Chronic pain

[axol36]

I've had a lifetime of struggle with a congenital hip, finally at the age of 47 I had to give in and have a total hip replacement this was to be a new lease of life to me! The only warning was NOT to lengthen my leg from a professor, you guessed it the surgeon in his wisdom ignored that fact and lengthened my leg which has now left me in chronic pain from my back down. It's so frustrating having to have someone in to do even the simplest of things that in a previous life I'd do in the blink of an eye, thank heavens for my wonderful wife without whom I'd be lost! Just like to say a BIG THANK YOU to her and all the unpaid carer's out there!

[Rocky1]

It's nice that you have written such a lovely post thanking your wife, you must be going through a lot but shows what a strong person you are despite all you are going through.

[axol36 in reply to Rocky1]

I certainly don't feel strong! but I have got great support!

[Hidden]

FGS - when will one medic respect another medic enough to follow instruction? And innocent people are caught up in it all. Professors don't gain all that knowledge and skill just to be ignored.

Very sorry to hear this. In time you will be stronger and be able to do more things. Unfortunately recovery is slow and not very steady.

Treasure your wife, she is a star.

[axol36 in reply to Hidden]

Yes and the best bit we have no come back against the surgeon..........I signed the consent form lol

[Hidden in reply to axol36]

That can't be right. Did the surgeon discuss leg lengthening with you beforehand?

[axol36 in reply to Hidden]

My run up to surgery was not the easiest I had a consultant who agreed to do the op and said it would be a priority case and that I wouldn't have to wait the 16 weeks wait. Due to what ever I waited nearly a year THEN he went on sabbatical so I transferred to a new consultant got a date to have it cancelled last minute then I was put to the back of the list, after much complaining I finally got a date and met the consultant for the first time 48 hours before the op, during that time I reiterated what the professor had said in a letter to him that leg length was not an issue, his exact words "I'll see when I get in" and that was the end of conversation.

As I'm typing this even I can't believe all the twists and turns and there was more!

[Hidden in reply to axol36]

I understand now. He covered his back by saying that. You consent allowed him freedom to do what he thought best at the time. And all the changes in consultant too didn't help.

Thats been such a long and stressful time for you. Hopefully you can settle down and find a new normality.

[Hidden]

Join the club!

I am 55, and similarly misdiagnosed (despite screamingly obvious symptoms!) until I was 21, even had unnecessary Osteotomy above my knee (knee pain, a classic symptom!) at age 8 which made me a lot worse!

Being male, of course and as no-one thinks boys suffer from CDH, (now DDH!) so they just ignored the bleeding obvious, and I never saw a different Consultant until I was 21.

I ended up retired at 37, the Osteoarthritis set in there and in my lower spine by the time I was about 33 or 34. The tilt and bad gait causes a lot of damage, as you seem to have found out more recently! I can relate to that problem as an Orthotist tried to "level me up" with built up shoes more than 15 years ago, and that had me completely immobile too in a matter of a week, so levelling up the bones is going to do even more! - once your skeleton has got used to being in a certain position, it doesn't take kindly to being messed about with once your bones are fully hardened as an adult, and your ligaments haven't got much give in them!

Not had a replacement as I don't see the point, now the pain is 90% or more back related, the hip, despite looking horrific on X-ray is a minor discomfort compared to the back and nerve pain. Had all the same warnings too, not one of 4 Consultants I have seen in the last 20 years thinks any pain or mobility improvement will come from it, plus the first Consultant was similarly in need of a replacement himself, and he held out to the very last as he knows how they don't last very well in big and tall men (fine for 7st 80yo old women!) - such as my father ( a skinny 5'6" thing then!) had 16 years out of one of his... my mother (a NOT at all skinny thing!) had 3 years out of her knee replacements before they had to be replaced).

Of course the problem now is that the DWP think I am fine!

[Hidden in reply to Hidden]

Surely you can get a statement fron the consultants for the DWP that back up their advice that surgery is not possible as it would cxause more dsmage than it would solve, and this leaves you with pain, reduced mobility etc.

[Hidden in reply to Hidden]

The ability to have a condition treated it or not treated is is totally irrelevant for the purposes of ESA, it's all about how you fit in to particular arbitrary and not very relevant categories. The idea behind the system now is to pay benefits to as few people as possible, not to pay them to those who can't work due to their conditions!

[axol36 in reply to Hidden]

Hi Picton

Not a nice thing to say but thank god I've found someone else suffering the same / similar situation, said in the nicest possible terms!

Like you mine wasn't picked up until I was around 18 months (kept falling over.....) numerous operations ensued we aren't sure of numbers but the Professor I saw reckoned 8 - 10. My father finally called a halt to it all when I had a plate come out the side of my leg, of which they had no knowledge!.

From 5 years up until 47 I struggled on as best I could, finally beaten by the pain I had hip replacement, the worst decision I ever made, pre surgery I knew more or less where my pain was, not post surgery may back hip legs are all affected.

The devastation to our lives has been immeasurable loss of job, had to move home to get rid of mortgage moved from west sussex up to teesside.

The worst bit is the surgeon gets to carry on life regardless, leaving us to fight the pain, and don't get me started on DWP............

[Hidden in reply to axol36]

I never had any relevant surgery at all (I have met a couple of people that had bone blocks around the acetabulum to keep the joint "in" and were doing fairly well 20 and 30 years later although for them Osteoarthritis is still inevitable, just it will be a lot later), but as mine was not diagnosed at all until adulthood, (21 YEARS, not months!) it was too late, and the dislocation was quite significant making replacement the only option, although it wasn't given to me then due to the likelihood of failure resulting in less mobility not more.

Odd thing was, I walked early... at 9 months, just even then I was taken to the Doctor because I was having pain and problems, and that continued for many years yet they still missed it totally!

The years on NSAIDs (since 21) and Opiates (since I was 34) hasn't exactly done me the world of good either!

I am worrying recently that I am getting some problems with the GOOD side too now! (I already have other pain, but I kind of depend on the one reasonably stable hip a LOT!)

I spoke to MANY people years back on the Internet before I retired, many of them in the USA, and it put me right off hip replacement due to my circumstances, one in particular ended up wheelchair bound much younger than me, as he had significant problems with repeated failures of joints, and it was then when I realised how unreliable the damn things are, when used in younger active people, and particularly *large* males! I suspected the could be a problems if the leg length issue was over-corrected, but until you, I hadn't heard of such a specific serious example