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.

MRKH Type 2

Alright, let’s start with a simple review:

MRKH (Mayer Rokitansky Kuster Hauser) Syndrome is a congenital form of infertility where all or part of the reproductive tract does not form correctly.  It affects approximately 1 in 4500 women world wide.  It isn’t caused by some medication taken during pregnancy.  It isn’t caused by a glass of wine, or drinking caffeine during pregnancy.  You can’t do anything to cause it, and you can’t completely cure it either.  You ARE a woman, and you ARE as normal as the next person.  You just develop slightly differently and you have to learn to adapt.  You are NOT a freak.  You are NOT being punished.  You are NOT cursed.  You are beautiful.  You are loved.

For links to information and support for MRKH, please visit www.beautifulyoumrkh.org They are LIFE CHANGERS.

Now, MRKH has 2 types identified.  Type 1 is simply reproductive tract development – missing all or part of uterus, cervix, and vaginal canal. It varies widely from woman to woman how much is affected and in what way.  Type 2 includes the reproductive tract development anomalies, but also includes renal, spinal, heart, and ear anomalies – again varying widely from woman to woman.

In 1989, I was diagnosed with MRKH Type 2.  I was born without a uterus, cervix, and the upper 2/3rds of my vaginal canal.  I also have a pelvic kidney, and a mild curvature in my spine.  Over the course of my life I have been treated for a variety of joint issues and injuries, which when combined with my MRKH diagnosis paint a clearer picture of life with MRKH Type 2.  I have injured both knees at different times with strains/sprains but none that have required surgery.  I have had both of my shoulders reconstructed to correct damage from joint instability and nerve impingement.  I have had problems with my feet with joint deterioration which resulted in a fusion in my left foot, and a surgery on my right foot to realign bones and clean up the bone spurs and torn cartilage.  I’ve been down the gauntlet of  back injuries as well – muscles strained, pulled, and torn.  Visits with Chiropractors, Osteopathic Doctors, Physical Therapists, Massage Therapists, etc. to treat any variety of symptoms with my back over the years.  I’ve done all kinds of things to keep me more comfortable including spinal injections, acupuncture,  supplements, medications, adjustments, massage, nerve stimulators, heating pads, ice packs, exercises, you name it – I’ve probably tried it.  All in an effort to not let my life be dictated by pain.

This spring at my annual physical I spoke at length with my doctor about health as a 47 year old woman with MRKH.  We talked about menopause, deteriorating eye sight, health and weight in general, my exercise routine of yoga and my exercise bike, and about my aches and pain level.  The result of this conversation had me referred all over for a variety of tests some that needed insurance pre-approval.  My blood work shows I’m healthy and bodily functions are working as they should.  No kidney issues, no liver issues, no heart issues, no thyroid issues, no blood sugar/insulin issues.  My mammogram was clear, my bone density is normal, and I have options to consider as my hormones walk me through this next transition in life (hi there night sweats!).  My left foot earned me a visit back to the podiatrist who kindly shoved a needle into the joint and injected steroids in there to calm it down and suggested I get some more supportive shoes and insoles to keep my foot more comfortable.

It was the MRI results that led to additional conversations with my doctor and choices to make.  I’ve been going to the same doctor for the last 14 years, and this is not the first MRI of my back she has ordered.  She spoke candidly with me when she got the results.  She could refer me to physical therapy – but I already do yoga regularly and we’ve done the physical therapy routine before for different injuries.  She could refer me to the pain clinic for epidural spinal injections – but we’ve done those with minimal improvement before – and frankly, my MRI shows a lot more damage than the last one they did.  She thinks it’s time to visit with a spine doctor/Neurosurgeon.

This began another round of insurance pre-approvals.  I thankfully have great insurance, but you still are required to get most things out of the “normal everyday visits” pre-approved.  It took about 2 weeks to get the approval to make an appointment with the spine doctor, and another 10 days before I could get an appointment.  But that did give me time to get a copy of the MRI results and think through questions I might have – and to do some research.  I knew what the conservative approach might look like (shots and therapy), and I knew what the surgical approach might be.  It all would depend on the interpretation of the MRI by the doctor.

I met with the spine doctor and his team.  They gave me a laundry list of diagnosis – Spinal Stenosis (narrowing of the space where the spinal cord and nerves travels protected by the vertebrae), Spondylolisthesis (displacement of the vertebrae), Degenerative Disc Disease, and Scoliosis.  When all those things come together is when trouble brews.  Each of those things combine to pinch nerves and cause trouble – and pain.  Generalized pain in my spine itself, nerve pain across my hips and down my leg into my toes, and muscle spasms to name the most obvious.  I’m only as mobile as I am because I refuse to let pain control me everyday.  I do yoga because my physical therapist says, “motion is lotion” and “use it or lose it”.

So there is both good news and bad news after my visit to the spine doctor.  He referred me back to physical therapy (more to check in with her and satisfy the insurance company, than because he thinks that it will offer me any long term relief).  He also put in for a pre-approval for surgery.  The bad news is my spine is jacked up – between the disc degeneration and the scoliosis, there is a LOT of arthritis in my vertebrae.  The Stenosis is the result of both, as is the Spondylolisthesis.  No amount of physical therapy or spinal injections is going to un-pinch the nerves or make my discs spontaneously repair themselves.  The good news is that he is confident that with surgery he can decompress the discs, open up the channel for my nerves to run, and stabilize my spine to prevent further damage and reduce my nerve pain.  He has an excellent success rate (80%) and high patient and medical peer reviews, and the hospital has very low infection rates and excellent patient care and reviews as well.  If I have to have surgery, this seems the best I could hope for going in.

So let’s review:  I have MRKH Type 2, I have no uterus or cervix, I have a pelvic kidney, and I have spine issues that are progressively getting worse the older I get.  After my MRI, I visited with a spine doctor who is recommending physical therapy and ultimately surgery.  I have an appointment for physical therapy next week.  And I am waiting to hear if my insurance approves surgery.  That’s pretty much all I know today.

As I’m preparing to embark on this next part of my journey, I’m so thankful for the blessing of friends and family near and far who are supporting me with prayers and a listening ear – reminding me to trust God fully, and to know that no matter what comes next, I don’t journey alone.

Joshua 1:9 Be strong and courageous.  Do not be afraid; do not be discouraged for the Lord your God is with you wherever you go.

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Directions

I’ve been contemplating this post for a while.  Well, honestly, several posts – but I haven’t been sure of the direction I wanted to take.  Often this blog acts as a journal for me, allowing me to share and process my thoughts.  Sometimes it serves to address a particular topic or event.  Often it’s completely random.

In my life, and probably in yours too, things happen and our focus shifts a bit.  Sometimes it’s a quick detour, and sometimes it’s quite the journey before we realize that we strayed far from what out target was.  I’m kind of in that place – in another cycle of living my life where it really doesn’t look a whole lot like what I imagined a few years ago.  Crazy how that works sometimes…but work it does.

Over the course of my life I’ve gone through counseling several different times, in order to help me “deal with stuff”.  The stuff is the variable here.  And the type of counseling I’ve done has varied too.  But pretty much you go to a stranger, you begin to build trust, and that stranger becomes a trusted confidant.  And then you start to dig through the layers of “stuff” that is holding you back in your current season of life – hopefully with the goal of dealing with it and getting back to a level of normal you set.  Been there, done that.  I’ve worked through issues of abuse.  I’ve worked through financial ick.  I’ve worked through grief.  I’ve worked through issues of weight and body image.  I’ve worked through infertility.  I’ve worked through failed relationships.  I’ve grown, and I’ve healed.  I’ve changed.  And for the most part, it’s all been for the greater good.  Sure there has been some pain – some regrets – some things I can’t take back no matter how badly I’d like to.  But it’s all been my life.

In the past few months I’ve done a lot of personal reflection, and made some changes and choices that have effected more change.  It’s been quite the process.  I honestly believe that change and growth is a good thing.  We need to challenge ourselves, take calculated risks, and take action.  And sometimes that is a complete upheaval – a major change…and sometimes it’s a just a small shift that has the potential for gigantic ripple effects.  A shift in my life and my priorities has precipitated ripples in so many other aspects of my life I wasn’t expecting.

I took a stand in my heart and mind that shifted my focus to my faith in God, and my place in this world as a Christian woman.  Openly doing so, has opened the door to so much more, and has guided other choices and has given me a sense of peace that had been lacking for many years.  It released burdens, and opened my heart to alternatives.  It gave me direction and purpose that was focused on others and not on myself.  It has brought up some questions too, of course.  All changes come with challenges, and I’ve tried to embrace them all.

Most of you know of my Courageous Project with the Beautiful You MRKH Foundation.  I love this with my whole heart.  I love that through the medium of soapmaking I can make a tangible difference for women like myself who have MRKH.  I love that I can donate money to an organization that was instrumental in my personal growth, and that I can continue to touch lives.  Over the last few months, sales have dropped off considerably, and I take responsibility for that.  I haven’t spent much time or energy promoting it.  But in the greater picture – I haven’t done much at all in my soap business as a whole- I skipped a couple of craft shows this summer to allow me time to focus on family and other obligations.  That will be changing soon, as the fall craft show season is starting up in a couple of weeks!

One of my “other obligations” this summer was attending the Seattle MRKH conference.  What an incredible weekend, with some lovely women.  I will be posting about that weekend here on the blog soon – much of the content is already written actually.  So stay tuned for that.

This summer I also worked with some of those same lovely women and together we created a Christian support group on Facebook called MRKH Journey through Faith.  I felt the need to form a community of women who shared both Christ and MRKH…and where we could encourage each other to grow in our Faith and to work toward healing the wound that MRKH often is in our lives.  We have continued to grow and add members, and it’s been a wonderful way to connect on a deeper level with each other.

I’ve had some other big things in my life this summer, big changes, new opportunities, and tons of personal growth.  I hope to share more with you over the next few months some of these directions my life is headed.

Have a blessed day!!!