Unexpected News...

May 22, 2018

I had emailed my doctor at Mayo Clinic asking for a letter showing that I am not to be alone for the first 30 days after surgery.  It was in my patient inbox today.

I sat there blankly staring and having one of the worst panic attacks I have ever had.  The last line of the letter states that I will need someone to be with me for the OTHER side having surgery approximately 3-4 months after.

Ok- first off I knew that I needed a PAO on both sides.  I really did.  But when I went in for my consult back in March, I understood that I would be just starting to feel like myself approximately 6 months after... and that full healing would be around the 1 year mark.  So I figured I would be having surgery sometime early next year.

Imagine my surprise reading that last line.  Reading that last line and knowing that a PAO is one of the most difficult orthopedic surgeries performed on the human body.  Reading that last line with no idea that they intended to do them so close together... Imagine..... my shock, terror, stress levels...

Yeah- I am scared.

Good news?  I burned through my deductible this year.  So... it's covered.

Oh boy....

Well, this has been a dead page for a bit as I let myself slide into the comfortable boredom that I know well as my life.

Things are getting... interesting. To say the least.

Back story:

6 years ago, I  had my 3rd and last baby. Afterwards I had some hip pain in my left hip.  I mentioned it to my doctor who told me that my ligaments were just stretched take some time to heal. So I tried to. 

6 months I went back, it still hurt.  Ignored again. 

2013, I take a trip by plane. During the security xray, I am pulled to the side and questioned. My left hip looks wrong.
It happens to be the one that hurts. I am released no further issues.

A year later... my mobility is starting to be limited... and with no testing of any sort, they send me to physical therapy. After only a few weeks I KNOW this isn't for me. It's not an athletic burn, it's excruciating pain after every appointment.

I give up. I decide that nobody will listen.

As the next couple years go by the distance I can walk with no pain gets shorter and shorter.  Soon it's only a couple of blocks before I limp. I struggle with my dogs, my kids. Going to the parade to watch my son march in his Boy Scouts uniform was so painful I cried sitting on the curb.  My husband's family upset at me for "wanting help or attention seeking".  I was in agony.

Last year I fell, I though I'd only injured my pride and earned a new bruise. Within a few weeks I could no longer sit or sleep without pain. This pain I knew so well was much worse than I'd ever known. I wound up at the walk in clinic.  For the first time, someone orders xray, a test to see what's really going on. She assumes a dislocation in my hip, but sends me to an Orthopedic anyways for a 2nd opinion.

He tells me I have sever hip dysplasia on both sides of my body. I need surgery on both, but first this side because my labrum is torn.  I'm floored. It's a birth defect. Normally not painful but this torn labrum had been the signal.  He tells me I'm too young for this hospital to do surgery (34 at the time).  A referral goes to Mayo.  Another 8 months go by. I'm on the waiting list. (Remember my plane ride 4 years before... THE TSA did better work than the doctors I'd asked for help from!)

In those next 8 months I have my physical, I'm informed that I have possible cancer. I go through testing, and find I have uterine fibroids, and an unidentified mass in my uterus.  What else can go wrong?  Biopsies preformed and no answer.  I'm given a choice. Ablation which won't help my awful periods by my doctor's opinion, birth control, or hysterectomy.  I select the hysterectomy over the next couple weeks, but opt to wait until after I can have surgery at Mayo as to not continue my hip pain by extending my time on the wait list.

The beginning of March I turned 35. I get my period. These have been bad my whole life. But something's different this time.  I bleed for 3 weeks, I'm severely anemic. I go to the ER seeking treatment in the form of a transfusion. I know that it's bad.  They tell me go home and take an iron pill. I'm depressed and discouraged.  2 days go by, my period won't stop. My doctor's office calls. I'm scheduled for an EMERGENCY hysterectomy the next morning. I scramble all day to find care for my kids.

The same day that I find out I'm going to do surgery, my surgery date at Mayo clinic is announced. Too close. I'm sadly forced to reschedule.

My hysterectomy goes ok. My bladder gets a small cut, So I use a Foley bag to pee in for 10 days. After surgery I wake up to the blood transfusion I had asked for at the ER a couple days before. I'm told I quit breathing after surgery but I'm alive so not really interested in the info. That might be the painkillers confusion too though.

Good news, my anemia is gone. Better news? The possible cancer was cancer and it's gone now.

PAO surgery scheduled for July 13th this year, I move forward.

But about a month ago while reading over links about my hip surgery my mother came across EDS. It can cause surgical issues and she's worried. I show signs.  Great, I panic. 

I spend a month reading. 

So here we are. CURRENT.

After about 100 hrs of reading... I'm positive I have it. Not a doubt and happy to feel my life-long health issues all are connected.  The road to diagnosis arduous. But I am working on it. I promise to share more info later. This is HUGE.

Last week an appointment with my orthopedic. My knee crunches and sublaxates easily, scaring him.  He also thinks EDS. I limp out with my first of what looks to be many more braces and a physical therapy appointment.

Today, I went back to the clinic, my brace felt off. Turns out wrong size and it was a brace for the left leg.  It is my RIGHT LEG that needed it!

New words I learned this month

Sublaxate: partially dislocate
Paresthesia: pins and needles tingly sensation
Chonromalacia: crunchy noise from joints
Patella: my knee cap
Peri-acetabular Osteoectomy: A scary surgery with a long recovery. (You Google it, lol)