How long to wait?

[JaneyGS]

Hello,

I'm a newbie here! I have a problem with my left hip (dysplasia) and I've known since I was 18 (now almost 40) that I will need a hip replacement. I've been reading the old posts and it seems the general opinion is to go for it as it is better to live without the pain.

I'm not sure if the pain I have is bad enough to have the op or if I should wait. I have pain pretty much all the time but I am used to it now so it doesn't bother me that much. I only take pain killers if I know that I will be going for a long walk or having to stand around for a long time. I can go to the gym and do classes but only the toning ones with no impact and I can swim and cycle. Dancing is OK with some pain killers and the other well know anaesthetic - wine! It only occasionally wakes me up in the night. Also, it's hard to know if it is getting worse or not as it's been there for so long.

Did you all have much worse pain before you had your operation? Should I wait until I can't put my socks on before I go for it? Also, how much flexibility do you get back after the operation? I do yoga and pilates and I'm quite flexible now and I'm not sure if I want to lose the ability to touch my toes ever again!

Thanks for sharing your experience!

Jane

 

[haldox]

Welcome Jane!!!Glad you found BoneSmart, its a wonderful place!

A lot of people have the same concern about waiting until its really bad or go for it now. My vote is to do it ASAP!!!

My first THR I was having pain for a long time and was very crippled, walked with crutches, very bad limp, back pain, referred knee pain,etc. As soon as I woke post op the pain was gone!It was amazing. Of course it is MAJOR surgery and there is recovery but for me it was nothing like the awful pain pre op. But recovering for me, letting the hip go for so long, involved also getting back,knee and limp worked out.

It will be 1 month this Friday for my 2nd THR and this time I didnt wait so long and recovery has been a lot easier!!!I think the hardest thing to fix with the first one was getting rid of the limp, I had to use a walking aide much longer, to help retrain my gait.

I had no problem getting flexibility back post op with my 1st THR(actually my flexibiliy pre op was way worse because of bone spurs)I also did yoga and my OS told me I could go back to it post op and I did with no problems!

THR is supposed to give you your life back (pain free too),for me it was a blessing and I do not regret it for one second!!!

 

[Josephine]

Well, I'm kind of on the fence. You seem pretty active with minimal discomfort so I'd caution rushing in too quickly. You could always do the Harris Hip Score to see what you rate. Don't worry about section 2 - that's for doctors. But maybe add about 4 to the score to get it to even out. The key is at the bottom where the score shows.

Let us know what your score is!

 

[thegiftlady]

Hi JaneyGS,
I hear your pain. I started feeling real pain about 4 years ago. Mine was to the point where I had a hard time bending down to pick up after my dog and my favorite things like gardening and entertaining became a HUGE struggle [not able to stand at the counter for more than 20 minutes without sitting for a few].

You know you need a new hip, so that's a given. Deciding WHEN to do it is the only question, so here is my experience.

I too am extremely flexible. My husband says I am like a Gumby doll. But, I was to the point where I could not give myself pedicures anymore! All of my favorite things were effected - gardening, walking my dog, making dinner, entertaining - all hurt. And having sex? OMG, the groin pain was beyond. My poor husband was afraid to touch me.

I too took pain killers, at first almost every day, then every day, and then day and night. I bounced between ibu's and Tylenol Arth, Bufferin, aspirin, all to no avail as all any of them did was bring the pain level down a bit - the pain, it never really went away. And my life? Rather than being fun and spontaneous, became cautious and required thinking ahead before I did anything ... I would look ahead from the car at the entrance of the restaurant to see if I could make it without too much pain.

I had my THR October 27, 2011. The pain was gone immediately. I started doing my exercises in post op. I was released to home care in 3 days. I had home PT and did exactly what they told me to do. Within the week I was walking outside with a walker, shortly thereafter with a cane. With no cane? Hmm, guess that was maybe 3-4 weeks or so. I was doing laundry week 2! And I might add this was PAIN FREE! Yes, there is a little post-op pain, but it's surgical pain which feels completely different and is very manageable with meds.

I am 61, almost 15 weeks post-op and doing just about everything I did before THE PAIN. My flexibility is totally back; my strengthening still needs work. I am again very active and feel like I did before the pain, at least 20 years younger. I did have a little setback when I did too much at PT, but that will pass.

So, "WHEN", you asked. I'll tell you what my surgeon told me when I asked him. His answer was,

"The apparatus we have available to us now is outstanding, and I do about 500 hips and knees a year with a very low potential for complications. I am confident saying your new hip will last 25-30 years or so, give or take. Your hip will not get better. It will degrade further as time goes by. You are an excellent candidate - you are not overweight and you are very flexible so recovery should go very smoothly. You are now losing the best years of your life to pain that you really don't have to have, so I ask you, do you want your feeling good years now, or when you are 90? It's really up to you."

I booked my surgery after that visit. .

Re-read what you said,
" I have pain pretty much all the time",
"Dancing is OK with some pain killers",
"It only occasionally wakes me up in the night."

Is your hip interfering with your favorite things to do? Do you look on hesitantly when you have to get from point A to point B? Do you feel like you are losing your best years? Only you can answer this one.

The most difficult thing ahead of you is finding a good surgeon as the operation is a piece of cake. Look for one that has hundreds of them under his belt and is affiliated with a hospital that is or has a department dedicated to ortho surgery. If you say GO, follow your precautions, do your exercises, and WALK, WALK, WALK!
Good luck, and stay in touch,
Gifty

 

[PolarIce]

Some great responses. What needed to be said is already posted I think. I think what you need to decide is how interfering are the symptoms you have to daily living? how bothered are you by either pain or the inability to do anything at all, are you by the symptoms you're describing?

THR last for so much time, and as amazing as they are, I would also recommend waiting as long as possible before going to them as a final answer. Having said that, life is also to short to live in pain, because you want to prolong the life of a new hip. You have to decide for yourself where the balance is, and when it's time for you to say "now is the time".

 

[NH_Lou]

Hi Janey. Aside from the hip dysplasia, I felt like I was reading my own story. Your decision to move forward with the surgery is a very personal one. Speaking from my personal experience, I feel it is safe to say, I was physically more in need of the surgery than I was mentally ready to go through with it.

However, I can also say that I too had chronic pain (at different levels thoughout the day), took naproxen (I had it with me at all times), was able to exercise as long as it was no impact, benefited from stretching and yoga.

I will admit that the last five years I did struggle with something as simple as putting on my sock and clipping my toenails.

As for flexibility, there is no comparison between pre- and post-surgery. My range of motion is my left leg is sooo much better than before the surgery.

Most importantly, the chronic pain is gone. Your comment about being in pain all the time is something you should really consider. My experience with chronic pain is it will only get worse and because it is gradual, you are still able to cope with it. However, it will slowly seep into every aspect of your life and your ability to do simple tasks will be greatly compromised. It is already interrupting your sleep, so you may be further along than you think.

Again, my personal experience; now that the pain/arthritis is gone, I am astonished how much pain I was in.

I wish you well on your journey and completely understand your concerns. You are doing the right thing by coming here and looking over the amazing information and personal stories of others. In the end, you will know when you are ready to do this.

 

[C Mac]

Hi Jane,

Making the decison to got forward with THR is so personal when it comes to pain levels -- we are all so different in how we experience and tolerate our aches and pains. I found it came down to quality of life issues and wanting to be able to do more things now with my kids before they wandered off into adulthood.

I don't know if you have made a decision on which surgeon you would use for your surgery. That was a gigantic issue for me and it took me years and many visits to get that detail into place in a fashion that would allow me to then evaluate the pain & quality of life issues as my primary issues moving towards surgery. I saw my OS two years prior to moving ahead on the surgery.

I will suggest that when you make your OS choices that you ask specific questions about the numbers of patients that have been treated with your specific dysplasia issues and how their results have been. I'd even go so far as to ask whether there are one or two patients that are a year or two out from surgery that you might be connected with for support and encouragement about the procedure prior to your surgery.

Congenital issues sometimes lend themselves to a different type of recovery as there are various things that your body has done to compensate for 30 some odd years and suddenly everything is different internally and a period of RE-adjustment is needed. Find out how your OS supports a patient if their recovery is more protracted than the "8 weeks recovery and you are back to your normal activity level" that is sometimes promised in the literature...

I hope all goes well for you and I would encourage you to take your time in making the decision to move forward as once you have the surgery there is no going back to the old way.

Take care,
Cardie

 

[Mad Rocker]

Hello JaneyGS

I will put in my 2 cents for all that it is worth.

In my own opinion pain is the “tell” (the baseline for your measurement.) As a woman I believe that we set our pain acceptance to a different level (my apologies to our male readers.) Is it because we are the caregivers and we put our pain in a little box to handle later so that we can care for those around us, I am not really sure but I can say one thing. I have been unable to do the things that I love for 4 years, the gardening, walking for more than 100 meters (300 feet) normal, simple walking up the stairs to get what I want in a two story house, recreational activities, and just good old fashioned sex.

I do not believe that there is a man in the world who would tolerate not having sex or only having sex in a very limited way and in agonizing pain...they would say ENOUGH!! As a woman we are the martyrs…the heroes who will tolerate much and keeping saying I can handle this. Its OK. Well its not OK!!!!

Sorry I am ranting here.

My life has been put into a stalled position because not because I did not want a new hip and most certainly not because my GP thought I did not need a hip, we both have been pushing for over 3 years.

Almost 3 years ago to the day My GP referred me for a OS. That took 6 months. Then the OS decided that my need was not high enough based on his protocol. (In Canada as there may be in other countries there is a protocol where they measure your need for a hip.)

We (myself and GP) waited and I was prescribed an increasing cocktail of drugs so that I could continue to suffer in trying to go through daily living. I did the PT and bought every witch doctor remedy I could find to #1 give me a night’s rest and I wasn’t even looking for a good night’s rest and #2 a chance of at least being able to work with only moderate pain.

We waited. One year passed and the only things that changed were my drug store shelf of pain drugs and worsening condition from bad to worse. Not only did I have trouble with my right hip but now (due to the increasing limp) I was having trouble with my left hip and right knee. (New x-rays indicated moderate OA in left knee and mild OA in right knee. OA was not indicated in previous x-rays.)

My GP refers for another OA consult. That only took 6 months. Again I was denied being put on the list for surgery. I am limping so badly I looked like the Hunchback of Notre Dame.

It was at this point that we, GP and myself) made the biggest error in my medical care. We did not pursue other avenues. Even today my own doctor told me that he should have sent me for a second opinion. But----

More drugs, no sleep and pain. This is your life. You base your day on a scale of 1-10 with childbirth being 10. You figure that 7 is a good day.

Six months later and we try again. This time the OS is being testy. How dare you disagree with my evaluation but I will look at the patient again but only if she gets a full X-ray series. X-Rays only show severe OA with moderate osteophytes (bone spurs). This is what my doctor tells me. Only difference is now he tells me to come see him in 6 months phone the office make an app’t. Do not use narcotic painkillers. What the heck are you not reading my file, I have been on percocet for months. And that is just so I can get 3 hours of broken sleep and not be bed ridden. That was December.

By Feb I want to commit suicide---I cannot see the end of this hell. Funny thing is when you get no sleep and are on the harder pain killers your thinking ability is all over the wall.

Bless my doctor he finally gets ornery and I see the OS in June with the proviso to phone from the OS’s office and to let my dr know if I have been put on the list. Low and behold I was, I could hear my doctor yell Yippee over the phone. That was 7th of June----3 years since I began the trial to be put on the list.

I get my surgery 20 Feb, 2012---8+ months.

This is my story please don’t let it be yours. As my OT told me (much too late for me)---Nice people do not get good health care.

This is your life. Keep on top of it. Ask for 2nd opinions. It may seem that its not too bad now but it could take you another 2+ years to get the hip once the OS decides. So get the care you need.

Keep a pain log so if nothing else you can gauge what activities give you grief---e.g. 15 minutes of fast walking yesterday gave me pain. Then you can change it to 10 minutes or 15 of slow walking. Find out what local agencies can support you. We have a gov’t supported Arthritis Society here in Canada that arthritis suffers can be referred for PT, OT, counselling and numerous other activities at no cost or minimal cost.) I found out only 7 months ago. They would have been the same lifesaver that this forum has been.

Be proactive. What would you tell your mother to do if she was in your place?

We are in this together---there is always someone to talk to. Good luck and take care.

 

[Jen]

I have pain pretty much all the time but I am used to it now so it doesn't bother me that much.

That was my situation for about a year until things really went bad in the fall of 2010. I was still able to work out, go about my daily business, and function well enough. There were times when I would come home with sore hips at the end of the day but I could manage it. Then my right hip decided it was done around November 2010. The left hip was only slightly better. Then my hips reminded me that they were really done in the summer of 2011. At that point getting dressed was difficult, stairclimbing became a chore, and much of my free time was spent lying in bed trying to get my hips to calm down. That's when I started my search for a surgeon. I finally had my surgery a couple of weeks ago and could not be happier.

With regard to flexibilty, even though I am only a couple of weeks post-surgery I am already more flexible than I was before. Hip flexion and rotation have improved so much and will only get better as time goes on. We had a member a while back who was a professional dancer and she managed to get back to splits and high kicks. You can see her pictures in the "Success Stories" forum. She is a best-case scenario, but it IS possible. It will just take some time and patience.

As for how long to wait, as others have said, consider how much your hip is affecting your life. If you are able to manage the pain and you can still do all the things that you want to do, then you might be able to wait a bit. I like Mad Rocker's idea of keeping a pain log, not only for seeing what aggravates your hip but also for tracking whether things are getting worse or remaining constant. That could aid you in making you decision.

 

[Jaycey]

Hi Jane, welcome to BoneSmart. I am sure you will fine a group of very caring people here anxious to help you with whatever decision you make. In the end the decision is all yours.

But as a hippie with dysplasia I can certainly relate! I waited far too long. I put up with the world getting narrower and narrower. Took the pain killers and thought I could put up with "minor" pain.

In December of 2009 the world turned upside down. I got up one morning and was literally crippled. Being the stubborn sole that I am I tried to "endure" for about a month. When the pain got totally unbearable I visited my GP. One hip x-ray and a few days later I was told THR was the only option.

A visit to my OS and he was amazed I was walking around with that hip. It had totally collapsed. Believe me, you do not want to go there!

Unfortuately your hip will never get better - only worse. And for those of us with dysplasia the change can happen very quickly.

As Haldox says - recovery is easier when you don't wait too long. My recovery took at least 12 months.

I have said many times here - THR is not a life sentence. It's the beginning of take back the things you love to do.

Please come back and let us know how you are getting on and ask any questions. We are here to help!

 

[JaneyGS]

Thank you all for taking the time to reply.

My Harris Hip score come out to be about 66 so not too bad I guess.

I am in the fortunate position to have BUPA cover with my employer and when I went to see the consultant two years ago I was told that whenever I decide to have it done I could be in there within about two weeks I think that that means that I can wait a until the very last minute before deciding to go for it.

I haven't done a lot of thinking about choosing the surgeon - I was referred to the consultant by my GP and I've seen the same guy twice in the last 10 years. He seems to be the main hip replacement surgeon for Chester but I haven't done much looking round. Is that something that people in the UK do? With BUPA I guess I could go anywhere?

Thanks again for your help

Jane

 

[Josephine]

Yes, it is 'too bad'! Anything under 70 is defined as 'poor'!