The Shoes

Amidst all my praise for all the progress Roger has made, there is one area in which he has not improved.  It’s his feet.  When he was little, Roger never wanted to be barefoot.  Then, there were a couple of years that Roger would only wear rain boots.  It was when he was 3-5 years old.  Any other shoes would cause him to meltdown.

Sneakers have been really tricky.  We used to be able to do Velcro sneakers.  But, alas, the Velcro starts to be less effective/less sticky and Roger would meltdown trying to reattach the Velcro over and over again.  We decided, since the Velcro were never tight enough, to do lace up sneakers.  He has been using lace up sneakers since he’s been in baseball.  That was how we got him out of rain boots for one day a week — he had to wear sneakers if he wanted to play baseball.  Thankfully, he eventually gave up the rain boots and will wear either sneakers (for school and baseball) or flip-flops.

Every morning has gotten increasingly worse since spring break.  It used to be tying his shoes 2, maybe three times, for him to be okay with them, for the shoes to be tight enough for him.  This morning I tied his shoes five or six times before we left for school.  He was in tears, screaming and hitting his head.  They still did not feel right to him.  I told him we had to leave or he’d be late.  Once we got to his school, he asked me to tie them one last time.  I did.

It’s so heartbreaking to see my son react like that.  When he was younger, he had many more meltdowns and would hit his head.  He outgrew/out-therapied the majority of that.  It’s just the damn shoe issue that keeps rearing it’s ugly head.  It will subside for a bit and then get ridiculous, and then subside, and then get out of hand again.  I am wondering if it is linked to anxiety.  Obviously there is a sensory component but for it to flare up, I think there is something else going on: anxiety, OCD, control issues.  These are the only times he gets violent — recently with hitting himself in the head and in the past (January 2018) with him hitting his head into my back.

Tomorrow he has baseball and I know the shoe tying will be a nightmare in the morning.  He’s also informed me that he is getting a small hole in the toe of his shoe and that he wants to buy new sneakers tomorrow.  Oh boy, sneaker shopping with Roger is a whole other story!

I look forward to Sunday when he can wear his flip-flops.

One week later

This week has been mentally exhausting for me. I had my second neurosurgeon opinion on Tuesday (3rd opinion overall, including last year’s orthopedic surgeon opinion).  All surgeons agree that I should have surgery.  Two told me the time frame was up to me while one told me I needed to have it in 2-3 weeks (all were looking at the same MRIs, x-rays, reports).  I had read that for cervical surgery one should have a neurosurgeon instead of an orthopedic surgeon.  That narrowed my decision to two.

After consulting with my husband, asking on a few ACDF Facebook groups, texting/messaging nurse friends, and writing a pro & con list, I made my decision by Wednesday morning.  It was an incredibly difficult decision filled with much anxiety and sleeplessness.  I didn’t have a “gut feeling” about one doctor as I had with the ulnar nerve surgery.  Each surgeon had polar post-surgery protocols.  That made my decision much more confusing.  I was not only choosing a surgeon but choosing which recovery I thought would be best for me.  One said I would be in a collar for 3 months 24/7, the other said I would be in a collar for two weeks when I was up and about (not while sleeping/sitting).  Thankfully I am OCD, so researching is second nature!

This week I also began seeing a new psychologist. I am trying “telehealth” which is basically skyping with a therapist.  My new insurance uses Amwell, so I thought that with my time constraints it would be an easy solution.  It was the perfect timing with surgery happening in less than four months from now.

The psychologist was a good fit.  She understood having a special needs kid, my stress level and, overall, current situation.  I feel like it was almost kismet that I made the decision on which therapist to use.  The past few weeks it has been suggested to me (by independent sources) that I should use Mindfulness-Based Stress Reduction.  The psychologist also made this referral.  She told me a couple of websites to consult, one being a link to a free MBSR online course. I read the Introduction/Getting Started sections and will, formally, take the plunge this upcoming week.  It is an eight week course which requires 30 minutes of practice time per day.  That will be difficult but I really want to make this commitment to myself.  (If anyone is interested, the website is palousemindfulness.com)

 

Quick updates

Today has been a slow and steady type of day.  I had a nice workflow going, had my “maintenance” allergy shots (which are itching up a storm still), did a teeny bit of straightening around the house, walked with Roger to and from school, and am now stationary bike riding and typing.

The wind picked up on the way home from Roger’s school and I question whether these allergy shots do a damn thing.  I still take a Zyrtec and one Benadryl each night and sometimes an allergy pill during the day.  I still get congested and sneeze quite a bit — which Rob is concerned with re:  cervical fusion/ACDF surgery.  And, I still get numerous sinus infections, which the allergist touts does not occur once you get allergy shots.  I think it’s been 3 years since I’ve been getting them and the only reason I am not stopping is fear that it may be worse without them. Then I’d have to start from the beginning again and build up my tolerance.

My mother had her follow-up with the orthopedic surgeon regarding her broken pelvis.  The bones are healing nicely, but she is in the worst pain of her life.  When the doctor did her exam, it was obvious that her intense pain is stemming from her back.  She is trying to get a spinal cord stimulator implant to relieve her chronic back pain.  She is getting in-home OT and PT.  She is such a strong woman!  My father has been ceaselessly taking care of her.  He is really remarkable, though exhausted, at nearly age 82.  We try and go over to visit and when my father needs time away.  However, it is hard with our daily work/Roger schedule!

Roger is doing well though he’s starting to complain about being tired much more often.  I am thinking he may be affected by seasonal allergies or still adjusting to the time change.  He has asked to stop taking Hip Hop Boys.  He is still in swimming lessons, School of Rock, Miracle League baseball, and occupational therapy.  Maybe that is why he is exhausted!

Robert quit his office job about a month ago and is now working from home as a full-time, independent artist.  He has been building up his Instagram followers to over 82,000 and been doing some vendor shows.  Next month, we got a booth in the artist’s row at a convention in Dallas.  He is making a steady income and much happier.  We still have to adjust to having only one car though — I think that may be the hardest adjustment in the weeks to come.

That’s a wrap!

 

 

What a Pain!

Today I have the best of intentions to clean the remainder of the house while my son is out with daddy this late afternoon. In anticipation, I have been doing a little bit of dusting here and there. Oh my, my back/neck/arms hurt! I am doing NOTHING intense, just walking and mildly dusting.

My thoughts as I continued to dust: do I even need another neurosurgeon appointment?! (I do just in regards for timeframe surgery may be necessary). A few days ago I read through blog posts from July describing my neck/arm/head pain and remembered how physical therapy made it more unbearable. I guess the months that the pain diminishes or lessens in degree, I forget about the painful months. I don’t have many readers to my blog but this journal really helps me in keeping a log of pain (physical and emotional).

Last night, I looked over at my son beside me in bed. It caused he most excruciating pain. I must turn my body when I am upright and looking side to side. It brought tears to my eyes realizing surgery may be closer than I hoped.

End of week

It is the Friday of spring break.  Unfortunately, it was not quite a break for us.  My husband and I had work and my son was in camp all week.  Luckily, he was so excited for camp each day and said he had a best friend at camp.  Last night, we went to Main Event and played video games and Roger got to play laser tag with a friend from his school.  Today, after camp, my husband is taking him to the park and then we will all go to my parent’s place for dinner (bringing over Chinese food).  Roger is probably a bit disappointed I did not go to the park, but I woke up with horrible allergies.  It’s that time of year when I start having days that feel flu-like but know it is just what happens when the weather is nice.  I get to only explore the great outdoors on hundred degree days that are allergy-free.  This is truly not fair!

I have decided to have another appointment with the neurosurgeon I met with last year prior to my ulnar nerve surgery (who recommended traction).  I have an appointment with him two days before my follow-up with the new neurosurgeon.  As you can see, I am really wanting avoid surgery!

I have not received a call from the imaging place yet re: x-rays.  I called them yesterday and they did not get the order yet.  They said they will call me.  So, this afternoon I emailed the neurosurgeon office via the patient portal and will follow up with both over the phone on Monday early afternoon, if I hear nothing.

Now that a couple of days have passed, I feel like the idea of surgery is a long-past memory.  I am cheerful, despite allergies.  I am loving my new office arrangement and ordered a new, larger turquoise rug (to compliment the orange walls), so I can stretch during breaks.

Tomorrow hopefully my allergies can subside so we can enjoy a day outside in the gorgeous weather.  There is a St. Paddy’s Day Texas Style festival in Lewisville I would like to check out.  I have also heard the Dallas Arboretum is beautiful.  Hope you all have a fabulous weekend!

Neurosurgeon

First off, let me say that I have been dealing with this back pain for over a decade.  I was working in NYC when I started treatment on my back.  I have been in and out of physical therapy, had a few epidurals, and many x-rays and MRIs over the years.  The pain in my back specifically and has been pretty constant since 2014 and my limited range of motion since 2007.

Since being in TX, I was referred to one orthopedic doctor who said I had three options:  1. Physical Therapy 2. Epidurals 3.  Surgery.  He said it was up to me.  I went the PT route and never returned to him, since he offered no advice.  Then, I went to a different orthopedic surgeon who set me up with a pain doctor for epidurals, since PT was not helpful.  Last year this orthopedic surgeon said I needed ACDF surgery.  I was hesitant because he suggested the same to a friend who was told her disc issues were very minor by another doctor.  So, I met with a different neurosurgeon at the time that recommended traction over surgery, since, at the time, my arm and hand pain were the biggest issues.  Also, my PCP at that time suggested I get an EMG to see if my arm pain stemmed elsewhere before committing to ACDF surgery.  That is when it was discovered that I had severe compression of my ulnar nerve at my elbow.  I had ulnar nerve transposition surgery last August and “forgot” about my back.

Currently, the past couple of months, arm pain has returned, along with the ever-present neck pain, headaches, shoulder pain and mid-back pain (all due to my C5-C7 discs).  I went back to the surgeon who performed my arm surgery.  She said that what I described was most likely due to the my neck issues.  I went back to the pain doctor, set up two epidurals and a referral to a neurosurgeon who she highly recommended and was conservative in his approach.

The new neurosurgeon was very straight forward.  He said, at this point, physical therapy or epidurals will not help.  They may help some of the symptoms but will not make the underlying issue better.  He tested my reflexes and did some sort of flicker test on my fingers. My middle finger on my left hand twitched.  He said this was definitely indicated that surgery is necessary. He recommends ACDF surgery on 2 levels (as the orthopedic doctor suggested).  He said the level above is having some slippage but, since he is conservative, would not work on that level unless the new x-rays he ordered show more slippage from the x-rays of 2015.  He said surgery was not urgent but needed to be done.  Our perception (my husband and I) thought that meant that we would discuss in a year, maybe five.  Thankfully my husband asked for a specific time frame.  The neurosurgeon said 2-3 weeks.  Um, we would define that as an “urgent” time frame.  He retorted that in the medical field “urgent” meant surgery needed to be done within a 48 hour time frame.

I have a follow-up appointment in two weeks where the new x-rays will be discussed, as well as the plan for surgery.  I did tell him I could not have surgery so quickly.  I have a colonoscopy in May and we have been planning  a very nice summer vacation for the end of June.  I will be in a neck brace for 3 months post-surgery. I cannot drive in a neck brace and we are driving to Denver.  He did not like me waiting so long — but I’ve been waiting for a year with all the last minute attempts at another round of physical therapy, epidurals, and ulnar nerve transposition surgery.  He said to avoid anything jarring: running, jarring exercises, riding a horse, being on a boat, and not to fall when on the mountains!

I guess I need to get back in touch with HR tomorrow and find out what short-term disability I can get since I had surgery not so long ago…What a fun Wednesday!