Looking for a little bit of advice, feeling rather down at the the moment.

[moonie8404]

Any UK patients here can provide some feedback/advice. I've been diagnosed with bilateral acetabular protrusion as well as bilateral hip impingement FAI (no labral tear). I also have Ankylosing Spondylitis and various bursitis (bilateral trochanteric bursitis and right ilioposas bursitis).

I'm really confused as I've been told I need a double hip replacement but due to my age (39) I'm to wait as long as I can until I can no longer take the pain. I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I saw a registrar at the clinic last month, and told due to my complexities I need to be seen by the consultant but he was arranging SI joints injections to see if my pain improved or was coming from my hip. Anyway, today I get a letter telling me I've been discharged from orthopaedic care by the consultant as he feels I don't need their care anymore and what they have offered is sufficient.

I'm totally flabbergasted by it, as for someone with these issues I find it odd I'm not being monitored under their care. Is this normal?

I'm finding this just hard to deal with as I'm in a lot of pain everyday, I can't do half the things I want to do due to my hips, as well as my AS but to just be left, I feel totally neglected.

Please can anyone advise, if this is normal or not. This is the consultant who Sat on his WhatsApp messaging his wife about his kids, when proceeded to rake a personal call in the middle of my last appointment with him, leaving me alone with a student who injected my bursitis and clearly was inexperienced and caused a lot of pain and blood to go everywhere!

I'm so upset, I can't afford ongoing private care, but I feel so let down by my local hospital. I was seeing Dr Zahn at the William Harvey but sadly he has now left and I no longer see him - he was rhe most supportive and I paid privately to see him initially but it clearly was all a waste a time.

 

[Bevelina]

Any UK patients here can provide some feedback/advice. I've been diagnosed with bilateral acetabular protrusion as well as bilateral hip impingement FAI (no labral tear). I also have Ankylosing Spondylitis and various bursitis (bilateral trochanteric bursitis and right ilioposas bursitis).

I'm really confused as I've been told I need a double hip replacement but due to my age (39) I'm to wait as long as I can until I can no longer take the pain. I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I saw a registrar at the clinic last month, and told due to my complexities I need to be seen by the consultant but he was arranging SI joints injections to see if my pain improved or was coming from my hip. Anyway, today I get a letter telling me I've been discharged from orthopaedic care by the consultant as he feels I don't need their care anymore and what they have offered is sufficient.

I'm totally flabbergasted by it, as for someone with these issues I find it odd I'm not being monitored under their care. Is this normal?

I'm finding this just hard to deal with as I'm in a lot of pain everyday, I can't do half the things I want to do due to my hips, as well as my AS but to just be left, I feel totally neglected.

Please can anyone advise, if this is normal or not. This is the consultant who Sat on his WhatsApp messaging his wife about his kids, when proceeded to rake a personal call in the middle of my last appointment with him, leaving me alone with a student who injected my bursitis and clearly was inexperienced and caused a lot of pain and blood to go everywhere!

I'm so upset, I can't afford ongoing private care, but I feel so let down by my local hospital. I was seeing Dr Zahn at the William Harvey but sadly he has now left and I no longer see him - he was rhe most supportive and I paid privately to see him initially but it clearly was all a waste a time.

Hugs of empathy you are having to deal with all this on top of the pain.
I know the battles your doing all too well.

I had the same struggle to get an initial referral, as i too was considered too young for THR’s, even tho the severe OA degenerated so much the hips actually collapsed. 3years on now from diagnosis; , amongst the strikes, cancellations and delays, I finally got 2 new hips done in the last year.

Your GP could refer you for a 2nd osteo opinion? Perhaps in another district if you can travel? (Not all nhs trusts work the same). I am in the UK too, i found i had to really push to get my operations sorted as my GP just threw different painkillers at the problem. Took sooo long, i live on my own and was on crutches for years. Our poor little nhs is not as it used to be!
I had reason to contact PALS (patient liason service) at my hospital to register a complaint about my surgeon. I don’t see why unacceptable conduct should be tolerated. Though it can take alot of energy to wade through.

I would be interested to see what other BoneSmarties think, but surely a re-referral to someone else would be good next step for you.
It is good you’re here and getting support.
I have always found this forum an invaluable help for me along my own long OA path, pre and post surgery.

Sincere wishes to you.

 

[djklaugh]

@moonie8404 I am so sorry you are having such trouble finding a competent and compassionate surgeon! The one you saw sure sounds very "old school" to me! It seems, with all the problems you have reported, you need a specialist and one who treats younger patients. We see many folks your age (and younger - even some teenagers) here and most of them do very well and return to strenuous jobs and activities. Implants these days are expected to last for 30+ years so there is no reason why you should have to wait in pain for some arbitrary age before getting the hip replacement(s) you need.

I unfortunately do not know enough about the UK system to be able to direct you to the best person but Bevelina had some very good suggestions. I have asked my colleagues here at BoneSmart for additional input for you.

 

[djklaugh]

@moonie8404 Here are our pre op articles and suggestions. In particular look at the "how bad is my hip?" - print that out, answer the questions honestly, and take it with you when ever you go see a new surgeon or other provider.

Hip: pre-surgery considerations

If you are at the stage where you have joint pain but don't know for sure if you are ready to have surgery, these links may help:


Score Chart: How bad is my arthritic hip?
Choosing a surgeon and a prosthesis
BMI Calculator - What to do if your surgeon says you're too heavy for joint replacement surgery
Longevity of implants and revisions: How long will my new joint last?

If you are at the stage where you are planning to have surgery but are looking for information so you can be better prepared for what is to come, take a look at these links:


Recovery Aids: A comprehensive list for hospital and home
Recliner Chairs: Things you need to know if buying one for your recovery
Pre-Op Interviews: What's involved?

And if you want to picture what your life might be like with a replaced hip, take a look at the posts and threads in stories of amazing hip recoveries

 

[mendogal]

Pinging staffer @EalingGran who is very familiar with UK health system.

 

[Jamie]

The advice you received from Bevelina above is right on target. Don’t give up!! Enlist the help of your GP to get another referral and don’t allow yourself to be pushed off to the side. You have several serious issues going on here and you need help. If you have to seek help from the Patient Liaison Service, do it. The NHS is under a lot os strain right now and it’s showing in the level of care the doctors sometimes provide. Even if you have to drive to another city to see someone else, it will be worth it. We have a couple of our staff members who are in the UK and hopefully they’ll join in with more details about what you should do next.

 

[EalingGran]

I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I am so sorry you are having these troubles.
I think you will have to enlist your GP and your rheumatologist to help you find the best orthopaedic department for your complex needs. Then you must insist on a second opinion. You are entitled to that under the NHS.
You may have to complain if you don't get satisfaction. It is not acceptable to be just discharged like that- although I am not sure you want to go back to that consultant.
Given the complex nature of your problems and your age- I wonder if you need a referral to a really specialist unit like the Royal Orthopaedic Hospital in Stanmore. Or is that just too far?

 

[CatchAll]

I followed the "wait as long as you can" advice. I wasted almost my entire 40s limping around. Make them explain what is gained by waiting. I don't know anything about the UK health system or the complexities of your situation, but hope they find a solution for you.

 

[Bevelina]

..interesting info point about uk nhs system i recently experienced.
As been so inactive in such bad pain for nrly 4yrs mostly on crutches, my weight was stuck just under 35 bmi, i realise is too much (35 bmi limit for nhs THR).
My consultant kept saying risks are too high to do the op at that bmi rate.
...Funny though how bmi wasn't mentioned when discussing going down the private route with him, a fat £28,000 for the 2 ops and he could do it the following month.

Protocols..?
Hmmmm....
I fought hard all the way and got the nhs in the end. So grateful now in recovery. Finally i think i can get some kind of life back, soon, after the last few years of housebound on my own.

Stay strong folks!
Lights are at the end of the tunnels.

 

[Jamie]

@Bevelina .... you certainly deserve a Gold Star for your tenacity in getting your hips replaced. And now you'll be able to reap the rewards! Good for you for keeping the faith up and the pressure on!

 

[moonie8404]

Any UK patients here can provide some feedback/advice. I've been diagnosed with bilateral acetabular protrusion as well as bilateral hip impingement FAI (no labral tear). I also have Ankylosing Spondylitis and various bursitis (bilateral trochanteric bursitis and right ilioposas bursitis).

I'm really confused as I've been told I need a double hip replacement but due to my age (39) I'm to wait as long as I can until I can no longer take the pain. I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I saw a registrar at the clinic last month, and told due to my complexities I need to be seen by the consultant but he was arranging SI joints injections to see if my pain improved or was coming from my hip. Anyway, today I get a letter telling me I've been discharged from orthopaedic care by the consultant as he feels I don't need their care anymore and what they have offered is sufficient.

I'm totally flabbergasted by it, as for someone with these issues I find it odd I'm not being monitored under their care. Is this normal?

I'm finding this just hard to deal with as I'm in a lot of pain everyday, I can't do half the things I want to do due to my hips, as well as my AS but to just be left, I feel totally neglected.

Please can anyone advise, if this is normal or not. This is the consultant who Sat on his WhatsApp messaging his wife about his kids, when proceeded to rake a personal call in the middle of my last appointment with him, leaving me alone with a student who injected my bursitis and clearly was inexperienced and caused a lot of pain and blood to go everywhere!

I'm so upset, I can't afford ongoing private care, but I feel so let down by my local hospital. I was seeing Dr Zahn at the William Harvey but sadly he has now left and I no longer see him - he was rhe most supportive and I paid privately to see him initially but it clearly was all a waste a time.

Hugs of empathy you are having to deal with all this on top of the pain.
I know the battles your doing all too well.

I had the same struggle to get an initial referral, as i too was considered too young for THR’s, even tho the severe OA degenerated so much the hips actually collapsed. 3years on now from diagnosis; , amongst the strikes, cancellations and delays, I finally got 2 new hips done in the last year.

Your GP could refer you for a 2nd osteo opinion? Perhaps in another district if you can travel? (Not all nhs trusts work the same). I am in the UK too, i found i had to really push to get my operations sorted as my GP just threw different painkillers at the problem. Took sooo long, i live on my own and was on crutches for years. Our poor little nhs is not as it used to be!
I had reason to contact PALS (patient liason service) at my hospital to register a complaint about my surgeon. I don’t see why unacceptable conduct should be tolerated. Though it can take alot of energy to wade through.

I would be interested to see what other BoneSmarties think, but surely a re-referral to someone else would be good next step for you.
It is good you’re here and getting support.
I have always found this forum an invaluable help for me along my own long OA path, pre and post surgery.

Sincere wishes to you.

Bevalina

Any UK patients here can provide some feedback/advice. I've been diagnosed with bilateral acetabular protrusion as well as bilateral hip impingement FAI (no labral tear). I also have Ankylosing Spondylitis and various bursitis (bilateral trochanteric bursitis and right ilioposas bursitis).

I'm really confused as I've been told I need a double hip replacement but due to my age (39) I'm to wait as long as I can until I can no longer take the pain. I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I saw a registrar at the clinic last month, and told due to my complexities I need to be seen by the consultant but he was arranging SI joints injections to see if my pain improved or was coming from my hip. Anyway, today I get a letter telling me I've been discharged from orthopaedic care by the consultant as he feels I don't need their care anymore and what they have offered is sufficient.

I'm totally flabbergasted by it, as for someone with these issues I find it odd I'm not being monitored under their care. Is this normal?

I'm finding this just hard to deal with as I'm in a lot of pain everyday, I can't do half the things I want to do due to my hips, as well as my AS but to just be left, I feel totally neglected.

Please can anyone advise, if this is normal or not. This is the consultant who Sat on his WhatsApp messaging his wife about his kids, when proceeded to rake a personal call in the middle of my last appointment with him, leaving me alone with a student who injected my bursitis and clearly was inexperienced and caused a lot of pain and blood to go everywhere!

I'm so upset, I can't afford ongoing private care, but I feel so let down by my local hospital. I was seeing Dr Zahn at the William Harvey but sadly he has now left and I no longer see him - he was rhe most supportive and I paid privately to see him initially but it clearly was all a waste a time.

Hugs of empathy you are having to deal with all this on top of the pain.
I know the battles your doing all too well.

I had the same struggle to get an initial referral, as i too was considered too young for THR’s, even tho the severe OA degenerated so much the hips actually collapsed. 3years on now from diagnosis; , amongst the strikes, cancellations and delays, I finally got 2 new hips done in the last year.

Your GP could refer you for a 2nd osteo opinion? Perhaps in another district if you can travel? (Not all nhs trusts work the same). I am in the UK too, i found i had to really push to get my operations sorted as my GP just threw different painkillers at the problem. Took sooo long, i live on my own and was on crutches for years. Our poor little nhs is not as it used to be!
I had reason to contact PALS (patient liason service) at my hospital to register a complaint about my surgeon. I don’t see why unacceptable conduct should be tolerated. Though it can take alot of energy to wade through.

I would be interested to see what other BoneSmarties think, but surely a re-referral to someone else would be good next step for you.
It is good you’re here and getting support.
I have always found this forum an invaluable help for me along my own long OA path, pre and post surgery.

Sincere wishes to you.

Thank you so much for taking the time to respond. I feel a little hopeless I must say as my GP is totally useless, I have to fight for everything and they still even refuse to do things. I can but try though, that is all I can do. I keep being told however that if I got my hips done now that I wouldn't have the quality of life I have now, which I find madness. Yes I don't rely on sticks and crutches every single day but I often push through and i'm in pain all day every day.

I am so pleased you got the treatment and surgery you finally needed. I've been lost in the system and i'm struggling to find a way back in. It isn't right. I was thinking that maybe I should be discharged until things get really bad, maybe that is what they think?

 

[Bevelina]

@Bevelina .... you certainly deserve a Gold Star for your tenacity in getting your hips replaced. And now you'll be able to reap the rewards! Good for you for keeping the faith up and the pressure!

(..the long long 4yr wait since diagnosis nearly drove me completely nuts mind you!) so my heart goes out to all on their waiting lists, this forum helps a great deal pre and post op time, thanks to all x

 

[moonie8404]

@moonie8404 I am so sorry you are having such trouble finding a competent and compassionate surgeon! The one you saw sure sounds very "old school" to me! It seems, with all the problems you have reported, you need a specialist and one who treats younger patients. We see many folks your age (and younger - even some teenagers) here and most of them do very well and return to strenuous jobs and activities. Implants these days are expected to last for 30+ years so there is no reason why you should have to wait in pain for some arbitrary age before getting the hip replacement(s) you need.

I unfortunately do not know enough about the UK system to be able to direct you to the best person but Bevelina had some very good suggestions. I have asked my colleagues here at BoneSmart for additional input for you.

Thank you for your time. Yes, two surgeons I have seen have told me I need to preserve my natural hips as long as possible, I don't know but I think that they don't consider my condition bad enough for it? I am in pain every day with my hips, I do get around the best I can, but I am in pain doing it!

Everyone's comments have been so helpful so thank you for this.

 

[moonie8404]

I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I am so sorry you are having these troubles.
I think you will have to enlist your GP and your rheumatologist to help you find the best orthopaedic department for your complex needs. Then you must insist on a second opinion. You are entitled to that under the NHS.
You may have to complain if you don't get satisfaction. It is not acceptable to be just discharged like that- although I am not sure you want to go back to that consultant.
Given the complex nature of your problems and your age- I wonder if you need a referral to a really specialist unit like the Royal Orthopaedic Hospital in Stanmore. Or is that just too far?

Thanks for replying. I don't know where to start with a specialist surgeon. Dr Zahn was recommended to me on here, he was compassionate and great however said I should wait for my surgery due to my age, and then he left Ashford and also no longer under his care.

My rheumatologist is all up in the air at the moment, as I have asked for a second opinion there as she is disagreeing with my orthopaedic surgeons in regards to my hips, as she is just seeing the impingment and not the AS causing my acetabular protrusion, its impossible to get anyone to listen to me or to communicate between one another.

I wish I had all the money in the world and could just keep going private because this is all affecting my mental health horrifically, especially dealing with many other medical issues with the AS and hips etc. Its wearing me down very hard.

 

[moonie8404]

I followed the "wait as long as you can" advice. I wasted almost my entire 40s limping around. Make them explain what is gained by waiting. I don't know anything about the UK health system or the complexities of your situation, but hope they find a solution for you.

they have told me I may need two other replacements if I have it done now, and each time I will lose more bone. They also say I won't have the mobility that I do now, that really the success stories are based on elderly people who don't have to run around and look after young children like I do, so i'd be better off waiting until I can't take anymore pain.

 

[moonie8404]

I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I am so sorry you are having these troubles.
I think you will have to enlist your GP and your rheumatologist to help you find the best orthopaedic department for your complex needs. Then you must insist on a second opinion. You are entitled to that under the NHS.
You may have to complain if you don't get satisfaction. It is not acceptable to be just discharged like that- although I am not sure you want to go back to that consultant.
Given the complex nature of your problems and your age- I wonder if you need a referral to a really specialist unit like the Royal Orthopaedic Hospital in Stanmore. Or is that just too far?

I will look at this hospital, but im not sure where this is off the top of my head! I think my GP will refuse to refer me, even if I show them that I am entitled for a referral to anywhere I choose not just the local hospitals!

 

[EalingGran]

Dr Gayatri Mittal is a Consultant Rheumatologist and the Clinical Lead for Ankylosing Spondylitis at the Royal Orthopaedic Hospital. Stanmore is in North London. This is the National Centre for Orthopaedics and she must work closely with Orthopaedic surgeons who operate on really complex cases like yours.
If I were in your shoes I think I would try to get a referral to see her for a second opinion- to see whether she thinks surgery would help. Even if she agrees that it is better to preserve your natural joints- she may have some ideas on further non- surgical treatment.

 

[Bevelina]

@moonie8404 I am so sorry you are having such trouble finding a competent and compassionate surgeon! The one you saw sure sounds very "old school" to me! It seems, with all the problems you have reported, you need a specialist and one who treats younger patients. We see many folks your age (and younger - even some teenagers) here and most of them do very well and return to strenuous jobs and activities. Implants these days are expected to last for 30+ years so there is no reason why you should have to wait in pain for some arbitrary age before getting the hip replacement(s) you need.

I unfortunately do not know enough about the UK system to be able to direct you to the best person but Bevelina had some very good suggestions. I have asked my colleagues here at BoneSmart for additional input for you.

Thank you for your time. Yes, two surgeons I have seen have told me I need to preserve my natural hips as long as possible, I don't know but I think that they don't consider my condition bad enough for it? I am in pain every day with my hips, I do get around the best I can, but I am in pain doing it!

Everyone's comments have been so helpful so thank you for this.

Yes indeedy, support on here is fantastic. Bless us all for being fabulous!

I had to beg my surgeon, often in tears for the nhs funding, and the 2 THRs; my sever degenerate OA was impacting my life to a full stop, plus i was a much needed carer to 2 elders.
If anyone else is on that road I empathise completely. It takes determination and grit to handle. I will never understand that surgeons do not seem to consider the gigantic impact this waiting has on patients. My hips had 30% deformed in the time it took to get them done. 1 had completely collapsed. Agony.
But i assure readers.. You won't always have to think about what time painkillers are due. Post op, You will be thinking of much sunnier things! Have Faith

 

[Bevelina]

I've also been told that the inflammation from my AS is rife in my hips and needs to be under control, however my rheumatologist disagrees. I have also been told my protrusion needs monitoring as they don't want it going too far making hip replacements difficult.

I am so sorry you are having these troubles.
I think you will have to enlist your GP and your rheumatologist to help you find the best orthopaedic department for your complex needs. Then you must insist on a second opinion. You are entitled to that under the NHS.
You may have to complain if you don't get satisfaction. It is not acceptable to be just discharged like that- although I am not sure you want to go back to that consultant.
Given the complex nature of your problems and your age- I wonder if you need a referral to a really specialist unit like the Royal Orthopaedic Hospital in Stanmore. Or is that just too far?

I will look at this hospital, but im not sure where this is off the top of my head! I think my GP will refuse to refer me, even if I show them that I am entitled for a referral to anywhere I choose not just the local hospitals!

I am sure you can insist for another opinion. You have a right to (UK NHS).
GP’s need to get off their backsides more these days. Had a right battle with my GP, trying to get a referral to OA consultant. 8 types of painkillers later and alot of see-how-you-go time, i got the referral. Wasted a few unnecessary years with messing about tho. Grrr...

Be persistent.

 

[moonie8404]

,

Dr Gayatri Mittal is a Consultant Rheumatologist and the Clinical Lead for Ankylosing Spondylitis at the Royal Orthopaedic Hospital. Stanmore is in North London. This is the National Centre for Orthopaedics and she must work closely with Orthopaedic surgeons who operate on really complex cases like yours.
If I were in your shoes I think I would try to get a referral to see her for a second opinion- to see whether she thinks surgery would help. Even if she agrees that it is better to preserve your natural joints- she may have some ideas on further non- surgical treatment.

Thank you so so much!! I'll certainly be looking more into this and taking information to my GP to try and push for a referral. This means a lot!