THR Bilateral THR due to AVN

We are all here for you. You are in my prayers and just sending huge hugs. Try and be kind to yourself and maybe indulge in a little pampering. Whatever can bring some peace, relaxation and calm. :console2:
 
I feel completely ‘paralysed’ emotionally, mentally and of course physically so I can’t take decisions to do anything.
Do you have access to a counselor for some talk therapy? It made a huge difference for me in getting past the paralysis I experienced after I struggled with two debilitating illnesses in one year. It was really had getting started, but I am grateful that I did it.
 
Dearest emerson,
This is simply heartbreaking. I am so sorry, please accept my sincere condolences on your loss. Obviously healing your broken heart is paramount as I’m sure the anguish you’re feeling is unbearable at times. It is understandable that it would be extremely difficult to endure surgery and recovery right now. It’s so sad to imagine the level of emotional pain you’re dealing with, coupled with the physical pain of deteriorating joints. I hope you’re able to find moments of peace and comfort. There is no wrong way to move forward, you will know when the time is right. I’m sending a warm hug and lifting a prayer for you as soon as I finish this post.
Psalm 34:18 “The Lord is close to the broken-hearted and saves those who are crushed in spirit” Remember…you are not alone. :console2:
@emersonf
 
@emersonf … I’m so sorry for all of this that you’ve been forced to go through. It’s certainly understandable that you would feel overwhelmed by it. I second the suggestion that you rely on some counseling to help.

Sometimes when life dumps a whole bunch on us at once, we need a little temporary help getting things back in perspective again. This is something where your GP can help with a recommendation for a psychologist if your counselor is not skilled in the wide variety of coping tools that are available. There are programs that a psychologist can offer to help you get back on track - confidence building, organization and coping skills, grief counseling, and more. Perhaps an appointment with your GP would be appropriate for you to discuss this and get a referral for the best person.

There is no doubt that you have some challenges ahead. Do you have any family or friends nearby you can lean on a bit until you feel a bit stronger and who might help you through any upcoming surgeries? Of course, we are all as close as your computer, so don’t hesitate to come talk with us when things feel a bit much to deal with. But it is important for you not to ignore the AVN diagnosis you have in your hips and knees. Things have no chance of improving without surgery and can get worse if left alone and you continue to walk on these damaged joints. We want to help you so that this is not a risk for you. But as Layla so accurately put it, first order of priority is to begin to heal your heart from the tragic loss of your daughter.
 
@emersonf Oh dear heart I wish I could give you a real hug! My youngest son died in 2007 so I know a bit of what you are going through.

When my son was little he went through a period of being curious about death and dying. One time he asked me what I would do if he died. I told him I would cry for a very long time. And eventually my eyes would run out of tears. But there would be a corner of my heart that never stopped crying. Alas that was a very prophetic statement. Life does go on but that corner of my heart is still weeping. I have one of my favorite pictures of him as my desktop picture. An acquaintance saw it one time (someone who did not know my son) and asked why that picture cuz in this person's opinion he looked "grubby". Well yes he was - he'd been spending a week in the Black Rock Desert in Nevada participating in his favorite activity -- building and launching high power rockets. So yes he was dusty, dirty, sweat stained and had the biggest grin on his face with a rocket motor over his shoulder, 2 of his best friends behind him also with huge grins, doing exactly what he loved to do. That is how I like to remember him.
 
Thank you so much @Layla, @Jamie and @djklaugh. I’m deeply moved by your kindness. I’m also sorry to hear you lost your son @djklaugh. I know that the pain never goes away. It’s just brutal. My challenges with my joints and AVN are minor compared to the unimaginable grief and sadness I feel these months. But of course they make life so much harder. I really want to find the strength to get better as I don’t want to be a burden to my two young daughters who are living with me. I don’t have any other family in the UK, some good friends but still, I don’t want to become completely dependent on others. Thank you again for all your support and prayers. It really means a lot!
 
I’m glad to hear you have two daughters living with you. Their company should be a great comfort to you. And you mentioned some friends as well.

Please try not to see yourself as a burden if you lean on them a little. These are people who love you and I’m sure want to help you get through this challenge. If you haven’t been in touch with your friends recently, why not get in touch again and have them come for a visit or go out for a lunch. Don’t be afraid to share your deep grief with those who love you. Sometimes just the sharing of your feelings can lighten the burden for you.

It does sound like you are suffering most from unresolved grief. It is certainly understandable and hopefully you can connect with a grief counseling program soon. These things really do help. We are always willing to listen as well.
 
Good morning everyone

I went for a pre op check up but the surgeon noticed some changes in my skin (shiny around knees and shin, loss of hair), feet swelling and reddish/purple feet. He now sent me for more tests for underlying conditions, so I’m back to the rheumatologist and possibly vascular specialist next week. What’s annoying is that despite mentioning to him several times that I also have bilateral knee AVN, he thought I was just describing knee pain and stiffness. When he checked the knee MRIs he got a bit anxious and said that this doesn’t happen from steroids use alone and we have to check for underlying conditions. My feeling is that he just wanted to get rid of me as he realised my case is complicated and hip replacements alone won’t fix the problems. This is the second surgeon that after proposing THR and ‘selling it to me’ changed his mind and sent me away for more tests, monitoring etc. Of course he may be right and it’s good to check for whatever else is happening but I was wondering if any of you with restricted mobility have had these issues ie circulation problems. My feet are also ice cold when resting.
 
Personally, I think it's a very positive and appropriate move to be referred for further investigation. From the very little I've read about AVN (Avascular necrosis), I understand that there are potentially a number of conditions, including long term steroid use that could be the underlying cause of the poor blood supply to a bone.

If it were me, I'd feel reassured that my medical team had the fullest picture of my health prior to joint replacement. I'd assume they would be better able with a fuller picture to plan for a successful final outcome.

On a personal level, yes I was diagnosed in my late teens with Raynaud's Syndrome. I'd class it as a minor condition compared to others. All I can share is that my medical team considered it insignificant in terms of my hip surgery experience or risk. I had the standard warming blanket prior to and after surgery. Having had the condition many years, it's well manageable without medication. A minor annoyance really. I've never been told that the RS contributed to my mobility issues but on the other hand I have been inconclusively tested for Lupus. My surgeon has me flagged for possible autoimmune.

Hopefully, someone else has more experience to share.
 
Thanks @Deni444. Your way of seeing it is much more helpful than mine. I feel a bit ‘passed around’ as was the case with my pericarditis (the treatment of which probably caused the AVN). The cardiologist was passing me on to rheumatologist for underlying autoimmune conditions but all the tests were always inconclusive so back to the cardiologist and then back to rheumatologist because they couldn’t get the inflammation under control. I was being discharged and re-referred over and over again. But I agree that it’s good to have the full picture before any major surgery. I understand you’ve gone through a lot too, I’m sorry to hear that. It takes a lot to stay positive when we get so many health problems. And for me, the grief about losing my daughter is just too much to bear. Thank you so much for the advice and support.
 
First and foremost, so sorry for your loss. It is heartbreaking!

I am also sorry for the disappointment you may be feeling, emersonf. I can only imagine how discouraging and unsettling it feels to have your surgery delayed, especially when you're ready to move forward. Hopefully you'll only need to see one of the specialists to get the answers your OS needs.

Truly, I don't believe your surgeon is trying to get rid of you, he's being careful because he noticed signs that could point to something your body needs attention for first. The symptoms you mentioned are all things that could affect healing and safety during or after surgery. Even though this feels like a setback this shows he's protecting you and wants to make sure you're strong enough and nothing is standing in the way of your recovery. It may feel like he's sending you away but really, he's only pressing pause in your best interest, keeping you safe.

This doesn't mean you've lost your chance for surgery, you're just taking an extra step to make sure that when the time is right, your body has the best chance to heal well. Please try to reframe it as being "well cared for" as opposed to "abandoned".
Biggest of hugs, emersonf...here for you always! :console2:
@emersonf
 
Thank you so much Layla, you are right. I’m glad they are trying to consider all the issues that might affect recovery or pose additional risks to surgery. It’s all a bit overwhelming for me. Until end of April I was walking 14000 steps a day (partly to help me deal with my loss). And within a couple of months I am completely disabled and now even talking about life threatening conditions. I believe he mentioned PAD or micro vascular disease or something. Thank you for the support. Very grateful
 
Oh my, @emersonf , I can't even imagine how frustrating this must be when you have mentally prepared for surgery in 10 days!

I hope the testing can be done quickly and that you are cleared for the operation soon.

Please don't give up hope. Keep advocating for yourself. We'll be here to support you.
 
I'll just add @emersonf to what I said above. I am positive now but that didn't happen overnight. I can identify a little with what you expressed about being passed around, particularly being tested inconclusively for autoimmune. I've had time to process and come to terms with it without the additional heartache you are enduring. When I first landed on BSmart I was in a very low place and still very confused and overwhelmed with it all. I truly hope that you too will in time find the inner strength to be positive. It's a bit of a recovery journey in and of itself :console2:
 
Hang in there @emersonf .

Our docs, and especially surgeons, often have tunnel vision that delays or prevents them hearing our concerns, descriptions of other symptoms, etc the first time we bring them up. Weird but true.

We have seen members with autoimmune problems take longer to recover from joint replacement, and vascular disorders definitely affect healing. Just as we have to let postop healing proceed at its own pace, so too must we let these preop side journeys play out.

We're here for you!
 
Autoimmune disorders are so very complex and they can rise up during times of stress and then move to the background at other times. Don’t discount the impact that the loss of your daughter has on your stress levels and your overall health. Trying to deal with that grief and everything else on your plate is a huge task. My heart really goes out to you. Is there anyone (friend, family, grief counselor) you can lean on right now so you don’t feel so isolated?

The cautious approach exhibited by your medical team is a good one. You really want to know about any potential problems prior to surgery and not afterwards. I know it’s frustrating, but as long as you keep advocating for yourself to get whatever tests and opinions are needed done as quickly as possible, things should eventually work themselves out.

You can always blow off a little steam here about your frustrations. That’s what we’re here for. We definitely will understand!
 
Thanks @Jamie, I’m trying to keep on going but it’s a lot. I don’t want to burden my two young daughters with my problems, they’ve already been through a lot with the shock and loss of their sister and now seeing me so disabled and in constant pain for nearly 5 months. They were pushing me to have the hip surgery, thinking it would make me somewhat more mobile even though the knees are also affected with AVN. But we were not expecting this latest news and putting the surgery on pause. Thank you for your advice to see a grief counsellor. I was seeing one until recently but I find everything so overwhelming, I don’t even want to talk to anyone most days. So I stopped going. I need to focus on the physical problems now and improve my mobility. It’s very strange that I deteriorated so quickly. But I guess AVN does that.
 
AVN can go fast sometimes. This is all the more reason to try and stay on top of all of this. I'm not sure I agree with your surgeon about the idea that AVN does not occur from the use of steroids alone. I have certainly seen studies that say just the opposite - that it can occur in some people this way. No matter what caused it, it really does need attention now to prevent further bone loss in your joints. So, for that reason I'm glad your doctors are looking into everything. There is no doubt that the joint replacements will be needed and the sooner all this testing is accomplished, the better.
 

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