Massive stroke (brain trauma) in '91 causes RSD. so there I am in rehab hospital trying to rehab stroke when one day about a month later, I feel like a million scalpels are slicing me up. Hello, RSD!

Sparing you all the gorey details in between, fast forward 2 years. Toes of R foot permanently contracted so it feels like I'm walking on abscessed teeth. due to lack of health care insurance, my RSD was at this point, UNDIAGNOSED.

Podiatrist solution for toes contractures was to saw off all the toe joints, and insert steel pins for 11 weeks. The RSD which first arose with hand/arm/shoulder and the scalpel- slicing allodynia, now exploded in my right foot. When I had to go back to the podiatrist to have the stitches removed, I was screaming bloody murder! And there were a lot of stitches!

Fast forward a bunch of years- I went into REMISSION!

Fast forward to now, maybe 6-7 years into remission, the second toe which has had end joint broken off all these years gives me unbearable pain walking. The bone is about to poke through the skin. PM doc has changed her mind and doesn't see what else can be done EXCEPT AMPUTATION!



Looking around here and reading all your reports has reinforced my being too afraid to risk the RSD coming out of remission and destroying what's left of my life at 75 years and counting!

What are your thoughts?

"Amputation is totally unnecessary and should never be performed." Page two of the linked pdf. So sorry you are struggling with this!

http://www.rsdrx.com/Spread%20of%20CRPS.pdf

ps... This is an excellent read about spread and CRPS in general.

I would have lots more questions to ask of P.M. Dr.:

Even if you didn't have CRPS how would you be better able to walk without that toe? Would you have extensive physical therapy to kind of learn to walk again?

Vrae is probably right that it shouldn't be done at all but I'd ask If amputation was performed
what methods ie: nerve blocks would be used to prevent a flare up back to square one of monster CRPS?
If that happened it would be nearly impossible to walk due to extreme pain
anyway & that's where you are now.
Is there a certain age past where it's unlikely to come out of remission?
I mean say for children, it's more rare to even get CRPS/RSD but they also have
far greater chance of remission (as it should be).

Yes, the foot has already experienced all the stages of RSD so it would not be a spread but a re-ignition of the firestorm. And PM doc said Ortho could do nerve block, but he doesn't seem too familiar with RSD, so obviously I'm thinking, they won't be the ones dealing with the pain and fire.

A body part once a focal point of RSD after surgery on that part,
RSD now in remission, but,
Could YOU, would you, risk another surgery on that spot?

I am so afraid.

Has anyone here ever reported good results with a second surgery in this situation?

At 75, my chances of remission may not be as good as I also have more health issues now.

Darn it! Too tired, spaced and lost my post. Yes! I lost a toe 12 years ago with extreme RSD because 12 fractures would not heal. I was blessed that it did heal... completely blessed. Blocks, treatments and lesser surgeries did not help. I was in a W/C to rest for 6 months. However!! As has been said, amputation is not recommended, just last last resort. I would search for good extra opinions. Major medical centers usually deal with larger volumes of patients with our condition whose cases tend to be more severe, so I would start there first and ask ask questions.

Prayers for your health and a good outcome!

Hana

Thank you, Hana. Did you have RSD before that surgery? In that foot?

Amp would be last resort as the toe has been broken since '93. The end joint is now upside down and bone about to poke through skin. makes living, esp. Walking very difficult and painful.

How did you make sure it didn't erupt into everlasting fire after surgery?

I wonder at your age ,if you should have it removed..It might help you walk better without that pain!!!..Its really a hard position to be in..My heart aches for you..it may take pros and cons to deside..I hate the thought that rsd might flair back up..its a terrible monster..you should really talk this over and ask questions..good luck.I will pray for you..

Thanks moosey. That's exactly what I'm looking for here where more people know from experience what might happen, much more so than the doctors, who of course cannot guarantee anything. My mind keeps going back to what happened to my foot after all the joints were removed. Horrible!

It's either chance the very high risk outcome or live in such a limited way.