Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-10-2020, 11:01 AM #1
annabanana123 annabanana123 is offline
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Default Knee Replacement Anyone?

Any one happen to have a knee replacement in a leg that has CRPS? I'm struggling to walk and using mobility aids due to severe knee pain and will likely be advised to get one by ortho and it terrifies me. If you could share your experience I would greatly appreciate it. Or if anyone has had a major surgery like this while on opiates I would appreciate hearing what they did for your pain management post op too. Did you increase your dose, go back to your normal dose or change the med altogether?

Thanks!
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Old 06-10-2020, 06:57 PM #2
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So sorry to hear of your discomfort, I deal with a damaged knee but can't bring myself to a replacement. And I'm older, I'd bet you are pretty young. On your CRPS issue, I don't know how much more damage you have than many others of us. What I can suggest if you can is get a consultation from a Regenerative Medicine MD in your area if that's possible. The larger the area you live, the more of these workers are available.

Here is a link with a smattering of providers and there are more and more entering this world of medicine...so many failed and negative outcomes from these replacements...

Find Regenerative Medicine Doctors - GetProlo.com

As I said a start would be a consultation to see who would do this work for you. I've had it done in other parts of my body and with success in some.
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Old 06-11-2020, 04:35 AM #3
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Hi Anna!

I also have a bad knee, have had 4 microfracture surgeries since 1988. I had stem cell and PRP two years ago which helped a little, but definitely not a lot.

I currently get Euflexxa injections every 6 months and also ultrasound guided Hydrodissection injections (basically a prolotherapy sugar/dextrose solution) every 2 months. All of these injections are covered by my Medicare insurance.
These injections help quite a bit but they can only do so much. I definitely am inching my way towards a total knee replacement.

Scares me too having a replacement of this sort with CRPS but there are some things that can be done to help prevent spread after surgery. Vitamin C supplementation is often mentioned (I take extra "C" right now). Also there are some pre-operative anesthesia techniques that can be done to calm the nervous systems down to allow you to handle the trauma of a surgery with less risk. Snoop around, I'm sure you will find these listed somewhere within this forum and or others. You definitely will want to have a pre-operative consultation with your anesthesiologist prior to your surgery so they completely understand the situation and are willing to work with you.

All the best and keep us posted on your plans!
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Old 06-11-2020, 06:13 AM #4
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Thanks all! I am headed for a MRI this weekend to see what exactly is going on as x-ray was inconclusive but they could see "something." Best case scenario is scar tissue broke off and is causing the issue and can be fixed so we can keep limping along.

I tried prolo therapy and synvisc (I think it's called?) injections as well as cortisone and all failed sadly. Which led to a tibial osteotomy to fix the bone on bone issue which led to CRPS...then the screws started coming out through the skin and surgery #4.

I am young...in my 30s still...but if it will solve my issues for 15-20 years I don't really mind doing it multiple times in my life. I know that sounds crazy but since the tibial osteotomy is worse recovery-wise and did not save the joint I think I can handle it. I was non-weight-bearing for 2 months and didn't drive for about 3 and live in an area where you can't go anywhere without driving. plus 6ish months of 3/wk PT. All with a 8 yr old at the time...
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Old 06-12-2020, 10:51 PM #5
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Default After surgery’s

I have had 8 surgeries on RSD effected limbs what they have done is a post nerv block just before surgery and I have taken vitamin c before after surgery they used different pain medication after like the last 2 times I had shoulder replacement they used tordal and dilad every 4 hours while I was in hospital then when I when home they used different pain medicine that I was not taking before on till I did not need the stronger stuff from surgery then I went back to my normal pain medication for my RSD and I had to get booster nerv blocks bone to keep the RSD under control hope this helps.
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Old 06-15-2020, 09:58 AM #6
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That does help! I just want to know what I'm in for if I have to/decide to go this route.
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Old 06-16-2020, 06:39 AM #7
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Hi
I was scheduled for TKR when Corona hit and all was cancelled. I need to have both knees replaced. Now that wont happen until next year. My Ortho is very knowledgeable re CRPS and so is the anesthesiologist. The plan was, and protocol dictates, to use ketamine as part of the anesthetic during the surgery. After the surgery they place a nerve block that should last for 2 to 3 days. Then some kind of oral pain pills are used (depends on surgeon). I agree with the prior suggestion re vit C and talking with anesthesiologist prior.
I have done injections in the past to delay TKR but when the mechanical problems start to build the injections are less effective. My Ortho put it to me like this, "maybe your knee is acting as a pain generator for the crps" It is a big surgery and there are certainly no guarantees with CRPS. All you can really do is follow the protocols and hope for the best outcome. I hope it will bring you relief of your pain.
Barb
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Old 06-16-2020, 01:22 PM #8
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Barb, if you are talking about injections as being the cortisone kind, the more one does the more damage one gets, they break down more joints. The TKR are a major surgery...good wishes and hope it's all worth it.
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Old 06-17-2020, 10:01 AM #9
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Has anyone tried the hyaluronic acid injections in your knee? I'm considering it as a way to hold off on surgery for a bit.
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Old 06-17-2020, 10:05 AM #10
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Default Injections

My Ortho in the St-Paul they will not use cortisone they only use tordal is safer and doesn’t do damage to the joints. I have had it done and believe it works better and it lasted longer.
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