THR Bilateral THR due to AVN

[Deni444]

I guess it's hard to compare but my surgeon did 246 primary hip replacements and 30 revisions (1 year). He also specialized in knee replacement so over 423 in total including knees. He is also Orth surgical lead.

 

[emersonf]

Wow!! That’s very impressive

 

[Coddfish]

I can see you have had various responses on what ‘high volume’ means. If you find the surgeon on the national joint registry, you should be able to find the total number of procedures they have done in the last reported year, and also over 3 years. There will be a pie chart showing primary hip, primary knee, hip revisions, knee revisions. Most surgeons in this field do both hips and knees but may specialise towards one or the other (for example mine does more hips than knees).

Thanks for asking about my recovery. It’s going very well thank you. I was out and about in a local beauty spot for 2 hours this morning, albeit with 3 sit downs to take in the view. I thought my first recovery went really well, if anything this one is trending ahead of it.

 

[emersonf]

Hi everyone, thank you so much for all the responses. I am going to get a second opinion for my THRs.

In my search for surgeons, a few names keep coming up. Has anyone had experience with Mr Hugh Apthorp, Ms Sarah Muirhead Allwood, Mr Simon Newman or Professor Richard Fields?

 

[Coddfish]

no - but they all look to have good profiles

 

[emersonf]

Thank you.
Ms Sarah Muirhead allwood is very well respected but she is 77 years old and I think maybe too old? For a second opinion she would be good I think. But for surgery, precision and steady hands are important. I don’t think I can put THR off for much longer. My condition is deteriorating by the day. Until 4 weeks ago I could still walk 10000 steps a day. Now, I can’t even leave the house and I’m in constant pain, sitting on the sofa with ice pack all day long

 

[benne68]

very well respected but she is 77 years old and I think maybe too old

She might actually be a good choice for a second opinion given her experience. Seeking a second opinion is not an obligation to use her for your surgery. If you liked the first specialist, there's no reason not to go back to him/her for the surgery, should you decide to proceed.

 

[emersonf]

Yes, thank you for this. I’ll go for a second opinion. To be honest, I lost confidence in my first doctor and looking at this credentials he may not be the right none for me. He was recommended by my rheumatologist but at the time I thought I was just going for advice re physio or some other non invasive treatment. Now that I know I will have surgery, I want to choose the best one for me. I’m going private (through insurance) so I can choose where I go for surgery. I’m very scared because I have multiple AVN in most joins (knees, elbows, shoulders) so my nightmare doesn’t end with the hip replacements. That’s only the beginning

 

[Jamie]

She was someone our retired Nurse Director, Josephine, was well acquainted with. If you do go see her, mention that you’re on BoneSmart, the online forum Josephine Fox managed for many, many years. I believe she would remember Jo.

I agree that with the AVN in multiple joints, you need a comprehensive plan for treatment. That is going to require someone with experience in this issue. Not all surgeons have that, so be sure and ask when you are seeking appointments.

 

[bethvk]

I can’t sit sorry to hijack this thread but I don’t know what to do

 

[emersonf]

What do you mean bethvk?

 

[Layla]

Hello bethvk,
I am sorry you're hurting. You will need to start your own thread to receive feedback from others and the BoneSmart staff. We will need more information before we're able to respond. We don't know what type of surgery you had, or when. We need more details. Following is some information to join us as an insider, if interested.

Join Insiders Club

As an Insider you will have the ability to start your own threads and engage in discussions with members and staff about your specific concerns. You will have full access to all forum features, and valuable services like assistance with locating a surgeon, helpful downloads, and entry to the BoneSmart Library filled with videos and in depth articles to support you on your joint replacement journey. Please join us!

Here is a link to check out ->

Become an Insider

bonesmart.org

@bethvk

 

[emersonf]

Hello everyone.
I am looking for a bit of advice.
My pain worsened two weeks ago especially on one hip. I had an MRI scan which did not show progression of the AVN. There was still no collapse but a lot of bone marrow edema as was last time. MRIs of both knees showed the same AVN as 6 weeks ago too. However since yesterday, the pain intensified more. I struggle to walk a few steps even with a cane. When sitting or lying down it’s even worse. Now I feel like my thigh and knee are pulling somewhat inwards and I have a feeling that there is something hard in my buttocks.

The surgeon I saw who initially advised THR and then advised core decompression, now advised to wait two - three months to see if this is a flare up and might settle. He was also much less optimistic about THR now because of the bilateral knee AVN which (he said) will make recovery from THR very challenging and slow.

Any insight would be greatly appreciated.

 

[benne68]

I'm so sorry your surgeon is discouraging you from a THR because of your knees. Is his concern that the recovery will take longer or that you won't recover well at all? Does he think you will require knee replacements as well?

Were you able to get a second opinion from a different surgeon?

 

[emersonf]

Hi Benne

Thank you for your message. The surgeon seemed a bit overwhelmed with the bilateral knee diagnosis and significant increase in pain. He went from saying that THR offers reliable improvement in pain and quick recovery to saying that recovery from THR will be very long, difficult and challenging because of the knees. He said we should review in a couple of months which is what they say when they want to get rid of you!

I got a second opinion before the first doctor changed his tune. It was mostly for the THR and this surgeon didn’t pay attention to the knees (it was before they became too painful).
The second doctor suggested bilateral THR posterior. The first one, originally had suggested staged anterior. Now I feel a bit lost and the pain over the last two days has increased by a lot. I can’t find a comfortable position sitting or lying, I can’t walk and the hip joints hurt even when I move my upper body. Pain medication which helped until a couple of days ago is no longer effective. Only ice helps a bit.

 

[benne68]

@emersonf I'm so sorry you are trying to navigate such different opinions.

I don't have AVN. However, the hip pain you are describing really resonates with me right now. I'm schedule for a left THR next week. Like you, I cannot find a comfortable place to sit or lie in bed.My ability to walk has declined significantly in the past few days and pain has become a constant companion. Given the similarity in our symptoms, I wonder if it is the AVN or the hip deterioration that is causing your pain?

For what it is worth, I remember that after my first THR, my knee on that side become more painful (I think because with the hip in proper alignment all the soft tissues in the leg struggled). However, because I was prepared for that problem going into the surgery, I understood what was happening and my expectations were realistic. I have been really happy with the outcome of my first hip replacement and I'm looking forward to getting this second one taken care of. Recovery pain goes away. The pain of a deteriorating hip only gets worse.

Only you can make the best decision for you. If I was in your position, I'd probably choose the bilateral posterior replacement and get it done as soon as possible. Why delay the inevitable when you can take action to get on the healing side of this journey?

I wish the all the best in making a decision on how to proceed.

 

[emersonf]

Thank you for your thoughts and advice. To be honest, until yesterday, I wouldn’t even entertain the idea of bilateral hip replacement. Today, I was in absolute agony and couldn’t get out of bed in the morning and ’m still not comfortable. So I am beginning to come to terms with that. But worried about the knees because of the AVN there as well

 

[Deni444]

I really feel for you as a fellow knee sufferer. I don't have AVN but have had significant knee issues on the right side due to poor alignment of the pelvis and a abnormal/unusual wearing of the hip joint. For many years I was totally unaware that I had issues with my hips because my only symptoms were knee related. My recovery has been a bit challenging and slow because of my knee issues. Especially as I couldn't take antiinflammatory medication for a number of weeks post surgery.

I guess I wanted to give you a little encouragement because now one of my hips has been replaced I am feeling so much better and my mobility has significantly improved despite still having the knee issues. I've got my second hip replacement coming up and I've been warned that it will be a long recovery. Having experienced the improvement and regained so much mobility, I'm a little daunted but I welcome the opportunity to eventually regain, even more mobility.

Before my first hip replacement in March I was on the verge of hiring a wheelchair because I simply couldn't walk. I couldn't get across my kitchen without severe pain. Now I'm still using crutches but have been shopping, gone on walks can climb in and out of the shower, do a little gardening and so much more. My knee still hurts and swells up, it grumbles all the time but I have a strong, pain free stable hip and it makes a huge difference. I'm still using crutches and I find that helps me achieve the level of exercise I need to rebuild my soft tissue health. Some may consider that a challenge but I see it as part of my recovery and a minor inconvenience. Maybe you could get some for now? I wish I'd have thought of it when things were so difficult before surgery.

 

[Jamie]

I did have a small bit of AVN in my knee that resulted in my first knee replacement, so I understand some of the fears and uncertainty you may be feeling. It in no way compares with your situation where the necrosis is evident in multiple joints. But I can say that even a small amount of dying bone can be horribly painful….as mine was.

The necrosis does not improve. This is the fact you need to keep in mind. It may stay the same for a while or worsen steadily. Or the pain can suddenly get much worse like you’re experiencing now. Since it’s in all four of your joints, you need a surgeon who is comfortable dealing with this situation and not putting things off to see if the pain settles. It might, but not because anything has magically healed.

I would go with your gut feeling about Surgeon #1….that he’s just beyond his level of expertise in dealing with your level of AVN. I suggest you make an appointment as soon as possible with Surgeon #2 to discuss where you are now. Ask questions about patients he’s treated with AVN in multiple joints to see how comfortable he is in dealing with your problem now that you have AVN in your knees. See if he still thinks bilateral procedures are the way to go.

It may be that your recovery from any joint surgery now will be a bit more challenging than normal. But, think of the challenges ahead if you don’t get started getting this fixed. It will at some point get worse. But once the necrotic bone is cut out and your implant is in place, there is no more bone death there. Your body can begin to heal for real. This is an important point.

If you meet with Surgeon #2 and still have concerns about your options, don’t hesitate to see a third surgeon or maybe even a fourth. It is so important to have the right doctor to work with. It’s worth some searching. I’m happy to help you find additional surgeons to consult, if you’ll just let me know. You may have to do a little driving to get to see people who are totally independent when reviewing your case, but you’re worth this effort. It’s your quality of life for the remainder of your years that you’re considering. It’s important to make choices that will give you the best opportunity for good mobility and far less pain.

 

[emersonf]

Thank you so much Deni and Jamie, I appreciate your responses.

I’m really scared and a bit lost at the moment. Will look for a third surgeon but everything takes such a long time (even private). What’s your view on bilateral hip replacements? Was that an option for you Deni?