THR Bilateral THR due to AVN

[Layla]

I find everything so overwhelming,

I can only imagine how unbearably heavy everything feels right now. Grieving your daughter, carrying the pain of your family as you watch them grieve and now having surgery delayed. It's understandable you're feeling overwhelmed. It is a lot, all at once. You are surviving something unimaginably hard, emerson. Try to focus on one step at a time toward getting approved for surgery. Each appointment will move you closer to that approval. The surgery is a big step toward easing a measure of pain and allowing you to have a better quality of life in so many ways. You want it and your daughters want it for you. If counseling feels like too much right now I do personally know a couple people who found a lot of comfort through GriefShare online. It is faith based, but very practical and may help you not feel so alone. Check it out, if interested, and know that we're here for you.

 

[emersonf]

Hi Jamie, I think he meant that steroids alone wouldn’t cause AVN on four joints because it’s usually just the hips that are affected. But I am also worried that there is an underlying condition that may have gone undiagnosed despite several immunology tests to check for auto immune disorders when I developed persistent pericarditis. I have ulcerative colitis too so they thought it must be an autoimmune. But the tests were always inconclusive.

 

[Deni444]

@Jamie may be able to get into the details, you've got a lot going on there friend!

I wanted to flag up that from my own limited personal experience when faced with an amount of testing for Autoimmune. I understand it is generally a lengthy diagnostic process because it is very complex and difficult to accurately pin down because it mimics numerous conditions and can be unpredictable. Unfortunately, a bit of a medical treadmill.

I know you have been understandably frustrated and wondered if you were being passed off unnecessarily. Whilst hearing it can be messy and take time to pin down may not be particularly welcome. At the very least you may be more reassured that they are facing complexity rather than necessarily being dismissive or evasive.

I remember a teacher who would say, 'take one bite of the apple at a time because there's less chance of choking'. It's a little saying that I try to apply to situations that can feel overwhelming. I think it's been quite powerful in my life, when I remember it.

Keep us posted

 

[Jamie]

Hi Jamie, I think he meant that steroids alone wouldn’t cause AVN on four joints because it’s usually just the hips that are affected. But I am also worried that there is an underlying condition that may have gone undiagnosed despite several immunology tests to check for auto immune disorders when I developed persistent pericarditis. I have ulcerative colitis too so they thought it must be an autoimmune. But the tests were always inconclusive.

You’re correct that the hips are most commonly the affected joints with extended steroid use. But studies show that it is possible to also have AVN in the knees. AVN is not a given when steroids are used, but it is a risk.

Demi is correct that diagnosing and treating autoimmune conditions is very complex and sometimes it’s difficult to pinpoint what is going on. I do hope you are able to get some more definitive answers soon so you can proceed with your hip replacements. Your BoneSmart family is here for you whenever you need a little boost. Don’t hesitate to post.

 

[emersonf]

Thank you so much @Jamie I honestly don’t know what I would have done without BoneSmart’s wonderful members and staff. I managed to get an appointment with my rheumatologist for tomorrow and will probably know a bit more about what they are thinking /suspecting then. Will keep you updated

 

[Legseleven]

I’m so very sorry to hear about your loss and ongoing health issues @emersonf .
Bone smart is a great support. Please take great care.

There’s a lot of good bereavement support available in the UK:
Sue Ryder
Mind
Cruse and others all have information on their websites, and you will find the right support. I’m sure you’d find the right help beneficial.

Sometimes you have to look around to find what works the best for you. Please have a look.

I think the GP is a good place to ask for help too.

 

[Layla]

Thinking about you as I'm here on the forum, emersonf, and wondering how your rheumatologist appointment went on Monday...f you feel like sharing. If not, that's okay too.
Sending a hug and warm wishes for a peaceful weekend.
@emersonf

 

[emersonf]

Good morning

Thank you so much for the support and information @Legseleven.

Thank you @Layla for your message.
I had a week full of appointments with more to come. The rheumatologist has referred me for a dopler ultrasound to rule out or diagnose Peripheral Arterial Disease and to a knee specialist (both appointments on Monday). I’m being referred to a pain specialist as well because they are suspecting Complex Regional Pain Syndrome. I don’t know where all this leaves me with the hip replacements but from what I understand the surgeon is not keen to operate as he is worried about the complexity of my condition which will affect outcomes. I can, of course, find someone who is willing to operate but now I am also scared about the challenges in rehabilitation and outcomes. I don’t know what to think… so I’m back to total mental, emotional and physical paralysis

 

[Deni444]

It's strange to be someone looking in over the fence, reading and thinking things look like they are definitely, finally moving forward nicely and then to arrive at your concluding comment about your paralysis. You are going through so much and from what you say, it's been very, very busy. Lots to cope with physically, I clocked up 2000 steps during my recent hospital appointment. The physical activity alone is going to deplete your batteries and you were already running low. Now consider the emotional stress of information overload that doesn't provide definitive answers.

I think the paralysis you describe is what most people would be feeling after going through the last week, let alone the months of challenges you've experienced. It seems to me that you are doing what you can already and actually being pretty proactive and resilient. I'm incredibly proud of the stamina and strength you have found recently to engage with all of the testing. You've been through so much and I know it must have taken a lot of strength you maybe don't feel you have.

I think, I shared before... One bite of the apple at a time, that way you don't choke. Be kind to yourself, look after yourself as best you can and take it all one step at a time. The more they know and find out, the closer you'll get to a solid recovery roadmap.

In the meantime, heartfelt wishes... Sending you strength and a battery top up

 

[emersonf]

Dear @Deni444 , thank you so much for your support and encouragement. Thank you also for offering a different, more objective perspective. You are right, things are moving in the right direction. Of course, I also want to rule out any serious conditions that might need to be treated before major surgery or at least allow the surgeon to be prepared for any additional complications. I’m just a bit overwhelmed and exhausted. Grief is crippling…

 

[Deni444]

Absolutely, it is crippling and agonising. You are an example of incredible bravery to be enduring all of this on top of your grief. Keep us posted, keep sharing, say it all... and we're always here to offer a loving arm of support

 

[Layla]

Dearest emerson,
First, you may not feel strong right now, but you are, as you're walking through a storm that most cannot even imagine. The unbearable grief of losing your daughter, enduring ongoing pain and now facing so many unknowns, medically, it makes sense that you feel paralyzed. You're carrying so much all at once. My heart goes out to you.

It is okay to feel afraid. The thought of surgery, recovery and the diagnoses you may be facing can stir up fear about the future. However, it doesn't mean you won't get through this. It shows you do care about your life and the ability to keep moving forward. You don't have to do everything all at once. Thankfully your physicians are being thorough now because they want the best possible outcome for you. Each test or appointment you're facing is in protection of your recovery. The saddest is how you're dealing with a broken heart while trying to heal your body. Frustration, fear, tears and hope...it's all part of moving forward...and you will. Even though you're afraid and both emotionally and physically exhausted, you're still showing up and holding on. That IS bravery. We are here for you always, and hopefully you're reaching out to family and friends and accepting their comfort also.
Sending love and a warm hug. It will all be alright in the end.
@emersonf

 

[emersonf]

Thank you @Layla

 

[emersonf]

Has anyone heard of or experienced complex regional pain syndrome? I hadn’t even heard of it until last week.

 

[Deni444]

I don't know much about it but can tell you that it is complex and not fully understood. A simple search described (CRPS) as, "a chronic pain condition that affects limbs and is characterized by persistent, severe pain that's disproportionate to the injury"

I can share a story that may or may not be of interest. My sister's mother in law, very tragically lost her daughter, who had only recently had her first child. As I am sure you can relate to, her grief was tremendous. Within days of the death of her daughter she experienced extreme debilitating sudden and complex symptoms that were medically confusing. She was hospitalised and remained poorly for some time. As time went by the symptoms gradually receded and she is now back to her former self.

The reason, I'm sharing this story is that my very limited understanding of Complex Regional Pain is that stress can be a trigger. It is however far too complex for me to add anything concrete or meaningful. Merely to prod your medical team and ask if they think that your current emotional trauma could be a significant factor.

 

[emersonf]

Thanks @Deni444, I can definitely relate to your sister’s mother in law. But in my case the AVN is confirmed by MRIs and both femoral heads are significantly affected by necrosis in the weight bearing part of the hip joint. The knees as well. So I don’t think my symptoms are down to the emotional stress. But maybe the emotional stress amplifies the pain. I don’t know.

 

[Deni444]

Yes, to clarify. My comment was specific to your question about Chronic Regional Pain, rather than the AVN. Stress being a known contributor. You certainly have a lot going on but hopefully they are beginning to get to the bottom of it all. It's complicated when there are multiple conditions.

How are you feeling today?

 

[emersonf]

I understand… yes, very complicated when there are multiple conditions. I know you have your fair share of problems going on @Deni444 and you are managing so remarkably well. Your positivity and determination are an inspiration.
I have a few appointments tomorrow so will know more next week. I am not in any rush to have the operations to be honest. Partly because I’m scared and partly because I don’t have the motivation to get back out in the world (that’s due to grief). Now that the initial shock of losing my daughter is wearing off, I am completely devastated by her death. Maybe one day the pain will lessen. At the moment it’s just beyond anything I can possibly describe.

I always read your recovery updates and It always gives me hope to know that so many problems can be overcome with a lot of determination and the right attitude.

I’ve been meaning to ask and always forget, do you still find the activator poles useful?

 

[Deni444]

Thank you for your kind words, I appreciate it. It's been a bit of bumpy ride and even my usual positivity took a bit of a hit recently but I'm fortunate to have positivity. It's my super power. I think we all have a hidden super power and at a guess, I'd say you have a few too but they've taken a bit of a hit like mine did.

The Activator Poles are fantastic but there is limit to how much weight they can support. My latest hip was steadily declining up to surgery and I was finding I needed to go back to my crutches because I needed more support. I actually tried the activator poles yesterday but it's way too early for them. I was limping far too much. I imagine I'll transition to them in a couple of weeks... At a wild guess.

I think you are coping better than you think... I'm seeing a difference in how you describe what you're feeling. Give it time, friend... Give it time to heal a little.

 

[Layla]

Hi emerson,
Yes, I have heard of Complex Regional Pain Syndrome. There have been members that have dealt with this condition. There are a couple of different types of CRPS, It can develop after an injury, stroke, heart attack or even after a surgery and immobilization. Following is an article on CRPS - HERE