August 2013: Still struggling with severe pain in foot/ankle. Swelling, burning, stabbing sensations in foot.
September '13: Went to California for a 10 day vacation and used wheelchair for a lot of the trip as still on crutches and boot, unable to successfully bear even 50% weight. Neurontin dose increased, seems to work a little better. Started PT and really difficult but lymphadema therapy is crucial.
October '13: Saw Dr. B and he is concerned about CRPS. Sending me to pain management physician for eval on CRPS and treatment. Saw Dr. G at pain management office, basically meet all criteria for CRPS. He performed a lumbar sympathetic block to see if it helped the ankle and foot and it resulted in a 9 degree increase in temp and a nice warm soothing sensation. CRPS confirmed. Neurontin increased again. Still on crutches and able to start wearing shoes again with the block on board as the swelling in foot decreased enough to allow shoes. Plan is to return for a series of blocks to hopefully stop or dramatically decrease CRPS symptoms.
November '13: Able to wean off crutches totally and continued with more blocks. Still needing to increase neurontin and added a compound cream of ketamine, lidocaine and neurontin for my foot/ankle to help with desenstization. Muscle strength is getting slowly better with PT and benefits of the tibial derotation and ligament reconstruction starting to show as ankle never rolls anymore. Big toe still exquisitly painful, as is the area around the plate and screws. Saw Dr. Z and had yearly follow up for hips, explained tibial surgery and ligament reconstruction, and also that left leg still bothering me. He said he'll be available whenever I am ready to go ahead with left FO/TO but to try to let right leg heal up awhile.
December '13: More lumbar blocks from pain doc and moderate success with these. PT finished up, and PT gave me a lymphadema pump to use on leg at home. I use it for a 1/2 hour at night and really like it. Still wearing TEDs on the right as the edema is still pretty bad, probably only 2+ anymore but still bothersome.
January '14: Right hip really starting to hurt a lot more than usual, which puts a strain on everything else because I walk funny to alleviate that. More blocks done for foot/ankle and baclofen added to meds as I started getting really wicked muscle spasms in the foot and toes. Saw Dr. B again and he set me up for an injection into the ankle and toe joints to see if this helps pain at all as it's still pretty severe. I've tried exercising on the treadclimber and it's too painful. Injections won't happen until March d/t scheduling issues.
February '14: Saw Dr. G at pain clinic for an "emergency" lumbar sympathetic block as I'm going on vacation to Mexico. Block did not help this time. Vacation was good, but I wasn't able to walk very long on the beach. Also because of increasing hip and back pain, script for PT was written. Started at the pain clinic and getting manual therapy on my back which I love. Also got a script for noretriptyline to help compliment neurontin with nerve pain and ordering an EMG to see if there is a specific nerve lesion as this is ongoing and frustration is setting in on my part. Still fiddling with best dose for neurontin, and 2400 mg is where I've settled. Pain is still pretty significant. Muscle is finally starting to come back in calf. Plate and screws hurt to be touched and leave a pins and needles sensation. Lots of popping in right ankle now. I started gentle Yoga at the end of the month. Very challenging for right hip poses but a very satisfying class overall. Cannot do Warrior Poses without pain though.
March '13: Ankle and toe injection this month. Surprisingly worked really well after the last two sympathetic blocks did not work. Toe much better, ankle less stiff. Able to rapidly decrease neurontin dose down to 1200 mg. Plate and screws most bothersome issue. Manual therapy has done wonders for back pain and possibly foot. Back pain was 6/10 and now 1-2/10. Foot has gone from 8/10 to about 4-5/10 (with meds, PT, and injections combined).
April '14: Able to decrease neurontin to 600 mg. Thinking noretriptyline has a lot to do with it along with injections directly into the joints. Saw Dr. B and everything looks good from an orthopedic stand point. He said he will take the hardware out whenever I want and I don't need to follow up with him for another 4 months.
Saw Dr. G at pain clinic the day after and he recommends not taking hardware out as he feels I'm going into remission and we should avoid anything that can aggravate CRPS at this point. He also said out of 12 patients who have hardware and CRPS, only 1 had any beneficial relief and the rest actually got worse. Will give script to decrease neurontin to 300 mg and putting EMG on hold. Don't need to follow up for another 2 months unless I need sooner intervention. I'm pleasantly surprised at how quickly things have gotten better. Yoga finishes this month. No benefits in flexibility but my balance is better. Back pain is still minimal since PT. Right hip is still the only thing that seems to be stubborn. Left knee and occassionally the hip still painful too. Very noticable difference in look of legs; right is straight and left is all twisted. Tried taking on a job in the surgery dept and only lasted a week. There was too much pain in my hips on down. I ended up going back to my quality job. This is frustrating that I can't seem to be able to walk more than 10 minutes or work without pain and limping. The worst offenders right now are my right hip, left knee, right foot.
I still have slight swelling of the ankle, especially around my plate and I notice that I have what I would term as cold sensitivity with the hardware. It feels yucky!
Next few appts will be over the summer and in the fall. I will see Dr. Z to have a yearly hip follow up and possibly a "pre op" appt in October. I'll likely schedule my left leg FO/TO surgery for late December '14 or late January/February of 2015 depending on insurance.
The pain doc is really hesitant that I do this but also understands my reasons. He will help support me for prevention of CRPS during that time, and especially when it becomes time to have the right hip replaced since it will be on the same side as the foot/ankle with CRPS.
I really hate that my life has become this never ending cycle of doctor appointments, treatments, medications, and surgeries. There's nothing good about it and no one likes being around a walking medical Debbie Downer. Although I suppose I am walking, so that's a good thing!
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