Has anyone heard of this type of surgery?

[rubyred]

Hi all,

I realise that this isn't a HR question, so please feel free to move to a more appropriate forum if there is one.

As some of you might know, I suffer badly with hip dysplasia, i'm only 31 so a replacement isn't an option and Mr Treacy is reluctant to perform a BHR on me just yet.

He has suggested an operation where my hip is 'turned around' and re-moulded somewhat so that it fits into the socket better.

I've been trying to find information on it, but as I don't know the technical name, i've no idea what i'm searching for!

Has anyone heard of this type of surgery before?

Many thanks
Michelle x

[Dannywayoflife]

I think I know what you mean. Who will your surgeon be?

[rubyred]

Hi Danny

If it goes ahead, then it'll be a Mr. O'Hara. Don't know anything about him other than that Mr Treacy rates him.

[Spanielsal]

Hi Michelle,

I have dysplasia too and i had a resurfacing in 2003 , i think it's a PAO periacetabular osteotomy which i haven't had but if you are on Facebook i'd recommend joining the adult hip dysplasia group: here's their blurb below

there is also a great book about dysplasia just come out.  there is a lot of information and support as everyone has dysplasia on there. you are not alone!  there is also a yahoo group called Hip women.  almost all the info i've heard is positive about the outcomes but it is quite a long recovery.  happy to chat anytime if it would help. Sal

"Hip dysplasia is a condition where the head of the femur (the thigh bone) only loosely or partially fits into the acetabulum (concave socket in the pelvis) and the femoral head or acetabulum is misshapen, causing abnormal wear and tear within the joint as it moves.

I have started this group for anyone who has been diagnosed with Congenital/ Developement Dysplastic Hips and are considering, going into, or recovering from surgery. I have gathered info about treatment and support - please help us gather more! Most important, please come share your experiences! "

i

[Dannywayoflife]

Michelle,
           I met Mr O hara on the ward while I was in hospital. I had already heard of him prior. He is an excellent surgeon! And is highly experienced in all hip surgery. You are very lucky to have him as your surgeon. I know Mr Treacy thinks very highly of him and that alone says a lot.

[Spanielsal]

Dear Michelle, i'm sorry i was in a rush last night so didn't answer this properly, i've read through your threads this morning and cannot believe that i'd missed a fellow dysplasia sufferer on this site.  i was considering leaving the site as i've got resurfacing envy! 

first thing i have to say is you are a complete trojan - reading what you have been going through made me feel very emotional and relive some of my past but you are suffering much more than i did.  firstly i would say that whether or not you have OA you are in considerable and life changing pain.  something needs to be done urgently.  this was my view when i was in your position and i begged and begged to have the operation and I was lucky, my surgeon performed it and it was miraculous.  secondly,I didn't have a PAO, i refused one as i thought it was a huge surgery which delays replacement, i might be wrong as I'm not an experienced person and all the girls on the dysplasia site seem to have had them and they are reporting massive improvements.  the total expert on dysplasia and PAO's seems to be Mr Johann Witt at UCH, and this is the name i keep being told.  Surely through choose and book you could see him for a second opinion?
www . uclh.org/OurServices/Consultants/Pages/MrJohanWitt . aspx   

it is all about the surgeon as you will know from this site.  I have had a similar experience with surgeon's recently, Mr McMinn looked at my Xrays and refused to see me.  I think that it is a dysplasia thing, my Xrays and MRI didn't show up at all how much pain i was in and i had to get my husband to speak for me to tell the surgeon that i needed surgery.  no-one cannot function so long in so much pain. 31 is not too young for any kind of surgery whether it is resurfacing or THR, 31 is too young to be wasting your life in pain, you only get one, Michelle.

I'm a bit further down the road than you but back in pain again, my xrays look fine, but i'm in pain all the time. it is not as bad as last time but i'm not waiting that long as i was practically suicidal with pain last time. i can't drive as it is my braking leg which we kind of need!  i couldn't hold down a job and need a lot of help at home. i am going to ask for surgery again.  My quality of life is too important to let go of.  It is unlikely that i'm going to get a resurfacing this time, Mr McMinn was my only hope and if he won't see me despite reporting debilitating pain then I'm going to be forced into a THR if i get anything. 

i really feel for you,Michelle, believe me i've been there when you can't do anything and you just feel lost, but keep going when you've come out the other side of what ever surgery you get offered, then you will get it all back and life will be really good.  do join the FB dysplasia group, there are so many girls on there who could really help you. 

good luck,  Sal

[Spanielsal]

if PAO isn't the right one, reading your first post again, it may be a femoral osteotomy where they realign the femoral head.

[Pat Walter]

Sal

Can't you, within your system, ask to see a different surgeon like Mr. Treacy.  It is not unusual to ask 3 or 4 top hip resurfacing surgeons their opinons and have them disagree.  Also Dr. De Smet of Belgium will give you a free email consult if you send him a message about your problem and a copy of your x-rays in a digital format as a .jpg    I don't know if I mentioned it before.  Maybe getting some more input would help.  Dr. De Smet does some of the most diffiuclt hip surgeries in the world.  Mr. Treacy is another.  Just a thought.

Pat

[rubyred]

Dear Michelle, i'm sorry i was in a rush last night so didn't answer this properly, i've read through your threads this morning and cannot believe that i'd missed a fellow dysplasia sufferer on this site.  i was considering leaving the site as i've got resurfacing envy! 

first thing i have to say is you are a complete trojan - reading what you have been going through made me feel very emotional and relive some of my past but you are suffering much more than i did.  firstly i would say that whether or not you have OA you are in considerable and life changing pain.  something needs to be done urgently.  this was my view when i was in your position and i begged and begged to have the operation and I was lucky, my surgeon performed it and it was miraculous.  secondly,I didn't have a PAO, i refused one as i thought it was a huge surgery which delays replacement, i might be wrong as I'm not an experienced person and all the girls on the dysplasia site seem to have had them and they are reporting massive improvements.  the total expert on dysplasia and PAO's seems to be Mr Johann Witt at UCH, and this is the name i keep being told.  Surely through choose and book you could see him for a second opinion?
www . uclh.org/OurServices/Consultants/Pages/MrJohanWitt . aspx   

it is all about the surgeon as you will know from this site.  I have had a similar experience with surgeon's recently, Mr McMinn looked at my Xrays and refused to see me.  I think that it is a dysplasia thing, my Xrays and MRI didn't show up at all how much pain i was in and i had to get my husband to speak for me to tell the surgeon that i needed surgery.  no-one cannot function so long in so much pain. 31 is not too young for any kind of surgery whether it is resurfacing or THR, 31 is too young to be wasting your life in pain, you only get one, Michelle.

I'm a bit further down the road than you but back in pain again, my xrays look fine, but i'm in pain all the time. it is not as bad as last time but i'm not waiting that long as i was practically suicidal with pain last time. i can't drive as it is my braking leg which we kind of need!  i couldn't hold down a job and need a lot of help at home. i am going to ask for surgery again.  My quality of life is too important to let go of.  It is unlikely that i'm going to get a resurfacing this time, Mr McMinn was my only hope and if he won't see me despite reporting debilitating pain then I'm going to be forced into a THR if i get anything. 

i really feel for you,Michelle, believe me i've been there when you can't do anything and you just feel lost, but keep going when you've come out the other side of what ever surgery you get offered, then you will get it all back and life will be really good.  do join the FB dysplasia group, there are so many girls on there who could really help you. 

good luck,  Sal

Hello Sal,

Firstly thank you so much for you reply. It's nice to find a fellow Dysplasia sufferer. Someone who can relate to the pain when there's seemingly no help available.

It's been a rough year or so for me. Around the Summer last year I was at my absolutely worst. Mentally and physically. Been told by my previous surgeon who performed an unsucessful arthroscopy, to just 'not do anything that aggrivates it' then being discharged despite sobbing with pain in front of him did nothing to help my mental anguish. I never felt more alone with my condition then at that point.

It was then I found this site, and discovered Mr Treacy who although he himself is unable to perform a HR on me, although he did say that if nothing else works and i'm still in the same amount of pain he'll be left with no choice, but he's not just leaving me. He's looking into other options and other surgeons and for that alone I couldn't be more thankful. To have someone say, 'Yes, you're in pain and you're too young to be like this and we'll find some way of helping you' was all I needed to hear.

I attend a chiropractor regularly and he has helped tremendously.  I was doubtful at first, but i'm glad I had the treatment. We're at a stage now where we can't go any further due to the cysts, but my pain is less and i'm not taking as much medication.

Sadly i'm not on FB anymore, but i'm always looking for Dysplasia groups to join.

I really recommend asking to be referred to Mr Treacy in Birmingham. A truly wonderful man who will be truthful and if he thinks he can help, he will, and if he can't he will find someone who can.

x

[Spanielsal]

Hi there both Pat and Michelle. Firstly for Michelle there is a study being done on dysplasia by the university of Cardiff's Dr Tina Gambling GamblingT S at cardiff.ac.u k and if you want to take part you just need to email her. Sadly there is a commonality between dysplasia sufferers experiences, despite sometimes incredible pain surgeons won't do anything. It does make me envious reading posts where someone else doesn't have much pain but their OA shows up and surgeons advise having it done, don't get me wrong, I 'm happy for them, just wish it was me, particularly when it is the same surgeon who refused to even see me!  I'm off for another consult in may. I'm quite complex with both dysplasia and pain in my resurfacing which may or may not be referred together with suspected metal allergies. Perhaps just a bash on the head might suffice!  I'd like a new resurfacing but doubt I'll get one. Most surgeons are refusing women never mind dysplasia sufferers who statistically are more likely to fail. Id much rather have my bone saved for a 9 year period even if failure at that time is considered bad than have a THR and lose my rom and have restrictions but the njr stats have put most surgeons off. Sorry for he moan, feeling very down. Good luck Michelle, the study is well worth doing it will help raise awareness of the condition and create a measuring tool to categorise patients more successfully. Cheers, Sal

[Dannywayoflife]

Sal if I were you I would be asking fir a refferal to Mr Treacy in Birmingham. I've said it before I'll say it again he's the most experienced man on the planet at resurfacing and deals with mega complex cases. Ruby is sure glad she went to see him I'm sure he would help you also. Hreally is a caring man which is unusual in surgeons. I believe that's why he still works on the NHS because he enjoys helping people. He could quite easily make a living just doijn private work but he chooses to work on the NHS also.

[rubyred]

Hi there both Pat and Michelle. Firstly for Michelle there is a study being done on dysplasia by the university of Cardiff's Dr Tina Gambling GamblingT S at cardiff.ac.u k and if you want to take part you just need to email her. Sadly there is a commonality between dysplasia sufferers experiences, despite sometimes incredible pain surgeons won't do anything. It does make me envious reading posts where someone else doesn't have much pain but their OA shows up and surgeons advise having it done, don't get me wrong, I 'm happy for them, just wish it was me, particularly when it is the same surgeon who refused to even see me!  I'm off for another consult in may. I'm quite complex with both dysplasia and pain in my resurfacing which may or may not be referred together with suspected metal allergies. Perhaps just a bash on the head might suffice!  I'd like a new resurfacing but doubt I'll get one. Most surgeons are refusing women never mind dysplasia sufferers who statistically are more likely to fail. Id much rather have my bone saved for a 9 year period even if failure at that time is considered bad than have a THR and lose my rom and have restrictions but the njr stats have put most surgeons off. Sorry for he moan, feeling very down. Good luck Michelle, the study is well worth doing it will help raise awareness of the condition and create a measuring tool to categorise patients more successfully. Cheers, Sal

Please don't give up Sal. I was so close to doing that as I literally couldn't take much more. My job was at risk cos of the amount of time I had off with pain, I lost my relationship because of the insecurities I've gained through this condition - it's near enough ruined my life. But i'm getting help now, from one of the best hip surgeons in the world and like Danny said, very caring and really takes time to understand you as an individual.

I thought it would be so hard getting to see him, but Choose and Book is a wonderful thing! Danny is right. I am so thankful to have him on my side and fighting for me.

[Spanielsal]

Hi Danny and Ruby,
I feel really bad moaning at you, Ruby, I'm not in your situation now, I remember it well but I was lucky, Mr Villar fixed me in 2003. I swore I wouldn't let the right hip get as bad and it's not, currently. I'm more restricted because of living rurally and the necessity of my right leg for driving - I have been caught out driving back with severe pain making operating the brake difficult so stopped driving distances over 10 mins drive.  But restricting my activities, getting lots of help with stuff means my pain levels are lower, between 3-7 on my pain scale. Doing more shoots them up but I'm lucky to be able to do that. You sound in a really bad place and my heart goes out to you. I'm so glad you've got Mr Treacy on your side but do push for the resurfacing rather than an osteotomy if your bone shapes are ok for that. It was amazing for me.

I'll try to get referred once I've seen mr Porter. The trouble is that NHS scotland are separate, to go out of scotland on the NHS you need a board level decision. and your GP really needs to fight for you. Because of all the moving with my husbands job we' only just settled down and bought our forever house.  my gps dont really know me snd have been less than helpful with referring as they think I'm being difficult. I've always dealt with any one of them in the past before I deteriorated to this level. Then I wasn't driving at all due to high pain so tried to deal with them by telephone or email, I'm going in to see the one who best understands me and hopefully she'll fight my corner. Best chance of seeing mr treacy would be private as am self funding my consultations to get the right guy. Sorry Ruby I've hijacked your thread but I guess it's about the same idea. Surgeons won't do a resurfacing on a dysplasia patient because the OA is not apparent but they will offer osteotomy, radical surgery to reshape which seems daft to me as the resurfacing was miraculous for mending me - although everone is different especially dysplasia hips, all shapes and sizes! Good luck Ruby and thanks, I'll try Mr Treacy. Sal

[rubyred]

Hi Danny and Ruby,
I feel really bad moaning at you, Ruby, I'm not in your situation now, I remember it well but I was lucky, Mr Villar fixed me in 2003. I swore I wouldn't let the right hip get as bad and it's not, currently. I'm more restricted because of living rurally and the necessity of my right leg for driving - I have been caught out driving back with severe pain making operating the brake difficult so stopped driving distances over 10 mins drive.  But restricting my activities, getting lots of help with stuff means my pain levels are lower, between 3-7 on my pain scale. Doing more shoots them up but I'm lucky to be able to do that. You sound in a really bad place and my heart goes out to you. I'm so glad you've got Mr Treacy on your side but do push for the resurfacing rather than an osteotomy if your bone shapes are ok for that. It was amazing for me.

I'll try to get referred once I've seen mr Porter. The trouble is that NHS scotland are separate, to go out of scotland on the NHS you need a board level decision. and your GP really needs to fight for you. Because of all the moving with my husbands job we' only just settled down and bought our forever house.  my gps dont really know me snd have been less than helpful with referring as they think I'm being difficult. I've always dealt with any one of them in the past before I deteriorated to this level. Then I wasn't driving at all due to high pain so tried to deal with them by telephone or email, I'm going in to see the one who best understands me and hopefully she'll fight my corner. Best chance of seeing mr treacy would be private as am self funding my consultations to get the right guy. Sorry Ruby I've hijacked your thread but I guess it's about the same idea. Surgeons won't do a resurfacing on a dysplasia patient because the OA is not apparent but they will offer osteotomy, radical surgery to reshape which seems daft to me as the resurfacing was miraculous for mending me - although everone is different especially dysplasia hips, all shapes and sizes! Good luck Ruby and thanks, I'll try Mr Treacy. Sal

I had no idea you lived in Scotland. In that case i'm not sure what the rules are when it comes to referrals, but please don't give up. We don't deserve to be in this pain.

And don't worry about hijacking the thread, it's all the same condition and we all want to help where we can. I really would love resurfacing, but Mr Treacy has all but said no at the moment.

It's interesting you said you had surgery done by Richard Villar. That was another surgeon that Mrt Treacy brought up for me. He said that if Mr Bache refuses to perform an arthroscopy then Mr Villar definately will, but I cannot afford to go privately. But to be honest, I really do not want another arthroscopy I've had one and it failed - I had literally no pain relief from it and was in hospital 1 week for nothing.

Sal, please feel free to contact me at any time. I'm always available for a chat and would love to help if I can.

[Spanielsal]

thanks Ruby, well you and Danny will be proud of me - i'v booked an appointment with Mr Treacy!  i'm not that confident whether or not he'll agree to operate on me but without going i'll never know.  Hubby is taking a day off to take me down and help put my case forward so here goes.... i'll keep you posted.

Ruby, Mr Villar was great, but i'm with you, i'd never have another arthroscopy as I don't know what contortions i performed in surgery but my hips and muscles took 3-4 months to recover and it was keyhole surgery.  minimal benefit really as i recovered to pre arthroscopy state after 3 months.  that said, i did gain some mobility back later in 99 but whether or not that was due to the new drugs i was taking or the arthroscopy i'll never know.  i managed to push through and have two children before having the resurfacing. the techniques will have moved on a lot since then too so maybe it wouldn't be so bad.  i just can't afford the time being off for 3-4 months to effectively move no further forward.  my family needs me fit and needs me now, i hate being a non contributor and having my kids run around after me and i can't get them to their activities and the whole family has cut down their stuff because of me.  i reckon i've got 10 years left of them at home, statistically 10 years before menopause and all it's delights and i just want to be there and not miss it all.  so poor Mr Treacy may have me on my knees begging him to fix me. 

let me know how you get on. i can't believe that they'd offer an osteotomy of any variety rather than resurfacing. how many years did they say the osteotomy would buy you?

thanks for all your support, sorry again for going on... but will keep you posted. Sal

[Dannywayoflife]

That's good news Sal! I'm sure he will be able to do something for you.

[rubyred]

thanks Ruby, well you and Danny will be proud of me - i'v booked an appointment with Mr Treacy!  i'm not that confident whether or not he'll agree to operate on me but without going i'll never know.  Hubby is taking a day off to take me down and help put my case forward so here goes.... i'll keep you posted.

Ruby, Mr Villar was great, but i'm with you, i'd never have another arthroscopy as I don't know what contortions i performed in surgery but my hips and muscles took 3-4 months to recover and it was keyhole surgery.  minimal benefit really as i recovered to pre arthroscopy state after 3 months.  that said, i did gain some mobility back later in 99 but whether or not that was due to the new drugs i was taking or the arthroscopy i'll never know.  i managed to push through and have two children before having the resurfacing. the techniques will have moved on a lot since then too so maybe it wouldn't be so bad.  i just can't afford the time being off for 3-4 months to effectively move no further forward.  my family needs me fit and needs me now, i hate being a non contributor and having my kids run around after me and i can't get them to their activities and the whole family has cut down their stuff because of me.  i reckon i've got 10 years left of them at home, statistically 10 years before menopause and all it's delights and i just want to be there and not miss it all.  so poor Mr Treacy may have me on my knees begging him to fix me. 

let me know how you get on. i can't believe that they'd offer an osteotomy of any variety rather than resurfacing. how many years did they say the osteotomy would buy you?

thanks for all your support, sorry again for going on... but will keep you posted. Sal

I'm so happy you're seeing Mr Treacy! You're going to be in very good hands. And don't worry about the begging. On my first appointment I went in there with a walking cane and sobbed my eyes out in front of him, begging him to help. I'm sure he's seen and heard it all!

I'm with you on the arthroscopy's. I was definately left in a worst state than I was before the surgery.

[rubyred]

Update:


I am now a patient of Mr Bache in Birmingham. I was referred to him by Mr Treacy and I had my first appointment with him this morning.

A further arthroscopy is out of the question for me, my problem is mechanical therefore a wash out would be of no benefit whatsoever. He could perform a POA on me however my age is running against me (i'm 31). It all depends on how my cartilage is and he's sending me for a CT scan to assess this. If the answer is no then pretty much i'm stuck like this until my hip gives out and I'll need to have a replacement.

I can't believe that if a POA is out of the question, i'm stuck like this with this level of pain  

[Spanielsal]

Hang in there Ruby, they can't just leave you like this. The osteotomy is very significant surgery but will make your sockets normal. Once you have grown the extra bone, you will be in a better position for your whole future. From the hip women stories (yahoo group'which you can join and be sent all the emails then chime in if you want to) it seems like a horrible first few weeks then quite a long slow recovery but there are girls who've had it done and are back running! There's several blogs available, I'll try and find a link for you. Some of them are over 40 just having it done. So your ge isnt necessarily a factor. Both Marcus Bankes and Johann Witt do it on the NHS too i think. I haven't heard of any of the girls using Mr Bache but perhaps have not been paying close enough attention!  I was just like you in 2003, but i guess i was lucky that Mr Villar decided to go ahead. the trouble is that the national joint registry shows the figures and on that basis collective decisions are being made BUT, the NJR figures are all surgeons and all devices! That means that the figures are skewed and don't reflect the successes accurately. I haven't been to see Mr Treacy yet. I'm figuring that he'll repeat to me what he's said to you because my X-rays don't show the problems up. Am still waiting for MRI results and the surgeon I've been to to get back to me. His secretary is pretty cold and unhelpful on the phone, she hasn't shown him my stuff yet despite having it since 17th May and sounded affronted that I might wish to arrange a date for a follow up conversation. I'm almost resigned to the fact that if I get any surgical help which is most certainly not guaranteed, it will be a THR, at best a mini hip.  I'll go to see mr Treacy once I have the new results but my metal sensitivity will exclude a bhr anyway. Good luck with the CT scan, keep us posted! Xx

[rubyred]

Thanks Sal.

The thing is I think that if a PAO is out of the question, I will be left like this The only thing Mr Treacy said when I asked him if a BHR or a THR was in my future, he said that if a patient comes to him in that much pain and all other options have been ruled out then it leaves him no choice.

Mr Bache said to me this morning that Mr Treacy is an 'agressive surgeon' in the sense that he'll treat pretty much anyone so if he tells you no then you know that it's truly in your best interests.

I guess it's back to waiting for the CT scan. Mr Bache says he gets his best results from a Osteotomy in younger patients, he's treated someone of 40 successfully but once you hit 30 then the success rates start to drop off.