rvl3240
new member
United StatesRequest: Where in the United States could we go to get the most effective and EXPERIENCED infectious disease specialist and surgeon to fix a really bad periprosthetic joint infection (PJI) after a total knee arthroplasty (TKA)? I want to maximize the chance of a good outcome and avoid options like fusing the knee, or god forbid - amputation.
Condition: Serious bacterial infection of left knee several months after TKA. Infection has not progressed to the blood, or spread to other places in the body at this point, but it is doing real damage to his knee and overall health. It has definitely taken its toll - he is extremely weak & fatigued, can't stand, walk or even roll over. Looks terrible like he's been aged 10 years. His right leg/foot is also swollen. Genitals swollen. After months of misery he's really depressed and feels like he's dying.
We've started a 2-stage replacement, prosthesis removed. Surgeon is not confident he can fix the knee and is already talking about amputation...
The surgeon seems competent but I don't think he's handled a lot of cases like this.
Details about the patient:
Sequence of events:
If family members weren't there advocating/taking care of him around the clock... I'm not sure what would happen to him......
Worse, I never felt there was an urgency to get this infection addressed. They sent us off for several weeks without an appointment, no doctoring, until we finally demanded to be seen.
In conclusion:
My dad broke his neck when he was young and was exposed to tons of x-rays. It's suspected this was the cause of his neck cancer later in life. Anyways, in the 1990s when he had cancer surrounding his spinal cord he was in big trouble. He had a doctor who was planning to give him the standard chemotherapy treatments. My dad had been doing research in a library, looking up names of doctors, calling them... until he found out about some new technology/techniques being used by a doctor at Mayo Clinic - using a cyclotron. He spoke up about it and it turned out his doctor had studied under the Mayo Clinic guy. He asked the doctor, "where would YOU go?"
The doctor said, "I'd go to that guy...."
Long story short, he applied for the program at Mayo Clinic and was completely cured against the odds.
This is what he needs for this knee. Where can I find the most advanced care, the most experienced infection guy & surgeon who handles serious cases like this all day long. I don't care how much money it is, I've got to save my dad's leg!
Condition: Serious bacterial infection of left knee several months after TKA. Infection has not progressed to the blood, or spread to other places in the body at this point, but it is doing real damage to his knee and overall health. It has definitely taken its toll - he is extremely weak & fatigued, can't stand, walk or even roll over. Looks terrible like he's been aged 10 years. His right leg/foot is also swollen. Genitals swollen. After months of misery he's really depressed and feels like he's dying.
We've started a 2-stage replacement, prosthesis removed. Surgeon is not confident he can fix the knee and is already talking about amputation...
The surgeon seems competent but I don't think he's handled a lot of cases like this.
Details about the patient:
- Age: turning 71
- Sex: male
- Height: 6'1
- Weight: 240 - (normally like 220, think he's gained weight during this period with all the swelling, and being immobilized for 8 months)
- Race: white
- Duration of complaint: infection for at least a month, 4 knee surgeries since November
- Location (Geographic and on body): eastern US, knee
- Any existing relevant medical issues:
- aneurysm on ascending aorta, size does seem stabilized
- enlarged prostate
- in the 1990s he had chondrosarcoma in the neck which was cured
- some of the fibula from left leg was actually removed and used to fuse vertebrae in his neck
- had thryroid removed as the result of the radiation treatments^
- Current medications:
- warfarin (new blood thinner, previously xarelto)
- levothyroxine (thyroid)
- alfuzosin (prostate)
- losartan potassium (blood pressure)
- testosterone injections
Sequence of events:
- 2018 - My dad's knees were just worn out after an active life. No cartilage left, bone on bone, can barely walk anymore. He wanted to get them both replaced, so he could continue being active and independent.
- November - TKA on left leg. He was not taken off of Xarelto (blood thinner) so there was a tremendous amount of bleeding and swelling during/after the operation. He was in the hospital for a week and had a very long recovery. Extensive hematoma running all the way up to his waist and private parts, all black. Massive amounts of swelling, so much so that the incision wouldn't heal. He was in REALLY bad shape for several months. This was very unexpected.
- February/March - Once he finally got things under control, the patella came lose and was dislocated.
- April - This required a revision surgery. The recovery from this was a little better, but he was still in the hospital for a week
- late June - He finally seemed to be doing pretty well and could walk around.
- Early July - Then suddenly a switch flipped and there was a massive relapse in one day. Unable to walk, confusion, excruciating pain, extreme swelling of knee. Doctors aspirated the knee and determined there was an infection. On approximately July 9th he had a surgery to wash-out the joint.
- Suspected pathogen: staphylococcus aureus, but it could be anything. They were unable to tell me.
- Initiated IV antibiotics for about a week, infection worsening. He looks seriously sick, is demoralized. Doctors say: "the infection is winning."
- July 26 - Docs execute a 2-stage replacement
- After the 1st stage the surgeon says it's one of the worst cases he's ever seen, the infection has eaten away a massive amount of tissue. He has removed the prosthesis, cleaned out the joint as much as possible, and filled it with a spacer and antibiotic cement. Scheduled for 6-10 weeks of antibiotics. Surgeon is not optimistic about being able to cure the infection and install a new prosthetic joint.
If family members weren't there advocating/taking care of him around the clock... I'm not sure what would happen to him......
Worse, I never felt there was an urgency to get this infection addressed. They sent us off for several weeks without an appointment, no doctoring, until we finally demanded to be seen.
In conclusion:
My dad broke his neck when he was young and was exposed to tons of x-rays. It's suspected this was the cause of his neck cancer later in life. Anyways, in the 1990s when he had cancer surrounding his spinal cord he was in big trouble. He had a doctor who was planning to give him the standard chemotherapy treatments. My dad had been doing research in a library, looking up names of doctors, calling them... until he found out about some new technology/techniques being used by a doctor at Mayo Clinic - using a cyclotron. He spoke up about it and it turned out his doctor had studied under the Mayo Clinic guy. He asked the doctor, "where would YOU go?"
The doctor said, "I'd go to that guy...."
Long story short, he applied for the program at Mayo Clinic and was completely cured against the odds.
This is what he needs for this knee. Where can I find the most advanced care, the most experienced infection guy & surgeon who handles serious cases like this all day long. I don't care how much money it is, I've got to save my dad's leg!
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