A cry for help, can anyone help or diagnose back & leg problems?

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My Health History

By

Glenn

First of all, there is one reason and one reason only for writing this and it is quite simply a cry for help.

I am about to turn 39 years old at the time of writing this and have been suffering with health problems for the last 15 years, all of which started off with lower back pain but has since evolved into something much, much worse .

So please, if anyone has any knowledge, understanding, treatment, advice or procedure they know of which may be of benefit to me here in the UK I beg you please at the end of reading this that you get in touch.

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As I said, my troubles started at around the age of 23, whilst living as a young man at the time working in the bar trade amongst other activities. I suffered from aching in my lower back for a good few years prior, but always put it down to just my height (at the time as far as I knew was around 6ft 4”) and all the heavy lifting of crates of beer in my profession. One day I was walking a very steep hill at the time and experienced such a massive influx of pain into my lower back whilst walking a very steep hill, that I actually went down onto my knees in tears with pain.

I saw a doctor at this time and had all the necessary checks done, and according to their results there was nothing visibly wrong. I was therefore sent packing with painkillers (Dihydrocodeine) and the term Mechanical Back Pain as a label.

I carried on from this point and suffering more and more each passing month.

I was so certain there was something going on in my lower back and to me it was impossible to think that this pain wasn’t somehow visible on any scans. The problem now however was not only was I struggling with back pain but heavy depression started to settle in. I had to leave my work as I was physically unable to do it anymore, and my once extremely active social life had disappeared completely. At this point the different copious amounts of painkillers and anti-depressants didn’t help matters either, you name it I took it (legally) to try and help matters but nothing helped much at all.

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It was now several years later in 2005 when we moved back to my Wife’s hometown to be closer to relatives for support, and things were at an all-time low, so we went to see a fabulous new doctor who ordered more tests to see exactly what was going on.

Low and behold the tests showed a loss of fluid in my L4/L5 disc, and I was promptly referred to see a spinal team at a local hospital for options on how to fix it.

After many rounds of excruciating physio, water therapy, acupuncture, you name it I tried it, it was proved to the spinal team that nothing was helping and surgery was the next best option. And so I was put forward for a Posterior Lumbar Interbody Fusion (PLIF).

Now for those of you reading this that do not know, a PLIF is where they put something similar to a cage within the disc space and hold it in place with plates and screws. They then shave some bone off your joint, in my case my sacroiliac joint, to place within the cage. All of this procedure is to encourage the whole space in question to fuse together and thus make the area one whole piece of immovable solid bone.

It didn’t work.

In fact, not only did the bone not fuse but my pain was much worse at this point. I went on to have different types of procedures to try and correct the issue such as Facet Joint Injections, Sacroiliac Joint Injections and so on. Nothing was helping and now in addition to the pain from before was a terrible knee buckling pain whenever I weight bared, whether standing or sitting.

The professionals then agreed that the fusion had not adhered and had been a failure.

So now came a biggie!

I was scheduled to have an Anterior Lumbar Interbody Fusion (ALIF) with Bone Morphagenic Protein (BMP). Once again for people who don’t know, this is where they basically go through your stomach to do the same procedure as the PLIF. This time however they were going to use BMP which in basic terms is artificial bone substitute. This was a tricky procedure as hitting any of the main arteries running through the body in front of the spine is lethal.

The operation was deemed a success, but boy were they wrong!

Almost immediately after waking up from the operation I began experiencing leg pain, unlike anything which had come before, and don’t get me wrong I did experience sciatica through the years also. This however was AND STILL IS hell.

I sit here now in September 2013, bedridden as I have been for years now, suffering an excruciating pain in both legs which now on more days than not over takes the pain in my lower back and hips. It is extremely hard to try and describe the pain, but the best I can do is to have you imagine a constant migraine in your legs with someone coming along every 5-10 mins or so giving them a nice big smack with a clenched fist! That’s no exaggeration either and that is continuous through day and night, in fact I haven’t slept for more than 1 hour straight in over 5 years!

Now the most infuriating news followed. The ALIF was deemed a complete fused success according to the MRI’s and X-Ray’s, BUT I felt no better in my lower back only WORSE and now had these legs to contend with as well. On top of this the spinal team says they do not know what the problem with my legs is and don’t understand why I still feel pain slightly worse in my back. Isn’t it amazing how doctors can go from hero’s to making you and the people around you feel like you’re making the whole damn thing up?!

So, after the longest most painful experience of my life up to that point, waiting, suffering, going insane, the spinal team now believe that it is the metal work holding all the parts together that is at fault, and so an operation is scheduled for 2010 to remove the plates and screws.

I suppose you can guess at this point considering how bad my luck ran to this point, to whether or not things improved?

The answer was a big NO, and even though the pain in my back stayed at its very worst my legs were getting progressively worse.

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It was now 2011 and I had to do the thing most people would have in my situation, and that was to get a 2nd opinion.

I therefore moved on to a completely different spinal team in a close major city to see what they thought. The news wasn’t what I wanted to hear and it hit me really bad. They couldn’t understand what was causing the pain in my back or my legs and I walked out of there with the new label of suffering from Failed Back Syndrome. So I had suffered from multiple major surgeries, procedures, and years of hell just to be awarded with a new label which basically meant “We don’t know what’s wrong with you, tough shit and goodbye!”

The one thing they did confirm however was that the screws in the metalwork must have been loose, as scans showed this to be the case. Great! Thanks very much for that as it helps me in no way whatsoever!

I sit here now, just about, in my bed 2 years later on taking high doses of Morphine, Gabapentin, Oramorph, Trazadone, Duloxetine etc etc. If it’s for pain, nerves, depression, insomnia, you name it I’m on it or have taken it at some point.

I spend every waking moment in bed writhing in pain now, which is just the worst you have no idea!

I have children I can’t play with, a Wife who tolerates everything (and always has) alongside me, but I cannot even make a cup of coffee for, and no hope for the future.

If anyone is suffering like me, knows anything about what I am experiencing, knows WHAT IT IS that’s wrong with me, please please get in touch?

I need help right now, we have no family that can help us and I have no friends at all due to my years of captivity, and can sure do with some!

This is my cry for help x

1 like, 4 replies

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4 Replies

  • Posted

    Hi there Glenn, things not too well there either eh? I know full-well how you feel emotionally and how your pain RULES your life.

    I, like you, have undergone a bone fusion. In my case the Hartshill Horseshoe procedure was used, inserting the `shoe` from the front of the body leaving a huge scar down the stomach and hip. This was done around 12-13 years ago following several other operations, including a laminectomy, countless injections of various drugs, a Lumbar provocative discography, physio and all the rest that goes with...And hey presto...Nothing but chronic pain to show for it!

    Nothing can be done. The surgeon has given up on me and retired, his replacement couldn't (or wouldn't) do anything to help, and now there is only my GP to help. I must state that he has been wonderful in helping me through this long experience.

    I recently had a scan which showed absolutely nothing wrong with my spine. No slipped discs, nerves trapped or interference of any kind. This obviously left me even more worried about the future and what was to come. Then out of the blue my Mum was talking to a long lost school friend who was telling her about her husband, who was suffering the same awful problems as me. And he was eventually diagnosed with the little known, but hideous ailment ARACHNOIDITIS.

    Arachnoiditis carries all the ailments that you (and I) suffer from. There are not many people who suffer from this, and even my doctor knew little about it. I may be wrong Glenn, but if I were you, I'd look in to this and see if you are a sufferer. I hope you are not, as there is no cure and all painkillers are ineffective in preventing pain.

    I take Oramorph, DF's, Gabapentin, Tramadol and Morphine tablets and am still in big pain. It was very hard to accept that I was a sufferer, but at least I now know one of the reasons why I am in so much pain.

    Hope this helps a bit mate, and don't forget you are not alone suffering like this.

    Good luck, Steve.

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  • Posted

    Hi Steve,

    Sorry for the delay in getting back to you, I won't lie and you probably feel the same most days but I just couldn't get the motivation up to even use the computer lol.

    Thank you so much for your kind response and really good insight into what this could be, and as a response I have already written to my doctor for referral.

    In fact, due to all the feedback I have received so far from you wonderful people I have asked the doctor to refer me, not only for testing into Arachnoiditis but also into muscle disease and neurological complications.

    Once again thanks so much Steve, where abouts in the world are you based? I'm in the UK specifically England.

    Would love to speak again soon, I'm having to share a pc at moment but when the new iphone drops through the door I'll be able to read and respond much better.

    Also, I really feel for you as well. You are on practically the same meds as me, with me having a few extras added in lol. Its easy for me to understand just how bad it must be for you as well. Keep that chin up mate and know that you have really opened doors for me this week and are a real benefit to people like me.

    Thanks so much again for taking the time to respond.

    Kindest regards,

    Glenn

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    • Posted

      Hi glen, I know it's been a while since you posted but I stumbled across this while doing research on arachnoiditis, I am so sorry you are suffering the way you are, jow are you and is there any updates in your situation?

      I had a lumbar fussion 14 years ago and was told I'd return back to work 3-6 months later, well up to date I have never been able to return to work, I had upper back pain from the onset of surgery that went on for 7 years, after requesting an MRI it took a further 3 years and countless scans before I was diagnosed with a thoracic arachnoid cyst and spinal cord compression, I also now have cervical degeneration, multi level bone spurs and disc bulges and lordosis.

      I have been on so many opioids and other pain killers, been through withdrawal 3 times, have 10 faucet and sacrialic bilateral joint injections every 4 months but arnt working so well any more and like you just in constant chronic pain 24/7 it is almost sending me mad, I am doing research into arachnoiditis now to see if this is the cause of my pain.

      I hope your in a better place now and have some answers to your pain 😊

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  • Posted

    Glenn,

    Just wanted to say I'm sorry for the pain you are going through, I'm just starting on my journey of back issues and having never dealt with pain really struggling with a large herniated L5/S1.

    I'm in London and spending lots of money on private physio's with limited success now which is mentally draining

    Sincerely hope your fortune changes mate and keep up the fight

    Jay

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