Not such a happy bunny today - NHS / Dysplasia advice.

[Anna]

Hi guys,

I know this isnt much of a resurfacing topic and probably not very relevant to this site but I was hoping perhaps some of my new friends that have been following my story may be able to offer some advice or opinions ...

As you all know, I have dysplasia in both my hips but my right is giving me excrutiating pain and has artiritis in it. I went to see Mr Treacy 2 1/2 moths ago on 11th June to see if I was suitable for a resurfacing. He said no due to my femours being too straight and all the angles in my joints being wrong. He said there would be two options for me ... 1. A THR or 2. A PAO (In short, this basically involves breaking my pelvis and realigning it so the socket covers more of my femoral head which will slow down the artiritis) Now, a PAO would probably be a better option because I get to keep my natural hip for longer however this would only be sucessful if my hip doesnt have much artiritis present. So Mr T referred me to see his collegue Mr O'Hara to see if a PAO was possible before giving in to a THR.

As far as I am aware there are not too many surgeons in the UK who do PAO's. Ive been waiting 2 1/2 months now for an appointment with Mr O'Hara at Birmingham ROH so decided to give them a ring today to see what was going on. It seems Mr O'Hara is recovering from surgery himself and will not be back at work till november / december time, hense why I have no appointment. I am little upset about this to say the least as I just feel like ive wasted 2 1/2 months (And it was nice of them to tell me!) and now have to wait another 4 months just to get an appointment. His secretary said that they would refer me to another hip surgeon at the ROH however the only other one who specialises in Dysplasia is leaving. Im kinda thinking whats the point then?!!!!!!!!!!!!!!!!!!!!! So now im in line and waiting for an appointment to see a normal hip surgeon who doesnt do PAO's ... or I can wait to se Mr O'Hara in 4 months time.

Anyone any idea what I should do? I feel like im just going round and round in circles here and im getting so fed up now. Being on the NHS, im not sure if I just have to go through the motions and see where they send me or whether I can just say I want to be referred to Mr Witt in London. Sal? Ruby? Im thinking perhaps you will know a little more about all this?

Feeling sad,

Anna 

[Mike D]

Hi Anna
I read that a couple of times and came to the same conclusion both times.
1. Somebody has to give you a definate answer about the level of OA so you know which route to go.
   If PAO is an option, someone has to tell you very soon, NOT months ahead.
2. Insist to see Mr Witt in London. Sounds like you're confident about him, so is it an option to Pay to see him privately then get referred back to NHS from him?
This way saves you lots of time.

I think you have to have something definate very soon.
I emailed Mr Treacy about my device yesterday and got a reply within hours from his secretary.
The only email I had for him was the private one at Edgebaston, but they sent me his NHS details to contact him.
Go 'on a mission' about this now Anna, don't stop untill you get answers.
Good luck, Mike.

[Anna]

Thanks Mike,

Ive just calmed down now from my 30 min strop and thought exactly the same about your option number 2. Im gonna look into doing what I did with Mr T, do a little research and try book a private appointment with one of the top POA / dysplasia surgeons in London. Get a definate opinion from them and then take it from there. All I need is a dfinatele Yes or no for the POA (which im pretty confident is gonna be a no!) Then I can wait to see who I get referred to at the ROH and tell them to crack on with the THR. I cant wait another 4 months. Its rediculous.

On a mission,

Anna

[Dannywayoflife]

Just typical of the stupid NHS!!!!!!!!!!!!!! Thats just totally unacceptable!!!!
Right if i were you hun id chase down the possiblity of the PAO. That is a more conservative operation than THR so if possible that should be tried first.
Failing that then id just ask for Mr T to give you and all singing all dancing gucci THR. XXXX

[Spanielsal]

Anna, sweetie, huge huge hugs. Can't believe thy left you hanging on so long. The two most recommended hip dysplasia surgeons are: Marcus Bankes and Johann Witt. I have two suggestions for you.

1) You could ring their secretaries and explain the situation, ask them to look at your X-rays to see if you are indeed a PAO candidate, if so please put you on the list for an appointment.
2) ring Mr Treacy's office and ask to see him again and forget the whole PAO thing.

From what you say, part of your issue is straight femurs. Will you be looking at an femoral osteotomy and pelvic osteotomy at the same time?

Id also ask the hip dysplasia girls, there's a whole lot of experience out there, they'll give you the names and tel no's you need for Mr Witt and Bankes secretaries.  You could also do what someone else did (Danny?) pay for a private consultation to establish facts then refer on to the NHS for treatment.

What do you think?

Big love,

Sal

[rubyred]

What a waste of your time, Anna I knew there had to be some reason for your wait as the ROH is so fast with it's turnaround appointment time.

For me personally, if my only 2 options were a PAO or a THR, I'd go with the THR. With a PAO you're just delaying the envitable. Mr Bache went through the PAO with me in great detail and it's not a pleasant procedure and in my case, which I suspect will be same with you as we have similiar conditions, I would end up needed a THR anyway. It's the nature of Dysplasia, it's a progressive disease. However Mr T told me when we were discussing my options of a BHR or THR that due to our ages I'd need to be brought back in every so often for a re-do with a THR....

I think it comes down to whether you want to wait it out with your natural hip and see if a PAO is possible with two of the London surgeons - the names escape me now but Sal will know, or be pain free with a THR and have to pop back in however many years to get it re-done. One things for sure I would only have gone with a PAO if the success rate was VERY high. Going through such an evasive procedure for only a 50% chance of success (which was my percentage) was just not worth it.

Dysplasia is a complete pain in the arse. Such a complex disease in adulthood and from my experience not many surgeons know what is the best way forward with it.

[Mike D]

Whatever decision you come to Anna, take charge of your treatment as fully as you can.
I think you've done as I did early on and had faith in the system, letting the natural process of appointments, referrals, etc take their course and wait your turn because thats what we do.
I got to a point with Clifton Park where I had zero confidence with anything they said.
One afternoon, a really nice lady on the reception desk kept other people waiting while she followed up my lack of progress'
 I thought, "At last, someone here who seems to care and is grabbing hold of the problem"
It made no difference, there was no call back that day or the next,as promised.
That's when I totally lost faith in our system and decided I was the only person  who could make a difference at that stage.

What about your GP? You had a lot of help there the other day. Any more they can do for you?
Keep pushing Anna.

[Spanielsal]

I was writing, fielding calls and visitors all at once so didn't read the three above mine until after I'd posted, sorry.  Mike, I resaid pretty much what you'd said, sorry. Anna, Mike Danny and Ruby are all correct. Particularly Ruby when she mentions the recovery from a PAO. It's really tough, I've read some stories (I think I pm'd you annick's blog address) which would make your hair stand on end. It is a12 month recovery,  anything from 8-12 weeks on crutches and strictly 20% weight bearing. Not something to head for unless your sure you'll get good benefit from.  Mr T will help, I'm sure. Xxxx

[rubyred]

I was writing, fielding calls and visitors all at once so didn't read the three above mine until after I'd posted, sorry.  Mike, I resaid pretty much what you'd said, sorry. Anna, Mike Danny and Ruby are all correct. Particularly Ruby when she mentions the recovery from a PAO. It's really tough, I've read some stories (I think I pm'd you annick's blog address) which would make your hair stand on end. It is a12 month recovery,  anything from 8-12 weeks on crutches and strictly 20% weight bearing. Not something to head for unless your sure you'll get good benefit from.  Mr T will help, I'm sure. Xxxx

Yep. It isn't pleasant by all accounts. Mr Bache went into great detail at my request so that I could make the appropriate decision for my situation. As it turned out it wasn't suitable for me really anyway, but it needs to be 110% worth going through all of that for.

[Anna]

Thanks guys for your views and help. Its so frustrating. I think I have just lost all hope and faith in the NHS today.

I wonder whether it is Mr Bache who is leaving the ROH Ruby. Mr O'Hara's secretary said that there was one more surgeon who did PAO's however he is leaving soon so there would be no point in me seeing him.

I really dont know what to do anymore. December is a long wait but at the same time, by the time ive managed to get referred to see anyone else ... it will probably be december anyway! Im gonna do some research over the next few days, maybe send a few emais off and get in touch with my GP again. I was pleased when I rang today that the secretary told me she had just recieved a letter from my GP asking what was going on. What a good man my GP is! I still have faith in him so thats one good thing knowing hes behind me!

My back has also given way today so Im really struggling to walk now. What a rubbish day. 

[Spanielsal]

  can you have a warm bath and a hot toddy?

Xx

[rubyred]

It could well be Mr Bache who's leaving then as I think Mr T mentioned that it was only him and Mr OH who did PAO's....

Keep the faith Anna. I remember the dark periods like this before I found Mr T. I felt like no one, or nothing would help me and I'd be stuck with OA for years before someone would do anything.

You have my number, use and abuse it hun - day or night - if you ever need a friendly ear xx

[Anna]

I have my microwave cow Sal. He still loves me! My back has been a little dodgy since I moved house the other week and I think today its just had enough 

It does sometimes feel like noone wants to help. I was just thinking whether it would be really cheeky to email Mr Witt and Mr Bankes and attach my xrays and just ask them what they thought. Maybe just explain the circumstances and that ive been passed from pillar to post and ask if its worth me getting referred or not. I feel like im pretty low now and dont really have anything to lose by doing this!

Thanks again guys. x

[rubyred]

Do it Anna. Why not? What have you got to lose at this stage?? xx

[Anna]

Right, its done. Lets see I get any kind of reply. 

[bilateralbliss]

Hi Anna, sorry you had such a bad day. As Ruby and others said just push and go for it!! I had no idea about POA. Just a thought, try Sarah Muhair Attwood ( unsure of exact spelling) saw a post somewhere on here the other day, will hunt it out for you, she`s based in London too.
Pester til you hear anyway, they won`t forget you then!! xx

[bilateralbliss]

SARAH MUIRHEAD

Allwood Royal National Orthopaedic Hospital, London
 
WHAT THEY SAY ABOUT HER: She replaced the Queen Mother's hip 20 years ago and probably does more hip replacements than anyone else in the country.


Read more: http://www.dailymail.co.uk/health/article-1303615/Britains-surgeons-hip-replacement-surgery--voted-specialists-themselves.html#ixzz24FCwCgX0

[bilateralbliss]

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Miss Muirhead-Allwood
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Miss SK Muirhead-Allwood


Sarah Muirhead-Allwood

Sarah Muirhead-Allwood qualified in medicine from St Thomas' Hospital in London. Her postgraduate surgical and orthopaedic training were at St Thomas' Hospital, University College Hospital and the Royal National Orthopaedic Hospital. She was appointed as a Consultant orthopaedic surgeon at the Whittington Hospital in London and the Royal Northern Hospital in 1984. The same year she was also appointed as Honorary Senior Clinical Lecturer at University College London. In 1991 she was appointed as a Consultant at the Royal National Orthopaedic Hospital, where she still works.

Although Miss Muirhead-Allwood was initially appointed as a general orthopaedic surgeon at the Whittington Hospital, she soon specialised in hip surgery. For the last ten years Miss Muirhead-Allwood has exclusively performed primary and revision hip surgery, and lectures on these procedures all over the world. She is a member of the British, European and International Hip Societies.

Miss Muirhead-Allwood set up the London Hip Unit in 2002 to provide a fully supported specialised service for adults with hip problems.









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[Anna]

Thanks Sara, another one for me to look into there    x x

[Anna]

Mr witt has replied to my email!! I'm in a state of shock. He seems a very nice man.
He has basically said that he believes my right hip needs a thr as the arthritis is too bad but also believes I should have a PAO on my left to 'save it'. He's confirmed exactly what I was thinking.
He's told me to try get referred to him.... that's the difficult bit though!! X