[Yosh89]

Hey everyone,

I've had CRPS for 2 yrs now. Both my big toenails are ingrown and it's causing even more pain and bleeding. The doctor at the hospital put me on antibiotics as he said he would not perform surgery if it's infected. I did mention to him that I doubt the antibiotics would rid the toes of the infection, and it turns out I was right. He's going to go ahead the surgery anyway, cutting the sides of the tow (which have almost engulfed the nail itself) and then cut the nail in a way so it won't grow back.

I have the type-II CRPS so I'm wondering if it's too risky to go for surgery, or, as in my case, the CRPS is as a result of nerve damage so I'm thinking that surgery couldn't cause anymore pain that I already have.

What do you think? I always hear surgery is a definately no-no with CRPS patients but if my toes are constantly infected, I hear stories of patients where they've had to have their whole leg removed because of the infection spreading?

[KathyUK]

Hi Yosh, nice to meet you and sorry to hear about your feet problems, that must be incredibly painful.

The decision is a tough one and only you can make it. I'm having to consider foot surgery too but not from the infection side of things. I suppose the risk of CRPS spread is already there for you given the nails are ingrown and infected so maybe that will help you decide. I'm sorry as I have no clue as to what other options are available but perhaps you could look into the ways of safeguarding against spread for unavoidable surgeries? xx

[Yosh89]

You have CRPS and are having surgery?

[KathyUK]

Originally Posted by Yosh89

You have CRPS and are having surgery?

It's certainly looking that way yes. I have heel problems that are making my already poor mobility worse. They are not the original problem, which is my spine and legs. I have CRPS confirmed in both thighs, groin and lower back with potential CRPS in both feet too. I also have degenerative disc disease and radiculopathy with sciatica mostly in my right side from an old herniated disc. I have recently been referred to a podiatrist for the heel issues and have been warned it is likely I will need surgery. I have tried all the conservative measures and although I am not happy at the thought, if I need it I need it. I've already decided to go ahead with an SCS trial in future anyway although I am happier with the level of risk involved in that as I already have CRPS in my lower back. Life's full of risks, it's about weighing up the what ifs against the what if you don'ts. To me anyway. In your situation I personally would be worried but go ahead as you have a definite and potentially life shattering 'what if I don't'. That said I totally sympathise with your worry about it and only you can make that choice by exploring all options and risks involved and looking into the preventative measures xxx

[AZ-Di]

As usual I'm a little late to the discussion. In my opinion Tessa has summed it all up pretty well for you.
I also take Vitamin C every day to help prevent spread. I've been told that maybe nerve block(s) directly before and after surgery is preventative as well. I have had this same dilemna over having a colonoscopy and that doc. summed it up pretty well for me. He said "the RSD will not kill you, at least not directly, but colon cancer would." So, your other foot problems could over take your abilities anyway. It's such a hard and personal decision.
I just finished my SCS trial and believe me I'm worried about the "spread" issue on that as well. It was agonizing just trying to decide on the trial. It's frustrating that there are just no guidelines or prognosis on this disease!!!

According to the Specialists at Bath Hospital a spread is almost inevitable however US paper published in 2000 and others since have said the use of pre-emptive analgesics prevents spreads and I have read a paper by one US doctor cliaming 100% sucess rate by using a continuos full sympathetic nerve block. I would suggestion you talk to the surgeon about this.

[zookester]

Originally Posted by Yosh89

Hey everyone,

I've had CRPS for 2 yrs now. Both my big toenails are ingrown and it's causing even more pain and bleeding. The doctor at the hospital put me on antibiotics as he said he would not perform surgery if it's infected. I did mention to him that I doubt the antibiotics would rid the toes of the infection, and it turns out I was right. He's going to go ahead the surgery anyway, cutting the sides of the tow (which have almost engulfed the nail itself) and then cut the nail in a way so it won't grow back.

I have the type-II CRPS so I'm wondering if it's too risky to go for surgery, or, as in my case, the CRPS is as a result of nerve damage so I'm thinking that surgery couldn't cause anymore pain that I already have.

What do you think? I always hear surgery is a definately no-no with CRPS patients but if my toes are constantly infected, I hear stories of patients where they've had to have their whole leg removed because of the infection spreading?

In your shoes this is what I would think about in regards to this surgery. If the toenails are affecting your ability to be mobile and causing infection then I would think the benefits of this surgery far outweigh the risk of spread. Remaining mobile is the best therapy for CRPS of either type so that to me would be important. Since you body is already being "injured" from the ingrown toenails then this is also a risk of spread and as far as you mention in your post that has not happened yet.. so I would most certainly go forward with the surgery. There are preemptive anesthetic protocols that can be followed in order to also reduce the risk of spread from surgery like epidural anesthesia rather than general. 500mg of vitamin C should be a daily regime now and after surgery.

It is my understanding that the risk of spread when there is a clear surgical need is less when CRPS is not in an acute flare. I hope this is the case with you. Is your CRPS in the foot; this can also make a difference.

Everyone is different and responds differently to injury/surgery and I do hope that you response whichever way you decide is favorable!!

Wishing you a speedy recovery,
Tessa

[Yosh89]

Originally Posted by zookester

In your shoes this is what I would think about in regards to this surgery. If the toenails are affecting your ability to be mobile and causing infection then I would think the benefits of this surgery far outweigh the risk of spread. Remaining mobile is the best therapy for CRPS of either type so that to me would be important. Since you body is already being "injured" from the ingrown toenails then this is also a risk of spread and as far as you mention in your post that has not happened yet.. so I would most certainly go forward with the surgery. There are preemptive anesthetic protocols that can be followed in order to also reduce the risk of spread from surgery like epidural anesthesia rather than general. 500mg of vitamin C should be a daily regime now and after surgery.

It is my understanding that the risk of spread when there is a clear surgical need is less when CRPS is not in an acute flare. I hope this is the case with you. Is your CRPS in the foot; this can also make a difference.

Everyone is different and responds differently to injury/surgery and I do hope that you response whichever way you decide is favorable!!

Wishing you a speedy recovery,
Tessa

Thanks Tessa. It's in both my feet and they're not in a flare (but I wouldn't really know if it was tbh because of the cocktail of meds I'm on!) - the last thing I want is for it to spread, but as it's type II (nerve injury) I would hope that the likelihood of a spread is unlikely. The only spread I had was from one foot to the other, and that was very shortly after I was diagnosed and haven't had a spread since

Sounds like the surgery is the best option so I'll go ahead with it. Thanks for your advice, I appreciate it x

[zookester]

Yosh,

I also have CRPS II that was a result of several nerves damaged during surgery. I did end up having surgery a few months later in the same area and because the CRPS was not yet diagnosed it did cause spread, but I was in the acute phase and the surgery was directly to the nerves as they were trying to repair the initial damage. Had the CRPS not been missed I would have not had the surgery. I have been told that any surgery to that area will most likely cause spread but surgery outside of the that there is less chance, though still a possibility. Hopefully with your feet they will not be operating near where the initial nerve injury was. I also hope you discuss preemptive anesthesia so that you have the best possible outcome given the circumstances.

God Bless,
Tessa