A date at last, THR here we come!

[Widge422]

Hi, as the title states, I am new on here and am totally confused about the whole hip displasia thing. I am going to try to put my story in a nutshell and hopefully someone can unravel my questions!
I am 37 years old and I have had right hip/pelvis pain for many years, I was kneed in the groin when I was 10 and had SPD in both my pregnancies, I have spent many years and hundreds of pounds visiting the Chiropractor who has always assured me that the pain was muscular and they could fix it. In the last 8 months or so the pain has increased and in the last 2 months or so it has become unbearable. I decided to visit my doctor who was mortified that in all these years I have never had any x-rays! I had an x-ray straight away, was called in for the results to be told I have bilateral hip displasia and coxa Vera! It has nothing to do with any trauma caused throughout my life, it has been there since birth! I booked into a private clinic to see a consultant who confirmed what the doctor had said and advised I needed an MRI Scan and to see another consultant who performs PAOs and he could tell me if I was a candidate.
I then went on holiday....... I spent 2 weeks on the internet trying to find any info I could, confusing myself and getting stressed about NHS wait times.
The consultant booked my MRI scan for this Thursday (3rd September) at a cost of £688! We have no private medical insurance!
While away I came across Mr Johan Witt who has replied directly to my emails (and I have sent him alot of emails), he advised that I shouldn't pay for an MRI scan and reckons he can give me answers from the x-rays and has requested them from the hospital, he also advised his waiting time is in the region of 6 months for surgery and 6-8 weeks for consultation.
So...... what do I do? Do I have the MRI scan anyway and pay or not? How long can I wait?
There are lots of different terms that I don't understand like: Arthroscopy (will I need one of those)
My biggest thing at the moment is the waiting, can I stand the pain much longer, pain meds help but do I stay on them long term, any help would be greatly appreciated. Thank you for taking the time to read my story.

 

[sharonslp]

Hi Widge. Some of your concerns are specific to medical issues in the UK, so I'm tagging @Jaycey and @Josephine specifically to address them. They will also know more about your diagnosis of dysplasia, and the xray vs MRI issues.

In general though, none of us wants to take pain meds any longer than we have to...that's often why we come round to the idea of surgery instead. And it often works. But each individual is different, and has to figure this out for themselves. There are people here who can help you in that figuring out process.

So sit tight and they will be along. In the meantime, we have a library full of articles, and there may be some that can give you useful information right now, so I'm giving you the link to the library.
http://bonesmart.org/forum/threads/library-index.14830/

Sharon

 

[Jaycey]

@Widge422 Welcome to BoneSmart. I too was born with bilateral dysplasia and it was not diagnosed until I was 58! I did not have an MRI for either hip. I agree with the consultant you have been emailing - a good hip surgeon does not need an MRI - don't waste your money.

I did some research on Mr Witt and his credentials look very good. Here's his profile on the National Joint Registry. If it were me I would go and see him. His wait time doesn't sound too bad and if he is already responding to you it's a good sign! I would not even consider arthroscopy. Many times that is a temporary fix and THR is needed shortly after. Get those hips replaced and get on with living!

 

[Widge422]

Thank you so much for replying to my post. You have put me at ease and will get onto Mr Witt next week, I think I will see him privately to speed up getting me on his NHS list!
I will cancel the private MRI but I am on an NHS list too, when that comes through I'll probably go for it anyway! Thanks again x



Becki

 

[Josephine]

Do I have the MRI scan anyway and pay or not?

Certainly not! You might see him privately for a consultation but that doesn't mean you can't revert to being an NHS patient for anything more. I've done it frequently.

There are lots of different terms that I don't understand like: Arthroscopy (will I need one of those)

Arthroscopy is unsuitable for this condition.

pain meds help but do I stay on them long term

If you need help with pain, take the pills!

 

[Gummy Bears]

I can see you've already gotten good advice on here. I'm 40, and also learned I have hip dispatch this year and had my right hip replaced with very good results. My operating surgeon never even looked at my MRI, he was just interested in my X-rays. Good luck and don't fear the hip replacement, I feel wonderful now!!

 

[Gummy Bears]

At least I don't think he looked at the MRI!

 

[Cynthia777]

I saw five surgeons and not one of them needed an MRI...only X-Rays. My Primary Care Physician ordered an MRI before I saw any surgeons and the radiologist is the one who diagnosed my Avascular Necrosis. Not sure how it works in the UK.

 

[Jaycey]

I think I will see him privately to speed up getting me on his NHS list!

I took this route for both hips. The only "snag" was the right hip X-rays were not available to my OS. Luckily an x-ray was covered in the programme I use. There was also an issue of coordinating getting on the NHS list with his medical secretary. My GP was totally uncooperative so I had to do all the leg work. Got there eventually! Good luck and do keep us updated!

 

[Widge422]

Thank you all for your advise and info, luckily my doctor is brill and has referred me straight away and arranged things really quickly (just hope it continues!) Mr Witt has already requested my x-Rays direct from the hospital so hopefully he should have them by now!? Will wait till tomorrow and hopefully he'll email me back, I'll keep you updated
Thanks again
X


Becki

 

[Jaycey]

Sounds like you are all set @Widge422 ! Take your list of questions and write down the answers while you are there. Private consultations aren't so rushed so you really get to know your surgeon and (at least I felt) we were making decisions together. All the best!

I look forward to your update!

 

[Widge422]

Thanks @Jaycey. Think I will start to make that list of questions now! Lol my only concern now is being on painkillers long term!? x


Becki

 

[Jaycey]

my only concern now is being on painkillers long term!?

If you need pain meds pre-op please take them. It is really only short term if you are waiting for surgery. Ask Mr Witt about this. Are you using any walking aides now? He may advise you to use a cane or crutch to take the weight off your hip pre-op.

 

[Widge422]

Yes, you are right, hopefully seeing him soon will help and he can give me more info on pain meds. Yes, the other consultant I saw has given me a stick! I hate it but am aware that it relieves a lot of the pressure and therefore helps with the pain! Just hate being starred at all the time!! x


Becki

 

[Widge422]

Gutted! Have got a private referral from my doctor 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! Have to get another referral from the doctor to go on his NHS list for a consultation which I'll have to wait 6-8 weeks for, pain is bad and on really strong painkillers, now been prescribed a tablet to stop me getting stomach ulcers as I'll be on the painkillers for so long! x


Becki

 

[Jaycey]

Have got a private referral from my doctor 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!

Sorry @Widge422 this is simply not true! You can indeed have a consultation and then get on the NHS list for surgery. Yes, you will need to wait the NHS wait times, but another referral should not be needed.

Did you see Mr Witt? What was his suggestion? I have taken this route twice and both times was advised how to best do this by the consultant. Yes, it's not straightforward. But you will get what you need with your consultant of choice.

 

[Widge422]

Oh! Really!?
I only spoke to the secretary?
Should I make an appointment to see him privately and then discuss it with him directly?? Thanks @Jaycey x


Becki

 

[Jaycey]

Yes, make an appointment to see Mr Witt. He will assess you privately and then advise you how to get on the NHS list. In both cases the consultant gave me a number to ring to work with the secretary. The med secs don't necessarily know this route as they see only the private or NHS part of his practice. This route takes ultimate patience on your part but you will get there!

 

[Jaycey]

PS: you are not "jumping the queue"! Merely working the complex system!

 

[Widge422]

I'll get that appointment booked tomorrow! Thanks again x


Becki