A date at last, THR here we come!

[Josephine]

only to be told by Mr Witt's secretary that you cannot have a private consultation and then go on the NHS waiting list for surgery, it's classed as queue jumping!

She obviously has her own political agenda about it! It's perfectly okay to have a primary consultation and then be referred to him as per usual. Your mistake was in speaking to his NHS secretary instead of his private one. treat the two things as totally separate and the will be no problem. I've dome it a number of times. Presently I am waiting fro an NHS appointment with a gastro-enterologist I saw privately earlier this year.

 

[Widge422]

Hi Josephine, it was his private secretary that told me that!!? Called Friday to make a private appointment but she hasn't come back to me yet. Bit annoyed as I wanted to see him this week coming!
My appointment for my MRI has come through on the NHS for 5th Oct so I'm going for that anyway. My first consultant said he'd refer me to a James Barnes after the MRI and he's in Bristol, which would be more convenient but I can't find any info on him at all (that worries me!?) and his secretary hasn't bothered to call me back either. There's so many options I don't know whether I'm coming or going! Lol
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Becki

 

[Jaycey]

Called Friday to make a private appointment but she hasn't come back to me yet.

Call her back and if you have an email address send an email. Squeaky wheel and all that. Just don't discuss any move to the NHS with her. She only sees private patients. As Jo suggests, treat the two issues separately. Once you have been assessed by Witt ask his advice on how to be referred.

My first consultant said he'd refer me to a James Barnes after the MRI and he's in Bristol, which would be more convenient but I can't find any info on him at all (that worries me!?)

To be honest I would be concerned about not finding any information as well. I did a bit of research and could not find anything on Barnes either. There are too many other surgeons out there who are supporting the National Joint Registry statistics. I would not consider a surgeon who does not.

 

[Widge422]

Thanks, I'll stick with Mr Witt and try and get an appointment tomorrow for next week, will keep you updated! Thanks for all your advice and support, it's a massive help keeping me sane at the moment!
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Becki

 

[Widge422]

Have managed to get hold of the secretary but shes a bit of a pain! Now saying that I have to pay for a disk with my X-rays on from the hospital and get that sent over and the referral letter which he'll look at and then they'll call me back with a private appointment which won't be until October anyway! I can't put up with this for much longer and don't know what to do!?
Can anybody recommend another good surgeon in UK pls??
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Becki

 

[Jaycey]

So sorry you are dealing with what appears to be a very obstructive medical secretary. I'll tag @Josephine for a surgeon recommendation. I see you are in Bristol. How far would you be prepared to travel?

 

[Widge422]

Thanks Jaycey! Having seen my doctor again this morning, she is suggesting keeping it local so transferring X-rays and such like are easier!? Would be happy to travel to London if it can be done smoothly though!
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Becki

 

[MemoPaws]

Becki
I'm interested in your post as we live in the same area. I am 57 and my dysplasia was only diagnosed 10 years ago. I was oblivious to it my whole life, but started to experience pain and 'collapsing'. I was told there was no treatment at that time but that it would get worse and I would eventually need THR. Over the last 18months it has become very painful and the impact on my day to day life is now unacceptable to me.... I want my life back! The NHS referred me for X rays, Steroid injection and physio, and eventually agreed with me that it made no difference. I am seeing a consultant tomorrow at Southmead - Evert Smith. I'm undecided about private treatment but very worried about finding someone who is sufficiently experienced with dysplasia and THR. Not sure what I will find out tomorrow but I have a long list of questions - this site has given me lots of excellent information and pointed me in the right direction. This might be a long journey......

 

[Jaycey]

@Widge422 Hi Becki, I did a bit of research for you using the National Joint Registry. I am not sure if Southmead but there are several surgeons with pretty good hip numbers consulting there.

Professor Ashley Blom
Mr Stephen Eastaugh-Waring
Mr Jason Webb

All these surgeons also have private practice locally as well.

@MemoPaws any good hip surgeon will have experience with dysplasia. If you use the National Joint Registry surgeon profile area you can find out just how much experience they have with THR.

 

[Widge422]

Hi Memopaws, thanks for getting in contact, definitely get it sorted and keep on to them, keep us all informed, this forum is amazing and so helpful, it has helped me immensely since I joined.

Hi Jaycey, great thanks, I've already seen Mr Eastaugh-Waring privately and he doesn't perform the PAO surgery, and his secretary is also Mr Blom's so I'm assuming that he doesn't do it either or Mr Eastaugh-Waring would have put me onto him. I have found Anthony Ward who apparently does do it and I am seeing him privately on 12th October 1 week after my MRI, so hopefully the results will be back.
I now have acid reflux from the Naproxin so I've stopped taking them for now, so back to hurting! Will it never end!! Grrrrr
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Becki

 

[Jaycey]

Hi Becki, what is PAO surgery?

See your GP for the acid reflux. They can give you something to counteract this symptom and protect your stomach.

 

[Widge422]

Hi Jaycey,
PAO stands for Periacetabular Osteotomy!

I have been given the tabs to counteract it but think I started taking them too late so have a couple of days of this before they kick in
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Becki

 

[Widge422]

Hi everyone! Just an update! Still waiting for MRI on 5th October but the pain has increased 10 fold and my left leg/hip is hurting loads too! Luckily the tablets to combat the stomach acid are working now but I'm taking so many painkillers I think I'd rattle if I jumped up and down! Lol
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Becki

 

[Widge422]

Have be thinking, I am in so much pain yet have no idea what the timescale is. Does anyone know when I might find out how long I will have to for surgery? I am seeing the consultant on the 12th October, I'm hoping he can tell me!?
Thank
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Becki

 

[Jaycey]

Your consultant will tell you the approximate wait time for the area. Unfortunately it may be some weeks. Many areas are no longer meeting or even trying to meet the former target of 18 weeks. I was referred to my consultant in May last year and waited until 30 September for my RTHR.

 

[Widge422]

Oh ok, thanks, I'm expecting to be told there's at least a six month waiting list. Not sure I can wait that long with the pain and a ton of painkillers which have side effects almost as bad as the pain! Lol
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Becki

 

[Widge422]

Ok! I've just had the worst 24 hours ever! Was prescribed Tramadol about 14 days ago, was told they might make me feel 'weird' and I could 'mix & match' with my other pain meds!? pain still bad, been on to docs everyday, spoke to another dr yesterday, he told me to take paracetamol with the Tramadol, (the Tramadol alone makes me feel very dizzy and tired). Tried both yesterday, 2 doses and thought I had overdosed! I was dizzy, sick, shaking, hot and cold sweats and to top it off only managed 1 hours sleep! Found on Internet Tramadol is potentially an addictive opiate, I was never told this by the doctor, all the symptoms I was feeling people were describing as withdrawal symptoms! Not sure if mixing them with paracetamol had caused some problem with me!?

Got up this morning and pain is unbearable, can't walk up and down stairs, can't get in car without physically lifting my leg, driving is excruciating. Got to work, broke down, my own doctor rang me and said I need to go back on the co-codomol as they are not a narcotic and give my system time to adjust, have now signed myself off work for the rest of the week and have brought my MRI forward to this Monday, people are saying maybe I should go to A&E???

Thanks for reading, I know I go on a bit!!
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Becki

 

[grin and bear it]

Oh Becki
I'm sorry that you are having a rough time. Your worry about taking so many meds is very familiar to me and I have tried quite a few over the years to keep it at bay. Nothing really takes it away but takes it down a notch and makes things bearable. NASADS generally make me feel sick as a dog Diclofenac has helped me with the pain but just makes me feel really ill and my doctor won't prescribe it for me as she says it is not for long term use. Naxaproxen again made me feel ill and didn't give any relief. Tramadol is another my doctor won't give me for long term use so I don't know about that. The best I have is a combination of 400g ibupropen and two co-codamol (30/500) that I take a lot of and of course the stomach tablet (that is a bother as you have to take it half an hour before the pain relief but has to be done) This combo subdues things enough so I can function much better.The trouble with meds is they take a good half an hour to kick in and then start wearing off in the last hour so you are really only having about a good 3hrs effective control in the 4 hr window. But my best advice for dealing with chronic pain is to find something that absorbs your attention fully to push the pain to the back burner. Its just a mind trick but it does help. Some sort of craft that you have to use your concentration (books no matter how good don't work for me) knitting works but it has to be a difficult pattern maybe a crossword etc' You have to be able to loose yourself or it won't work. I expect you are thinking is she mad? but you are still new to dealing with pain and after a while your tolerance will get better and you will learn how best to deal with it and manage your symptoms what helps /what doesn't. Hang in there

@MemoPaws How did you get on?? your story struck a cord with me I feel like I am 5 years behind you I just don't think I can do another 5 like this so I am hoping they have finally agreed to let you have a new hip? Do you have arthritis now?

 

[copsham]

Hi @Widge422
I have just been catching up on your thread. What a lot you are going through. I had hip replacement in Jan this year, followed by a fall and lisfranc foot surgery so completely different from you. But my thoughts are;

• When you see the surgeon ask about how long you will be non weight bearing after the op as preparing for this is important
• Before the op if at all possible strengthen your arms and upper body as this really helps in getting around when non weight bearing, helps manoeuvring on off the bed, using crutches and generally doing some of the work that your leg would have done!
• A Pain clinic suggested to another Bonesmart member to take 500mg of vitamin C a day to assist with the pain relief.
• One suggestion from this site was to write down all the ways your life is affected by the hip and by the pain, from little things to huge things, ranging from difficulty using the toilet to loosing your job. This puts it in perspective in preparation for your appointment.

Good luck with your appointment, a first step to a brighter future!

 

[Widge422]

@grinandbearit, thank you, I have started watching some of my favourite tv programs and catching up on what I've missed! You are right, diverting attention really helps.
@copsham, thank you so much for this info, it will undoubtably be invaluable, I will start to draw up some lists and questions for the consultant and get hubby to buy me some vit c!
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Becki