I got bad news today
 

When I fell a few weeks ago, we thought I re-broke my foot, but it turns out that the first metatarsal fracture never healed. Yep. Come to think of it there never was another imaging done to check.

Which means, in order to really be able to get 100% of whatever my functioning is going to be able to be with CRPS I'm going to need surgery. Except surgery with CRPS is highly likely to cause a flare. But not having surgery is highly likely to leave that area in my foot in more pain and less stable. Catch 22.

So his suggestion is to keep doing the PT and desensitiztion I was doing before until I reach a point where I'm not improving anymore. Then do the surgery. Knowing that I WILL have pain and being prepared to manage it. And then after that, with PT, I should be able to have better functioning than I did before.

He says he needs to go in and scrape off the "bad bone" and then put in a pin.

AND it validates that the pain I continued to feel there that I was told is healed and is just my faulty nerves isn't. It is real pain from a never healed injury.:mad:

The protocol in The Netherlands has always been, if there needs to be surgery because of a broken bone, that NEEDS to happen foremost and primarily. The CRPS takes a back seat to that. Healing the initial injury is key in helping the CRPS! If you leave something unhealed, it aggravates CRPS is their theory.

And I agree with that.

They do need to make sure to pre-treat in case of flares. But that is all up to your doctor.

Anyway, I hope you get time to heal, be well! :D And get better!!!

Preventing the Development of Complex Regional Pain Syndrome after Surgery | Anesthesiology | ASA Publications

RSD and surgery

Hi Becca,

Don't take this the wrong way because none of us want you to have to through surgery but maybe this is some sort of blessing in disguise. I know you must be so frustrated, but CRPSbe made a good point with the injury making CRPS worse.

Heck you haven't been at this that long, maybe getting the original injury healed is going to be a game changer for you. That would be wonderful! :) What a relief in a way to know you've had a pain contributor all along. I am kind of a nut about follow up imaging for this very reason, but sadly it is sometimes difficult to get.

The article Bio sent looks great and I think between your Stanford team and your surgeon you'll be able to get what you need with anesthesia. Stanford came up with the pre-op neurontin recommendation so they are always looking at ways to decrease chronic pain development. There are all kinds of things they can use, even liposomal lidocaine solution which gets put in the surgical field and the little liposomes open over 3-4 days keeping things calm.

Vit C and Vit D have been shown in studies to help heal fractures sooner. So get those on board.

The one thing I would highly recommend is a conversation with your surgeon about the small cutaneous nerves that run through the skin. The larger of them often get cut during procedures and they really don't have to be. If your surgeon is careful, they can be identified and marked with blue so that they stay in his/her vision. These little nerves can handle some stretch and getting pushed out of the way but they cannot handle getting cut. When I watched videos of nerve repair surgery before my big procedure I saw the surgeon do this and she said it can make a big difference for the patient because they are less likely to form a scar neuroma.

Hang in there and try not to worry too much. Getting you healed is a good, good thing. Hmmm, lucky about that twist and fall after all I guess....:rolleyes:

:hug:

Great advice from 3 people already.

There is hope. You should not have to go into surgery without a good game plan for preventing your worst fears. I really like the first link that Bio sent. It is dated 2004 so there should be more info since then. My brother and sister both had knee surgery, so I asked my doctor what could be done if I ever needed it. He said they have had good results using ketamine along with the anesthesia. I have also been told about nerve blocks. Do your research and talk to your doctors about it.

Here is a link for more peer reviewed articles on CRPS and surgery. You have to scroll down to find the section on surgery. They also give a link and instructions on that page for pubmed peer reviewed articles.
Peer-Reviewed Journal Articles About CRPS/RSD and Related Syndromes | RSDSA

Good Luck and remember that there is hope.

Thanks for the articles! Very helpful info. Certainly agrees w/what doc said about getting going on PT and desensitization and working to get as "well" as I can before any surgery.

So sorry to hear about the injury, always a scary thing for us. I saw a neurologist at University of Michigan in August and he told me that if I ever needed surgery to take vitamin c for 5 days before the surgery and 50 days after to prevent spreading of the CRPS. I don't remember the amount he suggested. I will do some searching and let you know. I know it sounds simple but he was sure it would help. I will get back to you with the dose. Hope you feel better soon,😁

It looks like 500mg to 1000mg would work. I believe that vitamin c is excreted in the urine and isn't stored in the body so there is no need to worry about overdose but I would ask your surgeon or PM which dose would be best. I really hope this helps, best wishes😀

Yes, theoretically you can't ever "overdose" on vit. C, you just pee the rest out (expensive pee LOL). But you have to always consider the kidneys. So... I'd not go crazy.