MRKH Type 2 – Surgery Required

So I got the phone call yesterday afternoon from my neurosurgeon’s office – insurance APPROVED my surgery!!!

While I maintained my composure (barely) while talking with the woman in the office and asking a few questions, as soon as I hung up the phone, I lost it.  I know, I know – I cry about everything!  But I was holding a tremendous amount of tension over the pending approval – so getting that call was monumental to me!!  I knew that it had set in motion a whole lot of things needing to be done in a short amount of time.  But let’s back up a few steps…

If you don’t already know, I was born with MRKH – 4 letters that would define much of my adult life.  I was born without a uterus and would never be able to carry a child.  I have MRKH Type 2 which means that I also have a pelvic kidney, a mild curvature in my spine, and apparently – I tend to wear out my joints and connective tissues in them much sooner than most people.  As I get older, the spine and joint issues tend to come into my awareness more and more, and the issues of not being able to carry a child are less of my focus.

Many people, even those very close to me, do not know that I live with chronic pain.  My body hurts somewhere most of the time.  As the pain focuses in a particular area and I become aware of the fact that it wakes me up at night, or I am taking something for the pain every day, I have learned to be a good patient and talk to my doctors about it.  Over the years this has lead to surgeries on both shoulders and both feet.  I’ve gone through many MRI scans, rounds of physical therapy, visits to the Osteopath and Chiropractor, and had steroids injected into joints all over my body.  I do everything I can to keep myself healthy and mobile within the limitations my body sets.  Currently, I’m dealing with pain in my low back – and that is my current focus and why I’ve dusted off the blog to tell my story.

You see, I’ve always found great comfort in writing – it helps me to heal and to process what I’m feeling with greater clarity.  I’ve also found that reading other people’s accounts of their own recovery gives me an additional level of comfort when I’m facing a new challenge.  So as I embark on this latest surgery journey, I made the decision to use my blog to document it,  and as a way for family and friends to stay informed.  If you want to stay up to date, I encourage you to subscribe to the blog using the buttons over there on the right side>>>>> so you will receive an email when I post something new.

Ok – the nitty gritty of what I’m feeling, what I’m doing about it, and why I’m headed for surgery.

Generally speaking my back hurts – low back pain is very common and there  are any variety of causes.  My specific diagnosis is Degenerative Disc Disease, Spinal Stenosis, and Spondylolisthesis.  I did not have a specific injury that caused this, it’s just been brewing for most of my life.  I have general boney aches in my low spine as a result of the discs not providing the cushioning they are supposed to, and there is very little space between the vertebrae.  What once was memory foam is now rough cut lumber.  The Spondylolisthesis comes into play as displaced vertebrae which adds to the Stenosis or narrowing of the spinal column.  These things are causing pinched nerves – which in turn cause both radiating pain and muscle spasms, oh…and numbness in my toes.

So what am I doing about it?  Well, as much as I can.  I take joint supplements and NSAIDs.  I use a heating pad to help release the muscle spasms.  I see a massage therapist regularly. I do gentle yoga stretching and flows to keep moving as much as I am able.  I have a few additional spine stability and core strengthening exercises I learned from physical therapy that I do throughout the week.  I eat well, and try to get cardio in by either walking or riding my spin bike a few times a week.  But I don’t sleep well and wake often in the night.  Standing for long periods of time makes my muscles lock up and legs ache.  I can’t lift heavy stuff without pain.  But I try and do as much as I can, and live as normal a life as I can.

So why surgery?  Why now?  Well, because it’s affecting my daily life.  As my doctor said – my spine is all jacked up.  No amount of physical therapy, injections, and adjustments are going to fix the bones that are the root of my problem.  After a long discussion of pros and cons, what to expect for recovery, and additional options to consider,  he put in for pre-approval for spinal fusion.  Yesterday I received the call that my surgery was approved.

On your mark,

Get set,

GO!!!

Next week I will get a variety of lab tests done, and an EKG. Those results will be sent to my neurosurgeon and to the hospital where I am scheduled.

I already signed all the consent forms, and received my pre-op instructions when I saw the doctor 2 weeks ago, so I don’t need to go back to their office for anything.  I have my pre-op shower soap stuff already, so once the lab tests are done I just wait for the phone call from the nurse for my pre-admission conference.

I am scheduled for surgery August 13th.  I will likely spend 1 or 2 nights in the hospital before being discharged.  Since the hospital is about 2 hours from home, I’ll stay in the area an extra few days before venturing home to continue my recovery.  I expect to be off work for 3 weeks, and then slowly return to full time as I feel ready – and when I can comfortably drive myself too and from work.  I will have movement restrictions as my fusion heals – no lifting more than a gallon of milk, no bending, twisting, stretching of the lower spine – and just generally REST and HEAL for the first 6 weeks.  I will be encouraged to walk often, several times a day even at the very beginning.  After 6 weeks I’ll begin physical therapy.

Alright, that’s what’s going on and why.  This blog will serve as the primary way of keeping in touch through this adventure, so be sure to subscribe if you want to keep tabs on me from a distance.

Having MRKH has added quite the variety to my life – with both challenges and accomplishments.  I can celebrate my differences, and embrace the life I’ve been blessed with….even when it means another surgery.

Psalm 94:19 When anxiety was great within me, your consolation brought me joy.

4 thoughts on “MRKH Type 2 – Surgery Required

  1. Jocelyn Goodall says:

    Hi Heidi. Your blog answered most of my questions in the email I just wrote, so no need to repeat all that! Pain is a drag, and constant pain is just a drain on vitality. So it’s good you are doing what you can. And your focus on general wellness will always be your friend so keep on that too! Thankfully you are healthy and strong, and have a good attitude ~;-)
    xoxoxox Love you so much!

  2. Janine Spurrier says:

    Wow my friend wow. You have always been an inspiration to me and even more so now. I am so blessed to call you my friend. I will pray for you Mz know that I love you. ❤️

  3. Donna Shad says:

    Praying for you.

  4. Julie Coveney says:

    Heidi, you are an inspiration to me. Your attitude is one of acceptance and joy in the midst of difficulty and pain .. Your faith is strong and your sharing a verse each day is so good! Grateful to be able to follow your blog. I have been and will continue to keep you in my prayers. God Bless you!

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