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Still in pain and can't work

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alice21

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Hello everyone,

I am new to the board and I am hoping that someone may be able to offer some advice or even some reassurance. I was born with congenital hip dysplasia and was not diagnosed until the age of two. I have had numerous surgeries on both legs the last one was a THR on the right hip. This was done at the age of 39 after being in pain for two years. Before my surgery I had no cartillage, no tissue and a loss of 30 percent of the hip socket.

I have been off work since Nov 16th 2008 and my surgery was Mar 2 2009. I am on a great deal of pain medication and I still wake up through the night from the pain. I had stopped using the cane for a while but the pain has increased so now I am relying on it again. I still limp and cannot stand for too long. I was always very active and very independant. I loved my job in sales despite having to stand all day. I am desperate to resume my life.

I sleep very little and of course have become depressed. I miss doing things with my husband and daughters. I used to take care of everyone and loved being the caretaker (even if I did grumble about it sometimes lol). I have to admit I am getting scared. The x-rays show that the fit is perfect and everything looks good. If everything looks good why am I waking up in tears some nights?

I have lost my income replacement because they (sunlife) say at 6 months post-op I should be better. I will be appealing as they did not confirm with my doctors. I just want to be done with this. I always recover quickly and can tolerate a high amount of pain but this one seems to be beating me so far.

Has anyone else been through anything similar and if so when did the pain stop and when were you able to work? Being in pain and now broke is no way to live.

Thanks and sorry if the post was a bit long :blush:

Alice
 
Hi Alice,

Welcome to the forum.

Sorry you're having such a bad time. I don't have any answers for you but hopefully someone else will. What is the pain like? Is it pain from the soft tissue? I had my left hip replaced back in April and my right hip replaced a couple of weeks ago due to congenital hip dysplasia . Due to a crack in my right femur I can't put any weight on that leg. Therefore the muscles in my left leg are really starting to hurt as that hip is still going through the healing process. This probably doesn't help you at all but I'm sure someone will be able to advise you.

Take care and try not to let it get you down - easier said than done I know.

Catwoman
 
Hey Alice im a knee but others will post soon with help hang in there...........) and Welcome............dont let it get ya down it will get better............)
 
Hi Alice
You need to wait for our wonderful nurse, Jo, to answer. I can only wonder if you have been checked for an infection. You should have been well on your way to healing by now.
What does your doc say?
Welcome, we are here for you
judy
 
Hi, Alice and welcome to BoneSmart! We're so glad you joined us.

I'm sorry to hear you are having so many problems. What does your surgeon say is the problem that is causing all the pain? Have you considered getting a second opinion from someone who is not connected with your current doctor's practice? Maybe a new set of eyes could pinpoint the problem. It does not seem to me like you should have this type of pain so far out from surgery.

Our forum nurse, Josephine, should check in soon and she may have some additional ideas for you.
 
Hi, Alice. You never said where the pain is or what kind of pain it is. Can you give me some more details? You seem to say you've had one hip done, so what's happening about the other one?
 
Hi Jo,

Thanks for your reply. I will attempt to describe the pain as best I can. The pain is in my groin and is a dull pain that becomes sharp and stabbing frequently but is always present. I also have lower back pain now which I never had prior to the THR despite limping for over a year prior to my THR. There is also a transient burning and pain in my buttocks on the right side.

The other hip has not presented any problems currently yet I get clicking in the joint at times. The left hip joint very seldom has pain. I am currently taking 40mg of Oxycontin twice daily and 2tabs 3xdaily of
Oxycodone Hcl/acetominaphin to attempt to manage the breakthrough pain. I only weigh 110 pnds at present although the pain has diminished my appetite so I have gone from 116 to 110 in the past few weeks and am concerned that it will decrease further. Despite not having a large body mass the pain medication does not manage the pain. As a matter of fact I believe that I must be coming tolerant as the pain is increasing. I have stopped sleeping through the night and wake up crying. The doctor seems to feel that this is normal and that it may take up to a year for recovery.

I have seen a PT who gave me a list of excersizes and instructions to return when I am able to complete them. This was back in early July and I have yet to complete them due to the pain.

I am truly scared that I will not get my life back. My expectation was not total recovery but I did expect to resume work and photography which is my passion I am not able to do either. I am missing out on those things which brought me joy and it is becoming harder to hang in there waiting for a change.

Sorry to be so long winded but I wanted to provide you with as much relevant information as I could.

Thank you so very much I am glad to have found you :)

Alice
 
Hi Sewell44 there is no fever so the doctor said that infection is not a possibility. (forgot to answer that question) Also thank you all sincerely for your words of encouragment and Catwoman I hope that you recover soon from the fracture and that your pain does not become worse. As far as all of your replies being helpful let me assure you that they are. Thanks to you I feel a little less alone:)

Alice
 
Hey Allice just checking in, hope you are doing better...............you're so never alone........you can pm or chat anytime..............)
 
That's okay, Alice, your post wasn't long by any means!

I am flabbergasted that your surgeon thinks this is normal because it isn't! Not no way! And any surgeon who suggests that recovery from something like this could take a year - well, I'm speechless! I suggest you give this fellow his ticket (i.e. get rid of him!) and quickly get a second opinion!

However, yet more questions: have you had this pain since the op? Or has it come on since? And does the sharpness and stabbing happen when you are walking or just 'happen'?

A few things come to mind that might be the cause of the groin pain though it's only a guess, so don't take it as gospel!

1. the cup and/or stem is loose or badly positioned
2. there are fragments of bone cement somewhere

As for the buttock pain, since it's in both sides, it rather sounds like a sciatic pain and would be an understandable consequence of the other pain and the limping. A good chiropractor should be able to help you there.

I hate to hear of cases like this where people have fallen victim to poor surgery. Therein lies the importance of choosing a really good, experienced hip surgeon. In this case, I suggest you seek a surgeon who makes a speciality out of revisions as he will be knowledgeable about all the possible problems that can arise.
 
Hi Guys,

Well the surgeon is considered to be by far the best in his field. I checked him out thouroughly prior to having the surgery. He has a fantastic rating from ratemds.com.

I guess it would help to let you guys know that I was a train wreck prior to the operation. My family doctor kept ignoring my concerns. He didnt believe me when I told him that my hip was dislocating. I would be walking and suddenly be falling over in a very bizzare manner and the pain was UNBELIEVEABLE but when I said no I dont scream from the pain he said it was nothing. He said that if it had truly dislocated that I would be screaming from the pain. I would hold my breath when it happened instead.

The surgeon was shocked at my x-rays. He was dismayed that my family doctor let me get as bad as I was. I couldnt have been more careful when selecting a surgeon as I have heard many things about him and they were all good. I have not heard one complaint from the many people who have seen him that I have talked to and all the other doctors and nurses and PT's that I talk to seem to admire and respect him.

The surgeon upon seeing me told me that I had tremendous soft tissue damage from the ongoing dislocations. He warned me prior to the operation that this was going to be a difficult surgery and that over 30 percent of my hip socket was missing and that it was very shallow. They had to order a special hip replacement from Japan to fit my body. I just love to be different lol. I was told before my surgery that I could be in for a very rough time. Here in canada it takes up to a year to get a THR and they had me in within 3 months as an emergency case.

As for your questions, the pain has been present since the surgery. The pain is worse if I walk. If I dont sit or stand for too long I can avoid the worst of it. It is not really an option to stay in bed all day however. And the pain in my bottocks is only on the right side.

I have had 3 x-rays since the operation and my doctor and the other residents that have reviewed them are all saying that it is text book perfect.

Seems that I managed to leave out alot of info in my last posts in an effort to keep it short.

Thanks again for your quick and caring replies :)

Alice
 
Alice it still sounds like way too much pain . I would go and get an opinion from a revision specialist if you can.
judy
 
Oh NO, ALICE!:shk: Don't think too highly of those ratemd surveys! :hissy: Many of the doctors pay to be included in those listings! The most important thing is for you to get the relief you need NOW! What good is "textbook perfect" if you can not walk!! You need ANOTHER. independent doctor's opinion! Hope you get the relief you deserve ASAP!! I never heard of anyone getting a prosthesis from Japan!:pzld: That sounds very suspicious and when you feel better, should look into that further! Good luck and let us know how you are doing! :wink:
 
No, neither have I ever heard of it. There are plenty of excellent companies in the West to get them from. It just doesn't make sense to me but there's always a first time for everything! So maybe your case was more complicated than the usual but I still can't fathom his being so casual about this pain. Even if there is a good reason for it it's still not right for him to pass it off by saying that "this is normal and that it may take up to a year for recovery". I just don't buy that.

But you also said "I have to admit I am getting scared. The x-rays show that the fit is perfect and everything looks good. If everything looks good why am I waking up in tears some nights?" so you're not totally convinced that all is well, are you?

Well, I recommended you get a second opinion and I stand by that.

In the meantime, it may well be that you've become tolerant to your present meds and maybe should try something different. Tramadol is a good pain med, it's a synthetic morphine and often given in the UK for TKRs which can be extremely painful. 100-150mgs is a good dose. Why don't you ask if you could try it? It can be taken in comjunction with acetominophen quite safely.

I hope you can find an answer soon. I think I'd be in tears as well were I in your shoes.
 
Jo thank you so very much for your ongoing interest in helping me. You would be amazed at how helpful it is just to have someone sympathize. I am going to a PT clinic tomorrow to have a functionality test done. SunLife is insisting that I am well enough to work. I think that they have used the Magic 8 ball method of determining my health as they have never seen me or spoken to any of my doctors. Thank goodness I was financially responsible prior to all of this. I didnt have much debt and had enough room on the visa to last a couple of months. My savings were eaten up prior to getting cut off by Sun Life. Since November of 2008 I have had 17 weeks with no income.

Unfortunately here in Canada the only way that I can get a second opinion is to go on the wait list to see another specialist. This can take up to one year.

Before I saw my surgeon I was on the list to see a different doctor and it was going to be 10 months to see him. The only reason I was bumped up the list is that I woke up screaming in pain and was taken to the ER. They did x-rays and said I needed surgery right away. At the time I had almost no joint left so I only had to wait 4 months for the operation instead of a year or more.

There is no private health care in canada so I cannot access a doctor and thanks to Sun Life I couldnt afford to see one even if I could.

I am so jealous of the UK system as Canadas health care system is beyond broken. Roughly 30 percent of people living in my city have no family doctor and to see any specialist takes a very long time. It leaves people like myself with very few options.

It is good to know that what I am enduring is not normal and also that I am not being a wimp about it. So thank you to everyone, I feel a bit better about having such a hard time dealing with the pain.

I will update you when I get the results of the test and cross your fingers for me. The financial stress added to all of the stress of the pain and disability is getting hard to take.

You guys are wonderful :)

Sincerely grateful

Alice
 
The stress of all the admin and finances may also be preventing your pain killers from working properly. That's a very underestimated problem.

Good luck to you and we'll always be here any time 24/7. God bless.
 
Hi Alice maybe try another Dr outside of the group. You know they are not going to go against one another...I sure hope you find the relief you deserve........Keep us posted .I will keep you in my prayers.....Dont stay in pain keep trying to get this resolved !!!!!!!!!!!!!!!!!!!!!!!!
 
There's just GOT to be HELP for you SOMEWHERE, Alice!!! I pray that you find the relief you so desperately need!!! Good luck to you and keep posting!!!! ((:0)
 
Hi All and Hi Texas :)

Unfotunately in Canada there is no "group". I can request a second opinion and I can access any doctor in the entire country. The problem is not that I am restricted to certain doctors, it is the waiting list to see one. For another opinion which is not deemed an emergency it would take anywhere from one to two years. We may have free health care but it certainly isnt fast :(

I went to the PT clinic and was tested. They have deemed me totally disabled and unable to perform any job. They are going to contact the case manager from Sun Life and demand a continuance of my financial support. As a matter of fact they were quite disgusted to read the letters. Cross your fingers because a lack of money sure wont allow me to work all it will do is bankrupt me!

Thanks again for all your kind words you are all just terrific. Wish I had found you guys earlier :)

Alice :)
 
Alice, you will be in my prayers. I sincerely hope your financial crisis can be resolved in your favor.

Even though it might take a long time, I do think you should get on the wait list for a second opinion. You can always cancel that appointment if you are no longer in pain. But what if - a year from now - you still hurt??? You need someone with independent eyes to take a look at your hip.

Is there any way you could come across the border to the US for this second opinion? You could be seen sooner.

We'll always be here for you for support no matter what is going on with you. We do care about you! I wish you luck in all this.
 
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