So it as been a little bit longer than I had intended for it to be, since my last blog was pulished. It is time to continue to share my yearly surgiversary updates and now here we are at year 3. I began compiling these updates the last week of July during one of my worst flare ups yet. Full disclosure, I am still not over it and in the process of seeing more specialists and looking for help to become more mobile and independant. There has been a lot going on, so I appreciate all your patience as I had to take a step back when the cognitive symptoms became rough in the days following my last published blog. I took that plunge and hit that publish button all while I was confined to my bed for a solid week. Praise Jesus I had some great days where I was able to focus on my writing at all! I do everything I can to keep my mind busy during those types of flares when they come. I have not learned however, how to write about them while I am IN them. So, I wrote about other things. My Surgiversary updates felt like the best place to start if I was going to allow this blog to be what it is intended to be. A place where everyone is welcome. A place where people like me and you can share our experiences and stories, for those that come after us.
The following 3 year post op update is slightly modified from it’s original text due to the fact that it was published in my Tarlov Cyst support group.
“Today is my 3 year surgiversary!!!
I am pretty sure many of you may not know my story. I would like to share it so HOPEFULLY it can serve as an encourgament to others who need to hear it.
4 years ago my body began to decline pretty severely. Our boys were 4 years, 2 years, and 9 month old right around the time things started to affect my daily mobility. It was tough to say the least. By the end of 2014 I needed help every single day just to care for myself and the kiddos. About this time something called a Tarlov Cyst turned up on my lumbar MRI, just below, in my sacrum. Since there were a couple very mild disc bulges in my lumbar, and some division between my Doctors concerning the root cause of my issues, we treated the buldges first. I followed all the standard protocol for conservative treatments of the 2 very small lumbar buldges. 3 months and 3 rounds of ESIs later, the beginning of 2015 left me unable to be upright in any position for any length of time. The upright headaches also became horrible.
“An Unexpected GOD Encounter”
Fast forward to March 2015, insert an unexpected GOD encounter with the Doctor who instantly became my biggest advocate these past 4 years. My Chiropractor, Dr. Jill Plentl. She listened for over an hour and at the very next visit she was so excited she could hardly stand it. She said she had some exciting news. After research and prayer, she felt she might have stumbled onto the root cause of my symptoms. She felt I was suffering from symptomatic Tarlov Cysts, and her Cousin just so happened to move here the year prior to be the nurse for the world’s best Tarlov Cyst surgeon, Dr. Feigenbaum. She had already called her cousin, discussed my medical history, and made the referral to Dr. F. I was overwhelmed and excited all at the same time. It was a confirmation of something my PA had been trying to tell me about.
For anyone in the process of scheduling TC surgery, or post op, you know that first phone call to Dr. F is only the beginning of a very long journey. I have been through it all. The long waits, the insurance denials, the not knowing where the money will come from, the Hospital adventure, the insanely unpredictable early stages of recovery, and so on. In many ways, things didn’t go as well for me as they do for a lot of people. There was a lot that did go right though and for that I am grateful! I have learned we cannot compare ourselves because no two Tarov Cyst journeys are the same. Thankfully, one of my most severe TC symptoms went away when I woke up from surgery to treat the 10 bilateral sacral TCs. Even with that gone, it was the upright symptoms and severe leg and foot pain that kept me in bed a lot longer than I ever expected. In this journey I have had helpful Doctors and dismissive Doctors. I have also learned to be my own advocate and grow thick skin. Something wasn’t right about my recovery in particular though and so my husband and I had to continue to find anwers long after surgery. I refuse to give up searching for answers because I am determined to drive again and be able to fully take care of my babies.
“Jesus Has Been My Rock Through This All!”
During the long journey of continuing to seek answers, my Chiropractor helped me get extensive epigenetic DNA testing. As a result, I was put on a very good nutritional protocol that helped me feel so much better. It continues to help me have the physical strength to keep going even when the answers seem so far away. Jesus has been my rock through this all! As well as the friends and family I have been so blessed to have!!!
As time goes on I continue to find more answers. This February I found out I also have Adhesive Arachanoiditis in my lumbar and cervical spine. It was there even before the TC surgery but always went undiagnosed. That has led me down a path of healing that is thankfully bringing more and more of my mobility and life back! I am a HUGE fan now of the Tennant Protocol and the Wahls Protocol. BOTH have not only helped with my AA pain and symptoms but are also helping with my remaining TC pain and symptoms!!!!
“Trust in Him to do the Impossible!”
So here I am 3 years post op. Every week and sometimes even daily I am saying, “Wow! I haven’t done this in 3 or 4 years!” I cry happy tears a lot! I am sad that 4 years went by like that…and now our boys are 4, 6, and 8….but man have we all grown as a family! God has allowed our family to see a night season in life together and walk out our faith and trust in Him to do the impossible! We always choose to seek Him through it all. Perfectly? Absolutely not! Is it always easy? Nope, one if the hardest things we will hopefully ever have to go through. Were there times I wondered if I or my marriage would make it? For sure! Was it worth it? A thousand times yes!!! God has truly given us His peace that passes all understanding through this whole journey.
“Today We Celebrate We Are No Longer Where We Were!!!”
I know there are lots of us here with multiple health issues going on. I am here to encourage you to rest in the grace of God. Breathe and just take it one step at a time. I am so thankful to have found a loving group of Tarlov Cyst Warriors online. My willingness to embrace an online community of friendship and support was a huge step of faith when I became less and less able to get out and about. That support group has turned out to be of the BEST blessings in my life though! I have made so many sweet friends in there! We are all there for eachother and to lift one another up as we make our way on this journey. You are not alone my friends! I hope that you each find the same encouragement and friendship as I have over the years!”
Wow, I still cannot believe that 3 year update was written over a year ago! So much has happened since that point in time. I cannot wait to get to work on this next post for all of you. I cannot wait to share my 4 year surgiversary update. It is very much about acceptance, grace, and the willingness to lay down all our fears in order to embrace new dreams and new adventures!
Thank you for sharing this time with me.
Rememeber, you are not alone and you are welcome here!
With ALL my heart,
Anne