A year in review

I'm going to try something different to bring everything up to speed without writing a book and just summarize by month.

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!

3 months post ankle/tibia surgery

Boo, my whole foot, especially my heel and achilles over to my lateral ligaments, is one big writhing mass of nerve and fasciitis pain. My toe has actually been doing the best now. I've had to cut back on how much weight bearing I'm able to do right now because of the increase in pain and that is helping my discomfort. I still have 1-2+ pitting edema despite the Jobst stocking and lymph massage. My foot up to mid tibia turns bright red and if I touch it does the flash of white and turns right back to red when it flares up. I'm not quite certain yet, but I think my incision that opened and had to be treated healed too tight. The line is puckered and feels like it's pulling. It didn't look that way before the cast was applied. It's so hard to tell right now because I can't weight bear without the boot therefore I can't tell how the ankle and foot are going to feel when walking bare foot. I'm 11 weeks post op now and still pretty early in recovering. I haven't had the most ideal recovery either so I have to keep that in mind too.

On the bright side, looking at my reflection is fun because I see myself with a straight leg. I will need to do a photo op to document my legs as I progress.

Great Gastrocs!

I am pleasantly surprised to find the gastrocnemius lengthening is actually doing what it's supposed to do! I start each afternoon (after work) with stretching and flexion/extension exercises with my ankle while also engaging my calf muscles. I had no idea how tight my calves actually were!! When I flex my ankle upward (toes to the sky) my calf just feels smooth and free on the right side/"fixed" side. When I flex on my left, the calf is tight and crampy feeling. It brought a smile to my face when I realized how nice it feels on the right side. Dr. B did tell me pre-op how tight and short my gastrocs were and that the lengthening would make a difference and help with cramping. I had no idea how right he was because this has just always been normal for me.

Day 75, or 2.5 months post op, and I finally see a really great improvement!

Small improvements

Each week I'm noticing small improvemts in my ankle pain. The incisions are tender to touch, but not exquistly so. If I palpate them hard they definitely hurt a lot but having materials touching my foot and ankle (clothing, blankets, water) does not hurt anymore thanks to neurontin.

My scars are hypertrophic and look a little bit like they have blood blisters under them but it's just the way they healed -- ugly. The incision that opened is still managing to stay closed but there is a really thick nasty scab on it and within the area of the scab is a big depression and around the entire incision is a lot of fluid. I'm still not sure if it's purely just pitting edema or if it's fluid that needs to be drained. Sometimes the area feels really hot, but it's never been red since the just after I finished my course of antibiotics. 

My ankle ROM is improving in small increments. At least dorsiflexion anyway. Plantarflexion still seems to be too stiff and I'm also having trouble spreading my toes. Some of that I know is due to the edema, another part of me thinks nerves are slow to wake up. My great toe has almost zero motion to it and it is still painful. The jury is still out but I'm not so sure this was the right thing to do to my toe. It hurt before but at least it moved and wasn't swollen. Dr. B did say it would take a year to get results. I really don't get how a foot surgery can take so much more time and energy to heal than a freaking hip osteotomy but, I digress.

I am up to 100 pounds of weight on my foot. I can walk around the house without my crutches in small, small increments even though I am absolutely not supposed to. I only put weight on the lateral side of my foot though. Putting weight on the big toe hurts!! Plus trying to walk with full weight (even in the boot) causes a surprising amount of pain anteriorly in my ankle. I'm just going to ride this one out because Dr. B said as I increase my weight bearing, if something hurts, I'm to back off and go more slowly. Who knew I'd be on weight bearing restrictions and on crutches longer for this surgery than my hip surgeries. When I go back for my next follow up, it will be just shy of 4 months since surgery and being on restrictions. I wouldn't mind all this so much if it weren't for the troubling edema. It's better but still bad/ugly. Even with the Jobst stocking on it during the day, it is still pretty significant. And that worries me. Swelling up after activity or having my foot down would be one thing. Having +2-3 pitting edema 24/7 is not normal.

I still have that little nodule on my achilles but it doesn't really bother me too much. It gets a little irritated when I put too much pressure on it but settles down when I take pressure off of it.

Vacation is next week and I'm ready for something fun. I'm also ready to use my "golden ticket"! My husband and his brother will be running in the Disneyland half marathon and then the real fun begins :)

Follow up to the follow up

I saw Dr. B on Thursday. Things went well enough but still on the slow track. I had xrays done and then waited for Dr. B to come in. He went over the expectations at this point in the healing process, and pointed out my recovery has been slower than usual. Slower in that I had more done in a smaller area which causes A LOT of trauma to the surrounding tissues. The bone is still not healed. The incision is closed but still needs close monitoring because of the swelling. The swelling is +3 pitted edema, which he was a little concerned about a DVT since it was always swelled and not better in the morning and worse in the afternoon/evening (we ruled out a DVT with an US). Because of the swelling, he prescribed Jobst stockings in 20-30 mmHg strength and I just got those yesterday.

So, I'm to stay in the boot for 6 more weeks until I see him again (typically it would be 4 weeks) and I have to remain on my crutches til then. I can start slow weight bearing of 50 lbs for a week, then 75 lbs for a week, then 100 lbs for a week, then full weight. However, I can only weight bear in the boot, not while I'm out of it. I can't start outpatient PT until after I see him either, but I am allowed to do PROM as long as it doesn't hurt. 

I started wearing the jobst stocking yesterday and by evening was feeling an irritating pain on the back of my heel, on the achilles. This morning it was unbearable and when I removed the boot and took off the compression stocking, there was a peanut sized nodule/lump and it was red. Any pressure on it hurts so I can't wear the boot or stocking right now or rest it on a surface either. Pretty miserable. These inflammatory nodules are a hallmark of ankylosing spondylitis, so I'm thinking I'm getting a nasty flare of that because I also recently had a few ulcers in my mouth and really bad back pain. On top of that I am really struggling with my blood pressure. I'm light headed and falling over, especially in the mornings and after sitting/lying awhile. I've been checking my pressures and the highest reading I got over the last several days is 87/40. I'm increasing my water intake to try to help. This has to get better quick because I can't balance myself well with little to no weight bearing, and I've had 2 falls recently. 

Overall, things are looking better but vacation is in 2 weeks and I wanted to be walking without crutches by then. I'll be lucky to be walking without them by the time the fall wedding I'm in rolls around!

Wounded (7 weeks post ankle)

I'm a nurse who can handle seeing the most gory of gory situations and not toss my cookies. I can handle most smells and clean up some of the grossest things most people can think about. I keep my cool and always have my "nurse face" on. That all changed when I saw a wound on my ankle.

The increase in pain may indeed have been neuropathic, but I also have a large open wound on my lateral ankle incision. Likely it began forming when I had the increase in pain 2 weeks ago. The smell and sight of the wound as the bandages and steri strips were removed nearly made me retch. I sat in the cast room with 2 other patients across the room from me, trying hard not to cry and freak out in front of them, although I told them I was about ready to lose it.

The MA removing the cast gently told me I would not be going back into a cast as planned due to a wound. Once she had everything open to air, she summoned my surgeon. He took a look and cleaned some of the tissue with a qtip to see how deep the wound went (serious pain!) and suggested dry dressing changes daily. I was to be fitted into a post op Cam Walker boot but treat it like a cast and remain non weight bearing. I also had to start a course of strong antibiotics and was given the go ahead to stop the lovenox shots. I will follow up with the surgeon August 8th to recheck xrays (he isn't too concerned with the bone's lack of healing at this time) and to check on the wound healing.

My calf looks sickly. Like I haven't used it in years. I am really anxious to start walking on it to get a feel for the new alignment. The surgeon had me stand lightly on my foot to check the alignment and he was pleased. Everything felt weird then, that's for sure. I was given the ok to start gentle flexion exercises to help loosen my ankle. When I asked about PT though, he said it was too soon. 

This appointment left me feeling overwhelmed and afraid. I was not expecting a wound with daily dressing changes. I expected to be able to move through recovery as quickly as I did with the hips. Speaking of the hips, my right hip really hurts again. My injection wore off and there isn't a lot I can do to help it. I'm sure that the leg is weak and that is not helping my hip structure at all.

Today, when my wound was redressed, it looked 10 times better than yesterday and already shows signs of healing! Now I'm hopeful that it won't be so bad.

One thing I can say is I'll never be getting steri strips or a cast again if I can help it!

6 weeks

My ankle and foot pain increased over the last 2 weeks and got to the point of needing intervention. I went to the after hours ortho urgent care center and was examined and xrayed. I was hoping they would cut the cast off and either give me a new one (better fit) or a soft cast. Unfortunately it didn't go my way. The PA said the bone cut from the osteotomy has not even started any form of healing yet, no callous formation, nothing. Good news is, my hardware is still where it should be, nothing broken or shifted. I keep feeling a pinching, shifty clicking in the front of my ankle so I'm a bit concerned. The PA thinks I'm dealing mostly with "out of control" neuropathic pain, and he prescribed me a higher dose of neurontin. So now I'm on 1200 mg per day. However, due to the severity of my symptoms, he thinks it's best to move my Aug 8th appt up and get me in to see my surgeon next week. So I will know more after next week. At this point in time, I'm to lay low and take it easy. Elevation and ice and pain meds for pain control is key right now.

Currently at 6 weeks post op:

I'm still on lovenox shots for blood clots (2 more weeks of these) and I am still dealing with a blood clot in my hand from my IV (thrombophlebitis). 2nd one I've dealt with

I'm likely going to be in the fiberglass cast and on crutches longer than the original 8 weeks d/t delayed union.

I'm back to working a full 8 hour day at work.

I am able to drive left footed from home to work (have been driving since 3 weeks post op).

I am afraid of how long it's going to take my incisions to heal. I can see the top of the one from my big toe and it's still very scabbed over.

Toes and foot turn same color purple as my cast when it's down. My cap refill is 3 seconds, so it's nothing to be worried about.

Neurontin is causing amusing memory lapses...have gone commando to work, forgot deoderant, sentences end with funny words, and I have terrible recall. But it's really helping with the neuropathy in my foot and ankle so it's worth the funny business.

At this point I'm most anxious to hear what my surgeon has to say about the increase in pain and whether I'll be able to be walking unassisted by the time my September vacation comes up (California bound!).

5 weeks and counting!

Having a cast sucks. Having a cast in summer really sucks. I'm counting down the days til this thing comes off...24 more days...just over 3 weeks left. August 8th is when I have my next follow up and I was told that would be the day the cast ceremoniously will be sawed off and disposed of! Then I get to wear the cam walker boot and continue weight bearing restrictions until further notice. Fun stuff, this reconstruction business is. 

I really missed out on some fun stuff over the last few weeks because of the cast. A lot of it had to do with a lot of walking to get to beautiful sites in Michigan and others to do with swimming in the Great Lakes. But, tubing is one thing I have been able to do with a lot of resources and help. A good ol' float down the river will cure almost anything!

I started gabapentin recently because of nerve pain in my foot. I was having lightening shocks and burning that was really intense with sharp stabs of pain. My toes changed color when my foot started having an "attack". So the gaba has helped and no more lightening shocks, and the burning has minimized to just around the outer edge of my right toe at the ball of my foot. I do have this funny sensation of "tickling" or like when you get goose bumps from a chill around my incision where I had the ligament repair. There is a lot of pain at the bottom of my foot and heel. Always has been and never relieved by anything. Hopefully getting the cast off will help. Plus it doesn't feel like the cast fits my foot correctly anymore. I almost feel like my leg or ankle has shifted a bit, which I highly doubt. I have super itchy skin and of course didn't listen to the nurse when she told me not to stick anything down my cast to scratch the itch. With the aid of my back scratcher, benadryl, and zyrtec I only can alleviate so much itching. Again, removal of the cast is key. My balance is another issue. Without being able to toe touch like with my hip surgeries, I'm really having a tough time staying upright when I'm not balanced on my crutches. Said cast must come off. Casts suck.

Half twisted

2.5 weeks ago I had a tibial derotation osteotomy and a modified Brostrom ligament reconstruction with a gastrocnemious release and a great toe plantar plate reconstruction with tendon transfer. My stay was in Grand Rapids and 6 days inpatient. They used a block that stayed in 3 days (thus the epidural catheter in my thigh) and general anesthesia. My kidneys decided to act up which is part of why I stayed longer than usual. The pictures I think will say it all. So very excited for a straight and stable leg!

2 years post RPAO

Yesterday, May 31, was my 2 year mark for my RPAO (and 2.5 years for my LPAO). I had high hopes that at this point in my sustained recovery I would be updating with things like I'm running and hiking and doing crazy awesome things that crazy awesome 32 year olds do, but I'm not there yet. I don't know when I will be either. 

I'm scheduled for a right hip injection on Monday. This will be 7 months post hip scope. My left hip has been acting up a lot lately and I don't know yet why or what it even means. I can't even mow the yard or be intimate with my husband without either hip freaking out. My left knee is still hurting me and has never gotten any better after any of my hip surgeries.

Next week, Friday June 7th, I am having my right tibia, ankle, and foot worked on.

I have ligament instability (my surgeon's words "your ankle is basically unattached") and will have a modified Brostrom ligament reconstruction, tibial derotation (at supramalleolar level), a dorsal plate reconstruction with tendon transfer, and a gastrocnemius lengthening.

It seems as if all this stuff I keep having done is really holding me back from really truly recovering but my body mechanics just plain suck. I can't seem to do anything anyway so I am pursuing corrective treatment.

As of now my endurance level for any activity is pretty limited. Just walking and standing in the grocery store is painful. That's not normal. I still have pain and stiffness in my right hip with flexion beyond 80 degrees and I can't rotate it out in a figure 4 without immediate pain. I feel things like bubble wrap popping in my hip. That feeling elicits a lot of pain. It goes tingly and numb when I lay on it. Then the fact that it just aches, a lot. A really bone deep ache. I'm not sure what is going on with my left hip. It started acting up a couple weeks ago. Any activity caused it to get achy, a pain where I didn't want to bear weight on it, and clicking. Now it's back to baseline where I just have the painful snaps throughout the day. It is simultaneous with my knee. All I can do is keep an eye on it. I don't have any "drop me to the floor" giving out pain anymore but I've had similar shadows of that pain hit me recently. 

The good news is, I don't limp like I used to (unless I'm getting up after sitting for awhile). And with my left hip, the amount of time I'm in pain is short compared to the right side. I'm still planning on the day when I can participate in an organized run or adventure race. Maybe a bike race could be in my future. 

I've honestly had a few days where I've cursed ever having surgery in the first place because it seems to have caused a chain reaction to more than I ever wanted, but overall, I think I'm better than I was.