Monday, April 7, 2014

Three Years Post-Op

Today I had my checkup with my surgeon.  I'm three years down the track and he's happy with my progress.  I don't have to go back for another two years now.

It's a great result.

It's a little weird though that something that has been so important in my life is now just a checkup every few years.  Physically it is the best possible outcome.  The journey though has taken me through some really tough times and at some level, fundamentally changed the way that I look at the world.

The main goal that I had going in was that I wanted the chronic, persistent pain to be gone.  As I read back over the blog posts, I'm sure there was more that I could say - for fear of failing.  So long as I got through and life was better than it was before - that would be a successful outcome.

And it is - and so much more.

The whole process has been a catalyst for major change in my life.

It's that turning point where I realised that there were people in my life who were only there because I could help them.  When it was my turn, they didn't like it and it caused all manner of grief.

I realised that I didn't have to live with pain.   Physical or otherwise.  While it's part of the human condition to have inner struggles, I don't think I accept my 'lot' in life as much as I used to.  I can do more - it's now my choice, I'm not as limited by these physical constraints that provided an excuse, a protection from the world.   I've struggled with depression - I've seen a few shrinks - sought out alternate therapies - found a new way.  There have been a few people in this journey who I will be forever grateful to.  They don't even know how important their role has been in sending me off in a new direction.  One day I might tell them - but for now - it's still my adventure.

All I can say is that the whole process was definitely worthwhile.  I've gotten my life back.  It's not the life I probably had planned - it could even be better.

Wednesday, November 2, 2011

Living Life

The last month has been has been really busy.  Though the improvements are still happening, life is happening as well and that has been taking up a lot more time, time that I used to use for my blog posts.

I'm still improving my ranges and I'm still expecting to exceed the surgeons six month estimate of another 10 degrees.  I'm just over halfway to that goal on the left side and the right is just under.  

I'm still keeping up with my physio, hydro and pilates and fitting in real life around these activities.  My hours at work have increased and I'm starting my study back up again at the end of the month.  I'm not sure where this is all going to lead me but wherever that is, I'm well on my way.

I probably won't be checking in here too often as time goes on but I receive comments by email so if you have any questions about any of my posts or my experiences, please comment!

Tuesday, October 4, 2011

More spam...

Apparently I need some help understanding what a hip replacement is.

I received the following comment overnight:
This is surgical procedure that replaces damaged hip joints. Generally, the damage to the hip joint is due to severe osteoarthritis or possibly necrosis (defined as death of tissue) of the hip joint.
No shit, Sherlock.

It's spam for a Las Vegas ortho centre.  Not really very appropriate.  I had kept an earlier comment from this person as they had offered encouragement as well as posting their site but following this, I got rid of both.  I have no problem with people providing comments that relate to what the post is about and linking to their website especially if they have expertise in the the area.

Comments like this show that they haven't actually read the posts properly, nor have any real respect for me or my readers.

If you want me to link to your site, please contact me and offer some content that is of benefit to my readers or actually read the posts and provide some real information that is at least interesting.  I'm interested in talking hips and I'm sure my readers are too - it's not too difficult to engage people by providing content that they actually want.  You are wasting your time telling me what a hip replacement is.

If I don't know what it is by now....

Tuesday, September 27, 2011

Another MOM bashup

Today Tonight and their 'ethical' reporting have done an article on ASR and other MOM hip replacements.  It's reminiscent of the article that ABC aired a little while ago.  They took it a step further and made it sound like all MOM devices were trouble in their usual sensationalist style.  The class action that has been launched against Du Puy is the catalyst for the article and once again, they fail to address and report any positives of MOM devices nor do they report the exceptional success rates of other MOM devices in the hands of top surgeons.

My comments on the earlier ABC article on MOM resurfacing.
McMinn addresses MOM on the resurfacing site.

I know what Today Tonight is like and I shouldn't let it bother me.  It's irresponsible reporting at it's finest and it really makes me mad.

Monday, September 19, 2011

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!

Monday, September 12, 2011

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!

Sunday, September 11, 2011

Surgical Review and Physio

Tomorrow is my next surgical review.  I'm a little nervous.  I shouldn't be as my progress has been steady and I've been doing a lot to work towards getting the most out of the surgery and I have been happy with the results so far.  I also know that I am going to get so much more out of this than I ever imagined.  It's difficult to explain why I'm nervous at all.  The closest thing I can relate it to is maybe parental approval, though that's not quite it.  Besides my surgeon is way to young for that!  If I figure it out, I'll let you know.

It will be an early start tomorrow for a work day (well for me anyway!).  I kick off at 8:30am at physio with Paul before I head in to the hospital to have xrays done in advance of my appointment.  I don't actually see the surgeon until 11:30am but I'm not sure how long it will take at xray as you just turn up and wait your turn.  It means that I'll have a new CD of images of my new parts too.  There really shouldn't be anything new to show there but it is kind of cool anyway.

This will be the first time that I've seen Paul since before the operation too.  It will be interesting to have his thoughts on the differences he sees.  He has seen me quite a bit when I have been at the clinic to see Reese and also outside of the clinic, so he has a good idea of where I'm at but treating will actually give a little bit of a different perspective.

I'll be back at Milton later in the day to get some work done and hopefully wrap a few things up that will leave me free towards the end of the week to start to get ready for my sister's wedding on Sunday afternoon.  It's going to be a great week.

What to say...

I've struggled with this post.  I've tried to write it a couple of times but the words just won't come together.  I'm at a bit of a loss to explain a negative experience that I've had and do wonder if I should just leave it be and keep going with my life as it needs to be or think about it a little longer and share it with people who might be going through something similar.

I have had a lot of really positive experiences over the past week and I do wonder if it is just the contrast that has upset me, that perhaps it wasn't such a 'big deal' and I have made it into one.  I know that I need to accept that some people just won't be able to understand what I've been through and the journey that I am still on and this ignorance isn't necessarily malicious.  It could even be argued that it's because I don't complain enough and make my limitations known more obviously that I shouldn't be hurt when they are overlooked by people that I think should know better.

I've never been comfortable complaining about the things that I can't do.  At some level, I didn't really want people to know the extent of my limitations and as such there were very few that actually knew what it really was like pre-op.  These people were limited to those that 'needed' to know.  The rest would probably knew something was going on but didn't really 'get it' and I never really elaborated.  Post-op, things have gone really well and the limitations that I had pre-op are diminishing quickly but you can't get rid of two decades worth of limitations and compensations in a couple of months.

After such an awesome week, it was a little confronting to be isolated because I still couldn't do something.   The isolation was made more difficult when I was made to feel like I was causing trouble by 'snobbing' the rest of the group.  This has been one of the lowest points I've had for quite a while, one where I felt extremely alone.  A phone call and a tweet helped me to get through the rest of the evening.  I guess that all the other unnecessary tension at the event made me a little on edge to start with and as such I was probably not quite as well prepared for criticism as I usually would be.

Some of the people that I truly expected to understand haven't.   I guess that I had higher expectations of them that were perhaps unreasonable.  

The people that have truly been there for me have been amazing.  You know who you are.  Thank you. 

Saturday, September 10, 2011

Ceramic BMHRs

The McMinn Centre has released some information about the Ceramic BMHR.  This is pretty exciting for people that have metal allergies that preclude them from being suitable candidates for the MOM BMHR or resurfacing.  I'm sure we'll see more information about this prosthesis as it becomes available!

Thursday, September 8, 2011

It's all good!

Another great day. Feeling great. Lots of sunshine.
Two in a row.