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The Hip Talk Discussion Forum was hacked a few weeks back. It has taken me a long time to fix it. The only backup I could use was way back to April 2020. All members and posts up to that date are available. Anything newer has been lost. I am sorry, but that has been the only way to get things up and running again.

Author Topic: I think you guys are all awesome  (Read 11071 times)

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Anna

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I think you guys are all awesome
« on: May 29, 2012, 11:38:14 PM »
Hello everyone.

Im a newbie on here. Im 29 and was born with hip dysplasia. This was not diagnosed until 6 years ago .... and its been a long painful 6 years since. I used to be extremely active ... running, horse riding, skiing, mountaineering (Anything that involved being outside and a bit of adrenaline really!) but ive had to give it all up due to the pain in my hips. I took up cycling and mountain biking last year in the hope that it would enable me to get back into the countryside and it has. I am now completely addicted to my bikes and I am grateful that something good has come from all of this! Unfortunately though in the last 6 months, everyday life has become unbearable and its looking like the time is fast approaching to cross the line and become a surface hippy. I had my first consultation with the surgeon last week.

Ive been really struggling to get my head around all of this lately. Being 29, all my friends are very active and through no fault of their own, just dont understand why I cant do the things they do and just dont get how painful it can be. (I actually think they feel im a big wimp and need to get a grip!) Due to this, Ive stopped going on group holidays, avoided weekends away, shopping trips etc as I know it annoys people because I cant keep up with them. I feel noone quite understands ..... until I stumbled accross you guys. Surface hippies  8) Ive been reading your stories over the past month and can relate to so much. You really have inspired me and given me a little hope back. ... and some of the information I have gathered from this site has been great. So, I just wanted to say a big thank you.

I think you guys are all awesome.

Anna  ;D
RTHR - 08/08/2013 -Mr johan witt, London

imgetinold

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Re: I think you guys are all awesome
« Reply #1 on: May 29, 2012, 11:52:10 PM »
Welcome, Anna.  You've come to the right place.  I do think it is hard for others to understand......particularly folks so young.  Even those who understand the pain often don't understand the anguish and indecisiveness that comes with having a huge procedure like this.

Where are you?  Who's your surgeon?  I'm sure you've read it already, but make sure your surgeon is very experienced.....particularly since you have the added difficulty level of hip dysplasia.

Anyway, good luck as you go through this journey.  We'll all be here for you.

-Andy
Andy - Right Biomet uncemented HR with Dr. Gross on 1/11/2012......GO BOILERS!

Pat Walter

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Re: I think you guys are all awesome
« Reply #2 on: May 29, 2012, 11:55:46 PM »
Hi Anna
I am glad you found my website and I hope everyone here in the discussion group will give you support.  We all have or had bad hips and know what pain and inactivity means.  You are correct, that at any age, people don't understand until they have been bone on bone or had hip problems as you do.  We understand and will be happy to help with any questions.

Keep a positive attitude, ask questions and look for answers - you will get your life back on track.

Pat
Webmaster/Owner of Surface Hippy
3/15/06 LBHR De Smet

Anna

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Re: I think you guys are all awesome
« Reply #3 on: May 30, 2012, 12:29:05 AM »
Andy - Im in York, England. I have read about the importance of a good surgeon which is what worries me at present. I wasnt too impressed by mine at my first consultation and cannot find anything out about his back ground on the internet. Im on the NHS which means I cant really choose my surgeon however I can try get referred to someone else. I have heard good things about Mr Nargol and his team who are not too far away from me so I am going to try and get referred to them (fingers crossed!)

Pat - You have done a great job. Thankyou so much for your encouragement and positive words  ;D
RTHR - 08/08/2013 -Mr johan witt, London

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #4 on: May 30, 2012, 07:27:10 AM »
Hay Anna welcome and wow! The world is a small place! there are now a few members on here from York! As I'm sure your aware cases with dysplasia are more difficult to do so go to the best surgeon you can find. Which device is Mr Nargol now using as I know he switched to the doomed ASR and had a lot of failures as a result.
I was 28 at the time of my op and am now approaching 7 months and doing well so you can get your life back on track!
Pm me if I can help on anyway!
Danny
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

Anna

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Re: I think you guys are all awesome
« Reply #5 on: May 30, 2012, 08:09:26 AM »
Hi Danny,

Well I didnt realise York had so many people with wobbly hips! Id love to meet some of them. Im not sure what Mr Nargol is using at the minuite (I guess thats more research for me to do!) I just know I need to shop around a bit and ask lots of questions. Im really not happy with the surgeon I have been referred to so I dont think I will let him go ahead  :'(

Were you on the NHS Danny, or private? Im glad you are doing so well  ;D

Anna
RTHR - 08/08/2013 -Mr johan witt, London

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #6 on: May 30, 2012, 08:19:17 AM »
I lived in York for 17 years and now live in sussex but my parents still live there and i come home regularly! :)
I did a mix and match o private and NHS because of the dificulties i encounted with the referral process with my stupid GP! I had my op on the NHS. If your not set on a surgeon then i would strongly recomend asking to be referred to Mr Treacy at the ROH in birmingham. He's the co designer of the bhr and has done more BHR's than anyone else in the world and is truley a world leader in this surgery.
Danny
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

Spanielsal

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Re: I think you guys are all awesome
« Reply #7 on: May 30, 2012, 08:22:38 AM »
Hi Anna

Welcome, nice to meet you but sorry that you've had to find us!!  i also have dysplasia and wish i'd had this website when i first got diagnosed (WAY back in 96/97) there is also a facebook group Adult Hip Dysplasia where you can find lots of girls going through ups and downs with our condition and lots of support.  I'm no expert and am just feeling my way as many of us are but here are some things that i've heard and digested: as far as surgeons are concerned, i've heard great things about Jon Conroy in Harrogate and of course there is Ronan Treacy in Birmingham who does resurfacings on the NHS and you should be able to choose and book but one problem with Dysplasia is that you can often get very high pain levels with little visible sign of arthritis, without the signs of arthritis you can have problems having resurfacing or replacement offered, only corrective surgery. Depending on your grade of Dysplasia you can be offered different options.  I think mine is quite mild as i have a third of my femoral head outside of the acetabulum, i've seen much worse sockets! Specialist dysplasia surgeons seem to be few and far between but Johann Witt and Marcus Bankes in London are mentioned a lot, they do many PAO's re shaping the socket in the hip and giving lots of the girls several pain free years before going to THR.   try and use choose and book codes to see someone on the NHS who knows what is going on with your hip.  the best thing you could do is to ring up some of the surgeon's secretaries, they will help you understand whether you could see that surgeon, the best way to go about it and what your options might be.  I found Mr Witt's secretary to be lovely.  He's at UCH. there is also a book on Adult Hip Dysplasia - on Amazon - it's quite expensive and does look at the PAO a lot but i found it useful and interesting.  I'd also sit down with your GP once you've got more information under your belt, chances are that you are his/her only Dysplasia patient and that they don't know a huge amount about it.  good luck, i'd advise you to do your research and be your own advocate.  you can have second opinions on the NHS, i'm sure.  take care and hang in there.  PM me if i can help in any way.  Sal
I'm a Hippy Hybrid!  L HR Cormet 2000 - Mr Villar, 12th June 2003 and R Corin mini hip - Mr Villar 7th August 2012

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #8 on: May 30, 2012, 08:35:05 AM »
Mr Conroy is an excellent arthroscopy surgeon but when he did mine was very much a thr man when it came to bionic implants. As Sal says sometimes dysplasia causes pain without arthritis. However if there is OA present in your joint space i would stand by the Ronan Treacy recomendation simply because hes so so experienced and can and has tackled the most complex cases with success.
I actually had a touch of dysplasia as my sockets are both very shallow.
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

Anna

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Re: I think you guys are all awesome
« Reply #9 on: May 30, 2012, 10:42:29 AM »
Thanks guys. It seems I have alot more research to do than what I first thought!!!!!! I had best get started and im pretty sure I will be firing questions at you all left right and centre ... beware!  ;D
RTHR - 08/08/2013 -Mr johan witt, London

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #10 on: May 30, 2012, 10:55:41 AM »
Fire away Anna ;D
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

morph

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Re: I think you guys are all awesome
« Reply #11 on: May 30, 2012, 11:31:17 AM »
Hi Anna,

I researched the NorthEast of England. Mr Nargol is experienced and was closest to where my parents live but I did not get a response from an email. I think it was him who first highlighted the problem with the ASR device. Mr Jim Holland is my surgeon in Newcastle, he was recommended to me from another experienced surgeon and is listed on this site under the UK section. He has done ~1000 BHR's and about 3000 THR's to date and he has told me over a 10yr study of his HR patients there have been no major problems (there are a few papers you can google). I go in for my op a week tomorrow (7th June).

Sound advice from Danny with Treacy, he is the most experienced and one the world experts.

It might be worth trying to email them direct to check that they are prepared to do HR for Women, I am sure I read somewhere Nargol does not, but do not quote me on that.
« Last Edit: May 30, 2012, 12:31:06 PM by morph »
LBHR - 58mm ball, 64mm cup
7th June 2012 - Mr J P Holland - Newcastle

Anna

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Re: I think you guys are all awesome
« Reply #12 on: May 30, 2012, 01:05:20 PM »
Hmmmm, not many surgeons seem to want to resurface womens hips  :'(

I have heard of Jim Holland. Good luck for the 7th June Morph. I hope everything goes perfect for you x
RTHR - 08/08/2013 -Mr johan witt, London

Woodstock Hippy

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Re: I think you guys are all awesome
« Reply #13 on: May 30, 2012, 01:32:26 PM »
Welcome aboard, Anna.  It seems that you have your work cut out for you to get to the right surgeon, but it is very important that you do.  This surgery, by the right doctor is like a miracle.  We all were like you, avoiding the activities we love but, I've got to say that right now 6 1/2 months after bilateral surgery I am feeling pretty awesome.  I'm working out religiously and shopping for a triathlon bike for the sport I loved but had to give up three years ago.  Look at yesterday's workouts, just to show how far I've come:

35 minutes stretching and core

42 minutes running (unknown pace in the woods)

35 minute swim

60 minute mountain bike

Thank you for the compliment in your title and I do feel that way.  Once you get through this, you will feel awesome too!
Bilateral, Dr Scott Marwin, NYU Joint Disease Hosp, 11/15/11

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #14 on: May 30, 2012, 01:39:57 PM »
Hmmmm, not many surgeons seem to want to resurface womens hips  :'(

I have heard of Jim Holland. Good luck for the 7th June Morph. I hope everything goes perfect for you x
That's because it's even harder to place the device accurately in women than men. So most will just tell you that it's no good for women.
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

lori.36

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Re: I think you guys are all awesome
« Reply #15 on: May 30, 2012, 02:58:32 PM »
Anna,  Welcome to surface hippy.  I know what you mean that no one understands the pain, my huband did not understand.  He did not understand until the pain was so bad that I would cry at night, then he agreed that I needed surgery.  It was a big leap of faith, but I did it and I am 100% satisfied with my choice. 
My surgeon also does not like to do women, because of the lower sucess rate, but I still meet with him.  He wanted to see what size device I would be and I was just at the cutoff for him.  I had full faith in my surgeon and he has done tremednous work on many people. 
There are some women on this board and it is owned by a Woman, Pat.  Funny both hip resurfacing sites are ran by women, I would say the HR is for women too.  Find the right surgeon.  I would definately try to get Dr Tracey if he is not that far away.
Lori
L-BHR 5-11-2011 Dr Rector
R-HR 9-11-2015 Dr Gross

hernanu

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Re: I think you guys are all awesome
« Reply #16 on: May 30, 2012, 04:16:07 PM »
Hi Anna and welcome. You've gotten some great advice, the thing I would add is that in your research, rely on the hippys that have gone before you, especially in dealing with the NHS.

This surgery, when done right can really get you back on track; you deserve the best you can get. Several people fought hard with their insurance providers to get placed with the best surgeon possible, and you have some of the best in the UK. As you can see with Danny and others, younger hippys can make a good recovery and go on with a happy life.

Keep going, keep in touch and use all of the resources that Pat has made available.
Hernan, LHR 8/24/2010, RHR 11/29/2010 - Cormet, Dr. Snyder

Mike D

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Re: I think you guys are all awesome
« Reply #17 on: May 30, 2012, 06:16:01 PM »
Hi Anna, I'm also in York, (Huntington) and I'm waiting to have surgery with Mr Treacy in Birmingham sometime in the next two months.
I had the same problem as Danny where the NHS messed up my referral so I paid to see Mr Treacy privately, and he then referred me to him on NHS from York.
Probably the best 150 I'll ever spend.
When I found out I needed a new hip, I was told most people choose the hospital because of  the location and ease of car parking,etc!
I couldn't believe it-it's so important to get an experienced surgeon.
It's only 2 hrs on a train to Birmingham, then 30 mins on a bus that stops right outside the Royal Orthopaedic Hospital and you can see one of the very best surgeons in the world.
Who ever you choose, good luck and I look forward to reading of your progress, Cheers,Mike.
Right Ceramic THR
Ronan Treacy   Birmingham R.O.H
8 August 2012

rubyred

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Re: I think you guys are all awesome
« Reply #18 on: May 30, 2012, 07:11:42 PM »
Hi Anna,

I'm a Dysplasia sufferer too. I'm 31 and wasn't diagnosed until I was 29! I've been in constant pain for 3 years.

You should know that under the NHS it's the patients choice whom they see and where, so if you were willing to travel to see Mr Treacy for example then there shouldn't be any problems in getting referred to him. Maybe this depends on your local PCT. I'm in Essex and thought I would struggle getting to see Mr Treacy, but I had my appointment through within the month.

x
LBHR - 9th August 2012 - Mr R. Treacy

Welcome back to life.

Dannywayoflife

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Re: I think you guys are all awesome
« Reply #19 on: May 30, 2012, 07:15:20 PM »
Hay mike,
               We actually drive from north of York in like 3hrs. It's only 160miles and to see one of the best in the world I thought that was a small price to pay!
Mike/Anna I'm coming back up to York in July if either of you wanted to meet up?
Train hard fight easy
LBHR 10/11/2011 Mr Ronan Treacy Birmingham England
60mm cup 54mm head
Rbhr 54mm head 60mm cup 12/02/15 Ronan Treacy ROH Birmingham England
;)

 

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