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Little Confidence In Medical Fraternity

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2 years 2 months ago - 2 years 2 months ago #24687 by Stacka
Stacka created the topic: Little Confidence In Medical Fraternity
Hello,

In 1983 (24 yrs old) I was a Soldier and first saw a Military Doctor about back pain. Five visits later, after anti inflammatory scripts and X-Rays (no CT's back then) I was told "Everyone has back pain" and I should learn to live with it.

Well I did up until 1989 which by this time I'd become a Professional Firefighter in Canberra. Instead of a Military Doc I consulted a local GP who referred me to have a CT Scan which was now available. This showed two protruding lower lumbar discs with subsequent advice I see a Physio. Back then there was no real effective treatment othef than traction or surgery so I began visiting a chiropractor for a year.

This provided initial relief each time but no long term fix. I then revisited a different Physio but again no real treatment was available other than traction again which wasn't really effective so I gave up and resumed "just putting up with it".

You can imagine I was now continually aggravating the protrusions with my work as a Firie but without any comprehensive treatment I again just put up with it until 1995 when I suffered a large herniated L5S1 disc. Due to the intense acute pain i was put on strong opiates and bed rest for a month and started swimming as part of my remedial treatment. After three months I was told The Commonwealth Medical Officer my career as a Firie was over. Luckily (or unluckily) for me I spent the next four months doing a rehab program (using a machine to improve core strength) over three months and with reports from the Rehab specialist and my GP, they were able to convince the Commonwealth Director of CMO's I was fit to return to my former occupation.

Interestingly there was still no core strength rehab developed yet (other than the machine) as the Sweedish Ball for instance didn't appear until some time later so again I was left to my own devices.

Well I remained relatively fit and intact for a further eight years albeit continually aggravating my back but with ongoing bed rest periods of sick leave, I battled on until 2004. That's when I severely aggravated my lumbar back at a major fire where with more scans it was found I had one prolapsed disc mentioned earlier and three other protruding discs.

This was when the real fun started. Not confident adequate treatment was available in Canberra I went to a "Spine Clunic" in Sydney where a specialist recommended I have a Total Disc Replacement at the L5S1 level. This occurred in 2005 however I developed what my GP calls "Failed Back Surgery Syndrome" (nerve pain). That's when he began prescribing opiate Meds and which I remained on until last year (9 yrs) where The ACT's Chief Pharmacist (ACT Health) ordered I be taken off these Meds which due to dependency became ridiculously high i.e. 320mg of OxyContin and 40mg of Endone per day, Lyrica 600mg and anti depressants. I'd also had a spinal cord stimulator inserted for the nerve pain but regardless, the leads broke and couldn't be re-attached and hence it other than the paddle was removed. I forgot to mention, it took me over 12 months to wean myself off the opiates but only after having a lumbar fusion from S2-L4 on December 14.

I was completely off opiates by November 2015, I'd been invalided out of my career as a Firefighter in 2012, I had the Veteran's Affairs TPI Gold Card and Pension and still have back pain.

Only recently my Physio had diagnosed my SI Joints were unstable and re-aligned the left via manipulation but now (2 days ago) my right has subluxed and I can hardly walk or put pressure on my right side.

I see my Physio later today and expect she will re-align the right SIJ which I hope will provide immediate pain relief.

I also will be seeing my neurosurgeon again next week with new scans but interestingly having seen him 3 weeks ago, he didn't believe I had SIJ instability. As such I will be asking the Physio I see today to write him a report as a means of "putting him in the picture" as to why I'm still experiencing debilitating back pain even now after 33 years.

To finish, to say I believe the treatment I've received over the decades has been abysmal would be an understatement. At almost every stage I've either been misdiagnosed, had little or no satisfactory treatment, found one physician doesn't listen to the other or specialists blindly adopting a misdiagnosis from a GP.

I failed to mention I did have steroid injections in both SI joints 4 weeks ago but given how easily one SIJ or the other becomes misaligned, I haven't noticed much relief.

I have little confidence in Canberra's Practitioners to manage my condition albeit I do believe the fusion helped me wean off the obscene levels of opiates but I also believe this same fusion has put added pressure on my SI joints and which my research says can be common.

What my neurosurgeon says next week is anyone's guess so regardless, I'm booked in to be screened by Royal North Shore Pain Unit to hopefully attend their very popular three week long "Adapt" Program.

I can only hope they actually do have a "Multi Disciplinary" approach and can help give me some quality of life after all these years. I also hope it's not simply a talk fest about my just needing to accept unacceptable levels of pain as being "my lot". Something that would be ironic given what the Army Doctor told me in 1983.

I can only hold onto the hope someone actually knows what they're doing and can understand that sometimes a patient may have more than one condition at any one time and not simply one operation or treatment fixes all, particularly given what 33 years of mismanagement can do to an Ex Soldier of 9 years and a career Firefighter of 25 years.
Last Edit: 2 years 2 months ago by Stacka.

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2 years 2 months ago - 2 years 2 months ago #24690 by di
di replied the topic: Little Confidence In Medical Fraternity
Hi Stacka,

Firstly, welcome to the site, you've finally found a place to help with getting things off your chest to people who really get you...
Man, have you had your fair share of crap, or what!
You'll get some great people call in that have exactly the same symptoms and treatments as you've explained.

I've called in to ask you to mention getting tested for Adhesive Arachnoiditis of your lower lumbar region. Your neurologist will request an MRI for the test.
I have suffered this condition for 6 years and know the pain all too well... No one here is a doctor so it is up to you to take any information, research it and make your own decisions as to what you do.

All the very best and welcome to the fold.
Last Edit: 2 years 2 months ago by di.

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2 years 2 months ago #24691 by grappers
grappers replied the topic: Little Confidence In Medical Fraternity
Hi and welcome Stacka,
Join the list of many here with failed back syndrome, how many people have to endure operations only to have them fail leaving patients worse off, while I am on one opiate, the strength has not changed, nor will it, it is the only pain relief medication I can tolerate, I also have a spinal stimulator, not with the paddle leads, touch wood I don't have problems like you have had, but then I was pensioned off before the implant so don't put added pressure on my back, it has been a bonus, while not relieving pain completely, or cover all pain areas, it has allowed me to get some sleep at night, so I see this as a bonus.

The ADAPT program, well worth the effort to do, go in with an open mind, a lot of the course will seem common knowledge and a lot of people pull out, but stick with it as the areas covered will help you in self control of pain as they all tie in by the end, they teach you tools to cope, as well as having support from being in the pain clinic, as all the professionals in that area only deal with chronic pain, so they understand better what a patient goes through.

Anyway welcome again, join in the posts, will learn off one another, give support and never judge anyone.

Don

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2 years 2 months ago #24728 by Stacka
Stacka replied the topic: Little Confidence In Medical Fraternity
Thank you all for your replies and suggestions. Since my mega post, results from a bone scan determined I had facet joint issues at the majority of levels where my fusion is in my lumbar area. So my suspicion the pain was coming from my right SI Joint was incorrect and the physio I saw after my last post confirmed there was no misalignment either.
I haven't seen my neurosurgeon yet even though I turned up on the date in my calendar only to be told my appointment was next week. Doh. This has happened more than a few times now at various practices which makes me think perhaps I haven't been wrong every time. Anyway, the Neurosurgeon did say he didn't think my issue was the SI Joint considering where I was pinpointing where the pain was coming from. So I'm quite impressed with him. At least now I have a scan that has pinpointed the Facet joint issue so proper treatment can begin. The Scan report also suggested steroid injections were an options so we'll see what the Doc says.
I should also mention that I've changed GP's after staying with the same one since 1998. Whilst I appreciate his intentions, he was the doc who after having the TDR said I had nerve pain and began prescribing pain relief over a decade. What's worse is that the majority of professionals simply adopted my GP's diagnosis from reading the referral. No wonder I have little faith in the system that I feel has let me down over the years. So the new GP I'm seeing has agreed to see me which is great as she is much more proactive about getting me sorted than my previous Doc who I think had basically given up.
Again, thank you all for taking the time to write back to me. I appreciate it very much.

stacka

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