Tuesday, September 19, 2017

Week 9: Flare

Nine weeks (two months) post op right hip!

I still remain susceptible to flare triggers and suspect I will for the rest of my life--sobering thought. The combination of travel, sitting early in the week made me more sensitive to being in the car the rest of the week even just driving to PT.  It was not bad, just a bit sore.  Then, massive cold front went through and my body does not like even mild weather pressure changes at all, so I definitely felt that one.

I seem to have encountered the first flare-up with right hip since surgery.  Both hips handled the drive to and from Omaha (from Lincoln) early in the week, plus lots of sitting between waiting and exam rooms.  This was huge as driving, sitting, standing were incredibly difficult pre-op both hips. I was pretty excited at how well things went. However, right hip was more sore that evening and the next couple of days. I noticed it did not like being in the car, and found myself using left foot to hold down the brake at stoplights again as I used to do pre-op.  There was a major weather change shift over the weekend and that flared entire body, including both hips. Sunday, I stayed home from church as too uncomfortable to be able to sit. The right hip was still pretty sore Monday, so called PT to see if this was something to work through and continue rehab exercises, or back off.  I was told to take a break and he'd check it next day at my appt.  He did check and could tell it is irritated, but not too concerned and figured it should be calming down in the next day or so.  He said to go ahead and try pool walking, then elliptical, but back off duration and pace, then start adding back more rehab exercises by Thursday.  Tried pool walking this evening, and I did not last as long as usual, but being in the water felt great!

The Omaha trip earlier last week was seeing a new orthopedic surgeon for my shoulders, and to check hip incisions. Incisions were not concerning. This surgeon was clearly familiar with Ehlers-Danlos syndrome and among other things checked what degree of laxity my shoulders have--some, but not too bad. He confirmed the os acromiale in both shoulders and that it can cause pain itself, though my worst symptoms are coming more from rotator cuff--especially left shoulder. I ended up with cortisone injection in the left (worse) shoulder, plan to follow-up in several weeks, discussed MRI at that point depending on how things are going. He was more thorough than when I have had shoulders checked in the past, but he also took more time. Injection calmed shoulder nicely! Normal injection response--amazing relief first few ours, then more sore.achy, then couple of days later, better! Right shoulder is calming as well--I was not sure, but really hoped it would without an injection as it had done so in the past once we got left calmed some.  We have already increased shoulder exercises in PT with injection in effect. This is a relief.  After the appointment, I was second guessing both injection for the left shoulder and not getting an injection for the right shoulder.  However, I was basing my observations and preferences on how both shoulders felt and what I knew from past. We had talked about waiting on injections completely.  However, when I explained what has been done, is being done, what happened last time, we decided on injection for left shoulder that day.  I was asked about right and said I did not think it needed it. Afterward, half wished I had waited on left as several more weeks is really not going to be that big of deal but then remembered the difficulties falling asleep at night from painful shoulders.  So, then wondered if I should have asked to go ahead with right as well, but do not want more injections than actually needed.  My body seems to be following previous patterns and confirming right decisions.

Week 9/2 months left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Tuesday, September 12, 2017

Week Eight: Optimism

Eight weeks post-op right hip, 14 months post-op left hip.

I am finally getting back into more normal routines.  I am doing pre-op exercise routine as far as able, and I am back to taking a day off a week from exercise.  That has helped immensely. Instead of merely getting through each day, I am starting to look ahead again.

I do still get tired out/worn out easily and if I do more one day, need to take the next more slowly.  I am sleeping 10-12 hours a night, 8-hour nights just are not enough.

PT says my op leg is getting stronger, walking is getting better!  Yay for progress! Still advancing time on elliptical and it is going well. I am up to 15 minutes and nearly a mile at a time and it feels great to be moving!  More lap swimming again, and that also still feels great! I am kicking with left leg for freestyle, no kicking at all for breaststroke. I am working a little at a time on increasing flutter kick with freestyle with right leg, but not pushing it yet.  I am swimming full number of laps I was swimming before surgery! I have to be super careful of shoulders, but as long as I am careful and am not swimming consecutive days, shoulders are handling being back to more swimming again. Pace is slower than before surgery, but between not kicking as much/strongly, and shoulders being irritated, not worried about pace at this point and working more on form and grateful for being able to swim at all. I am still walking in the pool to work on gait and endurance.  I can walk up to 45 minutes in the pool (maxing out here).

I was given an activity monitor a couple of weeks after surgery.  (I sort of wish I'd had it pre-op first hip as it would have been fascinating to watch as ability decreased pre-op first hip, became nearly non-existent after surgery, the slow increase with rehab, the decrease as second hip got worse, now slow increase again. It also would have been interesting to compare between recoveries.)  Anyway, when on crutches, to protect my shoulders in particular, I was intentionally trying to limit to less than 1,000 steps per day (pathetic goal, I know).  I was mostly successful, exceptions being PT days and pool days.  Once off crutches, not really trying to manipulate things, so much as let my body move more as able and tolerated.  Steps have been averaging around 5,000-6,000 a day.  However, I have reached over 10,000 steps in a day in the last week!  For someone who is goal-oriented, it can be hard not to try to reach certain goals and an activity monitor can make it even more tempting to push toward goals. However, the clinical researcher part of me finds it interesting to just observe what happens without trying to manipulate outcomes.

I did get in for dry needling early in the week.  Opted to target low back and left hip based on observed referral patterns and what I know of my body.  Sure enough, she found numerous tight areas to work on and left hip had more tension than right. She said she can also dry needle shoulders.  I see the orthopedic surgeon for my shoulders, so will see what he says about shoulders, if injection(s) or not, then go from there regarding needling or not.

Not sure how many are aware I am sensitive to latex but PTs are aware as regular therapy bands contain latex. I had latex-free bands from a clinic several years ago but these were wearing out and the next clinic I had been at did not have latex-free bands.  The new clinic I am at now has latex-free bands!  It is the little things. All bands shown below are latex-free.  The orange ones are the ones from several years ago.  The others are the new ones.

New latex-free bands!  No more rashes/reactions, no more worn-out bands breaking on me!

There are, of course, other things going on, but choosing to focus on what is going well.

Week 8 left hip last year.

Copyright © 2017 by Stef. All rights reserved.

Wednesday, September 6, 2017

Week Seven: Regaining Independence

Seven weeks post-op right hip, 14 months post-op left hip.

I have been incredibly independent from the start this time, so not much to complain about. However, with this surgery being right hip that was operated on this time, driving has taken longer.  I had started to feel stuck even though I have sisters who have been very willing to give me rides when they are available.  But, as the flare progressed, I needed more medical care, which translated into more appointments, which in turn meant more rides. Also, their schedules started to fill as they returned to normal school and work tasks. It was hard to try to schedule things when not knowing availability for rides. I have also been more or less stuck by myself at home during the day.  I have not really had time to feel lonely or anything because rehab exercises, ice, rest take pretty much the entire day. However, I had projects I wanted to be working on and have not been able to get to them. I do still get a lot of reading done and some crocheting as ways to fill the time when on the exercise bike, or icing, or in waiting rooms.

Well, I can drive again! I started about a week ago. I was told to start out just trying in a parking lot, or non-busy residential area.  That went well, so drove myself to PT a couple of days later and that also went well.  Drove myself to church.  Drove myself to run errands, etc.  Yay!  I am also cleared for elliptical!  First attempt felt great and went well.  It was hard to hold back to the duration and pace I was told to start out with as trial.  It felt amazing to be able to move more again!  I then swam consecutive laps in a lap pool for the first time since surgery.  I had done up to ten laps at a time here and there or had done consecutive laps for 35 minutes at a small pool, but that was different.  This was 35 minutes of non stop laps in a normal length pool.  My pace is not what it was pre-op, but since this is the first I have tried to this extent since surgery and since I am not kicking, I was impressed with how well it went and how many laps I got done.  I am kicking with left leg for freestyle, no kicking at all for breaststroke. I can do a tiny bit of gentle flutter kick with right leg for freestyle, but it does not amount to much yet (have only done a couple of partial laps and there is no power in it--really just working on getting it used to the movement again).

PT went well yesterday--he told me I am walking well, gait is looking pretty good, he can tell I am getting stronger.  The op hip is doing well.  It is the rest of my body that has been the set back. I was given the OK to back off on how many times a day I am doing exercises since we are advancing with more strengthening.  Hopefully, this means things will be and feel less time-consuming and tedious. It has been exciting to advance in rehab and to get stronger, but has been hard when it feels like my entire day is taken up with rehab.  He also said it is fine to go back to taking one or two days off a week from intentional exercise!  Yay for another shift back to more normal routine.

Aha moment!  This article explains some of why I felt like I was always hungry in spite of always eating and eating well those early week after surgery. I knew healing from surgery itself placed higher energy demands on the body and I suspected crutches also did, but was not sure what effect crutches had, especially when limiting how much I was up and around.  (I was finally weighed recently and I did lose weight after surgery in spite of trying to hold weight stable. Of course, there was also muscle atrophy from being partial weight bearing as well.)

Overall, still doing really well with respect to recovery.  Some of the massive flare is starting to calm down.  I am more optimistic again. There are still challenges to work through, but they seem less insurmountable.

Week 7 left hip last summer.

Copyright © 2017 by Stef. All rights reserved.

Tuesday, August 29, 2017

Week Six: Full-blown Flare

I am six weeks post-op from right hip surgery and nearing 14 months post-op from left hip surgery. Things are going well with respect to recovery, but not going well overall.  I am definitely in a massive flare of the already existing issues that we'd had sort of calmed down before surgery.  Several weeks of crutches were too much for my body.

I am choosing to focus on what is going well.  I am still sleeping through the night in spite of increased pain.  This is nine to eleven hours a night.  The hips have been mostly pain-free.  Left got sore over a week ago and is included in the current flare.  However, even flared, it is better than it was pre-op.  Right hip got sore a few days ago, too.  This is the first it has had anything even near pain since right after surgery. Again, even sore, it is far better than it was pre-op.  Surgery has already proven itself more effective than injections early on just as it did with left hip last summer. I am back on the prescription anti-inflammatory, but that is more for the global flare than for hips this time (last spring it was for hips). I can walk short distances without crutches and it is pain-free, no limping, but still have to work on gait, strength, and endurance. I can swim (no kick), ride stationary bike, do PT exercises (advancing--more weight bearing work, more core work--mini-squats, planks, etc.).

The flare. This includes neck, back, both shoulders, wrists, hands, knees, even hips to a lesser extent.  All is a result of crutches. This has been building for weeks in spite of trying to prevent it.  It has been getting ever more challenging.  At present, it looks like the worse of the two shoulders will need an injection.  I am hopeful that the other shoulder and left hip will calm without injections. I am keeping activity to limited level--safe activities.  My body needs to move, but it is very easy to overdo it right now.

I encountered more difficulties with being "medically complicated" but I am so grateful for a medical team who are willing to support me in spite of the challenges. The flare reached crisis level late last week and I called various of the physicians who knew aspects of the situation.  The EDS/MCAS doctor was not available and no other provider at that clinic wanted to attempt to guess at what to do for me so deferred to local doctor who had only seen me once before. The conversation with surgeon's PA was very helpful--they will support me the best they can through this, restarted the prescription NSAID, and OK'd injection for the shoulder.  The appointment with primary care went very well. He is trusting that I know my body, know what helped work through the flare last time, and he will support me with what is needed--refilled the prescription NSAID, gave options for getting injections done. PT this afternoon went very well.  We are still making good progress with rehab.  Added back "new" exercises that I get to do again. No crutches now except for longer distances, then only one. Checked form and it is great--helped I am sure that I did exercises right up until surgery, then have picked up again as soon as able and cleared since surgery. PT did lots of soft tissue work on both hips, discussed shoulder exercises, iced both hips and both shoulders at end.

High points this past week include actually making it to church for the first time in well over 6 months!  Yes, the zero gravity chair came along, but I made it!  I still had both crutches, but they were more of a warning to others not to crowd or rush me than actually being used as been walking without them at home.

Week 6 left hip last summer.

Copyright © 2017 by Stef. All rights reserved.

Tuesday, August 22, 2017

Week Five: Making Progress

This week started off as tedious as ever, still on both crutches.  I am in the stage of recovery where nothing can get my heart rate up....except swimming.  However, swimming is still no kick, I have two not-so-good shoulders, so have to be super careful.  I still get worn out easily. Getting through rehab exercises, icing, self-care takes all day.  I am getting lots of reading done--when on the stationary bike or icing.  Otherwise, things feel time-consuming, tedious, tiresome.

My body is getting ever more uncomfortable from crutches--cried myself to sleep a couple of nights ago from shoulder pain--outright pain, not just soreness.  Back on pain medication at night for shoulders, neck, back.  Hips are so far OK, though left has been getting sore and nervous about flaring it up again. I took a day off from rehab exercises over the weekend as a desperate attempt to help calm things down, or at least slow the downward trend.  The surgical hip was doing fine, handling things, did not need a break, but the rest of my body needed help of some type and I was not sure what else to do. I am not sure the break helped, but it did not seem to hurt, either.  I still did some gentle range of motion work for both hips.

Today I woke with worse pain yet in left shoulder, right shoulder more sore, neck and back even more sore, left hip more sore, etc.  The result was tears--exhausted emotionally from how tedious the past few weeks have been, how sore and stiff the rest of my body has been, etc.  I had nearly lost track of how well surgical hip was doing with how poorly everything else was feeling.  I knew I had PT this afternoon and was desperately hoping he'd let me try walking without any crutches and just see if I am ready as not sure my body can handle another day of this.  I was literally fearful of flaring things beyond point of return. I did take pain medication this morning as had a sneaking suspicion I'd be crying all day if I did not as too tired of the situation to deal with the pain as well. The day did get better, but still working on staying off my feet/crutches as much as possible, lots of rest with ice packs.

Physical therapy this afternoon went well!  I was asked how things were going and was honest--right hip is doing well, the rest of my body not so much.  Tried some new things with exercises and they went well. I was told the right hip is doing well, making steady progress, getting stronger!  This is encouraging! Tried walking with a cane and that went well and was easier on my shoulder.  I asked if reasonable to try walking without any aids?  Yes.  I tried and both hips felt fine.  However, PT commented I was limping.....on left side.  Oops.  He had observed a lateral shift as I was walking. This is an old compensation pattern from pre-op left hip.  Sigh.  So, he had me focus more on form, try again, and said it was better.  So, I am officially cleared to walk without crutches at home!  Yay! Excited, but more relieved than anything.  Recommendation is to use a cane for longer distances, keep one or both crutches when out and around as a visible cue for others not to crowd or rush me.  I am fine with this, as I recall last time being glad to be off crutches, but also missing them because they did provide a very visual reminder to others that I was not 100% and move more slowly and carefully, thus not to rush me. PT iced both hips at the end today.  That helped. So relieved and grateful!  Hoping and praying everything does calm down.

Looking back, it appears week five was a bit rough last time, as well. However, it also it had its good times.  Similar to last time, I have added back some of the pre-op exercises for the rest of my body as able to stand more. This has helped some.

Interesting link to a blog post by a PT who has had/recovered from surgery for hip labral tear.

The highlight of this week was not rehab-related at all.  Rather, it was getting to view the solar eclipse!  So exciting to get to see!

Copyright © 2017 by Stef. All rights reserved.

Saturday, August 19, 2017

One Month: Holding Steady

Yesterday was a full month after the right hip surgery. It seems hard to believe it has been a month since surgery.  In some ways, it feels like it has been forever.  The tedious stage continues.  My body is exhausted from crutches and I wake stiff/sore every morning. I am cleared to use only one crutch around home as long as it feels alright and not too long of distance.  I can put full weight through with both crutches, but again, only as long as it feels alright. So far it all feels fine. I know I posted at one month post-op last time as it was a memorable date--the day I was first allowed to start weaning crutches and try walking both with one crutch and with no crutches.  The no crutches did not go well and I had to keep a crutch.  This time, I was allowed to try walking with one crutch in PT at four weeks, and since it went well, told it was fine to walk short distances at home with one crutch.  Well, the PT appt at one month (4.5 weeks) was pretty much just repeat--walking with one crutch still looks fine, so still fine to do so at home.  Otherwise, two crutches. Because I had already been cleared to do this, this was sort of an anti-climax to be just maintaining the status quo. We have still not even tried seeing how I do without either crutch. We know I can stand with full weight on surgical side. I think I am more puzzled than discouraged, but have to admit to being somewhat discouraged. This hip is doing better, tolerating adding weight on better than first one did, etc. Thus, I am uncertain why I am being held back.  However, I know from last time that weaning off of crutches is a crucial step, needs to be done in such a way as to make sure there is no pain and no limping.  We are still working on gait.  The rest of my body gets ever more tired of crutches.  I wake every morning with everything stiff and sore--neck, back, shoulders, wrists, hands, both hips.  Left hip has been sore the last few days--enough that when icing right hip first thing in the morning, I have iced left as well the last few days and that has calmed it nicely.  So, hoping to avoid full blown flare, but being cautious.  I had been limiting how much I am on my feet/crutches/walker anyway, but starting to do so even more and starting to become afraid of consequences of being on crutches/walker this long based on what happened last time and what is happening now. I still go nowhere non-essential. I have been wanting to get to church, but trying to wait until off crutches. I had been hoping to make it this weekend, but with still being on two crutches, this is now unlikely.   Besides, it is still hard to sit very long. (Family movie night here at home started out with me fully reclined in my zero gravity chair, but halfway through I moved to lying prone on the floor propped with a pillow.)  The other hard part of recovering from right hip surgery, is still not being able to drive.  I could drive pretty early with left hip. I am very grateful for sisters who are willing to make themselves available to give me rides.  However, I really want to be able to drive myself again.

I am still not on any pain medications or sleep medications, but things are stiff and sore enough to be considering restarting pain medication(s), and sleep quality is starting to worsen enough to contemplate adding back sleep medication(s). I know this is just an awkward, tedious, challenging phase of recovery, so I am trying to be patient and proactive versus reactive in my approaches.  However, coming off crutches with hips flared is not going to help the next stage of rehab, either.  Uncertain what it best. Hoping to get through the weekend alright and see how PT goes next week.

Copyright © 2017 by Stef. All rights reserved.

Tuesday, August 15, 2017

Four Weeks: Stay the Course

In some ways it is hard to believe I am already four weeks post-op, and in other ways, it seems like it has been much longer. This week started out much more optimistically than the previous week proved to be.  However, in reality has not really been much different. I can put more weight on the surgical side hip/leg now, but am still on crutches, still partial weight bearing--even if there is a higher percentage of weight on the leg, it is still not full weight. My shoulders, hands, wrists all appreciate this change in weight bearing ability, but are still stiff and sore from still having to aid with partial weight bearing. My body is getting ever more tired of crutches. Also, the additional weight bearing is as tolerated, so there are times I am still at the initial 20 pounds max restriction on surgical side.

I am still loving being in water--pool walking, PT exercises in the pool, swimming no kick, just hanging out in deep water, etc. Being in the pool is a break from crutches but being in water also provides counter pressure and lowers all pain. Both hips are pretty much pain-free, but the rest of my body is not and crutches have flared the normal problem areas.  Last time, I ended up needing injections in the other hip and one shoulder once off crutches.  Hoping to get by without needing injections this time.  So far, other hip is holding out great!  Both shoulders are not so happy, but not awful.  So, I am remaining optimistic.

Positive observations:  I was off pain medications very early after surgery, used some over the counter acetaminophen as needed with the move and travel, but then was off of that as well by 1.5 weeks post op.  I was prescribed non-optional NSAID (anti-inflammatory) for the first three weeks after surgery, but even that is done now and so far still doing well without any pain medications at all! I have also been off of all sleep aids since surgery, though used them a few nights here and there around the time of the move because of the general upheaval of routines and environment. Since then, I am sleeping through the night for the most part even without sleep aids!  This is huge!  I have been on some form (usually multiple forms) of pain medications and sleep aid medications for many, many years.  I did have a reprieve after surgery last summer, but was still on prednisone at that point. This time, not even on prednisone.  However, I am on super high doses of antihistamines to manage the MCAS (mast cell activation syndrome), and this is strongly suspected to be aiding with symptom control--both pain and sleep issues, along with numerous other symptoms. The antihistamines were what aided the final weaning fully off prednisone last spring. I have noticed a little stiffness at times in the surgical hip since stopping the NSAID, but it seems to be intermittent, not persistent. No increase in swelling though.

I had noticed at two weeks post-op that op side leg was already getting smaller from atrophy from being on crutches.  A little after three weeks, my sister commented my leg felt noticeably lighter when she was doing the circumduction "exercises" with it.  Yep, sigh.  I had asked PT the day after surgery if there was anyway to minimize the atrophy after surgery while on crutches and she said there was not.  So, it is what it is.  It is interesting how fast muscle is lost and how long it takes to regain it. Last time I had lost an inch circumference entire length of leg on op side by the time I was off crutches.  It took months to regain it.

Last time I had incision issues at 2.5 weeks post-op.  Things resolved fine.  However, it led to a discussion pre-op this time in context of recommendations to leave sutures twice as long due to the Ehlers-Danlos Syndrome.  Last time, I had been reacting to the stitches themselves by the time they were removed, so I was nervous about leaving them even longer. Thankfully, surgeon's PA said to still get them removed at the same timing as last time, but this time suggested steri strips.  So, that was what we did and so far, so good. Just recently pulled off steri strips (as directed) and things look good--at least as good as surgical incisions can look. Certainly looking better than the mirror image ones on opposite hip, which are wide, though fading nicely.

PT appointment at four weeks went well.  There has been some muscle tension/soreness, so lots of soft tissue work and less exercise work.  No AlterG today.  He said the hip is doing really well overall and he did let me try walking with only one crutch.  Since it felt OK, he said it is OK to use one crutch for short distances at home from time to time.  But, otherwise, still on crutches. Sigh. This hip is handling increased weight bearing better than I remember the first hip doing, but this is still a long process.  I am not nearly as wiped out after PT appointments this recovery as I recall from last time, but I do find those days more tiring overall and that it does not take much to wear me out. My body is siltl doing a lot of healing. I clearly recall some aspects of last recovery quite well even without going back and looking. However, it is still interesting to look at last year  Here is the 4-week post from last year. That week was challenging and taught me a lot of caution and has definitely impacted some of my choices this recovery. Experience teaches wisdom.

Copyright © 2017 by Stef. All rights reserved.