Amputation Left Above-Knee Amputation, 22 April 2025

[mendogal]

I'm so sorry about your dog and then your dad's health scare. Not how anyone plans to spend Christmas!

My sincere hope that 2025 brings a final, positive resolution to your knee saga and that you are able to move forward with a rheumatologist. Best to you and yours.

 

[Layla]

Aww, WFD I am so sorry to read of the loss of your dog. We love our pets so much and miss them terribly when they're gone.

Thankfully your dad is doing well after his health scare.

We will add the second stage date to your signature, wonderful that your labs look good! Prayers the check in January looks good also and you proceed without a hitch.

Wishing you perfect healing in 2025!
@WFD

 

[WFD]

January 30, 2024 - Six months from first stage of two-stage revision

My father passed away last Saturday - we were all with him in the hospital when he passed. At 93 (almost 94) he had a pretty good run, and was mentally sharp right up until the last few hours.

This afternoon is the wake and tomorrow is the funeral, both of which I had to organize (with a lot of help from some family members). I'm also the executor of his estate, which is fairly complicated. Now I get to be the family patriarch, which I am not looking forward to.

The January blood test looks good, and I am now on the final glideslope of getting ready for the second stage of the revision, which has been moved out again to February 24th (I've already updated my signature).

When I was getting caught up today, I like what someone else said in their post - "I feel like a turkey getting excited for Christmas".

 

[EalingGran]

So sorry to hear about your father's death.
It is hard even when they have had a good innings. Managing the executor role whilst dealing with your knee is also really tough.
Good luck for your upcoming surgery. Hope this goes well.

 

[Pumpkin]

Condolences to you and your family.
Wishing you all the best for your upcoming second stage of your revision.

 

[Layla]

I am sorry to read of the loss of your father, WFD. My heart goes out to you during this painful time.
Wishing you strength and peace in the weeks and months to come.
Thankfully your most recent blood test looked good. Some good news in the midst of sadness.
Please keep us posted.
@WFD

 

[mendogal]

I'm sorry. It's always hard and especially bittersweet sad when there's that generational turnover.

 

[sistersinhim]

My sincere condolences for the lost of your father. Being alert until hours before his death was a blessing. So many of us having had that when our loved ones left us.

What good news it is that the end of the revision/infection process is coming up quickly!

 

[Jamie]

@WFD……I am sorry to hear of the loss of your father. What a blessing that you could enjoy him right up until the end. I know you will miss him terribly. Add in the executor duties and you have a very full plate! Hopefully you can find some ways to offload some of the duties and are able to rest in between all you have to do before surgery and in recovery afterwards. After all, you’re going to need to try and put yourself first to heal. We’re here for support if you need it…..or maybe just to listen to a good whine if things get frustrating.

 

[WFD]

February 15, 2025 - Six and a half months since first stage of two-stage revision. Nine days until my second-stage surgery.

I saw my surgeon yesterday for a pre-op meeting.

We mainly outlined the criteria for him to use during the surgery so that if he finds that the conditions in my knee are so bad that the likelihood of good functionality are poor, he will abort the surgery and temporarily close things up so we can then talk and make a decision about amputation. I'm hoping that this next surgery will be successful but I have to plan for the possibility that I have reached the end of the road and amputation will be the only way to end up with any kind of function. I don't want to go through a very difficult surgery and recovery only to go and get it amputated anyway a few months later.

During the discussion, he mentioned a few interesting things about allergies to implants. First, he agreed that the outfit in Chicago (Orthopedic Analysis?) is the only way to go. He explained that skin allergies and allergies to materials implanted inside the body involve entirely different pathways and you need a test specifically designed for the latter, and that is the one that Orthopedic Analysis offers. Skin tests were almost worthless he said.

He also mentioned that 100% of the revisions he worked on that were blamed on allergies were in fact caused by infections. Some infections he said, are so slow growing that they are nearly undetectable until you open up the knee, examine it, and take samples. He felt that a lot of mysterious problems are caused by these nearly invisible infections.

I know that some people will disagree with his statement but I thought I'd mention it as food for thought.

 

[mendogal]

Thank you for that.

It’s a fact that there are throughout the body ample opportunities for subclinical infections. And that the way biofilms can form on implants is fertile ground for such problems.

 

[Layla]

Oh goodness, WFD, reading this makes me sad for all you've been through and the possibility of what you're facing. I can't begin to imagine how difficult this must be. I know you realize you're never alone here and that we'll be here for you always. You will be in my prayers for a successful revision and complete healing.
@WFD

 

[WFD]

Thanks @Layla .

 

[Jockette]

I'm hoping that this next surgery will be successful but I have to plan for the possibility that I have reached the end of the road and amputation will be the only way to end up with any kind of function.

I’m so sorry to read this and I truly hope this next surgery will be successful.

He explained that skin allergies and allergies to materials implanted inside the body involve entirely different pathways and you need a test specifically designed for the latter,

This makes a lot of sense.

Some infections he said, are so slow growing that they are nearly undetectable until you open up the knee, examine it, and take samples. He felt that a lot of mysterious problems are caused by these nearly invisible infections.

This makes a lot of sense, also.

 

[Layla]

WFD, I realize this is the eleventh hour, but I just read through your thread and I'm wondering if you would consider an appt with Hospital for Special Surgery, at least an online consultation to begin with, since HSS is the top rated orthopedic hospital in the country known for it's expertise in complex revision surgeries and limb salvage procedures. They are located in NYC, with other east coast locations, but will review cases remotely. I will include the link. HERE

Possibly they can assess alternative reconstruction options, evaluate infection management strategies to optimize healing and provide another (fresh) perspective on whether amputation would even need to be a consideration.
Even if the recommendation remains the same, you may have peace of mind knowing you've explored this option.
@WFD

 

[Jamie]

@WFD …. It is promising that your bloodwork has been so good in these past months. I’m going to hold on to those good thoughts in prayer for you for your upcoming surgery. Depending on how things go on February 18th, you might give Layla’s suggestion some thought. You’ve been so thorough in your research and analysis during all of this and I honestly think you’ve done as good or a better job at it than many of the doctors you’ve seen.

I truly appreciate that you’ve chosen to journal everything here on BoneSmart with frequent personal posts to other members that are always right on target and helpful. Your constant positive attitude will most certainly comfort other BoneSmarties who might be facing a similar challenge in their recovery. I am praying for a good outcome for you this time. We’ll be here for you when you can post afterwards.

 

[EalingGran]

I am so sorry @WFD to read of what you are going through and the decisions you may have to face with your upcoming surgery.
I have read your difficult journey over the last 2-3 years and admired your fortitude. You also gave me good advice during my recovery. I do pray that this surgery will be successful and your knee functional.

He also mentioned that 100% of the revisions he worked on that were blamed on allergies were in fact caused by infections. Some infections he said, are so slow growing that they are nearly undetectable until you open up the knee

That is fascinating. I do wonder about when most infections actually start. Are they often present from the beginning?
Also about the frequency of allergies.
I am definitely nickel allergic ( got a horrible rash to an early cheap Fitbit clasp) but my surgeon was very reassuring and said he had never seen problems. Thankfully I have never experienced any issue. Your surgeon may be right and a fair number of so called "allergies " are undiagnosed infection.

 

[WFD]

Thanks all, for your kind comments.

@Layla , I can't get surgery done at HSS as they are out of network. As far as a consultation goes, the real key is what are the conditions when the surgeon opens up my knee - did the infection come back despite decent CRP numbers? Is the extensor mechanism in good shape? There would be no way for HSS to answer those questions.

Given my current situation, if all goes well, a hinged knee is the only possible option, as there are no ligaments and no bone where the middle of my knee used to be.

If conditions inside my knee are not good, amputation may very well be the best option, especially compared to a long and painful reconstruction with no guarantee of good results.

I have confidence in my surgeon and have gone over everything with him in great detail, so I think I will stay the course and see what he finds inside my knee.

 

[Layla]

I do understand. I wish you weren't facing such a challenge. It's heartbreaking. There are many on the forum that care. We're supporting you and hoping for the best. We'll be watching and waiting to hear from you whenever you're comfortable sharing any news after your surgery on the 24th. Holding positive thoughts and lifting you in prayer for the best possible outcome.
@WFD

 

[Oldped]

@WFD, I have read through your thread and appreciate your careful documentation. I am looking for some moral support. I had tkr 4 months ago, initially ok ROM then regression after painful pt. Just saw revision OS for 2nd opinion. He feels Arthrofibrosis may often be indolent infection, sometimes genetic.I had work up for infection today, waiting on results. If infection, you know the drill, if not he will refer to Mayo Clinic to a Dr doing research on Arthrofibrosis,removes implant, replace with hinged knee, then meds/pt protocol after with about 70% success rate. I think I may have the genetic predisposition because I had a lot of stiffness after prior scope on other knee. Anyway, just wondering if you have any tips on how to cope with this mentally-I am really struggling, feel pretty down with this news. I hope things improve with your ongoing difficulties, I can really empathize. Thank you