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Eight Years Plus for Proper Diagnosis

4 years 3 months ago #19646 by grappers
grappers replied the topic: Eight Years Plus for Proper Diagnosis
Hi Stacka,

That is not professional at all from a pain clinic, like I have said I go through the public system, I have been with the pain clinic for 8 years and still have 6 monthly checkups with the pain specialists, so for a private facility to treat patients in this manner I find disgusting, do you have any public pain clinics around your area where you get a referral to, most big public hospitals do have one.
The only downfall may be a waiting time, here in SA it is long but we only have one major hospital that runs a multidisciplinary pain clinic, we have private ones, appointments for the pain specialists can be a bit of a wait in between appointments to, the upside is you are not forgotten.


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4 years 3 months ago #19648 by Florrie
Florrie replied the topic: Eight Years Plus for Proper Diagnosis
Good Evening Stacka,

You must be feeling as though you have been kicked in the guts after seeing the private people. I have been in your shoes and it is not easy to help but feel so let down and bitterly disappointed. We have to generally go through so much to get to this point and then all the anticipation not to mention waiting for an appointment and then to be let down. I so wish they could walk in our shoes for a few days....then maybe it would be different.

I would suggest not to give up and try and get your name down for another clinic....nothing ventured, nothing gained.

I also want to wish you good luck with your reduction of Fentanyl, nice and steady, slow and gradual and you should come out on top....good on you for being so brave and giving it a go!

Very pleased to hear that you have dragged yourself out of the depth of despair you were feeling just a few days ago are a very strong person and deserve a gold star! Good on you Stacka!

take care, all the best :)

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4 years 3 months ago #19662 by gemini
gemini replied the topic: Eight Years Plus for Proper Diagnosis
Hey Stacka,
Hope today was a bit more bearable....Buscopan is an over the counter medication,I've never been without it...if box goes out of best before date,I just chuck it & get's for those spasms (for me caused by stress,anxiety etc).
I remember asking my Pain Specialist about Pain Patches several years ago...seemed anti but all good with Opiates...& especially keen on Neurontin & now Lyrica...neither of which like me.
Since retiring on Invalidity from Border Protection 5 years ago I find my pain levels allover the place...alot of that is my various conditions,some boredom,some us being together 24/7,I also no longer have a structured out of home job to do,also too far away from 5 kids...two great dane x boys & 2 house cats don't quite fill that hole!This damn tropical ulcer on my foot for over a year hasn't helped my moods either!Well,at least my NRL team (Roosters) is picking up!Chin up & Cheers,Gemini in Darwin

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1 year 9 months ago - 1 year 9 months ago #26573 by Stacka
Stacka replied the topic: Eight Years Plus for Proper Diagnosis
Hi all,

Yes it's been two years and six months since I was experiencing the worst days of my life. I'm sure many of you have been there or perhaps are still there now. Of course it's all relative and hard to quantify unless you are feeling not as bad as you once did.

I wanted to update all the caring people (those who took the time with me) who helped me vent and seek guidance. I stopped writing on here simply because I wasn't really able to. Coming off obscene levels of opiates took me to new levels of depression and pain which I should point out was done by myself (and you guys) and with no help from any medical professional until by chance I saw a neurosurgeon to request he put in a pain pump. He wasn't keen on the idea but suggested a fusion, asking me, hadn't anyone suggested it before???

Apparently the first generation 'Pro Disc' used in the L5S1 disc replacement allowed over extension in all directions which caused all sorts of problems and subsequently pain. So a month after seeing this bloke I had a S2-L4 fusion.

Was it a success. Yes it was as I was finally in a place where whilst not out of pain, the levels dropped dramatically allowing me to begin the opiate 'tapering off' process. It took another 8 months of literally 'gut wrenching' pain but I did it and I HAVE been better off for it.

No, I'm not out of pain yet but I suspect my journey with surgeries, pain and pain relief has caused other issues, namely SIJ movement / pain and 'Piriformis' syndrome. The last one isn't properly been diagnosed yet but my physio did some dry needling in the muscle two weeks ago and whilst short lived, the pain relief was brilliant.

So, I'm still on the journey to eliminate or at least reduce the pain levels I experience but I should say my life is offering much more hope. I accept the lower levels of pain albeit it still restricts my movement but my outlook on life withot pain meds is so much better. The good news is I can ride a motorcycle with a SIJ belt and spent 14 days two months ago riding with friends around Mongolia. Yep, you heard it first here ha ha. Unbelievable experience. It seems the position of riding suits me with it's core activation and SIJ stability with a belt. I've also purchased a new Duel Purpose motor bike which I have ridden to Brisbane and back twice from Canberra to see my grandkids and last week came back from a 4 day ride out west of NSW with 4 firie mates of mine.

If I could only sort out what I suspect is the 'Piriformis Syndrome' or at least make it more manageable, I'd be a very happy man. Not that I'm not happy, I am. It's just taken me a lot of time and suffering to get to this point and I won't give up trying till I can exercise at the gym again without making my symptoms worse.

Finally, if you remember part of this journey of mine took me to a rheumatologist (well that's what he called himself) who diagnosed me with ankylosing spondylitis (AS for short). Well it turned out he was another 'Quack' as after I had the blood test to verify I had the condition and which I found out later was negative, instead of saying he'd ripped off the government (I have a Vet Affairs Gold Card) he just said I needed to manage myself - Grrrrr

Anyway, thank you all for your compassion and time during this period of my lifre. I might hang around to help others with my experiences to pay back some of this marvelous community of caring people. Fwiw, in my case coming off the opiate pain meds has brought back many of the natural feel good drugs it seemed the opiates were replacing. Well were replacing until I needed higher doses. If those higher doses weren't forthcoming it seemed I was simply in a holding pattern of pain and despair. Just saying.
Last Edit: 1 year 9 months ago by Stacka.
The following user(s) said Thank You: Johnno

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