TOS Surgery Part 2 The Honeymoon Period – The first two weeks home. December 18, 2016 – January 2, 2017

Following my thoracic outlet syndrome (TOS) surgery, I was discharged from UVA on Sunday, December 18, 2016 with the Jackson-Pratt (JP) drain in place to remove any lymphatic drainage that might accumulate in the surgical area due to a post surgical complication, a chyle leak. I don’t remember what time we left the hospital but I knew my husband planned to stop at Wegmans on the way home to pick up food that I was allowed to eat on my yummy zero fat diet.  I knew it would take approximately 2 hours from the time we left the hospital until we reached home so I went ahead and asked for a Flexeril and tramadol before leaving UVA.  I pretty much slept all the way home.  While my husband was in the grocery store I was gone… zzzzzz… totally sleep.  However, when my husband got back in the car I about jumped out of my skin.  Medication does that to me.  I really don’t like taking medications.

When I got home I found a notebook to document my daily JP drainage amounts and also began to document daily occurrences. I did this mainly so I would remember who bought us meals and visited so I could send thank you notes later.  Because of these notes I am able to piece together enough information to write this blog.  We were so fortunate to have wonderful friends that delivered meals for my children while it was in the hospital and that my husband could enjoy when he would return home at the end of each long day after spending it with me at UVA.

The chyle diet instructed I could eat up to, but no more than, 20 g of fat a day, carefully spreading it out throughout the day, but I didn’t eat near that much fat (staying around 5 g of fat a day) because I knew if I ate too much I could develop an accumulation of fluid that would collapse my lung, a chylothorax. My friends and family know I’m a big foodie.  When is the most delicious time of the year?  Christmas time, of course!  Well, not for me in 2016. (Look, I’m a poet!)  Friends and family continued to bring wonderful meals that my husband and children absolutely loved.  In fact, my husband said it was some of the best food he ever had.  Me?…  I had some delicious boiled chicken breasts, salad with fat free dressing, and plain green beans. Friends and family did send food I could eat and my sweet friends from my small group at church sent a beautiful fruit basket.  I did find some other foods that I enjoyed and honestly, it really wasn’t that bad.  Plus, I really didn’t have much of an appetite.  On the bright side… I did not gain my normal 5-10 pounds during the Christmas holidays.

Thank goodness I had the foresight prior to surgery to purchase one of those pill boxes that elderly people use because they take so many pills. I had stocked up on a lot of multivitamins and supplements to promote nerve healing.  Between the supplements and my prescribed medications it ended up being quite a few pills.  I ordered the pill box because I expected to have some difficulty opening the pill bottles and thought it would just make things a lot easier on me, and it did.  In reality, this was also a necessity because even though I was not taking any heavy narcotics, I felt very drugged up.  I couldn’t remember if I had taken the medication or what time I had taken my medication.  I found it necessary to create a homemade medication administration record (MAR), which nurses used to document when medications are administered to patients.  I would wake up at different times so I would need to take my Advil and Tylenol at different times each day.  I could not keep track of this unless I wrote it down each and every time.

When I got home Sunday afternoon the first thing I wanted to do was take a shower and wash my hair. I’ve been married to my husband for 17 years.  This is the first time I ever had to rely on him to physically take care of me like that.  I held my JP drain while he washed my hair, asking lots of questions like how much shampoo was he supposed to put in my hair and how are you supposed to use conditioner… because men don’t use conditioner.  He helped me get dressed and dry my hair.  Things you never think that you’ll have to have your husband do for you… As far as I recall, I took the prescribed medications and slept pretty well that night.

 

Incision and drain. First day at home.

The next morning was Monday, December 19. My husband had previously scheduled appointments and had to be gone that morning.  While he was away my mom came over and curled my hair (yes, I use hot rollers!) and I put on some makeup so when Mark got back I think he was surprised to see me looking “normal”.  I know my mom came back and brought dinner that evening but other than that I don’t remember much.  I was taking the prescribed medications (which were not heavy drugs) and was pretty much out of it.  A friend came to visit me Monday evening and another one came the next day.  I’m sure I looked like someone from the walking dead.  The medications I was taking at night, which were only tramadol, Flexeril and the Neurontin, helped me sleep but I was jumping awake frequently with my heart racing.

When you can’t move your arm due to severe muscle spasms so you ask your husband to put your hair in a pony tail.

The only comfortable place to sit was a hard back rocking chair. This allowed me to press a tennis ball against my rhomboid spasm and press against the heating pad.  Let me tell you about this tennis ball.  I had physical therapy prior to surgery.  My PT is awesome, by the way.  She identified that my thoracic spine was fixated.  Part of my home exercise program involved putting 2 tennis balls in a sock and tying the end of the sock.  I was to gently lie back on this sock containing the tennis balls so that one was on the left side of the thoracic spine and the other was on the right side, in an effort to keep that section of my spine mobile and not fixated.  This sock, with the two tennis balls, became known as my ball sack.  At any given time my family would hear me yelling, “Has anyone seen my ball sack?”.  It was a big joke around here, cracking me more up than anyone else.  At one point the dog grabbed my ball sack and ran outside with it.  Thank goodness Mark got it and brought it back in.  Tragedy averted!

The infamous ball sack

During this time I documented the drainage from my JP drain. There was 30 cc on Monday the 19^th when I emptied it and that was in a 24 hour period.  During only a 12 hour period on December 20 there was 35 cc.  I don’t remember how much drainage was in there when I got up the morning of the 21^st but it totaled more than the 30 cc during the 24 hour period that I had documented on Monday the 19^th.  My husband and family will attest to this… I am pretty calm, cool and collected nearly 100% of the time.  Medications do weird things to me.  One of them is they can make me emotional.  Something I was taking was causing me to feel very drugged up, confused, and unable to think rationally and sometimes unable to find words or form words properly.  I was scheduled to return to my surgeon’s office the morning of December 21^st.  I had already gotten myself ready and my husband was taking a shower.  I went in the other bathroom and I was looking at the drainage in the JP tube, thinking that it looked like a lot of fluid, and I started freaking out. In my confused, irrational thinking state of mind, I began to worry there was no way they would remove my JP tube that day and that in fact I was probably going to need surgery to repair the lymphatic leak.  I really started freaking out.  I started crying.  This is not me… I don’t do things like that.  Then I started talking to myself saying, “Girl, you had better get your shit together before Mark gets out of the shower or you are going to freak him out!”  I tried my best to calm down but I could not.  Mark got out of the shower and found me having this melt down.  It was bad… so bad that I had to go find a Xanax that was prescribed for me 6 years ago when my Dad died so that I could calm down.  I KNEW in my rational brain that I would not need surgery.  Surgery is done on people with drainage of more than 1000 cc of fluid a day. And, worst case scenario was they would just leave the JP drain in longer. Again, however, I was not being rational, not thinking clearly, and I knew it was from the medication.  By the way, hardly anyone knows that this happened so I’m sure this will be new information to most of my friends and family.  Anyway… The Xanax kicked in, I got myself together and we headed up to UVA.

I saw the nurse practitioner who said I was doing fine and removed the tube. My husband was shocked at how much tubing was inside the wound and commented on how big it was.  (You don’t know how difficult it was for me to refrain from saying, “That’s what she said.”)  I was instructed to return on January 2^nd for a chest x-ray.  In the 2 days prior to that chest x-ray I was instructed to eat “some fat” so we would know if the leak had healed. (How barbaric is that??)  I was not given any direction as to exactly what that meant.  My husband said, “What will happen if it’s not healed?”  They told him not to worry, I would let him know that it wasn’t healed.  I knew that this meant I would have severe shortness of breath due to a collapsed lung and we would be heading off to the emergency department.  While we were there I explained that one of the medications was causing me to feel jumpy and drugged up.  I felt it was the tramadol.  Therefore, the tramadol was discontinued and Toradol was ordered, which is just a prescription anti-inflammatory drug.

I was still having severe muscle spasms with movement, most especially when doing my home exercises. Now that the drain was out, one of my good friends, Terri, helped me get in touch with a very gifted massage therapist with healing hands.  This massage therapist literally helped me maintain stability with my thoracic outlet syndrome symptoms for quite some time in years prior. (During that time I did not know I had TOS and just thought I had back pain, trigger points and ‘shoulder problems’.)  However, he stopped doing massages and returned to college.  After that, it all went downhill for me.  Massages from others did not provide the relief that they had in the past and eventually caused exacerbations of my pain instead of giving me any relief.  This awesome and gifted massage therapist came to my house on Thursday, December 22^nd and that massage provided me some great relief.

The search for the perfect heating pad… the struggle was real. Mark purchased so many for me to try.  Some of them didn’t even get warm. Heating pads and a hot bath were the only two things that gave me any relief from the muscle pain and spasms. I was still using the one my mom got me but it had been pretty abused by that point.

Unfortunately, I was not able to get in to see my regular physical therapist for dry needling that week. I was fortunate, however, that Dr. Cherry’s staff were able to schedule me to see a physical therapist to get dry needling at HealthSouth UVA on Friday, December 23.  Between the dry needling and the therapeutic massage I had great relief from my muscle spasms.

 

Dry needling is awesome.  One day I’ll write a blog to explain this further.

Much of the information I am documenting here is from my notes. I don’t remember a lot that happened during this time.  I didn’t even realize it until I was talking to one of my long time best friends, Debra, and she told me we had already talked and I had already told her everything that I was trying to explain.  That was very weird because I had NO recollection of any of this.  (I think) I was sleeping fairly well at this point at night because I was taking the Toradol and Flexeril at night and also the melatonin, which I took prior to surgery.  However, I was starting to notice that the Toradol would give me an all night headache.  In the morning, I would wake up very sore.  My sternum, the entire right rib cage, and entire upper right side of my body was extremely sore.  My rhomboid muscle was still extremely sore from that initial constant spasm I woke up with after surgery.  I had soreness in my neck, trapezius muscle and shoulder as well.  Each morning I would get up and Mark would help me get situated in the hard back rocking chair and help place the heating pads, my ball sack, and pillows in their appropriate places to get me comfortable.  Then, each morning he would bring me my medications and a cup of coffee.  He learned to make my coffee just the way I like it. It would take about an hour for the meds and heating pad to take the edge off the pain.

I do remember talking to Mark on Christmas Eve morning when I woke up, after drinking at least half of my cup of coffee (I don’t talk to anyone until I’ve had at least that much coffee in the morning). Still feeling emotional from the drugs, drained from the surgery, and in general what I would describe as just being very uncomfortable, I told Mark I just wanted Christmas to be over.  I was not in the mood to celebrate.  A few moments later he was in the kitchen when he exclaimed, “Look what I found!” I’m thinking what in the world can be so important that he is yelling so excitedly when I just woke up and haven’t finished my coffee yet.  I heard him walking behind me, assuming he was coming to show me this thing that he found, when I turned around my son was standing there!  I’ve never been so surprised in my life.  I jumped up, as quickly as I could, wrapped my arms around him and cried like a baby.  Not only was Will here, but he bought his sweet girlfriend home to meet me for the first time.  Poor thing… this was her first impression me…looking like the walking dead and bawling my eyes out.  I’m pretty sure Will has never seen me cry like that in his life.

So, here is the back story… Will had planned to come for Christmas and bring his girlfriend, Kimberlenn.  I was super excited that they were coming and could not wait to see Will and meet Kimberlenn.  Well, then surgery was scheduled and Will got a new job working with Fed Ex and he would have to work on Christmas Eve and the day after Christmas.  We decided we would have to reschedule the visit for some time after the holidays.  I couldn’t believe he actually was able to get off of work and come home for Christmas and surprise me!  Also, his 25^th birthday was Christmas day. (Yes, he is a Christmas baby and two of my other children were born in December, AND my two dogs – they count too.)  They had come in the night before and slept in a spare bedroom that we have in the detached garage so I had no idea they were here!  The only other things I remember about Christmas Eve are that Will and Kimberlenn went to surprise my mom and while they were gone my dear friend, Terri, drove out of her way, on her way to work, to bring me the only thing I was craving … cilantro lime rice.  It was delicious.  That evening we watched one of our favorite Christmas movies, Elf.

Will and Kimberlenn made my Christmas with their surprise visit!!!

When you have teenagers, Christmas morning isn’t quite the same anymore. Samantha, who had just turned 16, and Colt, who had just turned 14, calmly open their presents Christmas morning.  After that, we went to my Mom’s, as we always do on Christmas day.  It was the healthiest Christmas day lunch I’ve ever had in my life!  I probably made it until about 2:00 before we left to go home because it was my nap time.  We enjoyed the evening with Will and Kimberlenn before they had to head back to Knoxville, Tennessee the next morning.

 

Healthiest Christmas lunch I’ve ever had.  No fat, but it was good!

There were two reasons that I pushed to have my surgery in December. First, it is the slowest time of the year in my job.  I’m a legal nurse consultant and receive the least amount of work from my clients during the Christmas holidays.  Also, I always take off the week between Christmas and New Year.  Secondly, I wanted surgery in December because I had already met my deductible for the year.

After we said goodbye to Will and Kimberlenn, Mark and the kids undecorated and put all of the Christmas decorations back in the attic on December 26 and we went to the river for some R&R as we do every year. One of my best friends purchased the house directly across the street from me in our river neighborhood this past October.  I do recall feeling particularly drugged-up on this day. I thought it was perhaps exhaustion from the holidays.  In fact, I slept all the way to the river in the car.  Mark asked me if I had accidentally double dosed medication because I was so out of it.  I was still in the car trying to wake up when Mark came back to the vehicle to unload the suitcases and told me that someone had decorated our house for Christmas.  I knew that this someone could only be my friend Kim.  When I got out of the car and walked to the house I first saw a handmade Christmas wreath on my door with lights on in.  Inside literally every surface decorated, there was a little Christmas tree perfectly decorated with white lights in our den, candles in every window and lights on our front porch.  I’ve never been so touched by an act of kindness in my life.  I texted her and told her to come over.  As soon as I saw her I lost it again… and started crying like a baby.  She explained that she and her boyfriend had come over and decorated the house because she wanted me to have a good Christmas, relax and enjoy the decorations. Wow… I can’t imagine how much time it took them to do all that and honestly cannot put it into words how much that meant to me. 

All of this was done by my friend Kim and her boyfriend, Eddie, as a Christmas surprise to us!

On Tuesday, December 27, I realized my bicep muscle was entirely flaccid but it had become very sore. I had increased pain in my neck, shoulder and entire arm.  However, my arm remained pretty much entirely numbin  the radial distribution to my thumb and forefinger.  I called my surgeon’s office and spoke to the nurse practitioner who increased the Neurontin to 300 mg three times daily.  My chest and incision were still mostly numb; however, some sensation was returning in the form of hypersensitivity to the point that I could not tolerate anything touching my chest.  My plan during this week of respite at the river was to get physically active, start my own personal rehabilitation, and build endurance.  I had been diligent all along about doing my physical therapy exercises.  If you don’t do them, scar tissue can develop along the nerves and that can cause permanent damage.  Also, if you don’t work on range of motion you can develop a frozen shoulder or other complications.  At this point I was very happy with my range of motion and ability to do my exercises without much pain.  The muscle spasms had calmed down considerably.  I increased the Neurontin as instructed and immediately felt better.  I walked a mile around the neighborhood with my husband that afternoon and sat at the end of the pier breathing in the fresh river air.

Never underestimate the healing waters of the Rappahannock River, even in December.

The following day, Wednesday, December 28, I was feeling better with the increased dose of Neurontin and decided not to take the afternoon 2.5 mg dose of Valium, a very low dose I had been taking for the muscle spasms. That was a terrible mistake and resulted in a significant flare-up of pain.  However, I did walk a mile that day with my husband and my friend.  I was having some pain in my arm, especially with the exercises in which you laterally walk your fingers up the wall.  The right side of my neck was pretty sore and many areas of hypersensitivity developed in my chest and right shoulder.  My bloody dermabond (glue) began to peel off the incision on this date so it started looking a little ‘prettier’.

 

The top picture is from the hospital and the bottom one is after the glue peeled off. The hole below it was where the JP drain was removed.

My friend Connie and her husband and son, who live on the other side of us at the river, came down for some post-Christmas relaxation on Thursday the 29^th. Connie is working on her yoga certification so I asked her to do yin yoga with me.  I had bought my DVD from home and wanted to try just the leg portion of it.  Prior to surgery I worked out a lot and my legs felt stiff and tight so I thought it would help to stretch them out.  On this particular DVD, by Mimi Solaire, there are three different 20 minute yin yoga work outs.  Connie and I could not figure out how to make the DVD skip down to the leg section so we just decided to do the whole thing and I would just do what I could.  It turns out the back section and then neck and shoulder section were tremendously helpful to me.  So, sometimes when two blondes can’t figure out how to use the remote control good things happen.  Yin yoga became part of my daily recovery plan.

 

I continue to walk around the neighborhood, do my therapy exercises, do daily yin yoga, and in general tried to spend time outside each day soaking up the healing energy from the river. I still required a daily nap in the afternoon. I would hit the wall by 2 PM and be down for the count for a couple of hours. Our wonderful friends at the river fed my family the majority of the week.

Poppy and Pebbles love the river as much as we do.

I had been instructed to eat “some” fat the two days prior to my chest X-ray. I was very careful on New Year’s Eve and allowed myself approximately 25-30 g of fat, which was a big treat!  More friends had arrived to spend New Year’s Eve at their river homes.  Our friends, Rob and Elizabeth, had an oyster roast so one of my special treats that day was a roasted oyster with a tiny bit of bacon and Parmesan cheese.  That was delicious!  After spending a bit of time catching up with friends at their house, it was nap time for me.  That evening my friend Kim had us over to her house for wonderful New Year’s Eve dinner.  Mark and I went home fairly early and I rested on the couch while he slept.  The kids decided to wake their Dad just before midnight so would all see the start of 2017. We were in bed by 12:02 AM.

On New Year’s Day I ate between 40 and 45 g of fat and had no symptoms; therefore, I was feeling pretty confident that the leak had healed. I did yin yoga with Kim that morning before we packed up and returned home as the kids had school Monday morning and I had a doctor visit.  I was able to soak in my bathtub that night, which was awesome. Afterwards, I tried to roll my back out on the foam roller and hit a spot in the back of my shoulder that caused excruciating pain down my right arm.  Nerves were starting to wake up. But, I had no idea what was going to happen next …

I had 20 g of fat for breakfast on January 2 prior to heading up to University of Virginia Hospital for the chest x-ray, which was normal, proving the leak had healed. Yay!  On the way home we stopped at Wegmans to pick up a few things and have lunch.  I was free to eat whatever I wanted for the first time since surgery.  However, I really had no appetite.  But, my dear friend, Debra, who is Italian and has taught me the love of many things (most of which are Italian) was on my mind that day as I browsed the take-out food section.  I ended up getting a pasta salad and eating only the Kalamata olives and feta cheese. That evening a friend brought us dinner which I was able to eat and it was so very good! I so appreciate all of my friends and family for their love, prayers, support, and meals during this time.

My next blog will reveal what happened when I returned to real life including the realization of just how cognitively impaired I was and what I did about that, the start of physical therapy, my worsening pain, and my search for holistic/alternative treatment for my pain. The story has just begun…