22 years waiting... Now what?

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gavin

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Hi All
My problem is a bit long in the tooth: I had a traffic accident when I was 17 (I'm 39 now) which took a slice off the top of my femur, in brief.

I was always told 'hold on for as long as you can for a new hip...' So I did for 22 years. Having had the op Dec 18 last, I am already reaping the benefits.

That being said, after 22 years of varying degrees of pain, and a more complicated procedure than most (it appears) due to the time, extra bone growth, muscle wastage, advanced arthritis etc. etc, I don't know how well I'm recovering. Not many people my age are having this op. Probably against my physio's advice I'm back cycling gently and I'm pushing myself with the exercises I am given to the degree that I'm constantly being told to slow down - In my book, a good thing. I have a goal to take part in an ocean race in August, so I need to get fit quickly.

My question is simple: Are there any members of this forum of my age, or any age for that matter, with a similar history, that can share their own experiences of this recovery thing...!
 
Hi Gavin,
My case is much different than yours so I am not sure if it helps, and I am not sure what experiences on recovery you are looking for, but it sounds like you want to know about the possiblity of an active life post THR. If that is so, there are several of us here that have returned to athletics following our THR. There use to be another board with lots of hippie athletes but it was shut down when inundated with spam and is not yet up again. So let me know if you would like to hear of other experiences of recovery on the road back to being athletic. The good news is that it can be done!! :)

Andrea
 
Hi Andrea, thanks for your reply

That's really encouraging!
My hip appears to get better daily now; probably a lot of mental attitude involved as well as working the muscles but it appears to be moving on quickly.

Yacht racing is alleged to be the most technically, mentally and physically challenging sport there is, so I'm not laying back thinking that it will be easy to get back on a boat. Especially as my carpenter/consultant says there is a greater risk in the first 3 months of dislocation. After that point, it should be plain sailing (pun intended)

How long did it take you to get fit? How long did you allow to ensure you were fully healed? I tend to listen to what my body wants to do. If I didn't, I don't think I would have been back on the bike if I'd left it to the Physio to make the decisions. A lot of people keep telling me that I'm over doing it and I should slow down. But then time waits for no-one, so I try and compromise. so far, I've not daaged any muscles or felt any great pain, so I guess it's working.

Any thoughts, ideas or training/exercise suggestions would be most welcome

Regards

GAV
 
Hi Gavin,

Well, I sure don't race yachts so can't give you any insight there!!! :) However, I do downhill & x/c ski, mnt bike, rollerblade, hike, yoga, horseback ride, kayak, lift weights, a little running, pretty much what I want and some of it competetivly (masters).

Now, I went into my surgery extemely fit. I had to give up running for nearly a year before, but was still able to do at least some of my other activites enough to stay lean and strong and when I found out I needed 2 new hips asap, I cut back my cardio and concentrated on strenght training so I was wicked strong going into surgery. As it was, I broke the hospital record for early release following simultaneous bilateral THR, and was home in 2 days. Within 4 days I was forgetting to use my crutches (never used a walker) and making the home health PT they sent to me, crazy. But, I had an outstanding surgeon who did posterior MIS, so no muscles cut. My surgeon recognized I was not your average patient so he was wonderful about letting me find my own level of recovery. Like you, I am very intune with my body and listen to it. I am also willing to work hard. I only used the home health PT 3x then went back to the PTs I had been using pre surgery, the ones that are geared to athletes. In fact, one, that used a rather new, gait analysis technique, was the best thing for me. I had develop a really bad gait to compensate for pain, he fixed me! I always had someone telling me I was going too fast, so I chose to listen to my OS and my body. That seemed to work fine.

My early recovery work was in a warm pool where I did my leg exercises and also pool ran. Water is wonderful on the body. I then did things as they felt ok, always slowly at first, then testing the limits. You will also continue to heal for up to a year and continue to improve, if you work at it. Your mental attitude is extemely important. You will have some plateaus, then you will make leaps. I was pretty much back to most my athletic, work, life in general within a few months, but I did get better as the year went by. At my 1 yr checkup, my OS was extremely please, lifted ALL restrictions and told me "Go for it!" He said the prothesis look so good and I am so strong they should last me a good 20 yrs. WHOO HOO.

So stay postitive, find a good PT that understands and athlete and keep working at it.

andrea
 
Wow Gavin and Andrea!

Sounds like you both are doing well! I'm 44..but have had pain and mobility issues since 1997 and had been an athlete up until then. So it's been quite some time since I considered myself to be an athlete.

Prior to THR this past November, I attempted moderate workouts but no sports. Walked and hiked as much as I could and increased my activity prior to the THR. I did try playing tennis, but was limited (mobility and pain). I had also decided on PT before the surgery...and believe this had benefitted me greatly.

My surgeon has forbade me from taking up running again (or tennis or basketball..anything high impact and especially tennis, because of the movement) because this will cause wear to the joint. With care, this hip is expected to hold up for 30 years, max.

I feel as though, when I'm further along in recovery (I'm at a little more than 3 months now) if I feel good enough to do some of these activites, I probably will! I still need to eventually have THR for my right hip (too bad off for Birmingham resurfacing). Although the left hip has bothered me for a longer period of time (and my surgeon told me that I had no cartilage in the left), the right hip started bothering me last year, and much worse than the left. I had been given a choice of which hip to have replaced first and decided on the left only because it's bothered me for a lot longer. I wish I could have had bilateral THR!

Good luck to all of you and hope all is well!

Pam
 
Hi Pam,

I would go for the second hip as soon as possible. It is not going to get better and is only going to limit your return to an active life. I am so glad I was able to get both mine done at once! Mine were both to far gone for resurfacing too. But with 2 new and wonderful hips, I truly can do just about anything I want now. And I did continue to get better for more than a year. So you have a lot to look forward to. Good luck with your recovery!!

Andrea
 
My story is very similar. I was born with hip dysplasia but it was not detected. At 19 I started complaining about pain. I saw a doctor who told me (and my parents) that it was all psychosomatic. So, believe it or not, my mother began calling me 'lazy ***' when I couldn't get up from the couch quick enough.

I saw doctors for the next 16 years begging for some relief. I was delivering packages for FedEx when my last stop happened at an OS office (well, they say there are no coincidences!). I was crying and hysterical from the pain. Right then and there he gave me pain meds and a note to stay home from work.

He wasn't sure about what to do either because apparently nothing typical was showing up on the x-rays. He consulted with other doctors and reluctantly planned for a THR several months later.

As soon as I came to after surgery, my first question was, "How did it look?". He said it was so disintegrated that he didn't know how I was walking! No surprise to me! They had to construct a makeshift socket out of the bone remnants and 2 large screws holding it all together. One of the screws has now broken off and is floating around.

Like you said, they waited too long and I had absolutely no muscle tone at all. The hip dislocated in the hospital twice. The second time the OS tried to put it in place without putting me under first because there were no surgery rooms available. I screamed and cursed while he pulled and then twisted my leg. It was a horror.

I had to exercise in bed before they would do anything further. They ordered a new prosthesis with a larger ball and lip around the inner lining. I was in the hospital for 31 days and wound up depressed and crying every day.

I hate them all for making me wait so long. And now the same thing has happened again. I've been seeing doctors since 1995 complaining of left hip pain. Deja vu all over again!

The pain became unbearable and I had to go on SSDI 2 years ago. I found a doctor who will replace it, but now I also need the lining replaced in the right prosthesis. It's slipping and I can hardly walk.

I'm 55 now and live alone with no one to help me at home, except for some friends who will stop by. I also only have Medicare and who knows how little they will pay. If I sound disgusted it's because I am. The left hip should have been taken care of 10 years ago when I had insurance and better muscle tone. I suffered for these 10 years all for nothing. That makes 26 years of my life in serious pain. And I'm afraid that the same scenario will happen this time around.

I am doing some hip and thigh exercises, but I'm in such pain I can't do any more than that. Surgery is scheduled for April 16 but for one hip only. I'm trying to convince the OS to do both. With one hip slipping and the other too painful to stand on, I don't know how I could lean on either one for support.

Anyway, I'm bitter, stressed and confused about how to handle everything. I have 3 dogs and 4 cats to take care of with only a disability check to get by on. The only light at the end of the tunnel is pain free living within the year.

After my first surgery healed, I was so elated and had so much energy that I opened up a women's consignment clothing shop, got a part-time job as a letter carrier for the post office, and sold my fine art photography and posters all at the same time! I'm trying hard to remember those 7 years of pain free living before the left hip started hurting.

Any words of encouragement would sure be helpful.
 
Hi All
My problem is a bit long in the tooth: I had a traffic accident when I was 17 (I'm 39 now) which took a slice off the top of my femur, in brief.

I..!

Hi Gavin, I am not your age but I too had a nasty traffic accident at 17 and had a slightly deformed leg as a result. The top of the femur was worn flat on one side after 34 years, when I had my hip surgery last week. Just reading that your recovery was impacted by the muscle wasting, and that you are now on a BIKE was very encouraging to me. I am 52 years old. The amount of pain I am experiencing is a bit extreme, my toes now point in a differnt direction, about 20 degrees off where they were before and my leg muscles are screaming. Also the inside of the hip seems painful which I am told is not normal. Do you remember if in the first week of your recovery really struggling with pain?

I am a biologist and have always been reasonably fit, but I really want to be out there in the woods again soon.

Any help you can provide would be greatly appreciated.

Kat
 
My story is very similar. I was born with hip dysplasia but it was not detected. At 19 I started complaining about pain. I saw a doctor who told me (and my parents) that it was all psychosomatic. So, believe it or not, my mother began calling me 'lazy ***' when I couldn't get up from the couch quick enough. .

Dixie, what a horrifying experience, me heart goes out to you. You make my little problems seem very small. I cant believe your own mother would be so stupid. Sorry, I just have to say that.

I think with the muscle wasting and all of your problems, living alone and pets, etc you have a very hard road ahead of you. One hip at a time I think, for you. Can you convince a friend to come and stay with you for the first couple of weeks? Is there a social safety net for you in your community? You HAVE to try to think positively, after your surgery, its not going to be easy but things should improve for you. You MUST think seriously about getting some help though.

Kat
 
Hi, Katherine,

Thanks for your understanding. My parents are still treating me like nothing is wrong. Just a few weeks ago my mother was harping on me about how much better off I'd be if I got on an exercise program. I'm 5'5" and 160- a little overweight but far from a blimp. No matter how much I tell her that I can hardly walk and can't think about exercising right now, she still harps on it. Can't believe I'm still dealing with them at 55! I can only keep contact at a minimum.

So far I've been able to line up getting one hot meal a day from Kitchen Angels. Most local friends have jobs or are somewhat disabled themselves. One friend may be able to fly in from Cape Cod for a week. The only problem is figuring out what days she should make the flight. I'm supposed to be out of the hospital in 3 days but what if there are complications like the last time. Or what if they do both hips and it's a slightly longer stay.

I'm still trying to line up some help but there doesn't seem to be much. I will kennel the dogs and a neighbor will care for the cats. JoAnn lives just a few houses away but she's 82! I hate to dump on her. Just a few days ago she was outside my home cleaning up the trash and overgrown weeds. I had no idea she was there because I don't have windows on that side. I was so happy because it looked awful (the prevailing wind blows my way and the apartment buildings across the street generate a huge amount of trash). But I don't want her to overdo it.

What ever happened to the Boy Scouts, for instance, helping the needy? Seems like kids today just want a handout. My estranged sister's kids are just as bad. My nephew is 22 and hasn't had a job in years. He never offered to come and help me with anything. It's pitiful.

I'm still trying to locate help. What I need most is someone to clean the floors. They get disgusting after just one day with all the animals. And one cat I adopted last year won't consistantly use the litter box. If she poops on the floor the dogs eat it, then get sick. She came from a home that was a dump and did her business anywhere she felt like. It was so bad that I called Social Services to help the woman, but because of my own condition I couldn't do much beyond shopping to get her some decent clothing. When I'm healed I'll look into that situation again.

Regarding your inner thigh pain- I had that for quite a while after my first surgery. It was right at the crotch area and hurt for many months. I just read somewhere that it could be from the OS pulling and twisting the muscles during surgery. It makes sense to me.

Linda (mom to Dixieodoodles, my ShihTzu)
 
Hi Linda, well you are not in the best of situations. That is for sure. Is there an American Red Cross nearby? I dont know about volunteer organizations in your country, but in Canada there is a huge number of them, perhaps if you try the Red Cross they can provide you with community support services numbers you can call.

Also regarding your parents, they need to be educated. Can you briefly explain your situation to you Doctors secretary/nurse and ask her to have the Doc make a call to them? You are going to need help, and they are the obvious providers. The fact that your mother still doesnt get it that you have a bone disease is really sad, but its also just plain ignorant. Perhaps once she has it explained to her she will see the error of her ways and pitch in.

I found the same thing with my hip problem too. People would say that I just needed to get moving, or have message or something. They are simply unaware of the facts. If you cant get your docs office or your doc to help you do you have public health nurses? If you can arrange for help from them, they may arrange a meeting or call to your parents.

As you know when you get out of hip surgery you really cant get through the first week without help. So you need to either convince your mother to help you following the surgery, or use one of the social services, or church organizations in your town to help you out.

I am now coping a lot better on day 9, but I was helpless from day 1 - 7 also anemic. I suspect that you have not plumbed the well of volunteer community services, either from Churches or public/private organizations. Your problem is truly compelling and I am sure some good people will help you.

Take care and let me know how you are doing.

Kat
 
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