Hi I was diagnosed with EF nine years ago. Its scarring on sciatic nerve root.. I am in constant pain. Has anyone on forum any information and experience of this.I also have nuropathic pain. I had surgery on lumbar spine in 2005.
Epidural Fibrosis: Hi I was diagnosed with EF... - Pain Concern
Epidural Fibrosis
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sweetpea-123
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Hi sweetpea-123
l have the same problem as yourself after 3 ops on my lumber spine I was left with the same symptons you have described.After years of messing about with various meds and lumber injections I was told nothing more could be done l have just recently changed my meds and l am now using pregabalin capsules they are working well and seem to be giving me some decent pain relief.Ask your GP about them, im sorry but thats the only help I can think of giving you, l hope it helps.
Hi, be careful with pregabalin as I was prescribed it for my back pain after having had a spinal fusion which didn't work, as the metalwork was put in the wrong place and a screw was put through the nerve in my leg, which can't be taken out so I'm in considerable pain constantly and can only walk very short distances with crutches. Anyway I was given pregabalin and gained three stone in weight in three weeks and was in agony, having stopped them I lost the three stone again in three weeks so be very careful with this drug, it works for some but is terrible for others, good luck, by the way I've been like this since 1993.
Hello. My husband was diagnosed with Epidural Fibrosis 11 years ago. We have not actually met anyone else with the same diagnosis as his. He is also in constant pain and takes medication to ease that although nothing takes the pain away, it just eases it a little. He has developed other problems since but they are not directly to do with the EF. He tried physio, aquarobics, tens machines, anything the Dr. offered he tried but nothing worked. He has been under a pain clinic for the last 10 years and receives regular Epidurals into the site of his operation. These usually do take a fair amount of the pain away but as he now has bursitis in one hip when the pain in his back lessens his hip lets him know that it also has problems. The meds he takes for pain are Buprenorphine, Gabapentin and Amitryptylene. The Amitryptylene he takes at night to help with sleep.
Thank you for reply. I never get to talk to pople with EF. I had spinal cord stimulater implanted but had to have it removed. Take nurontin mainly. Also had lots of injections and ketamine infusions. As result of c pain have other conditions. IBS ect.
Why did you have the stimulator removed?
I'm considering getting one.
Why did u have it taken out? I am about to start the trial.
in reply to Winnie5475
My Son has a stimulator implanted in his back, the placement of the wires has moved and is now hitting on the wrong area for the 2nd time, he had good luck with the trial but has had trouble every since then with the implant. His girlfriend had to have hers moved into a different area cause it was bulging out on her back and causing her back to be black and blue she also started an infection around the unit and had severe pain this was after it had been implanted way over a year. She finally had to have her's removed, even above the unit where the paddle like things from the stimulator is implanted cause her problems in around her shoulder blades. She also had good luck with the trial. These are the only 2 people I've know that had this done and they wished they never did. I have EF because of 4 back surgeries on the L5-S1 and I will not have the stimulator implanted. I see your post is a year old did you have the implant done?
This sounds exactly like my problem, I had laminectomy 1year ago and like your husband scar tissue has cause L5 and S1 nerve root entrapment. I just found out 2 days ago. I see Dr tomorrow but I have been devastated since receiving this MRI reading! Has anyone tried or considered Laser spine Institute for this?
I have numerous spinal problems and need an L5-S1 fusion and a TLIF. I spoke with a highly respected Dr friend who was having severe problems. I asked how he felt about the Spinal Institute as it seems the easier route. He said that he felt it is a band aid surgery and would not last. They do offer a free MRI review. You could send that in. I have spent the last year getting thru a total knee replacement so I am just suffering with the back for now. God Bless. I have constant sciatic pain and people who do not have pain are soo fortunate.
Why did you have your neuro spinal cord stimulator removed? I had one implanted in 1992
Did it work for u?
Well my pain has been reduced by about 50% which was the best I could ever have expected At least I am pain tolerable Hope this helps
Yes thank you
I see why you posed the question. I have always been told that its on the nerve. It was compared to tethering around the nerve. Also if I had know in first few months physio could have diminished symptoms. It was too late then. I was told trying to remove scarring would lead to more! Also that it was permanent. I wish something could be done. I have numbness as well in leg foot buttock. That was from ruptured disc and subsequent failed back surgery. Which is a condition in itself. Great to hear other stories. I m on lexapro 15 mg for depression. That's a whole other story. Thanks to you all
Sorry, but if you've never heard of the condition then it doesn't make a lot of sense to me that you'd discredit it with cynicism and self-promotion without actually researching it first. Yes, there are a lot of money-hungry doctors who are lobbied to by pharmaceutical companies, but that doesn't mean there aren't competent and trustworthy professionals in the arena as well. If you are diagnosed with EF, your best course of action is to reach out to as many resources as possible to get direction and support in dealing with the very long process of managing it.
I have epidural fibrosis on my left L5-S1 nerve root that causes me debilitating pain on a daily basis. The fibrosis is the result of internal scarring following microdiscectomy for a severely herniated disc, which was the original pain generator. After surgery I was pain-free for roughly 10 weeks (save recovery-related pain at the site of the surgery), then began feeling an equally intense, but different sciatic pain that hurt in different places than my pre-op pain. Another MRI with dye revealed no re-herniation, but scar tissue impinging the nerve root underneath my sacrum. This is a diagnosis that occurs in only 1-2% of all people who receive back surgeries, so there is not a lot of research behind it and there are no "cures" or easy fixes for it either.
Immediate aggressive PT was prescribed, with ultrasound, aggressive massage techniques and nerve gliding. I do stretching every day to try and glide the nerve against the scar tissue and liberate it so it doesn't become completely tethered, but I haven't noticed a change in symptoms and I've been at it for close to 2 months. I've tried epidural steroid injections, PT (nerve glides mostly), acupuncture, massage, contrast therapy, nerve blockers, and am going this week to try a class 4 warm laser therapy treatment that my PT recommended at a different facility.
The problem with trying to use massage techniques for people who get EF under their sacrum is that no matter how hard you dig or what technique you use, you simply can't get deep enough to have an effect on the scar tissue. This has been confirmed to me by my Physical Therapist, multiple Massage Therapists, my Acupuncturist, Surgeon, Pain MGMT Specialist and her PA. I am currently dependent on opioids and neurontin to manage my pain, but they make me fuzzy and unable to effectively perform my work, which requires acute mental focus and cognitive agility. I'm currently in the process of trying to ween myself off of Gabapentin and replace it with Lyrica, which I've heard is a more focused nerve blocker that doesn't cause as much mental fuzziness.
Both my surgeon and my pain specialist are recommending a spinal cord stimulator, which I am reluctant to do because it seems like a major lifestyle change and another operation is not ideal for me. I will, however, consider it if any of you can confirm that it has worked for you.
My pain is the same every day, just like the OP. It starts at about a 3 and anywhere between 10:30AM and 4PM gradually increases to a 7-9. It is debilitating and intolerable, and I used to be an extremely athletic and active person, so this has been incredibly mentally and emotionally taxing for myself and my wife as well. I'm seeing a psychologist and psychiatrist to help with the mental piece, which I highly recommend to anyone who suffers from this condition.
This diagnosis isn't a joke, and I'm learning very quickly that it's something you have to prepare yourself to battle for a long time. In scientific method you have to isolate individual solutions and try them one at a time in order to discern what works and what doesn't, so I'm in the process right now of going through my options, one at a time, and the hardest part is accepting how long that takes, and knowing that there is no "cure" for this condition, and thus being willing to accept the possibility that I may live with some amount of this for the rest of my life.
Hi there oldboyrugger, I'm so sorry to hear about your pain. I was reading your post and couldn't believe what I was reading , sounds like myself. I can totally relate to your issues . I've been dealing with my pain since 1999, It wasn't till 2007 when I had my back surgery and had scar tissue built up within days , wrapped around my nerves and several other problems . .I've had all kinds of treatments and the tens unit,
just so much..I wanted to know what the warm laser therapy was, I've never heard of it , and I read where you were getting it done , wandering how did it work on yoj?? I too , have been debating whether or not . To get the spinal stimulater, what are your thoughts on that ?? Hope to hear from you . ...praying for you to find some kind of relief . Thanks for your post . I now know there are others out there like myself . .
Hi Dawson06, I'm sorry to hear you're having similar issues. It's been months since I wrote that original reply, and not much has changed from a pain perspective, but I am in better shape mentally than I had been, and have modified my diet and routines to support a less inflammatory/aggravating physiological process. The K-Laser Class 4 laser therapy basically just entails having a professional use a high-powered laser to penetrate your tissue and loosen up areas very deep within your body, in my case the sacral areas, followed by extensive stretching routines to try and untether scar tissue. Often times I'd be in a lot more pain after a treatment for a few days as it seems the treatments aggravated more than helped, so I have stopped doing laser therapy altogether. That's not to say it wouldn't help for you, everyone's situation is different. At this point I've talked to a handful of new neurosurgeons and specialists, and all seem to agree that my problem is mechanical in nature, which means it may be possible to correct it with a stabilizing surgery like a fusion. However all also agree that even though a surgery might be my only chance at relief, they don't give me very good odds, which makes it difficult to consider since surgery is what got me into this mess in the first place, and I've spent a lot of time and energy just recovering to the point I'm at, and another complicated recovery process would backtrack a lot of the progress I've already made. As it stands, I'm still not working out in any way, but I'm able to engage socially on a frequent basis and participate in a lot of activities I used to love doing like gardening, light hiking and going to sporting events, concerts, etc., and I even got a promotion at work, so I'm able to reclaim some form of progress even if it isn't physical. Pain is still just fine in the morning and agonizing at the end of the day every day, but I'm learning to live with it for now. I still have to take pain medication every day, and am hoping to get to a point where that isn't the case, because that's never a long-term strategy. My best advice is still to engage as many different professionals from as many different disciplines as possible to get an accurate composite perspective on exactly what's going on with you individually, and never neglect the mental piece of your recovery. Keeping your head in the game and finding the strength to fight through this constant struggle is the only true cure for something this frustrating and persistent.
As far as a spinal cord stimulator goes, I've heard pretty much only horror stories about them, and many people get them removed because they either don't work or the lifestyle change and discomfort from having one are worse than the original pain. I've also been told that for a person my age (32), the SCS is basically a sentence to a sedentary life, and it really isn't recommended for someone who has aspirations of being physically active on a frequent basis. Can only speak for myself but the SCS will be a final resort only after having tried every other possible approach, including possibly additional surgery.
Wishing you the best of luck in finding relief and perspective on how to work through your pain and get back to being the person you know you are.
OldboyRugger,
I thought I was alone until I read your post, It brought me to tears. Thank you so much for sharing your story, it helps to know there are others that understand what you're going through.
Hi there- I feel like this is exactly what I'm living but it's my 21 yr old son who is going through it. I wish we would have known about this before he had his first disketomy. I wish we would never have had the surgery in the first place. It's been a nightmare ever since. this is his 7th month and 3 surgeries later. He feels he has nothing to look forward to. 21! He feels his life is over? I would.give my health anf life for him. .
😢
Has anyone tried Laser Spine Institue for Epidural Fibrosis? I really do not want to be in this shape forever, I have aspirations to become a RN, I am currently in school, just had a neck fusion in December and my Lumbar was last Feb/2015. Just got the news of the EXTENSIVE Epidural Fibrosis at L5 and S1 nerve root, I am desperate to get back to normal though all my problems point to disability. I have Psoriasis, Psoriatic Arthritis which also mimics Rheumatoid Arthritis, Fibromyalgia, several different reasons to have different style headaches, sinus obstruction being one, migraines , L4-L5 disectomey 2 times, then Lumbar Laminectomy L4,L5, S1 and Cervical Fusion C5,C6,C7; low Vitamin D3, early Menopause.Burcitis in both hips but Left hip far more prominent , now Epidural Fibrosis to the left on L5 and S1 nerve root, arch in my left foot has fallen a lot, Dry eye syndrome.
I have gotten to the point where I am not able to clean house, I can't sleep at night due to having to move around cause of the pain. Since I am in school I can not take the Gabupentin due to mental shut down it caused me; though it helped my pain, and Lyrica makes me drowsy all day.
Any suggestions would be helpful !
Dear Valerie.
It is my twin sister that was diagnosed with epidural fibrosis and was dealing with terrible pain for 5 years (now she is thanks God so much better!) but everything else I shared with her. It is so important not to listen to just one "type" of doctors but search yourself for all the possibility regarding your overal health. It looks like you have a great digestive issue (we've been dealing with it for many years) It would be a long story to write about the digestive problems so I only suggest to try to clean, fix you digestion and you will see how everything changes for better. For example Dr.Axe has a lot of knowledge in healing all kind of chronic deseases. There is always hope. Wish good luck and faight to all of you struggling.
I have a patient with EF, he came into our office in extreme lower back pain that radiated into the his right leg to the foot.
At the time of his initial visit into the office he had surgery 5 years ago on the L5/S1 disc. For a few years he was pain free, and was back to his normal routine of working out, slowly the pain came back. We did our initial examination, x-rays, and designed our traditional treatments, with some relief. With some relief from the treatments he was still having the pains radiating into the right leg. I ordered an MRI, and that where he was diagnosed with EF at the S1 nerve root. He was put into a program in the office: ARP Wave Therapy. The first phase of the program is for rehab, that will detect the source of pain and with the wave goes to eliminate it.
In the second phase of the treatment the wave is used at a level, to strengthen the patient's areas of injury.
The results were the patient's pain was reduced significantly, to a point that he can control the pain using a natural therapy. There are certain movements that will agitate the radicular pain, but the recovery from that is shorter.
I can not say this is for every patient with EF, but is an alternative to other programs.
I just found out yesterday that I had EF I am still dealing with the fact that it has no cure. Im devastated and trying to stay strong and deal with it. I can barely walk long. I am limited. I am trying different options but from what I read i do not want to get SCS. My insurance don't cover it. I had my surgery in March and was good for almost 2 months. Not fully but less back pain i could do more and then it EF hit. I thought it was just me going back to the way I was when I first got back pain bad. Limitations suck I already had limitations but now its way more. I wanna look into counseling to help with the emotional part of this issue. Just thought I would share and its good to have people to relate to because they say its rare.
Hi Mowhawk I just wanted to reply to you as I have recently been diagnosed with EF surrounding my si nerve root. I had a spinal fusion at l4-l5 in April of 2015 and after the initial recovery I was doing great. It didn't last long however and I started to wake up in the night with my leg tingling. Then the pain was back. After a second go at physical therapy my therapist said she would no longer work with me until I had an mri from my physician. Sure enough EF. I was sent back to pain management and went through the epidural phases and also lysis of epidural adhesions without any relief. I'm now waiting on a spinal stimulator trial to see if this helps. I take Lyrica but it provides little relief. I'm also in therapy for depression which helps some to have at least a sympathetic ear, even if she's getting paid for it.
Hello! Thank u so much for replying. I really appreciate it. Its not nice having EF let alone u wouldn't wish this upon anyone bit I am glad that someone can relate. I felt so alone and even tho I have a good support system my family n friends I still felt so alone. I am on pain meds for life. Nerve meds Gabepentin and hydrocodone 3xday and I can't miss a dose. I also take vitamin E my Np is the one who helped me. I got to pain management and been waiting to get some needles. I have had 10 all together in 2015 and I recently found out i had EP and they wanna do what they call cadaul or something haha I am not good with remembering names of stuff. I got a walker to help me get around the house n it makes me feel more independent. Did u ever take Gabepentin?? I take 3 pills each dose.
i am going through the exact same thing. No one understands the kind of pain we r in. I have to say I'm a little devastated after reading a lot of these posts about the failed spine stimulator. I'm 41 years old and my whole world has stopped due to this pain.
Yeah i tried the Gabepentin early on but for some reason they made my hands fall asleep. Both of them, as soon as I got up to the dose the doctor put me on. Can't remember what it was though. Now it's 150 Lyrica twice a day, hydrocodone 10's four times a day and 300 wellbutrin once a day. I've also just started taking doxepin at bedtime for sleeping it seems to be working good. I had that cadual lysis in October he went through my sacrum and all I ended up with was a bruised tailbone for about two weeks. I do have support from my family but it's nice to know someone who truly understands the endless pain. I wouldn't wish it on anybody no and I'm sorry that you have to deal with this also. Hopefully at somepoint there will be some kind of relief.
Hey there! I just decided to check if you replied n sure enough u did. The gabapentin is working for me but my hands do feel funny. I use a wallet around the house which helps but when I push it with my hands my hands feel weak. It wasn't like that right away but I thought it was just me. I take hydrocodone 5/325 whatever that is. Haha I am not sure if they r strong or not. I mean they work for me I take 2. Well the mix of that and gabapentin help ease da pain somewhat for now. I am using the pool at our diabetes center called "Lets get healthy" I got assessment next week and I will be able to use da treadmill n bike. Can't do much but I wanna keep moving somewhat. What about you? Are you able to do any exercise or anything??
Lmao I use a walker around the house not a wallet. Omg this phone always changing my words on me Haha
Do you have any information on EF? I was diagnosed with it 4 years ago following surgery on L5 S1 herniated disc. I had 5months with no pain then it all started to return. It has changed my life and my mobility and I just don't seem to get very clear explanations about cause and effect from consultants. I've tried lots of drugs and they all stopped working. I am now trying to manage my condition but need to understand it properly to do so.
Wouldn't it be cool to have a dating site just for EF? Nobody understands it where I live. They here the 'disabled' bit and run for the hills lol. Any thoughts?
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