dandy_candi
senior
AustraliaHi,
I have been reading posts on your forum for a while now and am ready up post my story.
I am actually in tears now after reading through post-op stories. I am in tears because I can't imagine that being me, and not having hip pain, and what change it could mean for me.
I'll start at the beginning- I am 28 and was diagnosed with Rheumatoid Arthritis at 12 years old, so 16 years now.
It affects most major joints in my body, and some joints I didn't even know about until they start to hurt and I find out what they are! (Constantly learning). Main joints that are affected are hips, knees and ankles (and all the small bones of my feet).
I was encouraged by my children's hospital rheumy to continue with the sports I enjoyed when I was a teenager so played tennis, swimming, basketball and various others (I didn't stick long at each). The one sport I have always loved is waterskiing, which I have done since I was 7. That is one thing I have recently (reluctantly) had to give up. It's hard because my husbands family ski race and I have to be around other people skiing and it's the one thing I truly miss that I physically cannot do anymore due up the RA. I still watch and try and get enjoyment out of my family enjoying themselves. That feeling of being on the water is indescribable though.
I have not had any surgeries but have had steroid injections into multiple joints. Most recently I have had steroids into my Sacroilliac joints. Although RA doesn't tend to affect these joints, I believe it is my poor posture caused by my hips that is putting impact onto my SI joints which become unbearably painful.
I feel quite restricted by my joint pain and can't do a lot of what I would like to do but I try and stay positive and enjoy what I can do. I got married 2 years ago and my husband is really great and supportive but also keeps me in check when I start beating myself up or doing too much.
We ended up having a 2 year engagement rather than a 3 year because my physio thought my ankles weren't doing well and I might need surgery and I wanted to be able to walk down the aisle. I was able to walk down the aisle, and although it was a short ceremony because I can't stand for long, we had a wonderful day.
So I have a great Physio who used to be a nurse and is really informative. I have been seeing him for 5 years now. My rheumatologist (rheumy) isn't overly proactive but I've had worse so I stick with her for medication (I need to see her to get my medication approved by the government every 6 months because of the expense of the medication).
My physio was telling me for a long time I had terrible ROM in my hips so I had some X-rays done last year. He said that based on the X-rays I require a hip replacement. He went on to say that because of my age, surgeons would likely push the surgery as late as possible for longevity of implant. I was so shocked that i actually needed surgery but then the thought of having to go on in pain because of my age was really upsetting.
I was scared of surgery and started researching and watching videos (a bit full on but I needed to see them- the computer generated ones were easier to watch ). I had my second steroid injection into my SI joints within 12 months and decided I wanted to see a surgeon. My physio recommended one who has a particular interest in young people, and I called up and was surprised when it was only two months to get in to see him.
So the two months dragged but finally came up last week. I am in central Victoria and the surgeon was in Melbourne so I made a day of it and went to IKEA with my mum and mother-In-law. We got stuck at ikea and then traffic and I was so worried I would miss the appointment and not get in for another 6 months. But I Called up and only 5 mins late I got in to the office. The surgeon's name is John O'Donnell and I found him to be really lovely. He said I was lucky to get in to see him and there must have been confusion when I booked but I was there now so he answered all my questions. I actually had my questions answered and fears allayed in the first answer he gave. He said You don't have to be a certain age, crawling down the hallway in severe pain or have multiple scans showing serious damage to have a replacement. He said from my X-rays there was significant joint space narrowing but all the scans won't show the level of pain and impact on MY life. I was floored. I didn't know what to say. He said I can just book In when it suited me. (I have private health insurance).
He also explained that joints now have a long life and I asked about having multiple revisions and if there would be compromise on the bone but he said bone is actually quite easy to re-grow from grafts so that doesn't tend to be an issue. I kept feeling like I had to defend my position because I expected the opposite reaction.
The wait time to book in is 8-12 months but if I get to the time and decide it's not time I can just move the date.
So now it's just up to me to decide when! Reading all of your posts on how liberating THR has been I am excited!! I know I still have the ankle and knee joints to contend with but who knows the extent my hips are impacting on these joints and they may improve with THR.
Sorry for the Marathon post but I just needed to get it all out there!!
Smiles from Aus
I have been reading posts on your forum for a while now and am ready up post my story.
I am actually in tears now after reading through post-op stories. I am in tears because I can't imagine that being me, and not having hip pain, and what change it could mean for me.
I'll start at the beginning- I am 28 and was diagnosed with Rheumatoid Arthritis at 12 years old, so 16 years now.
It affects most major joints in my body, and some joints I didn't even know about until they start to hurt and I find out what they are! (Constantly learning). Main joints that are affected are hips, knees and ankles (and all the small bones of my feet).
I was encouraged by my children's hospital rheumy to continue with the sports I enjoyed when I was a teenager so played tennis, swimming, basketball and various others (I didn't stick long at each). The one sport I have always loved is waterskiing, which I have done since I was 7. That is one thing I have recently (reluctantly) had to give up. It's hard because my husbands family ski race and I have to be around other people skiing and it's the one thing I truly miss that I physically cannot do anymore due up the RA. I still watch and try and get enjoyment out of my family enjoying themselves. That feeling of being on the water is indescribable though.
I have not had any surgeries but have had steroid injections into multiple joints. Most recently I have had steroids into my Sacroilliac joints. Although RA doesn't tend to affect these joints, I believe it is my poor posture caused by my hips that is putting impact onto my SI joints which become unbearably painful.
I feel quite restricted by my joint pain and can't do a lot of what I would like to do but I try and stay positive and enjoy what I can do. I got married 2 years ago and my husband is really great and supportive but also keeps me in check when I start beating myself up or doing too much.
We ended up having a 2 year engagement rather than a 3 year because my physio thought my ankles weren't doing well and I might need surgery and I wanted to be able to walk down the aisle. I was able to walk down the aisle, and although it was a short ceremony because I can't stand for long, we had a wonderful day.
So I have a great Physio who used to be a nurse and is really informative. I have been seeing him for 5 years now. My rheumatologist (rheumy) isn't overly proactive but I've had worse so I stick with her for medication (I need to see her to get my medication approved by the government every 6 months because of the expense of the medication).
My physio was telling me for a long time I had terrible ROM in my hips so I had some X-rays done last year. He said that based on the X-rays I require a hip replacement. He went on to say that because of my age, surgeons would likely push the surgery as late as possible for longevity of implant. I was so shocked that i actually needed surgery but then the thought of having to go on in pain because of my age was really upsetting.
I was scared of surgery and started researching and watching videos (a bit full on but I needed to see them- the computer generated ones were easier to watch ). I had my second steroid injection into my SI joints within 12 months and decided I wanted to see a surgeon. My physio recommended one who has a particular interest in young people, and I called up and was surprised when it was only two months to get in to see him.
So the two months dragged but finally came up last week. I am in central Victoria and the surgeon was in Melbourne so I made a day of it and went to IKEA with my mum and mother-In-law. We got stuck at ikea and then traffic and I was so worried I would miss the appointment and not get in for another 6 months. But I Called up and only 5 mins late I got in to the office. The surgeon's name is John O'Donnell and I found him to be really lovely. He said I was lucky to get in to see him and there must have been confusion when I booked but I was there now so he answered all my questions. I actually had my questions answered and fears allayed in the first answer he gave. He said You don't have to be a certain age, crawling down the hallway in severe pain or have multiple scans showing serious damage to have a replacement. He said from my X-rays there was significant joint space narrowing but all the scans won't show the level of pain and impact on MY life. I was floored. I didn't know what to say. He said I can just book In when it suited me. (I have private health insurance).
He also explained that joints now have a long life and I asked about having multiple revisions and if there would be compromise on the bone but he said bone is actually quite easy to re-grow from grafts so that doesn't tend to be an issue. I kept feeling like I had to defend my position because I expected the opposite reaction.
The wait time to book in is 8-12 months but if I get to the time and decide it's not time I can just move the date.
So now it's just up to me to decide when! Reading all of your posts on how liberating THR has been I am excited!! I know I still have the ankle and knee joints to contend with but who knows the extent my hips are impacting on these joints and they may improve with THR.
Sorry for the Marathon post but I just needed to get it all out there!!
Smiles from Aus
) and I found that all the "little things" about surgery and recovery were addressed here rather than with medical staff. Not that I didn't LOVE my OS, he's great 
- so down to earth... so Aussie!! The current thinking here in Australia re QUALITY of life rather than chronological age being the primary deciding factor to proceed with surgery is something I am very grateful for... my surgeon(s) - long story - both agreed that when hip pain is impacting badly on your life THAT is the time to do a THR; the benefits to your overall health outweigh the disadvantages of having it early. 
I can't believe how much better they are AND on reduced meds!! I feel better generally too (and emotionally) too as having less pain is GOOD, increased mobility equates to increased participation in "life" (the ol' ABC; Act -be active, Belong, Commit, eh?!) It really has made a big difference and you won't regret the decision (okay, at some point in the recovery you WILL ask, why the hell did I do this to myself... but then you'll remember the "before" picture of your life and you'll have your answer!)
️
) but - like you - I had my share of bad doctors and the last one just happened to be in the Private sector, as in he ONLY did work in the Private sector.
but what I have discovered is (with Elective, as in planned, surgery) that I had my choice of Doctors... all the way through (some, a VERY few, only work in Private hospitals; they were not available to me, but I literally had the choice of hundreds!) I saw an OS in Emergency (I had a fall), he didn't do THR so suggested I see his practice partner - who just happened to be my sister's OS at the time, so I was happy to see him. I liked him, liked the way he thought about the whole thing and trusted his judgement.. very important in this "game".
in fact I'm now in a bit of a quandary for hip 2; do I go to OS1 who I really like but don't know what his surgery is like, knowing that I can have the surgery in the hospital I had the first one in - which was excellent, or do I wait until David comes back from HIS Fellowship early next year and find out that he'll only do surgery in the hospital close to HIS rooms... a brand new hospital I don't have any experience with and a lot further from home... I'm sure I won't get David AND my lovely local hospital; I just ain't that lucky 
) and was taken to the nearest Emergency Dept, we thought that as he had top table Private cover he would be able to move to a Private hospital closer to home (and his then-10-week-old twins!!) to recuperate from that first surgery - but NO, once you are under a surgical team's care that's where you stay. He ended up having four surgeries, losing his Great toe and it's neighbour... spending 4 weeks in that hospital, Public and crappy; not like the one close to us AT ALL. All he got extra for going in as a Private patient was a daily newspaper and a parking permit for his wife!! Lesson learned... "choice of Doctor" is NOT a guarantee Private Health or not. It IS part of the advertising for Private funds, but not totally accurate... who knew they embellish the truth!! Matt's still got Top private cover, don't worry he's had his money's worth with those twins 
you're still young enough to get a LOT out of it even if you wait a while to get those ducks in a row
