@Beckford I am so sorry you are having all these problems,but,maybe at last you have an answer to your problems and if they have a plan then this will get you on the road back to health and mobility,keep in touch, we are all here to help.Hugsxxx
@Beckford ... I need to clarify something with you. Prior to your post today, back in January you were planning to have a revision to your hip with a custom implant. Was that done? And, if it was, how did you do in the months following the revision? If it wasn't done and you've waited all this time to get things resolved, what happened that caused such a delay?
You mentioned that you have had 5 acetabulum replacements. Can you give me dates (at least the months) for those so we can put them in your signature? Those are significant dates that would be important for and advice we might be able to provide for you.
I'm so sorry you are still in pain and suffering and we will try our best to get you some resolution for your problem.
You are absolutely right, I did have a custom made acetabulum, it’s still in the store room at RNOH. My hip dislocated a total of 6 times, the last time being Boxing Day. Because it has stayed in place it was decided as it appeared text book perfect on all images to give it more time and fortunately it has not even come close to dislocating again and the surgeon sees no reason to change a well positioned implant.
The pseudotumour is a separate issue that has been getting progressively worse, it was only very recently discovered but explains why my hip feels so uncomfortable. I am praying it can ne removed without taking the hip out again. I hope this clears the situation!
Okay....now that is more clear. Can you still give me the dates of the 6 dislocations so we have it as part of your history in your signature? Even thought the dislocations are not related to your current problem, they are still an important matter of your medical history.
I don’t have the exact dates of the dislocations.
The first was about 8 weeks post op and the last was Boxing Day , the rest were pretty evenly spread between those time although I remember a two week window where it dislocated 3 times in a around 10 days!
Sorry I cannot be more specific, I never keep a diary, it would be too depressing to read!
I have put together your dislocation dates from your posts in your thread.
Check this list and let is know if it looks OK, we will add it to your signature for you. Some are approximate.
THR Dislocation - December 26, 2018
THR Dislocation - December 15, 2018
THR Dislocation - November 17, 2018
THR Dislocation - November 19, 2018
THR Dislocation - September 12, 2018
THR Dislocation - August 31, 2018
Wondering if you have dates yet for either procedure so that info can also be added to your signature?
Please post dates below if you have them, or let us know once they're scheduled. Thanks! @Beckford
I have been told that I can have the fluid around my hip drained using ultrasound guidance. However this will not deal with the solid mass but it might give pain relief. Unfortunately it is likely the fluid will collect again unless the pseudotumour is respected and completely removed.
I have also been told that pseudotumours are common especially after revision surgery and at least 50% don’t cause symptoms. The other potential source of pain is due to my gluteus medius atrophy and my body recruiting other muscles and tendons to do the work resulting in tendonosis which I am told can be very painful.
Very difficult to know what to do when given two very different scenarios but my gut feeling is that this large mass in my hip is the true cause of my pain. Getting rid of it may not be all that simple!
Not much news to report except my case is being discussed at RNOH next Wednesday at a meeting of all the hip consultants.
Having had this right hip revised 3 times now I am not sure if it can be done again without huge risk of infection, instability and ultimately ending up without a hip at all. It’s a tough one because I cannot imagine suffering this pain for the rest of my life either. I don’t suppose anyone has had this number of revisions, I think I am setting the world record! It’s no joke I am really upset and frightened for my future.
I believe member (Fractured), who is no longer participating on the forum had numerous revisions. I understand that's cold comfort, but if you want to peruse his thread, here it is - https://bonesmart.org/forum/threads/thr-from-hell.44898/post-1189883
I'm sorry for the fear and distress this is causing in your life. Prayers for the most effective treatment, your peace of mind and perfect healing.
We're here for you Please stay in touch for support. @Beckford
I had a letter today from one of Prof H registrars. It’s quite technical but it reads as follows:
I have reviewed the imaging today with Jane. Her right hip replacement shows to be well fixed with nicely orientated components. Her recent MRI shows significant TFL hypertrophy. There is a pseudotumour exiting the hip posteriorly. The gluteal attachments appear to be intact. There is some atrophy of gluteus medius and minimums but not a florid fat infiltration to suggest a denervated muscle. She has wasting of the short external rotators consistent with previous posterior approaches. In the first instance I think she would benefit from specialist physio therapy to see if we can retrain the hip abductors in preference to TFL butbif pain is a barrier then I would consider a local anaesthetic and steroid injection to the trigger point between the ASIS and AIIS. We will discuss her case at the hip debris MDT meeting and see her back in four months.
Sorry this is long and boring but if anyone has had similar problems with their progress it would be good to know I am not on my own.
I am glad you posted the report. It sounds like there's a real chance of strengthening your lateral hip muscles? At least this is what I gleaned from it.
Which means it is hopeful.
So it sounds like you are going to be seeing a specialist PT., how do you feel about that? I think it could be very beneficial to you, contingent on the PT going slowly and gently.
You really do deserve some positive news!
Please take care and it will be very interesting to see your updates going forward with the treatment.