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Pain for four years now..

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terri1986

new member
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Jul 30, 2008
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United Kingdom
Hi everyone,

I am a 22 year old female, I was born with fetal rotational hips which did not correct itself like so many other cases do. I also developed perthes disease, but I was waiting for a new consultant as the consultant that I had been seeing had left, so it was undiagnosed till it had nearly healed up so I had no treatment for it apart from traction when the pain got too bad, every month I was in hospital. I had to have three operations for the fetal rotational hips because they did not correct themselves, I was told if I did not have the operations I would not be able to walk without aid by the time I was 18. I had pins and plates inserted into both hips and then the third operation to remove them. After the operation I was told I would not be in any pain and that I may need a hip replacement later on in life and that I will get arthritis as my family has a long line of severe arthritis.

When I was 18 years old, I was very active went to the gym worked 12 hours to save for college and everything was going well. I started college and that is when the pain started. At that time it was difficult to walk to the shop which was 10 minutes away without feeling pain. I went to the doctor told him my history and was basically told to live with it. So I did. As time went on the pain and flare ups have been getting worse, I had intense pain on my right side that put me in hospital as I was throwing up I told them it was my legs and they dismissed me and after a week I was discharged with the doctors saying it was in my mind. I never felt so low, so I got on with it went to university.

In the last year it has gotten much worse I am in constant pain and I can not walk far, I visited a new doctor after having seeing numerous doctors and he referred me to a consultant. I saw the consultant and he said for me to have an MRI and that he was sure that it could be cured by physio. My pain is in my groin, knee, buttock and lately my shoulder and neck (buttock, neck and shoulder pain the consultant thinks that it is due to my realignment of my back from limping.)

When I had my MRI it hurt so much and I am now waiting for results. I can't do anything, I cant walk far, I failed my second year too through having so much time off. I dont know how long I can stand to be in this pain, do I qualify for a hip replacement?

Terri
 
Terri,

I feel so bad for you, but you are not the only one here who has been told some pain was all in your head. But, being so sick and in the hospital, that is aweful.
We do have other young people your age on this site and our wonderful nurse ,Josephine,who I am sure will answer you soon.
Good Luck
Judy
 
Terri,

I was born with hip dysplasia. It was treated, but still had some problems with the left hip that started bothering me when I was a few years older than you. I was blown off by the first ortho MD (Mad Doctor?!) I saw, so I figured I was on my own. I just had my left hip replaced 3 weeks ago @ age 47. I'm glad I did my research & was able to choose the best OS for me.

Please keep reading the posts here. I have found it to be a great support system. I don't know about the UK's medical system other than Michael Moore's movie "Sicko," but there are a number of people here from the UK who can share their experiences.

Best Wishes,
Joyce
 
Thankyou for replying, it is disheartening when doctors tell you that it is in your head. I'm going through a flare up right now and trying to sleep is a nightmare! rejoyce318 how did you find the operation? I take painkillers every single day and they do not help and I cant turn myself over in bed, I have to get my partner to which is humiliating.

I just want it all to go away to be honest, but it just gets worse, just seem to be a bit down at the moment! I'm usually bubbly! I have been waiting four weeks to get a letter through for an appointment since the MRI for my results, but I'm going to chase them up tomorrow!
 
Teri, tell me whereabouts you live and I will recommend a specialist hospital that will help you. (I also live in the UK!)
 
Ah! The good old Edith Cavell! The surgeons there are the ones from Addenbrooks. They are usually pretty good. Addenbrooks had a good rep in it's day.

I found this list for you. Keene and Owen seem to be the hip chaps. All you need to do is ask your GP for a referral and he/she will see to it.
 
Thankyou Josephine, I will look at the list, my consultant is Dr Lewis but I used to see Dr Dutta very nice men! Having a hard time controlling my pain levels at the moment. The changes they are making to Edith Cavell are quite amazing but its a shame the District is closing.
 
Terri,
Please let us know how things go with your surgical referrals.

What I did (in the States) was to find out who the hip specialists were, find who was on my list of in-network ("approved") surgeons, then asked around, mentioning the names I was considering. I was surprised at how many young-ish people had had THRs. Fortunately, the OS for whom I had the most positive gut reaction was also the one most highly recommended.

I learned to be courageous & assertive about asking questions of the OS. For example, "How soon can I drive?" "Can I drive to the Shore? (3 wks post-op)" and the Most Important Question: "Can you correct my LLD?" I also learned to be assertive & persistent with the insurance company!

I hope this helps, Terri. "Take what you need, & leave the rest."

Joyce
 
Hi teri,
I am so sorry for all the pain your going through and that alone can mess up your dailey life for sure.
But this is why boards like this are just wonderful to help others. And look, Josephine is able to direct you. (((I love the boards help))) Good luck to you and let us know.
 
There is a BIG difference between nice and competent, Terri. What kind of consultants are these men? What is their speciality?


When you do get to a decent surgeon, be careful you ask him all the questions in this post
How to choose a surgeon and a prosthesis . Don't be shy about it either. He won't mind a bit. In fact he will be impressed that you are so prepared.
 
Thankyou everyone for your replies, I will keep everyone up to date. Josephine I have rang doctor keene and I'm hoping for a speedy referral and hopefully the MRI results should be mailed to him *fingers crossed*.

I had to ring my consultant at Edith Cavell well his secretary, to say that I have been waiting for four weeks for an appointment discussing my results and they said they will get back to me. They were not helpful at all, I'm starting to think after all this time there are no nice doctors.
 
Dear Terri

You really need to be firm with the doctors and make sure you are getting the best and the right treatment for you. I know its hard but your health depends on it and you are so young to be suffering. Let Josephine guide you and take in everyones advice and comments so when you meet with the doctors you have everything you want answered written down it is their job, and although with medicine nothing is ever 100% you will have a greater knowledge of your options and will be able to decide what is right for you. Try and make sure whoever you see has experience of younger patients with a history of problems because some doctors don't.

I am 35 yrs old and had left THR 13 days ago the arthritis pain has gone and each day gets better.

I really hope you can find an experienced surgeon then i am sure you will get the help you deserve.

Good luck Tracey
 
Tracey,
how are you doing? I was hoping to find you. How did everything go? Did you end up with ceramic on ceramic? I am new to this place, but have been reading lots of the older threads. I am 29 and preparing for left THR in the fall. Still undecided, just too many things had gone wrong before.
I was born with a dislocated hip, and had several different procedures. At one point they cut off the top of my femoral head, so not much of a good joint there. Now I have quite bit of pain (lots of pain on bad days), I have 16 month old daughter and I can't keep up with her. I also walk with a cane, and I could use that arm for other things... not to mention pride is hurting too... May I ask what your history was again? Few people I talked to are recommending metal on metal instead of ceramic.

Thank you, Lidia
 
Hi everyone, sorry for the late reply, I have got my appointment through for next week! really quick for the NHS, makes me wonder what they have found, I'm hoping they have found something. Has anyone else had this with the NHS?
 
It's the standard now, Terri. Must be seen within 6 weeks. Government guidelines. Failure to comply results in a hefty fine! And under the circs, they would have fast-tracked you through. Jolly good!
 
thankyou Josephine I did not know that! feeling quite anxious about the appointment now and I have no idea why, just want the pain to go away and to do the things that I used to do and to improve my quality of life.
 
Expectations, honey - and will they be met. Will they get me sorted out - that kind of thing! Felt it myself on numerous occasions and so has everyone else here! Eh, guys?
 
Hiya Terry
Sounds sily to say but do not be to anxious,I live on The Isle Of Wight and have been totally amazed at the speed of my first op in Feb,which alas has not worked but the odds against it were explained totally when it was done,as it was more a buying time for my knee thena cure,after a lot of physio and hydro and another Mri it was decided a Knee replacement was the route to take ,this was end of July,first op was to have been the 18th August,but my os is on holiday,and as I do not want anybody else to do it,it has been put off until Sept 9th,which again I have been amazed at the speed of,I know our Nhs gets a lot of bad press,but we are very lucky,and hopefully for you it is your young age which they are looking at to get you back out there enjoying life as you should be.....
Best of luck with your appointment,this really is a great site for finding a lot of positive people,I felt I was to young to need a new knee at 42,but after a lot of ggod people told me how there lives had improved,you realise its all for your own good.and a painfree lifestle
Good luck and keep in touch
Nin
 
Oh yes! I forgot that bit!When I had patients come into theatre and shyly confess they were nervous-through-terrified (as if they were the ONLY person in the whole wide world that felt that way) "well, think of it this way - you'd have to be some kind of weirdo to actually be looking forward to this!"

Actually, there's a name for something like that - Münchhausen's syndrome!
 
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