CRPS and Surgery
Posted , 5 users are following.
I was diagnosed with CRPS II about 12 weeks ago. My orthopedic is wanting to do nerve decompression surgery. Has anyone had this proceedure done? I am nervous about it.
0 likes, 12 replies
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Notes on CRPS and Surgery
eva96035 ashley0710
Posted
Ashley0710 , No I haven't heard of anything like this yet, but my son hasn't has CRPS, that long yet but I will tell you something you could do and apparently a lot of people do get on YouTube and do research and publish things about CRPS, so it's possible that someone has heard of it but just type in the procedure and if it's been heard of someone will be on there with it I hope this helps and when you find out something keep us informed with what you find out and if you do it or not. I think people with CRPS need something to stop the pain or at least considerably help. I've seen my son go through so much and it breaks my heart that there's nothing you can do as a bystander to help. I feel helpless to see him go through what he goes through and knowing that there's nothing I can do as a mother. I wish you all the best .
glxpassat ashley0710
Posted
First off... Sorry about your CRPS II diagnosis. I was also diagnosed with CRPS II. Im not sure if nerve conduction is the same as nerve compression test. But i had the nerve conduction test and had no idea needles were involved. I had almost 20 which as the doctor stated "it feels like getting the flu shot." it wasn't pleasant at all. So hopefully you are getting something different? But it is a relatively quick procedure. Wish ya the best.
ashley0710 glxpassat
Posted
glxpassat ashley0710
Posted
Ohhh... so they are both completely different? I'd heard people mention these test, but it almost sounded while describing them, they were in-fact just another name for nerve conduction test.
I'll be interested in the results, if you in-fact get it done!? I'm still learning about this dreaded diagnoses! I've recently had the spinal cord stimulator installed, but its interesting that generally "surgery" can worsen the condition, however it's also geared for CRPS sufferers... Simply over whelming, and not any good data to reflect statistics of helping those with CRPS?
ashley0710 glxpassat
Posted
glxpassat ashley0710
Posted
Its been amazing for me! I can now walk where as before it hurt to walk, and I hobbled with a cane. The other day I hiked a 3 mile trail 😛. I still have to take tramadol, but with the stim and meds I can have painfree days.
I've been having a so-called flare-up, but its only been one really bad day, and pain throughout the day, but I'll go half a day without pain (nerves are so weird). I was in a really bad ATV accident 3 years back; severely breaking my right leg. So i have problems from my knee down, to middle of the foot, which is my right side. I also have sciatic issues. But they didnt come on until after my second surgery 9 months. Don't understand any of it.
I have whats called the "cold" CRPS, which the "hot" form of CRPS is really common. I get where my leg feels cold, and feels as if my circulation is cut off with weird bumps. I've not really ran into anyone that experiences this form, and there isnt a lot of info but the basics.
eva96035 glxpassat
Posted
glxpassat, My son also has a cold feeling in his leg when he's having a flare up. Are you real sensitive to temperature ? For instance my son does foot soaks and when me or his Dad makes up his water sometimes he will say that the water is hot when it will be more cool than anything do you have that ? He also has Tremors in his right hand especially, Do you have either of these problems ? Keep us updated so we know how your progression is.
glxpassat eva96035
Posted
When my leg gets that way, i put on a compression sock, and for me helps make me more comfortable. I only experience discomfort like for example, i'll wade in the river, the cold can be unbearable... But that could be the aching from mey previous broken leg. It was severely broken in 3 spots... So I'm not sure if its CRPS related or simply from previous broken bones? I haven't noticed tremers like some suffer; which is probably a good thing? Does your kiddo get unbelievably fatigued? I get so tired when things are acting up, i can hardly do anything but sleep. I'm really stressed about starting to find work starting the first of next year? Not sure how I can function? Since getting the spinal cord stimulator, I now have pain free days. But i never know when I'll have a flare up? It all just is so devestating, and i really feel for your kiddo!
ashley0710 glxpassat
Posted
I also have "cold" CRPS. My right foot has very little circulation to it. It turns purple/blue all the time and have tremors in my pinky toe. Feels like it has a mind of its own. I do an epsom salt foot soak just about every day. When my husband fills the bucket up for me it is 90% hot water. I can feel a little of the heat from the water but not too much.
glxpassat ashley0710
Posted
It's nice to hear that other people have the "cold" form of it. I hear everyone talking about the burning hotness and such, but never others expressing the cold 'feels like my circulation is cut off' CRPS. When my leg gets like that, putting on a compression helps ALOT! Have you tried that?
browneyes58 ashley0710
Posted
Ashley,
It always breaks my heart when someone new is diagnosed with CRPS, this disease from hell!
I've never heard of this surgery your Dr wants to do and I've had this 4+ yrs and have searched and am on a lot of different on line support groups. CRPS patients pretty much avoid surgery at all cost because it can cause the CRPS to spread to other body parts and/or organs. It happened to me! I had it in my left leg and foot and had to have surgery on my lumbar to prevent me from being paralyzed, and the surgery made it spread to my right leg, foot and waist line.
My orthopedic surgeon did say there was a surgery where they go in the front of ur body and cut the sympathetic nerves, but advised against it because they grow back and no guarantee how long before they would grow back. He thinks the risk of spread is greater than any relief from cutting the sympathetic nerves. Cutting the nerves brings symptoms of its own he said, such as, instead of ice cold feet, they would be hot. I already burn terribly! Also, he said I wouldn't be able to sweat. Well, since I pour with sweat all the time, this sounds good to me, except not being able to sweat would bring problems of its own. Sweating is our bodies way of cooling down. Without out that, not sure that would be better than sweatig all the time.
So, I guess you just have to weigh the risk, as with any surgery. In my opinion, if this was a good option, all CRPS sufferers would be breaking down the hospital doors to have it done. And with ALL my research, I've NEVER came across anyone that has had it done.
As others have said, find a Dr that understands CRPS, which is a miracle in its self. Dr's may know of CRPS, but very few know what to do with it except throw lots of prescription drugs your way!
My pain management Dr has sympathy, but is not on the cutting edge of trying new treatments. He just treats the symptoms and not the cause. From my research, you have to go over seas to find Dr's trying to really help their patients find solutions. There are a few Dr's across the US that specialize in on going research for CRPS. You can Google RSD/CRPS and find some videos of some Dr's that are really trying to find a cure, but most of us can't afford to run all over the country to these Dr's, that are few and far between. And if we could, our bodies stop us in our tracks! Travel is one of my flares!
So sorry we can't be of more help......as I said, CRPS is from the pits of hell and we burn like we're already there.
My faith in God, Jesus and Holy Spirit is my salvation. Without them I would have lost my mind!
Praying you can find a good Dr and some relief from this horrible disease!
Browneyes
cari49090 browneyes58
Posted
Hi, My name is Cari and I was diagnosed with CRPS in 2009 after I had rotator cuff surgery.
Fast forward to 2014, I shattered my foot and had to have plates and screws put in to repair it. CRPS once again made my recovery excruciating.
March 2015- Gallbladder surgery and am still having pain.
Now I need ACDF surgery for my neck issues and am not looking forward to the recovery process.
The reason I responded to your discussion is that my pain management doctors have been doing research using Low Dose Naltrexone (4.5mg at bedtime) to help CRPS patients.
I didn't qualify for the study because I have CRPS in more than one place in my body.
However, doctors seem to agree it is a very safe drug to prescribe. The only side effects I was warned could happen, was vivid dreams.
I have been taking it for a year now and am happy to say that I am in alot less pain than I normally was before starting it.
I hope you are able to talk to your doctor about it to see if they know about it's use for CRPS and inflammation.
Good luck!