Straightened Out - Part 1

December 16, 2014

I started out the day of surgery expecting to go in pretty late in the day as per usual, as I had a scheduled time of 5:30pm, but the hospital did call me and ask that I get down there ASAP as they had a cancellation and wanted to get me into the OR at 1pm. Unfortunately as far away as we were, it still ended up being about 4pm before I was taken back to surgery. Getting the epidural was a bit of a challenge in itself as well as it seemed there was miscommunication between the pre-anesthesia screening call the day before and when I talked to the CRNA the day of surgery. But once the anesthesiologist and Dr. Z talked things over, they decided that we would go ahead with a spinal and a continuous infusion epidural rather than a general anesthesia. To be honest, that had me a little freaked out and I wasn't really cool with being "awake", but we were already so far behind schedule and it took so much just to get the epidural that I just went with it. I kissed and hugged my husband and MIL and got a good dose of versed before being wheeled into the cold halls of the OR maze. We entered my surgery suite and there was a host of people there with tons of equipment and I saw my surgeon who was waiting for me with a smile in his eyes. I also had two very kind circulating nurses ready to assist me while I was positioned for my epidural and they talked me through it and next thing I know I'm told that I should feel a nice warm and heavy sensation in my legs, which I did. As I was laid back on the OR table, my legs were last felt to be laid straight out in front of me yet when I was watching Dr. Z examine my ROM with his resident he had a pair of legs flinging around in the air doing all sorts of weird movements. Then I realized, they were my legs. Seriously, that is bizarre! A flurry of activity began from then on as my foley catheter was placed and then the sterile drapes were put over me and a clear plastic drape placed above my face. I listened to Dr. Z and the circulator do the "Time Out" where they state the name of the patient, the procedure, the correct side of procedure and antibiotic given, etc. Then it was go time. Suddenly I realized I was staring at Dr. Z through the clear drape and listening to him say "oh we have a loose body, please hand me _____ instrument " and I saw him switching out different scope instruments within my hip joint. Also I recall him having conversations with his staff during the scope. He also spoke to me saying that my hip had a loose body but he got it out and that the hip looked pretty good. Some parts of the femur were "scuffed" but not bad. As I answered him back it dawned on me that I was awake. That's when I looked at the anesthestist and said "I'm not going to be awake for the Osteotomies am I?!" She said no and patted my arm. The scope was over pretty quickly after that and I recall being transferred over to the fracture table and in my drugged up state I grabbed Dr. Zs arm and told him "thank you, you're doing such a good job" (doh!). He just smiled and squeezed my arm back. Then they situated me again with a blue drape over my face and this time it was totally lights out during surgery. All in all it was 3.5 hours of surgery. I was taken back to recovery after Dr. Z woke me up and said everything went really well and I had a beautifully straight leg, and a really healthy looking hip joint. I felt very calm but very shaky. The epidural wasn't set up to the continuous infusion yet so I had quite a lot of burning and searing pain in my thigh where the femoral osteotomy was done and my tibial osteotomy felt like it was that crushing/squeezing pain. It took the recovery nurses almost an hour to figure out how to get the epidural to work before it began to give me relief but they did allow me a PCA while they tried getting the epidural set up. I couldn't stop shaking and my sternum and shoulder blades burned with an icy hot sharpness that no one could figure out either. But my EKG was ok so no one was overly concerned and figured maybe the epidural went a little too high. Once the epidural boluses finally brought relief after two hours in recovery I was moved to my room on the orthopedic floor where I started out with my own room. It was a fairly decent first night except that my left foot just would not respond to any pain meds or interventions that we tried at all. I couldn't feel any pain in my hip or femur though which was great. My main concern was just not having a flare of CRPS in my right foot/ankle and spreading it to my left side and so far we seemed to have avoided that. But as the night progressed, my left foot became more and more worrisome and I was becoming more distraught. My nurse was very distracted and not able to attend to me as much as I needed her too either because the hosiptal had been hit with over 200-300 admissions alone that day/night for the flu and patients were filling every available space the hospital had, including areas of fresh post op spaces. Yep, there were 7 flu patients on my floor just a few doors down from me....but no worries, they were quarantined. So, although my left hip had responded nicely to the epidural, the rest of my lower body pretty much had full feeling. And that was just the beginning to my pain teams adventures.

A Little Before And After

As close as I'm getting to my surgery, I realized I don't really have anything to photodocument the changes of what will take place. The photos within this post display xrays and CT scans of my knees and also my corrected right tibia. Then the leg photos are to show my legs post right tibia derotation/pre left DFO/TO. In some ways parts of me will miss having the wonky legs that can do the circus tricks because of the anteversion. But I will not miss the pain or instability. In years past it was a lot like cracking my knuckles when I cracked my left knee. It didn't hurt, it just felt good. Now it hurts and my knee buckles, and also bruises along the joint line often. Luckily with my hip, it hasn't stuck again since summer but there have been moments of stabbing pains and just those generalized limping marathons.

30 days until I will be straightened out.

Details for December

Things have been set up for December 16th for a left hip scope, a derotational osteotomy at the hip with plate and screws and derotational osteotomy of the tibia and fibula with plate and screws. Each derotation will be a 25 degree correction, the femur external (outward) and the tibia internal (inward). Those a considered pretty significant numbers. My surgeon says it'll be a pretty rough surgery and to plan a minimum of 12 weeks of down time. A double level osteotomy is difficult on pediatric patients at best, so on the adult patient it's even more difficult meaning I may not recover easily or timely. I'm definitely determined to beat those predictions and recover well. 

On the CRPS front I've been switching up my medication regime and I have switched from neurontin to topamax and Nucynta ER. This combo works so much better than what I was doing before, but holy cow, I drink tons of water but don't sweat anymore, I barely pee, get kinda nauseated. And the biggest thing is I haven't had any pop in 6 weeks!! That's huge because Diet Coke has been a staple in my diet all my life. Topamax apparently has this side effect commonly. It's worth it though. 

The biggest hurdle I'm going to face now going into surgery is trying to get a spinal or block of some to protect my right leg from going into a flare during and after surgery.

Preparing For The Left Femoral and Tibial Osteotomies

I'm the girl who usually loves going to Detroit to see her orthopedic surgeon. The guy practically gave me my life back by correcting my hip sockets when he did. But this appointment I just had this past Monday I was less than enthused. I consulted with my OS about my left leg and hip, why it's still hurting and should we really consider doing the femoral and tibial derotational osteotomies. He agreed it's time and also wants to scope my hip since it sounds like there is a labral tear as well. He didn't seem too excited either and I don't know whether to attribute it to disappointment that the PAO wasn't enough or he just had a rough day. His long time assistant, whom I had become friendly with and used often to help me through the maze that is my OS's world, just up and quit a few weeks ago, leaving him in a lurch. He looked tired. I'm bummed because I have to deal with a brand new person who doesn't know me from Adam. Regardless, I'm waiting to hear back from her about a date for surgery, hopefully it's in December to avoid paying a huge deductible in January. Z mentioned a 25 degree internal correction for the tibia and 25 degree external correction for the femur, and 3-4 nights in the hospital. He also thought this would be my roughest surgery yet, even worse than the PAOs. I'm keeping a poitive outlook that it won't be any worse. I have to get some more questions answered from him but he thinks I could just call him a week or two before surgery to have my preop rather than drive down to Detroit to save me a trip. I need to ask him about time non-weightbearing, time off work, where the levels of the osteotomy will be for each part, and if he will consider a spinal or epidural for me since I do have CRPS now. He seemed concerned about whether my right leg was up to supporting my left side. I told him absolutely. What else am I gonna say?  So while I am truly excited that this really should be it for me with corrective surgeries, I'm not happy to have to do it. I just want to be done already. I see hardware removal and a right THR in my future and that should be the extent of what I'll ever need. Anything else would be completely unforeseen. As for my right hip, the joint space is staying stable but the medial and most distal part of my socket is getting more spurs and cysts than the last xray. It's feeling like it too. I'm pretty stiff in the morning and when Z and his PA put my hip through the motions, flexing it hurt enough that I flinched and squeaked in surprise. It's ROM is about the same too, 80 degrees of flexion comfortably, and 90 if pushed. But that hurts. The left is still normal around 110-120 degrees, although flexion and external rotation does hurt now. 

Stuck

Not my most glamorous moment today...I got "stuck" on the toilet, at work. My left hip was stuck in a painful position and it took a few tries to get it unstuck before I could move without crying. I'm sure either the labrum snagged or it was subluxation. What a pain in the butt (or anterior hip)! Now imagine the fun email I got to write to my surgeon's assistant...! I am asking to be able to get a cortisone injection here at home now versus driving 3 hours to Royal Oak for one or waiting until October when I have my follow up with Z. I thought I was going to skate by on this side until this winter since I just passed the 3.5 year post PAO mark. Hmmm... Well played hip, well played.

And since I brought it up (it's my blog) I just celebrated 3 years post RPAO and 3.5 years post LPAO on Saturday the 31st of May. No new or exciting things to publish. I have noticed however that humidity is a natural enemy to my hip joints (and foot/ankle joints) more so than freezing temps, I dare say. I would never admit it to my husband though since I have him convinced that we need to move out of the north and flee south...far south where summers last longer than 2 measly weeks. I'm unpacking my winters clothes as we speak. No, seriously!

I'm also coming up on 1 year post op on my foot and ankle surgery this Saturday, June 7th. I'm making slow, slooooow strides in the right direction. I still depend on meds to control the nerve pain and have discovered a little more that I really can't wack my ankle plate against things, 'cause hey, it really hurts! I'd like the hardware to be removed but if my pain management doctor's face is anything to go by, I'm going to guess that's not the brightest idea. I'm going to try to live with it. It scares me to think I could get back to where I was when my CRPS was out of control so I'll heed his warning and get him to stop making faces at me everytime I bring it up. I'm also scared to sit on the toilet again, but I can't hold it forever...pass the toilet paper, eh?

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!