Constant nerve pain!!!!!

[Kellee1975]

Hi I have been diagnosed with epidural fibrosis after being told that my surgeon wasn't prepared to operate on my lower back again after scar tissue had built up around the lumber root nerve, this has left me with constant pain from morning till night, even with strong pain killing tablets, this has effected my life massively, I was thinking of going for a second opinion to see if this would be beneficial for my back to be operated on gain, to try to regain some normal quality of life, has anyone ever has surgery to remove scar tissue from the nerve? If so was it a success?????

[Hidden]

Hi

I'm sorry but I haven't had this type of surgery.im sure someone will be along shortly with some advice. You are in my thoughts and prayers. I'm in constant pain due to my many conditions. Sending lots of healing hugs your way . Lynne xx

[Kellee1975 in reply to Hidden]

Thank you, xx

[Hidden in reply to Kellee1975]

You are very welcome. Love and hugs Lynne xxxx

[Sgoodwin70]

I would get a 2nd opinion ....I am sure it would help..can you go private for a 2nd opinion?

[Jtal19305]

Hi There,

Please describe your pain. Locations, duration, type (i.e., burning, stabbing, throbing, prickly, searing, diffuse), levels, etc. What relieves it, what triggers it, what makes it worse, etc. Also, how was surgery performed (i.e., the entry - from the back?, how many spinal levels affected, what was removed, hardware?). Scar tissue is one of those things the back surgeons never talk about when offering you surgery and discussing the so called benefits of surgical intervention. I had back surgery 4 years ago to the day almost and I have chronic pain in my left foot (sometimes my right foot), and left leg. It is burning pain, and sometimes the pain is lighter and sometimes heavier. I am currently in pain management, taking a few meds to provide relief. I am not sure where you live but in the USA there are some doctors which specialize in revision surgery (redoing back surgeries that did not go well). I know one such doctor in South Florida if you are interested, let me know.

JT

[Hidden]

If you are in the UK, you could ask for a referral to one of the neurosurgeons at the National Hospital for Neurology and Neurosurgery, Queens Square, London. It is a centre of excellence In complex spinal surgeries. uclh.nhs.uk/OurServices/Ser...

[Emma2017]

Hi Kellee, I know what you mean. It is an absolute nightmare. I have had 3 spinal ops in 2 years at the L5/S1 level. it has left me with the inevitable scar tissue, which is called epidural fibrosis. In my case it wrapped itself tightly around the sciatic nerve. It causes very disturbed nights and during the day it swings from medium to unbearable pain. They took another MRI to rule out anything else. I discussed it with my surgeon, who happens to be one of the top ones around, and he explained that going in to remove it or something could make it worse. He said its not that I don't want to operate on you again but the act of removing some of it is no guarantee the pain will disappear or in the worst case scenario it is just about impossible to remove or I remove it all but the new operation to remove it will create it's own scar tissue leaving you in the same or worse boat. Instead he referred me for another spinal injection by x-ray, myofascial therapy and a spinal physiotherapist. The physio has given me nerve flossing exercises. It's early day yet but hopefully things will get better. I feel for you as your surgeon should have discussed things better with you, but I don't think you will get any other answers from a good surgeon.

[Queenielot]

Hi i didnt have back surgery has i was told the side effects by my sister in law who is a sister/matron at a hospital so i didnt go for it im in a lot of pain with diffrent issues but ive learned to live with it among all the tablets so im sorry you went through all this and are in so much pain i wish you all the best and sending hugs to you

[Dougydoug]

I have the same condition after 2 back surgeries. It’s particularly demoralizing and painful and I’m terribly sorry to hear about anyone else suffering from it.

I have not been able to find anything that claims to be a long-term “fix” for this condition - but I’ve decided to start posting on this topic occasionally because with the help of a local PA I have found something that is giving me a Ton of relief so far (2 months) and after 2 years of daily pain - I have many days where I can Almost forget the condition.

if this helps anyone else - wonderful! The treatment is LDN (low dose naltrexone)... 4.5mg at bedtime daily is what I take. It’s not addictive and doesn’t make you loopy. It seems to act as an anti-inflammatory for nerve pain - and at least for me it seems to precisely target my pain.

Obviously - it is not a cure... and I still have to be careful not to do things which cause a flare up of pain/sciatica... but those flair ups are only about 20% of what they used to be...