Freaking out-long post
 

I felt confident about my surgery scheduled for 2 weeks to get hardware removal staple and screw after talking with surgeon and new pain doc. Now I am freaking out. Dec 2013 I had foot surgery was non weight bearing 8 weeks. Foot swelled 12 plus weeks, was pinkish purple 8 weeks, cold to touch no abnormal pain though. Began complainin something not normal to surgeon for several months he said all was normal. Big toe nail stopped growing period of time. Mild burning big toe and over incision.

Sept 2013 9 months post surgery foot color normal no swelling of pain greater 2. Saw pain doc for possible rsd. He spend a couple of minutes with me said no rsd.

Nov-Dec did physical therapy improved flexibility.

Feb saw neurologist and new pain doc prescribed gabapentin 1200 MG over time. Neurologist no diagnosis. Pain doc unlikely rsd saw pictures of foot and pain log still said no rsd.

Saw new podiatrist no rsd, did 2 cortisone injections heightened nerve sensativity increased pain redness no explanation.

Saw pain PA not rsd.

Saw 3rd podiatrist rsd doubtful. Talk of hardware removsl. Had emg negative no increased symptoms with test.

Saw 3rd pain doc reviewed my pictures and notes thought maybe mild rsd. Examined foot thought less likely rsd. Bone scan abnormal around hardware but radiologist listed hardware, fracture or infection less likely rsd.

So scheduled surgery now I am wondering if I am m as king mistake. Pain/sensation is livable now but is getting worse.

My gut says rsd but doctors aren't convinced. My stress level is thru roof. Ankle sore feel quick electric shock throughout left body mostly knee down starts afternoon thru evening. Only pain is when push hard on hardware site and left big toe possible bone spur pushing on nerve c as using hypersensitivity. Foot color normal, no swelling. Some throbbing.

At what point do I trust docs or go with gut. I have already postponed surgery once for last pm assessment.

Have not had any treatment besides pretty and gabapentin. No nerve blocks.

Surgeon said if in pain sat after surgery or Monday he would call pain doc for immediate block not sure if that would be enough.

I can talk myself in and out of rsd. Bone spur and hardware but that doesn't explain coldness first 2-3 months post surgery do doubts cone back.

Thanks for listening.

A block should be done prior to surgery, not after. Ketamine can also be used as part of your anesthesia to calm things down.

Maybe consider another opinion before moving forward?

Hi Blue,

Your anxiety is perfectly understandable. If you are going to have surgery though it needs to be under control. Having your adrenaline levels up and your sympathetic nervous system charged up before surgery is not a good thing.

Only you know how livable this pain is. You have been having a hard time with it a while though or you wouldn't be here and you wouldn't be considering surgery. My concerns for you are the electric shock feeling and the thought that there may be bone spurs on the nerve. Bone spurs will not reduce on their own and there could be some arthritis caused by the hardware that makes those more prone to growing. If you are worsening then it makes it sense to go ahead.

Did you ever get a simple lidocaine injection at the point of maximal pain? Perhaps you could try that and see if numbing the area you think is a problem even makes a difference. The ketamine during is helpful like LItLove said and 900 gabapentin pre-op and minocycline for a week after reduce the chance of chronic pain.

I think ultimately you have to listen to your own wisdom. It depends on how uncomfortable you feel about having the procedure. If you are currently getting a strong no on this but go ahead and don't have a good outcome you may really beat yourself up over it. Try a little lido first. Put it off if you need to until you have a better idea if the pain is really worsening or if it is just a bad few days. Going into the OR conflicted and nervous sounds uncomfortable. Or maybe you just need to voice these your concerns and get in a more settled place with it and can go ahead. Trust yourself, breath deep and ask for peace and guidance in knowing what is best for you.

Sending healing love, :hug:

The bone spur I probably had pre-surgery but my toe is now in different position with hardware that is at midfoot, so I think that changed how it affects me and now pinches on the nerve, when I stand flat feet my foot pronates in adding more pressure on the bone spur. Lucky genetics for me both parents have severe arthritis starting in their 40's they mid 60's now with knee and hip replacements so I know that is in my future.

I am 39 with young child, so I worry I could disrupt the rest of my life. Again surgeons thoughts are hardware irritation at incision site, nerve is probably lying right next to it causing irritation and/or surgerical team might have pulled too hard in opening foot to cause nerve issues even though EMG was negative. He also things nerve could be wrapped in scar issue which would not show in EMG I was told by Dr. So with procedure he wants to do 3 things, remove hardware (screw and staple best he can with ultimate goal all of both), free up nerve from scar tissue) then separate small incision in big toe to scrap off bone spur ensure nerve is free.

Honestly big toe is what bothers me at most which not site of surgery, this is where my hypersensitivity is although mild.

Foot is sore in arch where screw was inserted.

Again no color change became normal after I was weight bearing ~ 8 weeks post surgery. Swelling reduced 12-16 weeks post surgery. I never noticed the cold to touch but did notice when I stepped on the tile bathroom floor once I was weight bearing it felt colder that lasted a few weeks so was probably 8-12 weeks post surgery no pains at this point.

I am wondering if the "zapping" is in my head from nerves and anxiety. I had the same thing before EMG for about 2 weeks, had EMG and I was all normal. I was so fearful EMG would send me in a "tissy" but I had no discomfort, so all that worrying for nothing.

I will talk to doc about the pre-surgery protocol. Neither Surgeon or Pain Doc think I need pre-treatment based on their physical exam. They are both prepared to be aggressive Monday after surgery if needed but they both said they didn't think it would be.

So there I go again talking myself in and out of it..

My family doesn't want to advise me on what to do either as of course they aren't in my body or head. I need a crystal ball..

Thanks for all the support. I am a worrier by nature another think I can thank blame my genetics for.

I am thinking of trying to make another appt with Pain Doc to ask more questions but havent picked up the phone yet. I don't see surgeon until Monday before the Friday surgery.

Littlepaw, I think I recall reading somewhere that this research came from CA somewhere I would like to talk to my surgeon about. Do you know if it is published "900 gabapentin pre-op and minocycline for a week after reduce the chance of chronic pain" I will also ask about Ketamin but I think he is going to say I am good to go.

I am pretty sure it came out of Stanford. My peripheral nerve surgeon trained in their microsurgery program and keeps up on research. I think this info is published.

Here are two on pre-op gabapentin. I had 900 as a single dose about an hour ahead.

ccme.osu.edu/RSSeriesBrochure/23131%20-%20Regional%20Journal%20Club.pdf


http://http://rsds.org/wp-content/up...stsurgical.pdf


On minocycline...different procedure but same principle. There is a current clinical study for its use in preventing post op pain in other types of surgeries. My plastics/nerve guy gives it to all his surgical patients no matter what type of procedure. It gave me mild headache and made me slightly dizzy. Small price for a little neuro-protection. Reduces glial activation which is a problem in CRPS.
http://hcpportalco20140430.pfizer.ed...s/20C2C6~1.PDF

High dosage of Vit C is a good idea as well. I;m sure Littlepaw will remember the specifics... hint, hint, I'm to tired to hunt. ;)

I'm a fan of Epson Salt lotion--it works well on swelling for me. If you respond well to steroids, I'd request possibly taking a course post op. Have Lidocaine patches on hand to help calm things down.

I did undergo surgery in my original CRPS site, 3 or 4 years after developing it. I had a stellate ganglion block by a former spine surgery that was amazing at blocks (I've had them done by 3 docs at this point and there is a VAST difference in outcome depending on the docs technique and attention to precision.) I had no complications from that surgery whatsoever. He also made sure to be very gentle with my limb and didn't use a tourniquet (I'm not sure if they're used in lower limb surgeries ever?)

So nice to hear about a surgery in the CRPS area that went well! That must've been a tremendous relief. Those are excellent suggestions too!

Current rec per Journal of Foot and Ankle Surgery is at least 500mg daily for 45-50 days. I would not go over a thousand...

Well unfortunately I am back to thinking I have CRPS. I watched Dr. Harden's video last night with his demonstration on the Budapest criteria and I think I fail. For pain the pin test isn't painful but it sends waves like feeling in the surgical area. I had the color change first 8 weeks when I was non-weight bearing. I had coldness for several months but no longer. Swelling also lasted several months but no longer. I am now 1.5 years post surgery.

So now I am thinking I will be postponing or cancelling the surgery to remove hardware and bone spur. I meet with surgeon again Monday then Pain Doc Wed. Unfortunately I can't speak to Pain doc on phone earlier so I will just go in and see him and ask as many questions as I can. Surgery is scheduled for Friday the 7th so I think at very least I need to postpone again.

Ugh, I am worried sick again. I can live without having this surgery but I worry about future surgeries with my parents and grandparents history of arthritis and knee and hip replacements.

I also wonder why all othropedic, podatrists, hand surgeons etc don't have all their patients go on Vit C before and after surgeries to help prevent this awful diagnosis. What an easy way to try to prevent it since most patients have never heard of RSD before they get the diagnosis we don't know there is an option to try to prevent.