as tying my shoes, and I'm deeply concerned that my injury will prevent me from becoming a mother in the future.

Enough about me, on to my point! My most recent MRI shows that my S1 nerve root is surrounded by scar tissue, which leads me to the diagnosis of epidural fibrosis (unconfirmed, as I can't get in to see my spine specialist for another 2 months). Correct me if I'm wrong, but all of my research tells me that there's really no good treatment for epidural fibrosis. Here's what I've found as options:

Surgical Removal of Scar Tissue: Based on my reading, scar tissue grows back, so this would have to be done repeatedly, if I'm not mistaken. I also read that it may grow back worse after it's been removed, and there's the potential for nerve damage. (I also have an allergy to a certain anesthetic that makes surgery much more risky for me, so "annual surgery" is a huge NO in my book!)

Steroid Injections into Scar Tissue: Again, potential to cause further scar tissue growth and/or nerve damage. I didn't see anything to support their effectiveness either. Plus, those injections are no fun!

Gabapentin/Lyrica: I've read good things, but the side effects are sort of a turn off. Drowsiness and the potential of worsening my depression.

Spinal Cord Stimulator: This, I'm very intrigued by, and my specialist seems to think it's a good option! But, in my reading, I found that they weren't effective for some people. I'm also concerned that they would have to disturb the scar tissue at L5-S1 during the implantation, and cause further scarring. I'd be really interested to know what those of you who have them think!

Other Pain Management Medications: I haven't done much research in this area, but I'd love to hear what drugs other people have been prescribed and how they work! Also curious as to the benefits of medical marijuana, if anyone uses it. I've tried sublingual CBD oil with minimal relief.

Sorry for the long post! I'm hoping I can use this site to connect with other people who are affected by epidural fibrosis and find out what, if anything, works for you.

Thanks, Laura

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Comments

  • Hello Lalalaura

    Welcome to Spine-Health

    Please use the link below for more information about and inside Spine-Health

    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • Hi Lalalaura

    Firstly, you may not think so because of your injuries and ongoing pain, but you are one lucky lady to have survived that angry cow's attack.

    Your lifting was far outside of the guidelines in the UK for females, but not sure what your guidelines are where you are.  I hope you were given manual handling training to give your back the best opportunities of safety during lifting.  If not, this is definitely something you should research for your future to protect your back from further injury.

    I was prescribed Lyrica (pregabalin) after my second surgery, as I had scar tissue but also dealing with nerve pains in my legs.  It is good in lots of ways because I was on the waiting list for my third surgery for over a year and needed help in that area.  The side affects I have suffered have been trouble with memory, sometimes finding the correct words in sentences.  There is definitely a need for willpower with eating and the last symptoms I get and have to very very careful with, is the need to clean and sort and organise.  I call them my gabba moments and at times have found myself trying to colour code my whole wardrobe!  This is not something I have never wanted to do :-) .  It does help with outfits though lol! So I have found good and bad and definitely the need to be aware of these side affects and to act within my limitations.

    There is lots of information to research on Spine-health so I hope this helps you.

    AJ

    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
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  • lalalaura107llalalaura107 Posts: 1
    edited 10/13/2017 - 10:42 AM

    @AJGormit

    Hi AJ,

    Thanks for your response! The real kicker is that my bosses wouldn't sell the cow because she was making a lot of milk, despite her trying to attack me 3 times after that, and having attacked 5 other women! Some cows just don't like other ladies. But I still love them, I have 2 calves at home that my boyfriend helps me to care for. I have no idea what our weight restrictions are supposed to be here in the US, but 100 lbs is definitely a lot for a woman who's not very tall. Sometimes I'm frustrated that I took that job, because my life would probably be a lot different if I hadn't. But that's how life goes, and it won't get the best of me!

    I'm so glad to hear that you had a positive experience with Lyrica! Maybe your gabba moments would help me with my studies.:) How much pain relief would you say you had when you were taking it? That would be helpful to know when weighing the side affects against the benefits. Was your pain related to your herniation or to scar tissue after your first discectomy? I hope you're doing well now! 

    Best of luck, Laura

  • Glad you are getting help with your calves, to give you time to sort this problem out.

    The guideline weights for females lifting from waist height, close to the body is approx. 35lbs and from the floor under half that weight.  Clearly these are guidelines but it is good to know these as these have been researched and put in place to prevent injury from bad lifting in the workplace.

    The pain relief I had was directly linked to nerve pain, which would have been from compression and maybe scar tissue build up, as this was noted on one of my MRIs.  I had other pain relief for other areas.  Maybe a good thing for your studies as you say lol!

    Thanks for asking about me Laura, I am recovering slowly but surely from my fusion surgery, so hoping this will stay positive for a some years at least :-).  I have DDD, which is affecting lots of discs, so it is an ongoing thing to deal with.

    Laughter and sunshine help me :-)

    AJ



    AJGormit

    ---------------------------------------------------------------

    L5/S1 herniation Apr 2013
    nerve root injections Oct 2013
    L5/S1 discectomy Jan 2014
    L5/S1 nerve roo &, facet joint injections & edpidural Jan 2015
    L5/S1 revised discectomy, L4/L5 discectomy & Wallis Inswing Stabilisation L4/L5 May 1st 2015
    L4-S1 TLIF with decompression June 2017
  • lalalaura107llalalaura107 Posts: 1
    edited 10/13/2017 - 12:59 PM

    @AJGormit

    Thank you again, I'm glad to hear you are making progress. It also makes me happy to hear from another very positive person, you've dealt with this sort of thing for longer than I have and yet you're still sharing your positive influence! 

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  • Hey there, 

    I’m 21 as well & am just going on 3 months microdiscectomy. Just a few days ago my pain has come back. I made an appt with my surgeon but I’m still two weeks from that. I’m scared that I now have epidural fibrosis. I’m just curious to see what you’re outcome is and have you experienced any pain since. I have been freaking out as well that this will effect my 

  • LizLiz Posts: 9,658
    edited 06/29/2018 - 2:16 AM

    The member who created this discussion has not been back to the forum since so I have to close it.

    If lalalaura107  comes back and requests it we can reopen it for update.

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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