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!

Surgical Review Day

I was actually on time to see Paul this morning even though it has probably been the earliest appointment that I have ever had at the clinic.  Some of the muscles are already better than they were pre-op and everything else is coming along nicely.  I was pretty confident that the day was going according to schedule when I arrived in at the hospital before 10am even after stopping for a takeaway coffee on the way.

I headed into QScan to get the x-rays required for my appointment, only their machine was broken and I had to find my way to QLD X-ray to have them done.  After a few navigational errors, I found myself ready for a long wait.  At a few minutes before my appointment I wasn't sure that I was going to make it since my x-rays hadn't come back yet.  Thankfully the surgeon's office was still going to let me come to see him even though I was late.  A few people had already been delayed by the same issue so it turned out ok.  I really should have gone to have them done on a completely different day to allow for things to go wrong and though I would have been disappointed to reschedule, I would have understood.

The surgeon is happy with my progress so far and I got told to keep doing what I'm doing.  The x-rays look good and I'm due again for review on 9 April next year.  Providing there isn't anything requiring closer monitoring, I will go onto an annual review schedule from there on in.  

I asked the question about the ranges and was told that I'm actually doing ok with them and will continue to see improvements until at least the 12 month mark.  How far I actually get is going to depend on not only what I do, but the condition pre-operatively is going to affect the outcomes.  I did understand this going in and already everything is better than it was going in, but I am still optimistic that there is more that I can get out of this.  The flexion estimate is about another 10 degrees active (around 100 - 105 degrees).  Apparently what I have now is on par with the outcomes of a lot of total hips that are in the condition that mine were pre-operatively.  I see this as a positive sign for my progress this far.  It makes me feel a little bit better about not being on par with the BHRs and other resurfacing components on a number of discussion groups.  This doesn't often bother me, but every now and then it's nice to be reminded not to compare too closely.  I started off a long way behind them and I think that in the long run I will be far better off as I don't have the 'hey day' to compare my achievements with.  I was never a ballet dancer or a taekwondo black belt that I'm aspiring to be again. These people are likely to recover to a higher standard as they are likely to be in better condition going in but the loss of even just a little bit is going to hurt.  I am all gains, which to me, seems to be the better view.

I also saw a ceramic BMHR.  I even touched it.  They are pretty.  I think my shiny MOM component is better looking but the ceramic is nice (Not that you choose these items for cosmetic reasons!).  Dr Journeaux has done one of these in the public health system so far.  They haven't been approved for use by the private system yet even though the MOM's are (Of those his count is over a hundred and for the BHRs, I think it was nearing a thousand).  Still early days for all surgeons doing them though it is all positive (I linked to McMinn's info on the Ceramic BMHR over the weekend).  There are no revisions for BMHRs for my surgeon at this time which I think is a really good sign.  It means it's tracking well with the longer term statistics available for the BHR.

There are always changes in this field and regardless of what happens next, I got what I needed and at the right time.  The common consensus seems to be that it will be for a long time too!

I'm starting to get a little tired.  Probably due to the change in routine for today.  Though I tried to get to sleep at a normal hour last night, it really didn't work out since I'm used to later nights and later mornings.  I'm sure I've probably missed something in the summary of today, so feel free to ask questions.  If I think of anything more I'll add a new post later!

GP Checkup, Bad Seats and Regular Days

The last few days have seemed busy even though I really haven't achieved a whole lot.  I couldn't even tell you when the last time was that I wrote a blog update without checking.  Hey, it was that entry Pain management: in the beginning - that still needs to be finished!  There is so much more to add and it seems like most days I'm just too busy to sit for a few hours and get the details down.  It's a little odd considering that I haven't really been anywhere for ages.  The every day bits and pieces haven't really been covered for a little while either and there are a couple of things that have happened that rate a mention.

Physio on Friday was good.  It wasn't much of an exercise day as we focused on releasing some of the very tight muscles that had been driving me crazy.  Even though I had been trying to release them myself, I hadn't quite gotten to where I needed to be and needed some extra help to get there.  I felt a hundred times better by the end of the session.

When we did the range measurements for hip flexion, it was actually my knees holding me back in the active range.  Once we released these, I ended up with an extra 5 degrees more than the previous measurement.  (If you need a visual on this one to understand what on earth I am talking about:  Laying on your back, slide your heel up towards your bottom making sure that your pelvis stays straight - so other leg straight and level on the bed.  The active hip range is measured in this position.  The passive range is measured by having your leg lifted to table top and moved towards your chest.  For me, there is a few degrees difference between the two)

So while all this was going on, the landline rang in the lounge room which is a fair way from the bed where I was getting measured.  I elected to ignore the phone as the only people that have it are the hospital, the red cross and the alarm company and I could see no reason why any one of those would be calling me since I've been to my post op appointment, spoken to the red cross in the last week and I was in the house so the alarm can't have been going off.  After it stopped ringing, my mobile rang.  It was the alarm company.  They were just checking to make sure that the alarm was still working since it hadn't been armed in such a long time (maybe two weeks).  We had to go outside the house and arm and disarm while I was on the phone so that they could confirm that it was all working properly.  How very embarrassing.  A reminder that I hadn't gone anywhere in two weeks.  Hopefully I'll be driving myself soon and will be a little bit more independent.  Even though I am quite comfortable at home and can fill the days, I think that getting out a bit more would probably do me some good.

I didn't really do anything out of the ordinary on Saturday.  It was a day for sleeping in, getting my exercises done, making sure that I did a few extra trips up and down the stairs and I watched some tv.  My husband was at home but unfortunately he had to work most of the day so I was pretty much left to my own devices.  

Sunday we went out to lunch at my mums place.  It's the longest car trip I've had since pre-op and it went ok.  The seat that I sat on for lunch wasn't really that great though and I came home a little bit tired and tight.  This probably wasn't just a bad seat for me but more that since I went out and it wasn't an activity where I had to walk very far that I didn't have the same level of activity on that day.  I am used to doing a far bit now, even if it is just around the house and a day where the activity levels drop seems to make more of a difference than I thought.  I still only needed a couple of Panadol Osteo to sleep, so I guess it wasn't too bad.  I'll have to make up for the lack of walking today.  

Today I had a GP checkup.  Primarily it was to sign some paperwork so that I can get some extra physio rebates from Medicare as I have a chronic condition (I'm sure you've figured this out by now!). While I was there I checked on my blood work (all good, inflammatory markers a little high but nothing that wasn't expected), got a flu vaccination and went through the changes / improvements since my last visit.  The doctor seemed really happy with my progress.  He has seen some bilaterals before so I guess he has some basis for comparison.  The main changes to report were the lack of medication required, using one crutch most of the time, hip restrictions gone and improvements in ranges.  

Things feel like they are going so very slowly at the moment.  It feels like the improvements are slowing down.  It's hard for me to see the differences between each day as it is taking more than a day for the differences to add up to something substantial.  The last big one was being able to balance on my right leg.  I'm not sure that there has been anything new since then.  

I suppose I could say that sitting on a regular toilet seat and managing to get back off it was an achievement.  I'm not sure if I could have done that a few weeks ago (I wasn't allowed to try until I got off hip restrictions anyway).   I thought I would give it a go on one of my trips downstairs to practice stairs.  Since it has been two months since I sat on a regular low toilet, I really had forgotten just how low they were.  I'm not sure who came up with that idea but it truly is crazy.  The height I have now (with the over toilet height adjustable seat) seems far more reasonable.  I guess I will have to practice and get used to it the more I am gong out in public though.  I wonder if getting on an off the toilet could be classed as adding an exercise to my day?  I suppose it could be if I drank a lot of water, right?  Anyway, it was just as well I had practiced before we went out on Sunday as I was prepared to use a regular height toilet and it all went fine.  Sometimes I really do wonder how it is that everything seems to end up a conversation about toilets these days.  

I fit into my regular size jeans again.  This means that the swelling has gone down and my thighs have returned to their normal size which is positive.  The knees are still swollen and really should be iced but it's too cold! I know I'm a wimp.  Strange really that I get through a massive surgery like this and what I want to complain about is that it is too cold to ice my knees!  Some would also say that it really isn't cold in Brisbane but it is to me as I've lived here for many years and am well adjusted to this climate.  I really should do it in the mornings when I'm sitting out the front in the sunlight drinking my coffee.  It probably wouldn't be too bad then.  Maybe I'll try that one out tomorrow and let you know.

The big exercise for today will be grocery shopping this evening.  We need fresh food.  There is half a lettuce and two carrots left in the fridge and I really feel like a big salad for dinner.  Even though we really only need to go to the fruit and vegetable section, I think I'll need to go down as many of the aisles as I can because I need to know if I can get any further than I did last time.  I think that I'll still take the wheelie walker in case I need a seat.  There are some seats in the centre of the complex, outside of the supermarket, so maybe I could take my crutches.  The crutches are definitely more comfortable to walk with but I'm not sure on this one.  I might have a chat to my husband and see what he thinks.  As in, if we take both and I use my crutches and I think I need the wheelie walker will you go downstairs and get it?  or can we take both and you push the wheelie walker until I need it? Not sure how this will go down.  It's worth a shot though, right?  If I'm not completely wrecked by the time we get home, I'll update this post.

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!

Take Charge

I came across this article that was posted on the Arthritis Queensland twitter account:
Health system failing people with arthritis

The article talks about people suffering with arthritis due to the condition not being diagnosed in a timely manner and consequently the patient not being treated appropriately.  The full report that the article references is located here.

Whilst I understand how this happens, people need to realise that they need to be their own advocates and if they aren't happy with a brush off or the answer that they have been given they are entitled to seek a second opinion and a third, a fourth or however many it takes to get an answer.

Doctors are human too and can't possibly know everything about everything.  If you don't like to question your doctor, you don't have to.  Find another one.  You don't even have to tell the doctor that you are going to get another opinion.  They don't need to know.  If you go to a doctor that you don't gel with (or flat out hate which has actually happened to me once), just don't go back, no explanation is required, chances are they won't even follow up with you to ask why you didn't come back.  I have tried out lots of doctors of all kinds and the ones I never went back to never called me to find out why I didn't go back.

If your GP suggests that it might be arthritis and sends you off to a rheumatologist, you don't even have to settle for the first one that you see.  Get information, ask other health professionals, talk to the Arthritis foundation and see if they have any information days coming up (like this one next Saturday in Brisbane).  Find someone that you think you can work with, someone that you can trust, someone with whom you can have open discussion with.

This is the information age.  There is a wealth of information out there. Be educated.  Understand what quality information is and don't assume that if it is published that it is true.  I'm not suggesting diagnosis by Google but be aware and understand the process, the tests, the diagnosis, the medication and self management so that you can live the best possible life that you can.

Surgeon Advice for Surgery Prep

I found this linked off a discussion board where a number of contributors have great things to say about Dr Gross.    He looks to have done quite a lot of these, having started with the resurfacing procedure in 1989 which seems to be well before it became reasonably commonplace.  [Side note: The first I heard about resurfacing was in 2002 from a rheumatologist who I saw very briefly (as I really didn't like the guy), though he didn't really understand the procedure and its benefits enough to answer any questions or be humble enough to recommend that I speak to a surgeon if I really want my questions answered.  At that time I was pretty much running away from surgery anyway as I'd just started down a new physio path that was making such a huge difference.  (Anyway - based on the conversations with my surgeon, there is no chance I would have been a resurfacing candidate then anyway due to my bone quality)]

Anyway, back to Dr Gross, he actually has some prep advice that was missing from the material that I have brought home about my procedure.  Check it out here: http://www.grossortho.com/hipinfo10.htm
Some of it is pretty common sense and ties in nicely with the program that I have made up myself with the help of the professionals that I have been working with for a while now.

The recovery worksheets are interesting as well.  Though different surgeons recommend slightly different paths, the information is comprehensive and certainly interesting reading.  The exercises that are in the phase two are of more interest to me.  I understand that you need to start out slow and not overdo it and have to follow the instructions given to you by the surgeon.  The fact that you could end up in phase two at six weeks is pretty amazing.  The slower path might drive me crazy and I hope that I am in a rapid path plan.  I guess it will be a wait and see type of thing.