Would I recommend bilateral BMHRs?

johnnybravo84 said...
Hi Lori, I'm in need of bilateral hip replacement due to Avascular Necrosis in both femoral heads. My Doctors in Madison, Wisconsin, USA, has advised me to consider BMHR and am thinking about flying overseas to get it. Have looked at Dr. McMinn in Birmingham, UK and Dr. Bose in Chennai, India. Just wondering if you would summerize your entire experience thus far as a good one. Also, would you advise to do both hips at once, or did it prove to be somewhat "too much"? Thanks in advance for your reply!

Short answer:  Yes, the experience has been positive for me and I think if you can do both at once, it is worth serious consideration.

The long answer:  Even though I had a pretty rough time immediately post-op, I don't regret the decision that I made.  I made the right decision and I am already seeing just how much more I will be able to do.  I'm not a medical professional and my experiences are my own and are going to be individual to my particular case but I hope that sharing these will help others in both the decision making and rehabilitation process.

I'm happy to hear that your doctors have given you options that aren't just within their realm of expertise and services that they provide.  From some of the stories that I have heard, it isn't the norm unfortunately.  If you are a candidate for a BMHR, I would certainly recommend this over a THR based two things that were important to me: the BMHR is more bone conserving allowing for easier revision many many years in the future and the information I've read indicates that there are less restrictions on this prosthesis as compared to many total hip devices.   If '84 is your year of birth, I'd give your doctor's suggestion some serious thought.  Conserve as much bone as you can - you don't know what will be around in 20+ years when you need revision.

As part of the pre-op process, I signed authority to the surgeon to make the final call on this once he'd cut.  There was a small chance that I would need a total hip.  I wouldn't have wanted just any surgeon make this call. It was the first question I asked when I woke up.  I probably got a little too invested in the BMHR being the solution for me but my research had made me extremely positive about this option as being the 'one' for me.

My reasons for requiring hip replacement were related to damage caused by juvenile arthritis.  The damage had been there for a large number of years and my body had been compensating for this damage for almost as many years.  It has been explained to me that how our bodies recover very much depends on the condition that we are going in.

I don't know much about AVN so it really is hard for me to compare our experiences so that I can  have a guess at how well you will feel post surgery.  The two surgeons that you have mentioned are leaders in the field and I am sure that they will be able to give you a far better indication as to when you will be up for travelling home after the surgery.

I have seen a lot of information relating to travel and surgery on a discussion forum called Surface Hippy though most relates to BHRs.  Though not completely the same there are a lot of similarities in our recovery processes and some of the experiences that the members who have AVN and travelled might help with your decision making process.  The people are awesome there and no matter which decision that you make, I would highly recommend posting your question as they will have a lot of helpful things to add about the process that might differ from mine.

I have come across one BMHR lady who travelled on a forum.  It's only relatively new and there aren't as many people there so I'm not sure how successful you will be in contacting her there.  Rosemary references being a part of the yahoo group hipresurfacingsite so she may respond to a message there.  (I haven't really used yahoo groups as I loved the surface hippy group of people)  She travelled to McMinn for a ceramic BMHR recently and had her early recovery time in the UK away from home.  If you can find her, I'm sure that her story will be of great interest to you.   From what I can gather she spent about four weeks in the UK before travelling.  I would expect for bilateral, it should be at least that.  At that time, I don't think I could have handled a long plane trip home though from the stories I have read, many resurfacing patients have done it sooner - so it is possible.

You can't get better than Bose or McMinn.  There are a few others in their league though given the choice and that you have to travel anyway, why not go for the best!  McMinn was involved with the development of the BMHR and has the longest history of using them.  If you haven't already, read every page of his website! 

I believe that I couldn't have coped with one at a time as I would have chosen my right side to be done first, my left unoperated leg would have been the 'good' leg, the one that I would rely on a lot more.  I don't think it would have held up and actually quickly become the one that let me down and caused pain.  I don't think that I would have had the same opportunity for long term successes with one at a time, though this is really a gut feeling.  Unfortunately there is no 'control group' for scientific exploration of what is the best option for anyones exact particular experiences.   

The one thing that I wish I knew going in was that I was allergic to the hard drugs.  If I hadn't of had the hallucinations and nausea from the endone and oxycontin, I think that I would have had a bit more of a kick start the recovery process.  It might not have put me too much ahead now and there will be little difference by the time my new parts are a year old but I think that mentally/emotionally I would have been better off.  Major surgery is major surgery and if you have trouble with the meds or any other complications it's going to happen with one side or two.   Both at once means that your risk periods are going to finish at the same time and at twelve months you are going to have two new hips working well where as if you did one, the old one will probably need to be done by then starting the whole process over again.

Attitude is a big part of the recovery process for bilats.  You need to be prepared to put in the hard yards and fight to stay positive and do whatever you need to do get the best possible outcomes.  It is harder but I don't think it's 'twice' as hard.  There were moments where I thought I made the wrong decision though this was in the early days where I just felt like absolute shit.  I think the memories of this are already fading though as my husband chastised me the other day for saying something was worse than hip replacement (Mildly of course!).  He couldn't understand how I could speak so flippantly about that time.  I guess the good that I can see now outweighs that time so much so that the memories have faded. 

I really thought it would be easier than what it was.  In that regard, my expectations were a little unreasonable.  Time is the only thing that I've been off with though.  Everything else is looking great and I don't regret it at all.  In a way, my timing was right as the other set expectation was that at three months out, I was no worse of than pre-op.  At that time I was significantly better in a number of areas.  I guess that I just didn't quite realise exactly what that would mean.  The piece of wisdom that can be gleaned from this, it is probably not wise to set conflicting expectations!

I did this at the best time for me and the outcomes so far have been stellar.  I'm no longer on pain or anti-inflammatory meds.  I have a range of movement that I don't ever remember having.  I'm already doing things that I couldn't do before and though these might seem minor to some, these are huge to me.  I still have another 7 months of improvements before the progress levels off and I'm expecting big things!

I wish you well on your search for information to help make your decision.  Please feel free to ask any other questions that you might have.  Please keep us posted as to what you decide to do and how you go!

Six Week Surgical Review

I went to visit the surgeon on Monday for my six week post-op review. I was a little nervous the night before and while driving back into the hospital. Realistically, I know I've done well and my progress has been steady, so there was no real reason to be nervous. I'm not quite sure what started up the butterflies but they were quickly squashed.

On the way in, we were a little early and managed to get a 15 minute parking spot just in front of the coffee shop so the day was starting off well.

When we arrived in the surgeon's office, we were sent upstairs for new x-rays. Q-Scan uses the new digital machines so I have a nice little CD with the three views showing the perfect placement of my two BMHRs. I had to download a view for the Mac (it came with a windows viewer - the one I downloaded is free and pretty cool. It's a DICOM viewer called Osirix) and now when I have a few minutes I will be able to upload some clearer images. It still amazes me that they are in there. The joints don't feel anything but natural. I guess after so many years of crunching and ROM limitations my idea of normal is a joint with smooth, fluid movement. I know that my limiting factors at the moment as far as mobility goes are to do with muscle strength and tightness not the actual joints themselves.

We headed back to the surgeon's office and saw him pretty quickly. He's pretty happy with my progress and gave me the all clear to lift the hip restrictions. We had a quick chat about my progress, the improvement of the left side foot drop (all better now) and other bits and pieces. The Four Corners piece was raised, which I commented that I hadn't seen though I had heard that it was quite biased and that kind of led into a general conversation about acetabular cup placement (mine is perfect, having an awesome experienced surgeon is crucial), the number of resurfacings he has done (700+) and the success he has had with the BHR (The BMHR is still new though the data is much like the BHR's early data and is promising).

I asked about metal testing and pregnancy for when we get to that point in a couple of years. I was asked if I would supply test results when we go down that path and I said I would happily volunteer results for data for a study on the MOM devices.

[Side Note: I really believe that they are the best option for a lot of people, not just people like me. Some articles still suggest the MOM devices are not suitable for women of child bearing age as there is some evidence that the metal-ions pass through the blood barrier, however, there is no evidence that it will cause any problems. This may get a lot of negative comments and I challenge the naysayers to find hard data before name calling. I am open to an open dialogue of the issue, however, comments with rude remarks will not be accepted. I trust my surgeon and the data that he has researched as an expert in this field. The research I have done supports my belief in him. The decision to have the procedure was not one made without great consideration of a lot of factors. I will eventually write more on the topic of making this decision, so at some point the label 'Decision' will have more posts. Just like this part of our lives, we will do due diligence to any big decisions that we make. Anyway, back to the topic at hand.]

I enjoyed the appointment. I think I'm an interesting topic to talk about! Actually it's the shiny new hips that are interesting as well as the progress that's been made and will be made and all things relating to the new parts that the surgeon knows that I don't. The summary of the appointment is that all is good and I am due for review again in September.

In the meantime, HIP RESTRICTIONS ARE LIFTED! Not that I can really exceed 90 degree hip flexion, but that isn't the point. The point is that the risk of dislocation has reduced and I have passed that first hurdle. (There are other things that I don't have to be as concerned about either - though the seat height is probably the one that functionally is the most difficult to deal with.) It's nice to be able to be able to stretch a bit more, to reach down to at least try and touch my toes - still a few inches off and my hamstrings are squealing! They need a lot of stretching out just like pretty much everything else. I can't reach as far as I could pre-op yet, though it has been almost seven weeks since I've done that stretch so I guess it isn't too surprising that it isn't the easiest thing to do.

So the plan for the coming week is as much stretching as possible and keep on top of the exercises. I have a little bit of work to do tomorrow so I'm going to have to figure that into my day as well to make sure everything gets done. I feel like I should be doing more by now but I am still tiring easily. It's getting better as each day passes though there is still a little way to go yet.

With that in mind, I really need some sleep. It's way past the bed time I have gotten used to. Even though I've always loved sleep, I need even more these days. I guess that's an indicator that my body is still investing a lot of energy into the healing process.

Til next time!

It's no big deal, right?

Wrong.

This is a Big F***ing Deal.  Just because everyone ends up getting bits and pieces replaced doesn't make it less of a BFD to me.

The actual op itself - it's not a BFD.  Yes I have considered the risks of {read this bit very fast} going under general anaesthetic, like, hey, not waking up;  or them getting in there and finding out that the BMHR isn't going to work out and it needs to be a total hip; or complications during surgery meaning only one gets done; or the possible post op complications like clots; or the acetabular cup not being placed 'just so' and the metal wear causing pseudo-tumours, having to take antibiotics every time I go to the dentist for the rest of my life, or possibly setting off every metal detector I walk through again and ending up in secondary inspection *deep breath* (and spoken very slowly with finality) Yes - I can not be late to the airport *ever* again.

It's not a BFD for any of these reasons.

It's a BFD because it is going to improve my quality of life.

It might not seem to be a BFD to those who have never struggled with chronic pain (oh how I wish to share, just for a few minutes, just so they know what it feels like to stand still and think about moving in a normal range of movement and to feel the pain the first time - I know that is truly evil - but how else do you gain understanding without experience? *innocent face*)

What's the old saying 'Want to walk a mile in my shoes?'  Apparently then you'll understand...  Hang on a second here - that's not possible?  Who wants to walk a mile anyway right?  You lucky F'er, you get to be lazy.  Maybe I do...  maybe I don't....  maybe I just want the actual choice to walk a mile should I ever want to.

Maybe it's not a BFD to those who think that it isn't a BFD to deal with with what I deal with now.  I guess you could be forgiven for thinking that.  I hide it well.  There are very few that even catch a glimpse of it.  I do the things I need to do to maximise what I can do (Sometimes, I know, I'm not very good at doing *everything* that I could be doing - but that's life.  Sometimes you just do what you can), so most of the time, I just look like the regular stressed worker bee, no different from any other worker bee.  When I'm not, I hibernate, away from the world or find reasons to remain seated, or move when no-one is watching or thousands of other little 'things' I've learnt to protect myself.

The rest of you out in the world just get to think that I'm leaving early because I'm no fun at the party, I'm lazy and catching a cab instead of walking a mile, I'm too busy to go to the event that I'd actually love to go to but there won't be any seating, I look tired all of the time because I don't sleep (and yet I really have but it's never enough).  I bet these same people have never seen me tie my own shoelaces either.  Come to think of it, have you ever seen me wear shoes with laces?  No - probably not - you know why?  I can't do them up.  There's more and it's equally humiliating, but does it really matter?  No.  You know why you don't hear about it? It's not worth complaining about - It Just Is.  There are people worse off.  There are people who can't just go get this fixed.  They aren't looking for sympathy and neither am I.  I live my life to the best I can and now it's time to move past it - management is no longer the solution.

I'm not looking for sympathy, just maybe a little understanding so that you can share my excitement.  (To all you dumb asses that think that understanding is the same as sympathy, please go to last sentence in this post).

This is exciting.  This is going to be a new life for me.  Things that I've not been able to do since I was eleven.  Imagine that.  Wow.  How can you not see my enthusiasm and be excited for me?   Even with all the worst case scenarios, the worst case, is still better than a bad day.
<MorbidHumour> providing that I do wake up from general and get a blood clot - but hey the odds of that are probably lower than getting hit by a bus and hey that hasn't happened yet</MorbidHumour>  The prognosis is excellent.  I've learnt a lot from my journey.  I know I can do this.  I know that I will conquer rehab.  I know that there are new, exciting things happening and they are going to happen this year.

C'mon, who hasn't seen a child take joy in doing something simple for the first time.  How awesome would it be to know what you know now and still get to take the joy in something as simple as tying shoelaces (ok, maybe I'm going a little overboard with the comparison since I still remember how to tie a bow - but come on think about it).  Little things that other people take for granted are a big deal?  Dropped something on the ground and being able to pick it up!!  [Side note:  Believe me, I have walked away from dropped coins before and then other times looked at the dropped item and almost cried, realising that I can't just walk away and I have no fricking idea on how I am going to pick it up while stubbornly swiping and attempt to grasp the offending item.  Sometimes ingeniousness is required when you need another item like a key or something in your handbag for that extra reach to tip it up against something and slowly raise it up against something so it stands a little higher while you silently pray that no one is watching this pathetic attempt. (Please note this can end up horribly - key and credit card on the ground - lol - if you've been here with me at some point in your life, you've got to laugh, otherwise this is the tears moment!)]

Let's step it up a bit.   Want to live without the need for persistent pain medication and miss out on the side order of stomach ulcers?  Want to ride a bike?  Or maybe going swimming in the ocean?  Going to a concert and being in the 'mosh pit'?  Or maybe just being able to walk to school (or work!).  Want to catch a bus or a tram at the end of the day?  Hell, want to get out of a chair at the end of the day? Go on a long walk?  Or just a walk to the corner store?  Sit on the floor and get up again?   [Side note:  It won't happen overnight, but it will happen (haha)] 


Want to have the choice to do any of these things and more?

To those who think that isn't a BFD - well -

Go Jump!

Getting my life in order

Much of the last week was spent on tasks not directly related to the surgery.  Once I had made the decision to proceed, there were a lot of housekeeping items that I have decided needed to be taken care of before the 'big day'.  This will be the start of a new phase of my life and the 'old' needs to be finished and left behind as well.  This is the really boring stuff, like going to the accountant and getting the taxes up to date, checking into all our insurances to make sure we have the best options for us at this point in our lives, unpacking a few more boxes that have been sitting in our new house since we moved in twelve months ago and other such 'fun' tasks I am sure most people are familiar with.  It is highly unlikely that I will be inspired to work on these tasks whilst focusing on recovery since I have done so well in putting them off over the last few years, so maybe it's about time that I get my whole life in order and start fresh, not weighted down by the 'old stuff'.

In the decision making process, there were a lot of things to consider about what I want from my future and I think that in part, the things that held off moving towards making these things happen is the 'old stuff' that hangs around and becomes an excuse to stay in the same place (metaphorically).  I'm not quite sure of there was a single catalyst was to start down this path or if it was a number of reasons that I have collected over the last few years that I am sure that when I figure it out, it will be a good story to tell.  At that point though I hope to have all of the boxes unpacked and well on the way down the bright and shiny path.

Introduction

The decision to have bilateral hip replacement surgery has taken a little while to come to and has been a consideration for me for some time.  It will take me a number of posts to cover the things that I considered before booking the surgery as well as what I have done since in preparation.  I hope to chronicle the journey from now through rehabilitation and living with new hips in the hope that this information is useful to someone else out there who is in the same situation as I am.

I have done a lot of google searching looking for not only information about the procedure itself, but also the stories of people that have had hip replacements. Of most interest to me are the accounts of women of child bearing age who haven't had children yet and are looking to do so at some point in the future (or maybe have since their op).  I was also interested in hearing the stories of women who have severe hip joint problems primarily caused by arthritis (rheumatoid or other).  Having grown up with a chronic illness that I really didn't want to talk about as a child or even as an adult, it didn't really surprise me that there weren't a lot of personal accounts online.  Thought I don't know what I really expected to find, it certainly was more than what was out there.  I would still love to hear from you and your story if you have been through this, or thinking about going through this.

The story as I tell it here will probably be a little disjointed as a lot has happened leading up to this point which is needed to understand some of how I ended up at this point.  In between the day-to-days activities that are going on in the lead up to and post surgery, I'll do my best to explain the history.

Lori