Leg pain after endocarditis and two AVR's in 2012

[Purdue]

I've posted a few blurbs on the forum after my surgery and researched heavy before the procedure. I have an issue and should very briefly explain the history. Checking to see if anyone else has or is experiencing leg pain.

45 and it was time to replace AA and BAV January 2012. Same surgery as others and no big deal. Developed endocarditis . Mechanical valve was detached 30%, abbess formed, dissection, and my aorta fix was infected. I was checked for infection early on when something felt wrong and cultures were negative. A month or two later, strong signs of infection and so a decision was made to hold cultures for twice as long and a hit...positive for endocarditis. I happen to have a slow growing form of it and the reason cultures did not catch it early on. Cleveland Clinic surgery in late June to basically save my life and now I have a homograph / cadaver valve. Recovery has been good and it "feels" like just a big open hear surgery. Big meaning two in four months and I expected and still expect recovery to take a couple of years.

One area I need advice and help is regarding my legs. Ever have shin splints? My legs feel that way all the time and the highest amount of pain when I wake up in the morning. I'm not back in shape so stairs, walking long distances, traveling, etc. wears me out and I feel the muscle burn. That feels normal and is improving with time. What's not going away is the shin splint type pain from my ankles all the way up to my hip area. All is very good with my heart and valve and the echo showed that I look normal for what I went through.

Removed / replaced meds to see if that was the catalyst. No luck. Advice so far is it might be damage from the endocarditis and I'm lucky if that's all it is. I hear stories of major organ problems from endo and I don't seem to have that. Anyone else experience this?

 

[missaviator]

Did you develop endocarditis before or after the surgery?

My story with leg pain and endocarditis: I developed endocarditis probably in November of 2003, on my Aortic valve...long story short, Christmas Day I could no longer walk on my leg....The vegitation from the endocarditis literally dropped down into my leg. During my heart surgery they tried to do also go in through my groin artery to try and pull the vegitation out, but they didn't find anything. The doctors said my body would create new veins, which it did, but my left leg definitely still gives me pain from walking/running for long periods. I think it is nerve damage...

Not sure if your problem is the same but could be a possibility.

 

[Purdue]

First surgery to replace a BAV with a mechanical valve. Endo developed and "trashed" the aorta graft and mechanical valve so a second surgery four months later to get me back in order. Cleveland Clinic for the second operation and they had to scrape a lot of area to clear out the infection (Lars Svensson's work and we highly recommend him). I do remember the time I think my valve detached or the area around it dissected. Weird and for those who have experienced it, you do get a feeling of death. I'm the polar opposite of doom feeling and there must have been a chemical dump when the valve detached. The other weird episode is my vision rotated 90 or so degrees while I was driving myself to the hospital. Had to pull over...it was a mess looking back on the event. I have not requested checks on my legs yet and wonder if vegetation broke off and landed somewhere? Pieces not large enough to end life but enough to alter normal life (vision and walking / leg pain). Don't know and this is my start to find information. Multiple ER visits prior to Jan 2012...open heart Jan 2012...open heart June 2012...long course of home antibiotics...long heal time up to now with three visits to Cleveland Clinic for follow up. I'm very busy with a fun job and just want a break from docs / visits / tests / etc. for a bit. Routine colonoscopy letter came in the mail a month ago and I said no way. I joked with my wife and said I'm in a quiet mode for a bit and no trips to anywhere. My leg pain is very heavy in the morning after sleeping. 50% of that pain throughout the day and ibuprofen really helps. From my shins to my hips and as mentioned before, deep ache like a shin splint. Activity can make it feel worse but I think it's regular muscle pain combined with the constant described pain. The two pains together after a walk as an example and I assume the second pain will float away as I get stronger and more active. Just my guess. Thanks for your information. Something is off and maybe it is nerve damage or other? I have edema and pitting on my legs and the right one far more than the left.

 

[newmitral]

Hi Purdue,

Here's my story, and perhaps it might help you direct your diagnostics.

While not exactly the same problem, I had something similar. I had bacterial endocarditis that attacked my native heart valve and required emergency surgery. I was kept alive with an arterial pump for several days until they could perform the valve replacement OHS. After the surgery, my right foot was in substantial pain. I had no significant pain from the heart surgery, but my foot was never right. While in the hospital recovering from the OHS, because I complained about the foot pain, they did an ultrasound and an X-ray of my leg/foot, but did not find anything, and dismissed it as some sort of sprained foot.

Even after months of recovery from the OHS, I could not walk more than a block without the pain in the foot and calf of my right leg becoming excruciating. I raised this issue with my cardiologist at my 3 month post-surgery checkup, and he scheduled me to see a vein specialist. The vein specialist did a test called an Ankle Brachial Pressure Index (ABI) where the blood pressure is measured at various points in both arms and legs. This test clearly showed a blockage in my right leg just below the knee. It turns out, there was a a blockage in the artery of my right leg with a mycotic aneurysm caused by the bacterial vegetation from the endocarditis breaking off and traveling to the artery in my leg, blocking blood flow to my lower right leg and foot.

As indicated by "missaviator" above, my body did indeed make a few extra blood flow paths to attempt to bypass the blockage by itself, which reduced the pain in the leg a bit, but after 6 more months of waiting, with minor improvement, the pain was still very bad if I walked more than a few hundred yards.

I eventually had to have a second surgery on my right leg to take part of the saphenous vein from my right thigh and bypass the blocked artery in my lower leg to get proper blood flow restored.

I would ask to see a vein specialist and have the ABI test performed to see if there is indeed any indication of any arterial blockage. If so, they can locate the trouble spot and take whatever action would be required.

Good luck.

 

[missaviator]

Hi Purdue,

Here's my story, and perhaps it might help you direct your diagnostics.

While not exactly the same problem, I had something similar. I had bacterial endocarditis that attacked my native heart valve and required emergency surgery. I was kept alive with an arterial pump for several days until they could perform the valve replacement OHS. After the surgery, my right foot was in substantial pain. I had no significant pain from the heart surgery, but my foot was never right. While in the hospital recovering from the OHS, because I complained about the foot pain, they did an ultrasound and an X-ray of my leg/foot, but did not find anything, and dismissed it as some sort of sprained foot.

Even after months of recovery from the OHS, I could not walk more than a block without the pain in the foot and calf of my right leg becoming excruciating. I raised this issue with my cardiologist at my 3 month post-surgery checkup, and he scheduled me to see a vein specialist. The vein specialist did a test called an Ankle Brachial Pressure Index (ABI) where the blood pressure is measured at various points in both arms and legs. This test clearly showed a blockage in my right leg just below the knee. It turns out, there was a a blockage in the artery of my right leg with a mycotic aneurysm caused by the bacterial vegetation from the endocarditis breaking off and traveling to the artery in my leg, blocking blood flow to my lower right leg and foot.

As indicated by "missaviator" above, my body did indeed make a few extra blood flow paths to attempt to bypass the blockage by itself, which reduced the pain in the leg a bit, but after 6 more months of waiting, with minor improvement, the pain was still very bad if I walked more than a few hundred yards.

I eventually had to have a second surgery on my right leg to take part of the saphenous vein from my right thigh and bypass the blocked artery in my lower leg to get proper blood flow restored.

I would ask to see a vein specialist and have the ABI test performed to see if there is indeed any indication of any arterial blockage. If so, they can locate the trouble spot and take whatever action would be required.

Good luck.

WOW! SAME HERE!!!! Just in my left leg. My doc said we can do a surgery...lol but I have been able to deal with the pain, as it isn't severe.

 

[newmitral]

WOW! SAME HERE!!!! Just in my left leg. My doc said we can do a surgery...lol but I have been able to deal with the pain, as it isn't severe.

My advice is to avoid the leg surgery if you can stand the pain. Although I can now walk without pain in the leg, it has been 14 months or so since I had the leg surgery, and I still have some numbness and swelling in the leg from the surgery that I did not have before. For me, it is a positive tradeoff, because my leg pain was very bad and it interfered with my normal activity. There was also a risk of the aneurysm bursting, with obvious negative consequences.


I still consider it lucky that the endocarditis, when it embolized, went to the leg. This is actually quite rare, as it more often goes to the brain causing stroke, or somewhere in the arteries within the torso where the blockage becomes life-threating.