Specialists disagree - absolute agony - where to go go for the best

[Poppet]

Hi again @eira1006 - I will tag @octopus who is a Kiwi and had her THR in NZ, hopefully she will get the alert, and be able to suggest options within NZ, here is her recovery thread https://bonesmart.org/forum/threads/a-bionic-octopus.18515/

I see that @Mikeb another Kiwi has posted on your thread - any suggestions Mike?

Dr Michael O'Sullivan, Mater Hospital, Nth Sydney, has an excellent reputation. One of our members, @AussieMike wrote positive reports about Dr O'Sullivan. Here is his recovery thread to give you some background.. https://bonesmart.org/forum/threads/aussiemike-returns.16158/

I have private health insurance but can appreciate the frustration of the public system with several personal friends having to navigate their way through it with similar stories - like I wrote I sympathize and will help in any way I can.

 

[octopus]

Hi @eira1006 , so sorry to hear your story. You and your wife are having a hard time of it, it's so frustrating and distressing. I went through the public system and had to try out the injection route first, but the effect only lasted four weeks for me. On my follow up I was very lucky to land on my surgeon's list. His name is Matthew Walker. He also does private patients as well. I found him very caring and only too happy to answer the numerous questions I had. I had my THR just over a year ago and have had a good recovery and no problems. I hope you can find some help for your wife soon, this is no way to live. broken link removed: https://www.orthosurgeons.co.nz/my-practice/

 

[Poppet]

Thanks for responding so quickly my dear friend @octopus. Hugs from across the ditch.

 

[eira1006]

Thanks everyone - you are all amazing. It's just hard to keep battling every day. we had issues in another sphere of life that has taken years to battle and then we end up in this. It's just wearisome. But once again thank you for the thoughts and names and suggestions.

 

[Josephine]

the chap referring us was not fit to tie his shoelaces in regards to hip diagnosis - he taught him etc.

Oh how nice! He might think that but it's incredibly unprofessional to voice such a thought to a patient.

I don't really know how things work in New Zealand, but is it possible to enlist the help of one of your elected officials?

I am sure there is someone in New Zealand who can help - I just don't know who

I think Jamie was more thinking of a politician or minister of health, etc. I know I was.

 

[Jamie]

One other idea might be to involve your new media. At least here in America if you can get the interest of one of the "Action News Reporters" that publish or broadcast cases where individuals are wronged by someone or the government, it can bring enough attention that action is sometimes taken.

But I think you are also wise to pursue finding a surgeon that you can work with soon. That is the first priority.

 

[eira1006]

People on here are an inspiration. We are waiting for holiday season to end. - Easter and Anzac day so we can see if updated letter to admin team increased the urgency to get the public consultation asap. Will also chase down all the names given here for the pay option. So thank you to everyone who has given names and suggestions.

Other half severely demoralised and doubting herself at the moment. Then she reminds herself that taking the amount of very strong drugs she is on is not sustainable and leaves her in a haze all day - just to get to the bathroom. Then she doubts herself again as the "I've seen worse than you" conversations return to her mind. Now yet again struggling with impaction as the countless pills are not offset by the laxatives and fruit etc. She is feeling miserable because of the pain and because she has swollen so much over entire body in last 2 years and put on weight as well as being unable to do anything she did 2 years ago.

Going through your library to see what we can do whilst we are forced to wait. Found the stuff on cortisol - read so many inspiring posts also - I don't think she can buy into the two hips at once even though she is resigned to both happening as both are nearly as bad as each other in terms of pain and lack of range of movement.

 

[octopus]

Thinking of your wife & hope you hear something shortly after Anzac weekend. I hope you have a phone number to harass someone if you don't. Although my experience has been a mostly positive one, I have been missed along the way a few times, and needed to follow up with them. Let us know how you get on.


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[eira1006]

Yay !!!!! First step forward in a long time. Appointment with surgeon scheduled for mid-May.

 

[octopus]

Awesome! Not too long to wait.


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[Celle]

Hi @eira1006

I'm sorry to hear that your wife is in such pain and you are having so many problems getting something done for her.

Where in NZ do you live?
I'm in New Plymouth. My surgeon here is very good. He's the man in town that the others refer their problem patients to. When I needed a revision of my knee replacement, I asked my GP who was the best, and this is the man he recommended.

His name is Julian Stoddart. You can search for him on Google. He has a very informative web site and he is very good at listening and explaining things in terms the patient can understand. He has introduced computer-assisted joint replacements to New Plymouth. He only has private patients and he operates at Southern Cross hospital here.

I don't know if he could help you, or if you could travel here, but I thought New Plymouth might be easier than going to Australia.

 

[eira1006]

Hi all - things are getting closer as the appointment for the pre-check is happening soon - heights of furniture etc.

My poor sweet darling is getting stressed at the thought as it approaches and her pain and inability to walk has dramatically worsened but is convinced it has to happen. We had been hoping for a child before all this began but all of this is making it virtually impossible and that too is really bringing her down as the prospect fades for other reasons.

She is scared about which hip to do first - surgeon said you choose. Both are so bad but in different ways (one is constant and throbbing causing difficulty with sleep and all day long - the other is constant lower pain with frequent screaming instant pain without warning and cause her to collapse for support/relief). She is scared the surgeon will say you didn't get the result I expected from the first leg so I am not going to do the second. (She has good gaps but does have cysts, dysplasia, minor cartilage damage etc but not the classic "no gap".)

There is no consideration of a double op as the surgeon is concerned that will not be able to cope given level of meds already on. I know I could not cope with the pain or the medication regime - I would be completely incoherent screaming at everyone whilst I could not remember my name and struggle around in a haze.

As the hubby I just want to get an idea of what I can do to make things physically easier. Eg apart from getting toilet raised so no bent legs in sitting positions etc and clearing paths to and from places what else could I plan on doing now ? I am getting the cushioned shower seat installed etc and getting a new overheight toilet installed much closer to the bedroom. Our bed is quite high already so won't have to push up to walk - more like slide.

IS my car going to be a problem - She is on the shorter side (5 foot two inches) ? I have a subaru legacy wagon (liberty in Australia). I am going to try and move her to the car and experiment now on how she would get in and out without having the leg at anywhere near 45 degress. I am considering renting a suitable vehicle for the first few weeks etc to get her to rehabilitation without issue - what would someone who's been there done that suggest - have to be cars available in NZ ?

Any other things that should be obvious to me but are often overlooked ?

 

[Mikeb]

Hi I have just had my opp 30 June, now 7 weeks and healing well. The hospital will give you all that you need for home for about 10 weeks no charge. When in hospital they will ask all the measurements of bed, shower, toilet and any stairs in the house etc. As for a car well I used some padding to raise the hight. Most 4 wheel drive vehicles are quite high off the ground may be better option

 

[Jaycey]

She is scared the surgeon will say you didn't get the result I expected from the first leg so I am not going to do the second.

If she is dealing with all the issues you list, they will indeed do the second hip. It's just a matter of when. Can she get on a wait list immediately?

As the hubby I just want to get an idea of what I can do to make things physically easier.

It sounds like you have done all the preparation in terms of your environment. What a great carer you are! From my experience the best thing you can offer is understanding. All that hip pain will be gone once the op is done. Then the fun begins. The frustration that the body can't move as fast as you want it to move is major. Then there is the constant dropping things and needing someone (or something - a grabber) to pick it up. Buy several grabbers - she will need one to pick up the one she dropped.

IS my car going to be a problem

Our car has very deep bucket seats - not good for a new hippie. I bought a wedge cushion and a back support cushion. Have her sit on a plastic grocery bag so she can swivel around to get out of the car. I still use the cushions in my car!

One thing you both need to remember. This operation is not a life sentence. It's a new beginning. There is lots living to do post THR. A short space of recovery time for a lifetime of pain free living.

Please keep us updated.

 

[octopus]

Hi @eira1006 I have been off Bonesmart for a month or so, just wondering where things are at and how your wife is doing. Does she have a surgery date?

All the best.

 

[Celle]

Hi @eira1006

I'm wondering how your wife is getting on? Have you made any progress in getting an earlier appointment and surgery date?

Did you look up the surgeon in New Plymouth that I recommended? He is very good, has no "touchy" ego, and he is good at explaining everything in simple terms. He does know how to listen, too. I trust him entirely and he will be replacing my second knee next month.

This is his web site:
https://www.goodbones.net.nz/

It has good information about hip surgery.

Best wishes.