Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
deets

hello all from an AK

Recommended Posts

Hi all, I'm Deets from Lancashire uk and had my above knee amp 6 weeks ago due to 3 failed knee replacements (each became infected-strep first then resistant staph).

I'm really lucky as the whole process for me has been positive. I'm free of the pain in my leg now and my rehab team have been amazing. In fact I pick up my first prosthesis next week from Seacroft in Leeds and I can't wait--I'm fed up with the squeeky kneed femorette!

Ok well I hope to join in some of the chat and get to know some of you along the way.

Share this post


Link to post
Share on other sites

Welcome Deets,

Glad things are going so well for you.

Read an article a while back about Seacroft setting up some kind of rapid turn around system for amputees, sounds like it is working.

Share this post


Link to post
Share on other sites

Hi, Deets, and welcome! Sorry you had to join our little "club," but I'm glad to hear that things are going well for you.

Join right in, here...we're a "chatty" bunch and there's most likely someone who can answer any question you might have!

Share this post


Link to post
Share on other sites

Hi Deets, I am in a similar boat as you are. Check my introduction post for the full story. I am on my first failed knee replacement and I go in for surgery this coming monday 5/24. All but one of my tests indicate infection. The DR plans on just having to re-cement the tibial plate but he is going to scrape the bone and prosthesis to culture and confirm for infection. If it is infected I am going to have it amputated as I have already spent the last 4 years in pain and having serious mobility problems.

Before your surgeries that were infected did you have bone scans and WBC scans? Did you have fluid pulled out of your knee and cultured? What were the results of those tests? I ask this because the fluid culture is the only test that does NOT indicate infection, but because of the way the bacteria sticks to the bone and metal I don't have any faith in the synovial fluid culture but my DR is taking it as definative. Just 3 days ago I tested positive for MRSA and a UTI so I fully expect the knee to be infected.

I have done a ton of research on having an AKA so I might be able to answer some questions for you, however if it's a question that requires experience in missing a leg then someone else on here would be better informed.

The people on here are great and helpful, you should be able to find all kinds of support and insight.

Welcome

DJ

Share this post


Link to post
Share on other sites

Hi Deets. Welcome to the forum. :happy:

Share this post


Link to post
Share on other sites

Hi Deets, I am in a similar boat as you are. Check my introduction post for the full story. I am on my first failed knee replacement and I go in for surgery this coming monday 5/24. All but one of my tests indicate infection. The DR plans on just having to re-cement the tibial plate but he is going to scrape the bone and prosthesis to culture and confirm for infection. If it is infected I am going to have it amputated as I have already spent the last 4 years in pain and having serious mobility problems.

Before your surgeries that were infected did you have bone scans and WBC scans? Did you have fluid pulled out of your knee and cultured? What were the results of those tests? I ask this because the fluid culture is the only test that does NOT indicate infection, but because of the way the bacteria sticks to the bone and metal I don't have any faith in the synovial fluid culture but my DR is taking it as definative. Just 3 days ago I tested positive for MRSA and a UTI so I fully expect the knee to be infected.

I have done a ton of research on having an AKA so I might be able to answer some questions for you, however if it's a question that requires experience in missing a leg then someone else on here would be better informed.

The people on here are great and helpful, you should be able to find all kinds of support and insight.

Welcome

DJ

Hi Kender

How the infections showed themselves was really strange. Sometimes I would elevated WCC bloods and others really high CRP bloods. Sometimes nothing. Strangest of all was when I developed sinus tracts which produced riddiculous amounts of puss and sinus fluid but alway swabbed negative for organisms!! Preop i nasally swabbed negative for MRSA. It was only when my leg was taken off and a detailed study of the tissues was undertaken was MRSA found along with osteomylytis, and the skin was positive for cellulytus. I did forget to mention also, the 3rd knee tibial component was so long that 3 months post op when fully weight bearing, it 'breached' the tibial cortex and on x-ray you could see where the stem end had begun protruding the tibia. That really caused some pain. I eventually ended up with 3 sinus tracts which I had 'probed' by a plastics surgeon. This was with a sterile swab stick---2 holes could be probed right thru to the knee prosthesis. Absolutely awful.

Don't chance any of this please. I lost almost 10 years to failed knees and infection. I lost hope and my fighting spirit. I don't blame the hospital. I know these bugs can come from anywhere, I'm just greatful to have my life back and to be free from 24/7 agony.

Now I love the challenges ahead, learning to walk, everything. I'm positive again and know that I'll get along just fine now.

Share this post


Link to post
Share on other sites

Hi Deets, I am in a similar boat as you are. Check my introduction post for the full story. I am on my first failed knee replacement and I go in for surgery this coming monday 5/24. All but one of my tests indicate infection. The DR plans on just having to re-cement the tibial plate but he is going to scrape the bone and prosthesis to culture and confirm for infection. If it is infected I am going to have it amputated as I have already spent the last 4 years in pain and having serious mobility problems.

Before your surgeries that were infected did you have bone scans and WBC scans? Did you have fluid pulled out of your knee and cultured? What were the results of those tests? I ask this because the fluid culture is the only test that does NOT indicate infection, but because of the way the bacteria sticks to the bone and metal I don't have any faith in the synovial fluid culture but my DR is taking it as definative. Just 3 days ago I tested positive for MRSA and a UTI so I fully expect the knee to be infected.

I have done a ton of research on having an AKA so I might be able to answer some questions for you, however if it's a question that requires experience in missing a leg then someone else on here would be better informed.

The people on here are great and helpful, you should be able to find all kinds of support and insight.

Welcome

DJ

Hi Kender

How the infections showed themselves was really strange. Sometimes I would elevated WCC bloods and others really high CRP bloods. Sometimes nothing. Strangest of all was when I developed sinus tracts which produced riddiculous amounts of puss and sinus fluid but alway swabbed negative for organisms!! Preop i nasally swabbed negative for MRSA. It was only when my leg was taken off and a detailed study of the tissues was undertaken was MRSA found along with osteomylytis, and the skin was positive for cellulytus. I did forget to mention also, the 3rd knee tibial component was so long that 3 months post op when fully weight bearing, it 'breached' the tibial cortex and on x-ray you could see where the stem end had begun protruding the tibia. That really caused some pain. I eventually ended up with 3 sinus tracts which I had 'probed' by a plastics surgeon. This was with a sterile swab stick---2 holes could be probed right thru to the knee prosthesis. Absolutely awful.

Don't chance any of this please. I lost almost 10 years to failed knees and infection. I lost hope and my fighting spirit. I don't blame the hospital. I know these bugs can come from anywhere, I'm just greatful to have my life back and to be free from 24/7 agony.

Now I love the challenges ahead, learning to walk, everything. I'm positive again and know that I'll get along just fine now.

Luckily I haven't had any sinus tract issues. My CRP level was far below the level indicating infection so I am glad you mentioned that yours would do that to. Knowing that your story is what I have to look forward to is exactly why I want to cut to the chase. I have had 4 years of pain and mobility issues so I can relate to how you felt but I think that 10 years would have made me mental. I think some of the reason that I have accepted amputation is because then your struggle is walking again and there is light at the end of the tunnel for that battle. Before amputation many people don't have a light at the end of the tunnel, they don't know if they will ever walk again with their bio leg or if they are going to live with a useless limb or will they be able to amputate. I think that once the amp is done there is one path and not all the uncertainty. You can actually put your energy into one goal. I can not wait to have that feeling. Right now I am just stuck, with no control over the outcome and at the mercy of whatever my knee has wrong with it. Good luck getting everything back to normal.

DJ

Share this post


Link to post
Share on other sites

Hi Deets, I am in a similar boat as you are. Check my introduction post for the full story. I am on my first failed knee replacement and I go in for surgery this coming monday 5/24. All but one of my tests indicate infection. The DR plans on just having to re-cement the tibial plate but he is going to scrape the bone and prosthesis to culture and confirm for infection. If it is infected I am going to have it amputated as I have already spent the last 4 years in pain and having serious mobility problems.

Before your surgeries that were infected did you have bone scans and WBC scans? Did you have fluid pulled out of your knee and cultured? What were the results of those tests? I ask this because the fluid culture is the only test that does NOT indicate infection, but because of the way the bacteria sticks to the bone and metal I don't have any faith in the synovial fluid culture but my DR is taking it as definative. Just 3 days ago I tested positive for MRSA and a UTI so I fully expect the knee to be infected.

I have done a ton of research on having an AKA so I might be able to answer some questions for you, however if it's a question that requires experience in missing a leg then someone else on here would be better informed.

The people on here are great and helpful, you should be able to find all kinds of support and insight.

Welcome

DJ

Hi Kender

How the infections showed themselves was really strange. Sometimes I would elevated WCC bloods and others really high CRP bloods. Sometimes nothing. Strangest of all was when I developed sinus tracts which produced riddiculous amounts of puss and sinus fluid but alway swabbed negative for organisms!! Preop i nasally swabbed negative for MRSA. It was only when my leg was taken off and a detailed study of the tissues was undertaken was MRSA found along with osteomylytis, and the skin was positive for cellulytus. I did forget to mention also, the 3rd knee tibial component was so long that 3 months post op when fully weight bearing, it 'breached' the tibial cortex and on x-ray you could see where the stem end had begun protruding the tibia. That really caused some pain. I eventually ended up with 3 sinus tracts which I had 'probed' by a plastics surgeon. This was with a sterile swab stick---2 holes could be probed right thru to the knee prosthesis. Absolutely awful.

Don't chance any of this please. I lost almost 10 years to failed knees and infection. I lost hope and my fighting spirit. I don't blame the hospital. I know these bugs can come from anywhere, I'm just greatful to have my life back and to be free from 24/7 agony.

Now I love the challenges ahead, learning to walk, everything. I'm positive again and know that I'll get along just fine now.

Luckily I haven't had any sinus tract issues. My CRP level was far below the level indicating infection so I am glad you mentioned that yours would do that to. Knowing that your story is what I have to look forward to is exactly why I want to cut to the chase. I have had 4 years of pain and mobility issues so I can relate to how you felt but I think that 10 years would have made me mental. I think some of the reason that I have accepted amputation is because then your struggle is walking again and there is light at the end of the tunnel for that battle. Before amputation many people don't have a light at the end of the tunnel, they don't know if they will ever walk again with their bio leg or if they are going to live with a useless limb or will they be able to amputate. I think that once the amp is done there is one path and not all the uncertainty. You can actually put your energy into one goal. I can not wait to have that feeling. Right now I am just stuck, with no control over the outcome and at the mercy of whatever my knee has wrong with it. Good luck getting everything back to normal.

DJ

What you describe is exactly how I felt. Only you know the pain, and describing it is difficult. In actual fact you are in total control. Its your limb, your life its taking over. If it is infected and you don't believe further revision or remedial surgery will help the issue then demand an independent second opinion.

This sounds cinical, but when I made it clear I wasn't interested in sueing the surgeon or hospital, I found they became instantly more willing to consider amputation as an appropriate course of action.

I had to get an ortho second opinion as protocol required and this was when I got a full and frank explaination of what had gone on and what I could expect if I didn't have an amputation.

Obviously everybody is different and knees fail for all manner of reasons, but infection in the knee is increadibly difficult to treat and successfull revisions are few.

It sounds bizarre doesn't it that amputation should become a 'successful' outcome for us??!! But it really did work out for me.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×