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

[Jamie]

Be brave, @moonie8404. You have to be the squeaky wheel in a medical world where the tendency is to not want to deal with the more complex cases like yours. There are surgeons who understand your situation and sometimes the hardest part is hanging in there long enough to find them. GPs who don’t really understand what’s going on (and there are MANY like that) can be just as difficult to deal with.

When you get frustrated, lean on us here at BoneSmart! It’s what we’re here for and we are happy to listen to a little whine when things are toughest and follow up with some kind words of support. Having staff and members in the UK will help too because they have dealt with some of the same problems you are facing with the doctors.

One thing I can tell you is you’re not getting good information from those doctors who are telling you to wait until you are older for hip replacements. Doing that risks severe damage to your hips which can make any eventual surgery more difficult. In addition, hips often don’t “go bad” in a slow, predictable progression. It can be slow and then all of a sudden the hip may collapse. I don’t want to alarm you, but it’s important that you keep in mind you need to avoid that situation. Anyone who has had this happen will tell you that the pain is excruciating and your mobility is severely limited. You don’t want to risk this.

It is also questionable information that you would need two revisions if you had surgery now. Hips today can last well over 20 years. It’s also not true that you will not have the ability to run around after children with a replaced hip. We have had plenty of women your age who had their hips replaced and went on to HAVE children for the first time and then care for them. Sometimes it might be a good idea to limit impact sports like running, singles tennis, basketball, or racket ball….but even sports are still on the menu for hip replacement patients. Try to put this bad advice out of your mind and work toward regaining your quality of life. This is a great time of your life and you want to be able to LIVE it….not just wait around for some “magic” age when you’re old enough to have your bad hips fixed.

You are part of our BoneSmart family now and we care about you. We’re here for you any day, any time.

 

[Bevelina]

Spot on Jamie!
Ahhh... Such great support for us on here,
its so valuable.
Can’t tell you how much this helped me along my THR’s road.
Thanks everyone. X

 

[moonie8404]

Be brave, @moonie8404. You have to be the squeaky wheel in a medical world where the tendency is to not want to deal with the more complex cases like yours. There are surgeons who understand your situation and sometimes the hardest part is hanging in there long enough to find them. GPs who don’t really understand what’s going on (and there are MANY like that) can be just as difficult to deal with.

When you get frustrated, lean on us here at BoneSmart! It’s what we’re here for and we are happy to listen to a little whine when things are toughest and follow up with some kind words of support. Having staff and members in the UK will help too because they have dealt with some of the same problems you are facing with the doctors.

One thing I can tell you is you’re not getting good information from those doctors who are telling you to wait until you are older for hip replacements. Doing that risks severe damage to your hips which can make any eventual surgery more difficult. In addition, hips often don’t “go bad” in a slow, predictable progression. It can be slow and then all of a sudden the hip may collapse. I don’t want to alarm you, but it’s important that you keep in mind you need to avoid that situation. Anyone who has had this happen will tell you that the pain is excruciating and your mobility is severely limited. You don’t want to risk this.

It is also questionable information that you would need two revisions if you had surgery now. Hips today can last well over 20 years. It’s also not true that you will not have the ability to run around after children with a replaced hip. We have had plenty of women your age who had their hips replaced and went on to HAVE children for the first time and then care for them. Sometimes it might be a good idea to limit impact sports like running, singles tennis, basketball, or racket ball….but even sports are still on the menu for hip replacement patients. Try to put this bad advice out of your mind and work toward regaining your quality of life. This is a great time of your life and you want to be able to LIVE it….not just wait around for some “magic” age when you’re old enough to have your bad hips fixed.

You are part of our BoneSmart family now and we care about you. We’re here for you any day, any time.

Jamie, I came on tonight to find this message, and it brought me to tears. Thank you so so much to you all for your support, it really means a lot because I often feel lost and forgotten about over my health. My hips are only a small part of my health issues, I have many other conditions which are causing havoc too so i'm in pain in most parts of my body. No one communciates to each other, and I can't afford to keep going private to try and seek help for these things.

I feel with my hips i'm sat here, stalemate, waiting for the inevitable surgeries but being told I am to wait, its just consumes my thoughts. You have put it so clearly what I think about and question in regards to the advice I have received from two orthopaedic surgeons, and it makes me question that I am wrong and they are right. I feel like now I need to go to someone who really knows about my conditions and can help me without dismissing my concerns and totally ignoring my mental health in all of this as well as my physical health.

I have a doctor's appointment booked for next Friday, to try and get another referral to a suitable doctor who can help, but I'm terrified they are going to dismiss me out the room. This is my GP who told me that men suffer worse with AS than woman, which is totally inaccurate and archaic, and made me feel like what I was suffering was minute compared to what men suffer. So yes, I am really going to need some luck from you all.

I am sorry if I pester you all again, please be patient with me. And I am sorry if I ask stupid questions, and become repetitive with what I say, I think that is my constant frustration with my conditions.

One thing I have noticed however since I had a AS flare in January is I have nerve pain that sits in my hips, SI joint region (I have bilateral sacroiliitis) which runs down the backs of my legs into my feet, in both legs. This sensation comes and goes but can get quite noticeable sometimes during the day, and makes me feel like I cannot support my legs). I'm concerned as to where this is coming from and what is triggering it i.e. hips or SI (so I don't know whether its a rheumatologist or orthopaedic issue). Either way I have no one to speak to about it! So i'm a little concerned over that. I tried to wean off my Gapapentin howeverI couldn't as the nerve sensation just increased to a horrific level. So it must be masking something I think :( I am not sure if anyone else has experienced this kind of sensation?

 

[ladyj]

The only advice I can give, is to get a private appointment with a surgeon that you trust and then see if they will treat you on the NHS.
It does sometimes work.

 

[moonie8404]

The only advice I can give, is to get a private appointment with a surgeon that you trust and then see if they will treat you on the NHS.
It does sometimes work.

Well, I did this already with a surgeon suggested on Bonesmart on another thread, got on his NHS list and then he has recently left the Trust and I have been discharged from that clinic too! So it was all pointless! I can't afford to spend more money on another appt for this to happen again :(

 

[Jamie]

From your last post, it sounds like you may need to request multiple referrals from your GP. Since this doctor has been unsupportive in the past, do you have a relative or friend who can go with you to the appointment for moral support and backup? This can really help you have confidence and ensure that the doctor doesn’t dismiss your concerns. Also, it’s helpful to make a list of concerns you want to address so you don’t get flustered or forget anything. Stick to the list and be insistent that you get to see the doctors (spine specialist, rheumatologist, orthopedic surgeon) you need.

If all else fails, perhaps you should consider switching to a new, more helpful GP.

Please let us know how your appointment goes. Stay strong!!!

 

[grumpy231]

I've just seen your thread, and completely understand your frustration and some of your pain.
I have a selection of hip issues bilaterally and also sacroilliac inflammation on one side, but not the AS.

I totally understand how difficult it is to advocate for yourself, and myself have had a journey which has taken a long time, and a lot of pain. Having finally got diagnoses and waiting for surgeries, its hard for me knowing the solution, and waiting. I cannot imagine how hard it is to not know a solution and still be in this level of pain.

I am in another country, so cannot offer specific advice, however I have made breakthroughs with the following:

Taking a male support person to my specialist appointment. ( Yes, in this day and age if the male says the female is not able to keep up with the housework, this does affect the decisionmaking process...)

Swimming (just freestyle, and surprisingly not walking in the pool) does seem to provide some pain relief.

I second the suggestion that even if you have to have further surgeries down the track, there is little quality of life now (if you are anything like me that is) to support not having surgery. Also - technology improves - who knows what will be possible - both for later surgery options, and in controlling the AS down the track.

I also cannot state strongly enough, how much this journey can affect your self worth.
For me: Now that people have investigated, they can see on scans that I have labrum tears and double impingements in both hips, and inflammation seen on scans in more than 5 areas, and debilitating pain which limits what I do, and my value and identity because of that. It is visible, and measurable, and I still doubt it. Partly because of the journey to get to this point, and partly because of societal beliefs.

So, I'm not sure if you need to hear this but, You have worth. You are worth 'fixing', you are worth fighting for, you have value, and this is not who you are. It is an obstacle you are going to overcome. You do have a bright future. There are ways of managing this, and if you keep fighting you will find the right people to help you on this journey.

Best wishes for an easier road ahead.

 

[grumpy231]

I forgot to say that one thing that helped me, was to look for research papers published about your condition/specifics by specialists in your country, and try and get referred to them/contact them. it's kind of like a cheat sheet, eg if the paper recommends early surgery in your condition as an outcome, then that's what they should follow with in a consultation. Your hospitals/NHS regions should hopefully list somewhere what specialists they have as part of their group.

 

[Jamie]

I forgot to say that one thing that helped me, was to look for research papers published about your condition/specifics by specialists in your country, and try and get referred to them/contact them. it's kind of like a cheat sheet, eg if the paper recommends early surgery in your condition as an outcome, then that's what they should follow with in a consultation. Your hospitals/NHS regions should hopefully list somewhere what specialists they have as part of their group.

Excellent suggestion, @grumpy231 ..... I need to remember that when talking with our members!

 

[moonie8404]

I forgot to say that one thing that helped me, was to look for research papers published about your condition/specifics by specialists in your country, and try and get referred to them/contact them. it's kind of like a cheat sheet, eg if the paper recommends early surgery in your condition as an outcome, then that's what they should follow with in a consultation. Your hospitals/NHS regions should hopefully list somewhere what specialists they have as part of their group.

Thank you so much for your messages. They mean a lot. I think like you day years or pain and no one listening, you end up accepting this will be my life forever and that you'll have to live in pain like this. I'm sad I'm missing out so much on things with my children, I've missed so much already, they are 5 and 8 now and I really don't want to miss out of any more.

Good call on the research papers, I have done some googling already but haven't found much I must say, maybe I'm not looking in the right place, what I found is old or in the US. I don't even know where to begin to look for orthopaedic doctors who has experience with protrusion and impingements combined. If anyone knows where I can find it I'd be grateful but I'll certainly keep googling!

 

[EalingGran]

2019 Jul; 4(7): 476–481. Published online 2019 Jul 17. doi: 10.1302/2058-5241.4.180047
PMCID: PMC6667978PMID: 31423331
Bilateral total hip arthroplasty in ankylosing spondylitis: a systematic review
David Lin,1 Alexander Charalambous,1 and Sammy A. Hanna1
Author information Copyright and License information PMC Disclaimer
This seems like a good review article.
It shows that although hip replacement is more challenging in AS - it can be very successful.
Hope this is helpful.

 

[grumpy231]

I'd focus on the protrusion to be honest. Impingements - FAI ones, seem very common (though seemingly not as common as standard hip replacements) and I would like to think that anyone that could deal with the protrusion could handle the impingement as well. (NB IFI Ischiofemoral impingements are another type, but definitely not common. - just in case it catches you out in your googling/research) AS mentioned above, hips and AS could be another research focus.

 

[Supersonic]

Really enjoyable thread, I'm in the terrible pre - op position and have bee for almost a year. It's so obvious when I walk with the typical waddle.
I feel.like everyone is pitying me as I try to work and do a few simple things.
It was commented on that all i do is work and sleep. It's nearly true!

 

[Supersonic]

..It's hard not to feel sorry for myself as I work in healthcare, often I'm looking after people who comment that I'm the one in need of nursing!.
If I gave work.up, I'd go into massive debt and lose my home. Part of me wants to but I'm far too sensible for that.
I do wonder if I'm.damaging my hip.further.but I'd just get depressed without working.and cycling.
It does occupy my every waking thought.. Its no life but i know theres a life on the other side, I just hopeci can keep sane until then

 

[Jamie]

@moonie8404 …. How are things going with you? We haven’t heard from you in a while and I hope there has been some progress in getting help with your hips. Please let us know how you’re doing when you have time.