THR Anniepops THR Recovery

[Vida]

Audball Well, if you can't laugh at all this stuff, you'd cry. Right? After all we've been through, we CDHers are generally good for a giggle. Glad we got you going. That Anniepops is a proper rascal.

 

[alexthecat]

I wonder if Ann guessed, when she joined Bonesmart a year ago, that her thread would become the ultimate hangout for CDH folks. Audball and Vida, have you read the whole thing?

 

[Audball]

Vida my avatar is me at 18mnths.... although I look like a wee boy. Pmsl.
Aud

 

[Audball]

Alex I keep browsing through it all, trying not to miss anything. Just so much here, it's great for chd and replacement info. X

 

[Vida]

alexthecat Yes, this is an inspirational thread that every CDH/THR recipient should read. Ann got/continues to get great advice from you guys. Seems to me you have your work cut out for you because the CDH gang have been dealing with rubbish musculature etc. for in my case, six decades.

I wish CDH really did stand for Campbell's Dwarf Hamster charlie cyborg. Growing up I would have felt so special. When people stared at my scars at the beach I would have loved telling them about my "condition."

Audball Weren't you a sweetiepie? It quite took me back to childhood. When my CDH was discovered a doctor uncle told my parents about an experimental new procedure being done at Nuffield in Oxford involving two bits of surgery followed by six months in plaster. I was sent away for about 8 months. It must have been very hard on my parents as they were quite poor and couldn't visit. After that I was part of a large group of CDHers followed annually through x-rays and exams until I eventually emigrated to Canada. I have had problems on and off over the years and other surgeries but hope this is the end of it. I still have a plate and screws in my femur from the first op because they were unable to remove it as planned during my THR. I am lucky they were able to bang a decent prosthesis down in behind it and I love my new hip. I was told years ago I would not be a candidate but that was then. I wish I had got this new hardware 20 years ago.

 

[Anniepops]

Aww shucks you gals, I need to start bringing along cocktails and canapes when I come on, gotta have a little decadence whilst having our lovely little chats

For me, pre op I had arthroscopy and then bouts of PT and hydrotherapy but those made no difference and I didn't really give it my best shot as I knew nothing was improving..the inevitable was acoming, THR so I just waited until I could wait no more.

Post THR I had my gorgeous hippie guides C Mac and alexthecat who have been my constant and other lovely members popping in helping me along the way. They spurned me on and I found the determined spirit in me, wanting to make the best of this new hardware of mine and I am doing so, slowly but surely. You're spot on Vicki, I have had THE best advice, it's priceless.

Yes Vida you have to have a bit of a laugh...laughter makes the world go round as they say. I think we all know who the little rascal is on here though missy and it aint me.lol....keep it up Vicki, I have had so many laughs on BS, it's fab to have a bit of or a lot of a giggle.

Aud Audball, aww cute pic, I guessed it was you as a child, do you feel a bit sad when you see pics of you like that, I do. It tugs at the heartstrings. I have a couple too of me about five with my froggie plaster on. Fancy your Mam still having those rings, that's great that she kept them...don't think mine kept my plaster.lol. Wouldn't have been able to fit it through the loft hatch anyway.haha. You do look like a wee boy but I think lots us little girls did at that age, I know I did anyway. My Dad used to cut my hair to save money, you can tell he did too, it was terrible, I'm sure he actually used a basin as a guide.haha

Vicki, I wish I had had the surgery many years ago too, wouldn't even have minded having to have it done again in time,knowing what a huge difference it makes to our lives. Least we got there in the end eh

Just realised the new tagging thingy. When you start to do the tagging business a choice of members names pops up so you don't have to type it all in just click on the appropriate name...very high tech I'm sure....I likes it I do

 

[Audball]

Annie I had a frog plaster too, my mum said it was stinking when they changed the plaster cause it just had a hole to do the toilet through. Can't imagine what my mum and dad went through carrying me about and also had little money to visit me in hospital. But I feel luckier than some who had the same thing, but went to a different os. One girl I know limps a lot worse than me. And I had 5 healthy kids with no problems. I'm lucky. X
Aud

 

[alexthecat]

Seems to me you have your work cut out for you because the CDH gang have been dealing with rubbish musculature etc. for in my case, six decades.

The challenge for me is that the CDH people are all so different. What works for one person may not work for another. Also, there are things that I can suggest to Ann, at a year post-op, that I wouldn't suggest to someone who is still in the early weeks or months of recovery. With more recent THRs, the goal is to keep you from doing things that you aren't ready for. With those who are a little further along, it's more about giving them ideas to stay motivated and engaged. Ann seems to have a knack for keeping herself entertained. That is a useful skill.

I was told years ago I would not be a candidate but that was then. I wish I had got this new hardware 20 years ago.

In real life, I have two CDH friends. One is around 55 years old, I think. She had THR about 8 years ago and is doing great. She has some limitations, but they aren't anything that affect her day-to-day life. I notice a very slight Trendelenburg gait, but I doubt that anyone else would.

My other friend is 29 years old and is quite debilitated. She doesn't feel emotionally ready for THR, so I don't push that with her. Like you, she had previous surgeries that were very difficult and she is not optimistic about THR. I met her shortly after my own THR and she has deteriorated a lot in that time. I guess she'll have the surgery when she is ready. I tried to get her to read the forum here but she said that we're all "depressing, old people." Maybe I should tell her about Pocket Frogs.

 

[Vida]

alexthecat I just wrote something on another thread about why I really think we put off having a THR.

https://bonesmart.org/forum/threads/reticent-and-thankful-lthr-3-18-13.18594/#post-428179

Maybe you should show it to your friend. And tell her that we aren't old, just the voice of experience. She should be having the best time of her life at her age, not coping with chronic pain that could be alleviated. If I could have done this in my 20s, I would have jumped at it because it only gets worse with age as your hip and everything else declines and depression really sets in. You sort of live a double life...one you show your family and one for your darker alone moments. If I were her, I would take a risk on surgery while I was still young and healthy.

 

[alexthecat]

That's interesting, Vicki. My experience was different because I had a THR as a result of hip fracture. When you have an injury like that there isn't an option not to fix it. My THR happened as quickly as my surgeon could get it done. There wasn't any question of when or whether to do it. That's why I don't get involved with discussions, here or offline, about whether someone is ready for surgery. I just don't have experience with that.

 

[Vida]

alexthecat You're right, there is a big difference. Break something, you fix it. No questions. You're motivated. If its chronic and a matter of 'if and when,' the natural tendency is to leave it until the last minute. And the system encourages that. In years past, when prostheses didn't last so long, I guess there was reason for that approach. But by the time many of us more complex folk get here, a lot of things that are important for recovery might be well, unrecoverable. Plus, there are all those lost years. And that's why I would recommend that your young friend go for it. I would be happy to chat to her through email, if you think she would be open to it. I think young people assume that all the THRs are oldies with straight arthritis but there are also people like me who have been exactly where she is now and can completely identify.

 

[Anniepops]

It's great that your older friend is doing so well Alex( how lucky is she to have you in person to advise ) but it's such a shame about the younger one. I can see where she is coming from about joining in on here. I suppose to a 29 year old people over forty are right fuddy duddys who just like to sit all day wearing their rollers and knitting.haha. Having had previous difficult surgeries I can understand her trepidation about THR, I was worried about things going wrong and I haven't had any major major surgery like some of our CDH gang. Poor lass, I hope she can come to the decision sooner rather than later as her quality of life must be so poor right now. You are a good friend to support her through this Alex.

Vicki, great post on the other thread, very insightful. It is so different for us who have lived with our kookie hips all our lives. I know there are much worse things that we can have wrong with us but it's the childhood days which are very hard to get though when you have physical problems.

Aud, yes you are lucky as are we all who have had succesful surgery and the chance to live our lives. It's awful that sometimes it's the luck of the draw as to how well your surgeries go. A girl at my PT who is a bit younger than me has had a terrible time of it with her CDH surgeries, really awful and she is having a struggle to get better. She was the first other person I had met with CDH. Were the doctors extra thorough when checking your kids' hips when they were born, mine were and thankfully they were all okay.

I know what you mean about the frog p,aster and the toileting gap. My poor parents, gawd know what it must have been like for them having to deal with that. Lucklily I was too young to even care about those things. Imagine having it now, how embarrasing would that be.lol.

 

[Audball]

Ha ha ha can't even imagine getting cleaned up or carried in a frog plaster now. All of my kids had their hips checked and scanned as newborn, my niece was the only one with a dislocation, few operations but at 15 she seems to be doing ok.

 

[Josephine]

I remember all the 4-5 year olds we had in the days before the Ortolani test. It was pitiful. I also remember when it was brought in and the first stage of dislocation and treatment could be something as simple as double terry nappies! Gosh what a revelation!

Here's the kind of thing we used to do to the poor little mites

 

[C Mac]

My other friend is 29 years old and is quite debilitated. She doesn't feel emotionally ready for THR, so I don't push that with her. Like you, she had previous surgeries that were very difficult and she is not optimistic about THR. I met her shortly after my own THR and she has deteriorated a lot in that time. I guess she'll have the surgery when she is ready.
I tried to get her to read the forum here but she said that we're all "depressing, old people." Maybe I should tell her about Pocket Frogs.

I can relate to your friend's not being emotionally ready for THR alexthecat. For me much of that involved not feeling confident in the surgeon options that I'd been presented with. It's different when you have abnormal anatomy and you want to find someone that has experience with that condition and can plan for how to handle piecing you back together in a fashion that is functional and does not create additional issues elsewhere in the body's system that will be equal to or worse than what you've already got with the funky hip.

I stumbled into the forum before my surgery when I'd googled about the wedge shaped pillow some used to get after surgery. I was not at all interested in joining after reading a few threads that made me feel more anxious and talked about problems... I joined about 3 months after my surgery when it became clear that I was not on the right track and no one IRL could help me. I operated best in denial mode prior to my surgery, sometimes fear does that to a person.

Anniepops and Audball all my childrens' hips were checked as newborns as well. I'm always amazed at the number of people here in the forum that have dysplasia diagnosed in adulthood, so now don't know how confident I feel that my kids are truly in the clear!! They certainly didn't have to be casted like the wee person pictured above (or me and you gals)!!

My friend's daughter got the double diaper treatment and she's supposedly fine, now 20 years old. So, does CDH happen less frequently nowadays???

Thanks for letting us congregate here Ann
Take care,
Cardie

 

[alexthecat]

You're right, there is a big difference. Break something, you fix it. No questions. You're motivated.

I wouldn’t say “motivated” necessarily. More like resigned. In the months following my hip fracture, I had a surgery and then a revision that were much more debilitating and painful than THR. By the time it became apparent that THR was the next step, I had been unable to walk for nine months. My personal and professional life was in shambles. My attitude was more “here we go again” and a despair that I would ever have anything remotely resembling a normal life. I had a lot of fear, based on my previous surgeries, and no real expectation of a positive outcome. Even after successful THR, it took a lot to get my life back on track. I'm not talking only about my hip here.

It's great that your older friend is doing so well Alex( how lucky is she to have you in person to advise )

We actually don't talk about THR and I've never advised her on anything. We were both fully recovered and living our lives when we met. When I’m not here, I don’t talk about my hip. Most of the time, I just forget about it, to be honest. She is years ahead of me, so I assume she does as well.

I can relate to your friend's not being emotionally ready for THR alexthecat. For me much of that involved not feeling confident in the surgeon options that I'd been presented with.

She has read your thread and is quite aware that things don’t always go as planned. I know she will make the right decision for herself when the time comes. Right now, she is finishing up a PhD in engineering this spring and planning her wedding this summer. I can’t encourage her to go through with major elective surgery now, when she doesn't feel that she is in a good place in her life to do that. I had to make a lot of sacrifices because of my hip. I didn’t have a choice about that but she does.

 

[Vida]

How different we all are and how convoluted are the roads that brought us together. How ever we got here, I'm glad we did.

 

[Anniepops]

Hear hear Vicki

It is brilliant that the double terry nappy often works to correct the dysplasia. It's funny how a lot of us CDHers were diagnosed at around the 18 month mark. I suppose at first our parents might have though we just had the funny little baby weeble walk going on so they didn't give it much thought initially. Least the Doctors got there in the end and made it practise to check all babies hips. So I don't think it happens less frequently Cardie just that all babies should be checked soon after birth. Good about your friends daughter, we were just born a few decades too late I guess I wouldn't worry about your kids having the same problem, the peeps diagnosed much later in life are either around our age or perhaps if younger just slipped through the net. I feel confident that my kids are all okay although they didn't have a scan like Auds kids, how thorough is that eh!

When I think of all we have gone through just for the sake of a simple test the mind boggles. The frog plaster was bad enough but I also had the traction with the bloomin big bolt through my shin leaving nothing but a huge bullet hole like dint in my shin....heaven knows what that was supposed to achieve but it didn't work.

I'm sad to hear you went through so much after your fracture Alex, emotionally as well as physically. Were you into exercise and fitness before your fracture or did it come about afterwards? It's awful that one incident can totally change our lives. I am pleased you have got your life back on track and do the things you love to do

Because you and your older friend have been through THR I wrongly presumed you would discuss it, probably because here I am/ have been bombarding you with questions about exercises so I think everyone is like me sometimes but I suppose if she has had a full recovery and is happy with the result then there would be no reason to talk about it to anyone.

You know what I have been thinking....why arn't there any female OS'. For the whole year that I have been on the forum I have not once seen anyone refer to their OS as 'she'....what's that all about then? I wonder why it is not something women want to go in to. Just a thought for today.lol.

Take care girlies

Xxx

 

[bottomshollow]

According to Josephine, it's the nature of the surgery---requires a certain amount of physical strength on the part of the surgeon that many women do not have.

 

[Vida]

Hey Ann, it's interesting about the different 'types' of physicians. I used to to write a magazine for a large teaching hospital. Every month, I would write about one bit of the body..what went wrong, how problems were managed, doctor profiles and patient stories. There was such a difference between the specialities.....brain guys were definitely cerebral types, blood people very warm because of so much long term people contact, ortho guys more action-oriented, macho even etc. I know there are more women doing bone work today and the stereotypes are changing but it is tough physically. Back then there was a lot of mystique around medicine and docs liked to keep it that way, many of them fought back against efforts to describe their work and our bodies in lay terms. Now we have TV shows that take us into the OR, although they do pretty it up. One of my last jobs before the hip stopped play was to write about a new type of heart surgery. It was amazing to see how many people were in the OR for a bypass..at least 10. I was allowed to stand at the patient's' head and watch...very exciting. Having said that, I don't like watching ortho procedures for obvious reasons. Too close to home! Don't know how Josephine does it after being so involved for so long and seeing what she's seen!