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TKR CRPS

JennyI

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Haven't been on the Forum since 2011 when I had a right TKR in the April of that year. I have had severe shooting and stabbing nerve pain in and around that knee ever since. Four years later I had a bad cut on my right ankle which just missed the tendons and which required 15 stitches. Nerve damage? Not sure.

Two and a half years ago I had a right THR followed by continuing numbness and nerve pain. Had a minimally invasive laminectomy last year after 57 years of back problems, followed three days later by a further spine surgery due to a hematoma that spread up and down 4 vertebrae from the surgery site. My quality of life has not been great. I go to a Pain Management Clinic at our local hospital. They now think I have CRPS (Chronic Regional Pain Syndrome).

My question is - has anybody had continuing nerve pain from their TKR's that has developed into this condition? If this is not the correct forum Josephine, please let me know.

#crps
 
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alexthecat

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I'm sorry you're still having such difficulties. There have been a few Bonesmarties with CRPS. I've added that hashtag to the end of your post. Do you see it? If you click on it, you'll see all the posts about that topic. I'll also tag @Josephine to advise you.
 

Josephine

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Sounds to me like the Pain Clinic is right. I see the hashtag has been put in your post - if you click on it, you will get a list of all the threads where this has been mentioned.

We also have an article about it Complex Regional Pain Syndrome (CRPS or RSD).
 

maryo52

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Nerve issues are thorny. I developed neuropathy in my feet after my original TKR. It slowly progresses and I have a med to dull the symptoms but nothing that changes anything. I hope the pain clinic proves to be of help.
 
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JennyI

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Thank you both Josephine and Maryo52. I have done as much research as I can on CRPS. From what I understand, this should have been dealt with years ago in order to get a better outcome. I have been on nerve pain meds for years and they are now going to switch me to a different one (been on both Pregabalin and Gabapentin). The neuropathy starts from the L3 down past my THR and down to around my right knee and occasionally I get stabbing pains where the injury was on the right side of my ankle. I have gone from a very active person to a hobbling woman who cannot walk that far, cannot sit or stand for too long, and cannot lie down for too long - all extremely frustrating, and painful. I am sorry for venting here. Just wanted to know if others who have had TKR'S and THR'S, have ended up with CRPS. Once again thank you, I will look up the threads and the article.
 

maryo52

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My sympathies. Now that my knee has had a few weeks to heal, my greater problem is once again my neuropathy. It is very very frustrating (and maddening). You have every right to vent.
 

Widget1

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JennyI...

I'm sorry that you've had to endure the nerve pain for so many years. :(

This is my first time back on the forum in 4 yrs. I had a left TKR in May of 2015. The surgeon had to cut off more of my femur than normal because of extensive damage. He adjusted the hardware so that my legs are both the same length. Almost immediately during recovery I had pains that felt like a heated fireplace poker was being shoved up my left leg & couldn't tolerate anything touching my knee (even a sheet).

After a couple of months I was tested & diagnosed with CRPS Type II. A specialist did RFA every 6-7 mos. (when nerves regenerated) and I had some relief. I also took Gabapentin every day. The Doctor said I could go under anesthesia every 6-7 mos. for the rest of my life, but asked if I'd consider a spinal cord stimulator.

I had the trial & it was great, then had the required psych eval & other tests. In June of 2017 the spinal cord stimulator was permanently implanted (generator implanted in back below waist on right side & wires went to T8). That was a miracle to me, because my quality of life had been restored and that was a huge change for my life. During a hurricane in September of 2017 the sideways wind with rain caused me to fall on cement & land on both knees (I was trying to help some elderly evacuees). The left hardware was fine, but I injured my right knee/leg. By November the CRPS had moved to my right leg & since the stimulator is for lower extremities, the neurosurgeon reprogrammed it in December 2017 to cover everywhere from waist to bottom of both feet.

When I have MRIs, I take my patient controller with me, flip the button to MRI (which shuts off the stimulator) & the radiology tech snaps a photo for verification & adds it to my file. There's another button for surgery & when I had surgery in June I did the same thing before anesthesia & the tech took photo for verification. Whenever I fly I show TSA the card showing I have an implanted neuroelectronic device & so I bypass the normal line & then always have to have the full body patdown. Since I chose the smaller of the 2 models available my battery will run out of juice anytime between 2020 & 2022. I'll go back to the neurosurgeon & he'll take out the unit & put in a new one, but the leads going to T8 won't have to be replaced.

The spinal cord stimulator has saved my life from the never ending bad nerve signals & since there's no cure for CRPS, I'll be forever grateful to the specialist who suggested it to me.

#crps #spinalcordstimulator
 
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Jamie

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@Widget1 .... thank you so much for the detailed information regarding your successful use of the spinal stimulator for your pain. I can't recall that we've had anyone on the forum who used one and certainly no one who provided exactly how it worked as well as you.

I'm going to tag @JennyI in the hopes she will get a message and come read your post.
 

Widget1

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@Jamie

Thanks so much for tagging JennyI & adding the hashtags to my post!

I want to add that my SCS is a St. Jude Medical (now Abbott) Proclaim & is programmed to have one minute of pulsing then one minute off 24/7. Sometimes I can feel the fake pain signals during the one minute off time, but that's certainly tolerable for me instead of having debilitating fake pain signals every minute of every day.

If I lie in a certain position on my back I can feel the faint tingling going up & down my legs, but the rest of the time I do not feel a thing with the SCS. I was given an iPod at the hospital when the device & wires were implanted & that's my patient controller. It eliminates my having to carry around a big magnet to be used in emergencies to shut off the generator (& a subsequent call to the neurosurgeon to have it turned back on) & every 6 mos. or so when Abbott does a software upgrade for the controller the upgrade is performed & installed automatically through my wifi (and the Apple updates are done the same way).

#crps #spinalcordstimulator
 
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Jamie

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Thanks for the additional information. It's great to know and I'm so glad this is working for you.
 

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