I have been working on a list of treatments that I have tried as well as many that I have not. I plan on handing this to my PM next time I see him to give him more options before completely giving up on him and moving on to yet another doctor. A lot of this list has come from all of you here, Thank You! I am still working on this, but would like to ask all of you if you know of anything more that you would add.

Here is what I have so far:

Things that I have tried that have not provided enough relief.

Prior to surgery:

Started with Tramadol
Tried a Cortizone injection – caused more pain
Moved up to Norco 5-325 then up to 10-325

Had a fusion of subtalar and tibiotalur joints, rod extends 6-8” into tibia, as well as DIP arthrodesis.

Post Surgical:

Extreme discoloration of skin – purple and blotchy
Temperature differences started, usually much colder, occasionally warmer.
Had 3 MRIs - no dye, Multiple X-Rays, and a Venous Doppler to rule out DVT
Had thermal scan showing as much as 10˚ F difference between L and R foot/ankle
Had sensory test showing intensified sensation in R foot/ankle
Toe nails and hair stopped growing on R foot/ankle
Compression Stockings 20-30 mmHg – Caused severe pain to put on, wear, and take off
Was started on Gabapentin, eases electrical sensation some, titrated up from 300 mg a day to now 600 mg T.I.D.
Was started on Amitriptyline, eases muscle spasms and works as an antidepressant, started at 25 mg, now at 100mg.
Was offered Lumbar Sympathetic Block – declined for three reasons:
• already experiencing spread to multiple areas, primarily left hand,
• Its best chance of success is within the first 3 months. I have been suffering severely with this for 8 months by the time it was offered. I believe I have been dealing with this for 4 years, (broken toe in 2011), but may be as much as 12 years, (original break in 2003)
• also, lack of success from others with the same condition by researching online
Was asked to try SCS by 2 separate doctors. Declined for two reasons: although I am considering the trial since I am running out of options
• Lack of success from others with same condition by researching online
• Surgical procedures are known to intensify the pain, and cause a potential for spread
Tried Methadone, Started out ok but faded out and gave me heart murmurs
Moved onto Fentanyl patch, started at 25 mcg/hour now up to 50 mcg/hour
Moved from Norco to Percocet 7.5-325, now at 10-325

Most of the above, not all, have provided many other individuals relief.

Things that I have read have offered relief that I have not yet tried aside from what is mentioned above, some of these I will not consider but thought I would mention anyway:

Increasing Fentanyl to as much as 100 mcg/hour
Trying morphine instead of Percocet
Increasing Gabapentin, do not know actual mximum limits, I have heard limits from 3600mg to as high as 5000 mg for short term use
Fentanyl sublingual or nasal spray
ActIq – I believe that is solely for cancer and HIV + patients so that may not be an option
Butrans in place of Fentanyl
Bisphosphonates, ie. Neridronate
Oral Zoledronate – AXS-02
Aqua Therapy
HBOT
Calmare Scrambler Therapy
Ketamine infusions inpatient or outpatient
Oral Ketamine for breakthrough pain ie. 25 mg every 4-6 hours
LDN sometimes compounded with other meds that have helped that are mentioned here
TENS unit or Quell
Mirror Therapy
Acupuncture
Kineso Tape
Baclofen
Cannabidiol oil, lotion or through ingesting/inhalation
Change in diet – Paleolithic or 4 F diet
Vit C 500-1000mg
Pain pump


These have all provided others relief by applying topically:

topical of ketoprofen, gabapentin and ketamine
I am surprised with how well topical Soma has worked.

Compounded Ketamine cream

The commercial compounding usually uses a PLO gel which is supposed to help to transport the medication more deeply.

bupivicaine/ketoprofen topical.

Some prescribe a topical mix with a high percentage of ketamine or a high percentage of DSMO – most doctors will not discuss DSMO as it can be dangerous if accidentally used incorrectly.

Lidocaine 4%

Topical clonidine 1%. Not only are you increasing circulation but as an alpha blocker it is damping down the adrenoreceptors on your inflamed nerves.

RX for a compound cream with capsaisin, marcaine, lidocaine or bupivocaine and ketamine. Sometimes the doctor will put in topical amitryptyline too in place of one of the other things or in addition to it.

magnesium lotion