Advice prior to my THR

[Jaycey]

I agree with Jamie - sounds like this surgeon is not the one for you.

Yes there are risks and he might not have all the answers but if you are not feeling comfortable about his approach then it is wrong. Please try and find someone you can work with.

The dialog between patient the OS is very important. With the right surgeon you may be nervous but you won't have the worry about whether you two are in agreement with the direction.

Please let us know what you decide.

 

[Josephine]

Jyoti, now that you tell us more about your condition, I can add a little more.

First, having had osteotomies in the past does indeed make for complex hip replacements. But it's not something we're not accustomed to. There are surgeons with plenty of experience in dealing with these situations.

Second, the condition of your muscles is a very important factor. If you've had reduced mobility for years, then the muscles will be underdeveloped and lack tone and that will effect the outcome of the THR. The question is, will those muscles ever regain their bulk, strength and tone after being that way for so long? They might, they might not - only time will tell. I think that was why he was so non-committal. And the same will apply to the leg length discrepancy. He can only do what he can and he'll only know what that is when he gets in there, as he said. I think it's quite right for surgeons to be wary of offering bright and overly positive opinions about these kinds of situations as no-one can really predict the overall outcome.

Thirdly, about the longevity of the implants. They will last a long time, for sure, but if you have all these musculo-skeletal problems, the stresses could effect the seating and fixation of the implants. Meaning that there could be an increased risk of loosening or implant fracture. But I'm guessing it won't be a great increase. Remember, there are many in your situation who have had such problem hips converted to THR and though the revision rate is a little higher, it still means there are lots out there who are managing very well.

The end result is, the only thing for certain is that you will be free of bone pain. Whether you will be free of soft tissue pain, regain a significant amount of movement or whether the implanted joint will last you years and years, no-one can really say. But I can say that with the right surgeon, the odds will be very much in your favour.

So you need to be down-to-earth practical about this and prioritise your expectations. Make a list of the things that are bothering you and grade them as to what you'd settle for on a scale of 1-10. They could include
- getting rid of the bone-on-bone pain
- movement as in walking better, getting up off chairs more easily
- being able to stand for periods
- being able to walk distances
- being able to sleep better
- not having to take daily pain killers to get through your day
- being able to sit on the floor
- being able to put on sock and tie your shoes laces

So if you rated the bone-on-bone pain as being the predominant thing, then you need to accept that you'd be prepared to go on with the rest and so on. Once you've got that sorted, and had the hip done, then every other item on your list that you got back would be a bonus. See what I mean?

It doesn't mean that you won't get them nor that it mightn't be a struggle to get them back, but at least you'll start with realistic expectations and not be so disappointed when you get this kind of reaction from the surgeons. Because really that's like asking them to see into the future and none of them are that gifted!

Anyway, tell me who were the surgeons you saw and at which hospitals and I'll take a look at their bios and I'll see if I can't recommend someone who has a bit more experience in your kind of case.

 

[Jyoti]

Thanks Jo for your reassurance . I saw Mr Phillip Mitchell at St. George's Hospital in London. He works with a Mr Mr Bridle and they have their private practice also and I saw their web site called hipclinic.org. He did say that due to the complexity of the operation he would need to do it with Mr Bridle. When I had originally seen Mr Richard Villar ( 2nd opinion) he said that he believed them both to be good surgeons.

I also remembered 2 other questions that I asked. Firstly due to my LLD and lack of ROM my left leg takes the majority of the strain. It also has more muscle mass on it. I asked him whether my left leg would suffer quicker because of my right leg. He said he did not think so. He said my back may suffer as I do have Lordosis already and I see an Osteopath who was also concerned about the effects on my back. However, my x-rays show early degenerative changes in both knees, so I believe that even if my hip may be ok, my knee does cause me some problems even now.
Thanks
Jyoti

 

[danni]

jyoti I am 46 awaiting hip revision surgery having my first hip at 26. I also had hip dysplasia in my left hip. I was told at the initial surgery ,had I been any later I would have been too late as my pelvis was badly damaged and i needed extensive bonegrafting to enable the surgeon to fit the prostetic. Josephine might be able to tell you if that sounds possible or maybe I was told a whole load of guff as well. I cant help wondering at this stage are consultants painting awful pictures in order for us to be so grateful when the surgery works out well, or that we may not be so surprised if it does not work out so well. Either way they cannot lose all the while we end up carrying a heavy burden of worry on our backs. Maybe it has something to do with litigation. forgive my rant i am very confused at the moment also as my os wont give me any possitive info either.

 

[Jaycey]

danni, I don't think surgeons are negative so we will be grateful. It's just that things are difficult to predict - especially if the case is not straight forward. Everyone heals differently. My pain level during recovery might be unbearable to some and tolerable to others.

I think the most important thing is to be able to talk freely with your OS. To be able to discuss the positives and negatives and trust that your OS will keep you informed is key.

I hope you can use this site to help you ease your worries.

 

[danni]

Jyoti, sorry for my rant I think what I was trying to say is that OS are afraid to gaurantee anything for fear of litigation. I had my first op when i was 26. I did have a complication but it healed for the most part within 2 years. I still have swelling in my calf as a result and sensitivity due to nerve injury but not a big issue. I also still had a limp but some of my muscles did regain strength due to a lot of walking. I had a great twenty years and I certainly have no regrets I enjoyed the best years of my life. Hope this helps.

 

[Jyoti]

Don't worry it wasn't a rant for me Danni It's just so nice to hear from other people in similar situations and to know that I am not on my own. You don't really meet people who are awaiting or have had a THR.

So happy to hear that you had 20 years from your first THR - that's brilliant! It really puts it into perspective that I am 42 and worried about my age. Hope to be able to have 20 years - I would be so happy if it all goes well.

It just feels so depressing when you can't get positive answers from the OS. But I know now due to my history you can't be so positive. It would be nice though, if the OS could say why it's more difficult with my history, rather then feeling anxious and searching for the information. I feel alot happier knowing that I have found this forum as I can whatever I like, of course within reason ;).

Hope all goes well with you Danni, and look forward to hearing what happens next.
Jyoti

 

[Jamie]

Jyoti, don't hesitate to have a frank discussion with your surgeon the next time you see him. They don't just magically know that the words they say can be upsetting to a patient. They need to hear it from you. I did this with my first orthopedic surgeon who (in shock himself) told me that I had lost all the cartilage in my knee joint in the 2 months following his arthroscopic surgery. Because he couldn't find any words to describe what happened or comfort me, I left his office that day in stark fear that I was going to be in a wheelchair the rest of my life (I had a small spot of necrosis - dead bone - in the knee joint too and I feared it would be spreading throughout my body). Weeks later after I had received more information from other, more experienced surgeons, I made an appointment and went back to let him know how his response had affected me. He was very thankful for my honesty and we talked for a good 40 minutes. I'd like to think it made him a better doctor down the road.

If you do this, it's important not to be loud or emotional....just state the facts of the impact of his words or lack of words had on your level of fear. Surgeons want to do a good job and comfort their patients and I feel like an honest discussion is always a good idea.

 

[Jaycey]

Danni - don't ever feel like you need to apologise for rant here. That's what this forum is all about. And as Jyoti says, there are people here who fully understand what you are going through. We were all nervous and depressed when we were diagnosed. It's natural to want to know what the future holds.

Jyoti - I hope Danni's comment on her 20 years eases your mind a bit. There are many members here who are young THR patients. Things have changed and technology now gives us years of use from our new hips.

I hope you both stay with us here. This site is a great resource through this journey!

 

[JuliaB]

HI, Jyoti. I too have hip dysplasia, having been born with bilaterally dislocated hips with severe coxa vara. I had osteotomies on both sides during my childhood, and my parents were warned I would develop severe arthritis in both hips by my mid-thirties and probably spend my life in a wheelchair - that was in the mid 1960's before hip replacements became common place - and that really hung over me for much of my life. The arthritis became apparent maybe 5 years ago and accelerated badly last year; I had my left hip replaced last March at age 50, and I expect to take care of the right hip next year, maybe the year after that depending on how things are as I go along.

I made sure I retained a surgeon with specific expertise in hip revisions and adult reconstruction - I don't think it is enough for those like you and me to just find a "good surgeon". My surgeon is not a good talker, but I have confidence in his technical skill and decided that was a trade-off I could accept. He was very clear with me that surgery would be difficult and that there would be risks as to the outcome, the fit of the prosthesis and potential nerve damage - none of which happened. At 8 1/2 months after surgery, my recovery has been slower than than most - I still have some general muscle weakness in my legs and I still have a bit of a limp on the operated side due to my short, weak abductor (and now a bit of a limp on my other side due to that hip's deterioration) so I am still using a cane - but I can see that I am making progress every month, and I am beginning to see the proverbial light at the end of the tunnel. I do receive lots of concerned looks and comments from "non-hippies" who think I should be much more recovered by now, but I have learned to put that aside and focus on what I need to do. I do not regret undertaking this "project" at all, and I am confident I will be - and already am - better off than where I started a year ago. It sure could not have been much worse.

I encourage you to find the appropriate surgeon, and then take the risk.

 

[danni]

jyoti
I know what you mean they tell you it will be complex but wont explain, in what way, and what they can possibly do if faced with certain situations. Its so frustrating. Make sure you go to a specialist orthopeadic hospital and make sure the surgeon specialises in hip replacement. Dont worry about his personality too much it doesnt mean he is not a good surgeon. Actually if he is the quiet type he is less likely to be chatting with his companions while doing a procedure on you.... I know quite a few people who had hip replacements as young as you and its quite obvious that their quality of life has improved greatly. I hope you go for it. I know people who choose not to go for it and clearly are suffering and I feel for them as my life has been so much fun and pain free.

 

[Josephine]

Actually if he is the quiet type he is less likely to be chatting with his companions while doing a procedure on you...

You think that would be the case? I can assure you that once a surgeon picks up a scalpel he is completely focussed for the duration.. It's a standard rule (in any place I worked in) that you cannot speak to the surgeon when he is operating, you have to give the message to the scrub nurse and she/he decides when it's appropriate to interrupt him. Chit chat doesn't happen until they are sowing up!

And they don't withhold guarantees because of litigation but because they cannot give them. No-one can see into the future - it's that simple. How would you feel if he told you it would all be okay and your hip would be perfectly normal and it wasn't? And then when you went back to him and he said ' well I didn't really think it would be, I just wanted to be positive for you'. You wouldn't thank him for that, would you?

Look at it this way - at least surgeons don't stand back, suck through their teeth and say "well, I don't know ....." like a some car mechanics do!

 

[Jyoti]

Thanks for your post Julia - it was so interesting reading it as we both have the same condition. You lasted a lot longer then me in getting your THR .

Well I looked up my OS on the hospital website and it said that he specialised in complex primary placements and revisions, which sounds promising!! I also found a National newspaper article from Aug 2010 stating that he was one of the 10 best surgeons in the UK. So it seems that he is known in his field. Pity about him not talking alot. It would be so much easier if OS would take your history and from this give you a realistic outcome about your surgery rather then us trying to figure out what to ask. I would not have a clue if I had not looked on the web and especially by finding this forum.

Jo, your earlier post when you talk about bone on bone pain and tissue pain made me think, as my pain is mainly muscular around the thigh area. I had read that hip pain is mainly from the groin which I do get ocassionally. I have been told that my pain is referred pain from my hip, but how do I know?? I was a bit worried as you said that bone on bone pain would go but maybe the soft tissue pain may not. That's another question I need to remember to ask in Jan. Also about the higher incidence of fracture etc. It would have been so much easier if they spent a few mins providing this vital information so we can make informed decisions about the surgery.

Since my consultation I have started to be more objective in dealing with accepting the operation. I am stopping myself doing things, which I said earlier was the norm for me so a few extra things doesn't matter, but I need to stop that and live my life properly while I still can. It is a risk due to my history but I need to bite the bullet and accept that risk and the consequences after the surgery. I need to accept both the good and the bad and deal with whatever happens!

I know once I get my date I will have doubts but hope over the next few months I will be able to learn to accept it. I am still looking at the counselling so will let you know what happens next
Thanks
Jyoti
xoxo

 

[Josephine]

Also about the higher incidence of fracture etc

What I actually said was that "if you have all these musculo-skeletal problems, the stresses could effect the seating and fixation of the implants. Meaning that there could be an increased risk of loosening or implant fracture." I wasn't saying there would bea greater risk; just trying to explain a few of the many reasons why he would have been reticent to offer very much in the way of assurances that the results would be 100%. Truth is, I'm afraid, that no-one can actually do that.

But I'm glad the rest has helped you a bit.

 

[Itzdor]

Since your surgeon has done this so many times, ask him to have you speak with other patients he has operated on who had similar medical histories. He probably can't give you their contact information because of confidentiality issues, but his office should be able to ask them to contact you. Four or five should give you some peace of mind.

Also, post surgery, can't they correct your leg length discrepancies with shoe lifts if necessary??

You may want the surgeon who performs the procedure EVERY DAY not just someone who has removed themselves to write about them. It's like having a doctor draw your blood (yipes!) or a technician who does it all day long.

I can certainly understand your reticence, but don't let possible unknowns scare you silly. Sometimes armed with much information we simply have to take the gamble. I am absolutely delighted with my THR (done 5/10)- I never even think of my hip anymore as I move around. I am supposed to have my other hip done, but am having no pain at this point so will wait until I do to do anything further.

Good luck. Don't over think (we can do that) and don't sabotage yourself once you make up your mind!!!

 

[Jyoti]

Thanks Itzdor.

I am an over thinker and want to know everything! That's my biggest problem. For me the biggest issues was that when I was a child things were done to me ie operations etc. I was told that I would have a THR, but it was never explained and now as an adult I have to make the decision. I am now learning so much about my THR and the various differences from the average THR and not knowing the outcome worries me. That's why I need to figure out what I want - getting in the right headspace.

In relation to heel lifts, I know and I hate them!! I have had a LLD since age 7 which has become worse and haveused a heel lift and inserts for the past 8 years. I want that to end so I can wear different shoes etc.

I know I'm too fussy.:hehe:
Jyoti

 

[Jaycey]

Jyoti, I agree with you regarding learning about the procedure. There is nothing wrong with wanting to know more!

When I joined BoneSmart early this year I was just diagnosed and scared to death. But for me the more I know about the procedure the better I feel about it. I researched extensively when I had spinal surgery in 2007. I researched even more when I found out I had to have my THR. Keep on researching and asking all the questions. I think you will find it is much easier to come to terms with your decision.

Heel lifts - well I am there now. My hip was totally blown by the time they did the surgery so LLD was something I had to accept. I have said it before - I would rather deal with the heel lift than the horrid pain I was in. I can and do wear different shoes so I'm not sure why you are having that problem. I do shop at specialty stores that sell shoes that are "orthotic friendly".

I'm glad you are considering this carefully and hope you find the answers you need.

Please let us know what direction you decide to take. All the best!

 

[HaggisWhisperer]

Hi Jyoti,

I was also born with dysplasia (right side) and had numerous surgeries including osteotomies when I was a child. I have been having a bit of a run around with consultants recently - starting off with one at my local hospital who I thought was great but when I got punted off his list to go to another hospital (due to waiting times manipulation) the new consultant was practically wringing his hands looking at me X-rays and said he wouldn't be offended if I went elsewhere:shk:. I hadn't realised until this time that my replacment would be so complex so I took the opportunity to do some homework and find an alternative surgeon - I looked at the same article you did but the bloke in Scotland had just retired so I asked around and researched and have got someone else that seems to tick the boxes. I will be seeing him for the first time on the 23rd Dec. I have also been given mixed messages about outcome - the last bloke seemed to think I should only consider it as a pain killing measure and not to consider being able to do more - and the bloke at my local hospital seemed to be giving me more long term restrictions than I have at the moment (things I can do but they hurt a lot - but when you have kids you just do them anyway...). I really don't know what this surgeon will say, but like you, the mixed messages are rather confusing.:pzld:.

Fingers crossed for both of us.

Nancy

 

[Jyoti]

Nancy,

Would love to hear what happens after your consultation in Dec. As we both have similar histories it would be nice to know what different OS's say.

Yes, fingers crossed for both of us XXX

 

[pt109]

I was in similar pain with my hips and had both done 6 months apart. It was THE BEST decision of my life. I now have my life back and so will you! Just do it! You will not regret it and those new hips will last a lot longer than 10 years. My orthopod told me that I could expect at least 20 years and maybe 30. I walk an hour a day and do everything i want to do with out pain. It is amazing. I actually looked forward to the second hip replacement surgery since I knew it would take the pain away and the discomfort of recovery was so much less than the pain I had been living with before surgery. You will do fine!!