Author: Anne V. Wheeler

Hi Friends,

I am so grateful to be here writing this 4 year update. I am not where I expected to be in some ways and in others ways I could not ask for things to be better! At the time I published my 1 year update, here in the blog, I was actually preparing to share years 1-4 all in one week. And…here we are 3 months later finally wrapping it up! Much to my surprise, I ended up in the most severe health setback yet on my journey, right when I was writing post op 1-3 at the end of July. Needless to say, things got a little delayed. I honeslty don’t see how it was related to Tarlov Cysts at this point but it all overlaps with the other health conditions I am facing. It has been one big journey so it is all part of my story

Huge Victory!

Friends I cannot tell you how excited and thrilled I was to get to share my 4 year post op update with you…until it actually came. 2019 was marked with some pretty incredible milestones. We started being able to go to church together as a family many Sundays for about half the year. Our two oldest boys got baptized too. Physically, I did not have one single fall all year. Huge victory! My pain levels, vision, muscle spasms and cognitive function have all steadily improved as well! Our family life has been flourishing in so many ways as we continue to find our new normal and make our family work. I have been healing emotionally which has allowed me the mental space to start dreaming big dreams and making goals again. I even got to a place where I could go back to physical therapy – which is HUGE! Everything was slowly and steadily improving until late Summer when the little signs of a big flare started popping up. Don’t get me wrong, I have been on this rare disease ride long enough to know that chronic illness has it’s ups and downs. Even knowing that, it can still be very challenging when the lows come so hard and so fast. After four months, the dust has settled and I feel I can finally begin to wrap my head around it and share.

Strong Foundation of Support

Just days before my 4 year Tarlov Cyst surgiversary,  I got the BEST news! I found out one of the Admins from my Tarlov Cyst group (Tarlov Cyst Support for Cysters and Mysters) was going to be coming through the Dallas area with her family. I have been so blessed by the online community one of our Cysters founded soon after I had my surgery. When I first had surgery, I figured in 6 months I would be back to living and all this TC stuff would be just a little blip in my timeline. I had NO idea how being open to the community of this worldwide online group, would create a strong foundation of support for me in the hard years that followed my TC surgery. God appointed my being involved in their group at the exact perfect time. I remember the hesitation I felt, getting involved in the online group at first. I was working so hard to get back to my women’s group at church, homeschooling the kiddos and being mobile in general to go on with my normal pre-TC life. I was nervous about getting involved in a group that I thought I wouldn’t be in very long. Very quickly, I came to realize God had planted me there for a purpose. I began giving my time to the group in service to the Lord. I began praying for the amazing Cysters and Mysters of mine. I began being connected with people by mutual friends to other women who were suffering this rare disease as well! I kid you not, everytime I have been in a place where I am questioning it all, it is as if God just drops another appointed friendship in my lap through these rare circumstances. So to say I was excited about the possibility of finally meeting my third Tarlov Cyster in person, is an understatement.

Planted for a Purpose

This particular Cyster has been a light and inspiration for me on my journey and this was a very special opportunity. I have always hoped to become more of an active advocate for Tarlov Cyst Disease once I got better. I still hope that as I continue to gain mobility I will be able to physically go and visit my Cysters when they come to Dallas. Thank you Jesus that some of my amazing Cysters are well enough to have been able to come see me, when they come to town for treatment!!!

This photo holds a very special place in my heart. My friend, Sister in Christ and Cyster of the Tarlov (haha!) and I, had a wonderful visit that day. It was such an honor and blessing to meet her and her husband and introduce them to my family as well. On a bit of a side note, being that this was truly a rare occasion I decided to take the moment and honor of all my Tarlov Cysters. The set of earrings, necklace, 2 bracelets and even my shirt that I am wearing, are all gifts I have recieved from different Cysters I have connected with over the years. I also took the opportunity to say a special prayer for all my Cysters and Mysters as I was waiting for my sweet friend’s arrival. I remember feeling overwhelm, joy and gratitude just being able to finally see her face to face and hug her neck! One of the highlights of my year.

Like I mentioned before, I was in a bit of a flare that day and that is why she offered to come in the first place. What happened in the following hours was completely unexpected though from what a normal flare is for me. A few hours after her and her husband left I got sick to my stomach after dinner. No fever, just extreme nausea and dizziness. Extreme dizziness is one of the symptoms I have struggled with due to CSF pressure changes. It took me by surprise because it has been much better managed  this year. Then, starting from my feet all the way up to my head, I grew increasingly weak and numb. I spent a day unable to move my limbs at all. Then, for two or three days I was just barely able to move my limbs or hold my head upright. It was scary. If this almost exact same thing had not JUST happened 10 month earlier, I would have gone to the ER. I know that drill though. If I’m not bleeding or having trouble breathing I do not belong in an ER. They are only there for life threatening emergencies, not chronic illness flare ups. So I ran my usual routine of using my breakthrough and rescue meds/treatments to get me through the night. Then the following day I called all my Doctors. Now, here I am 4 months later catching my breath from the 2+ months straight of tests. Praise God though, we got through it and found some great help along the way.

Not the miracle I was expecting at 4 years post op but still a miracle.

My symptoms are being managed really well right now! I can sit more now than I have in almost 5 years. I can finally be out more than once or twice a month for a short family or school socializing activity because I can finally tolerate sitting in a wheelchair for a few hours! Such a miracle! Not the miracle I was expecting at 4 years post op but still a miracle. Sitting up is literally a miracle for me! I am focusing now on my goals involving mobility. No matter what that takes. I am saving up for a mobile folding electric wheelchair so I can have some independence again! That would be amazing. I love that my sweet husband rolls my wheelchair but I am too independent to let him do that forever, lol!

Some Exciting News…

Like I said in the beginning, I am not where I expected to be in some ways. In other ways though, things are better than I could have ever imagined! I have some exciting news! As an answer to many prayers, I also started working on a business this Summer called, Rare Love. I plan to launch it in time for Black Friday with the goal of bringing hope, joy and resources to the Rare Disease Community as a whole! It is a Business with a purpose. 10% of profits each and every month will be donated to a specific Rare Disease Foundation or cause. My amazing Artist of a husband, Dylan Wheeler, has collaborated with me in creating our first series of Zebra designs. The company I am partnering with to fulfill my customer’s orders will be making each item custom in their warehouse and delivering straight to my customer’s door. It is the company my husband used when he sold shirts in the past and we trust their partnership in bringing this dream into reality! It is such a blessing to be able to find a way to work form home doing all the things I have grown passionate about over the years.

Move Forward and Dream New Dreams

I love that I am getting to blog too! I love to write, draw, sing…create anything! I am so grateful. I have felt more like myself in this past year than I have in the past 5! I didn’t realize I was in survival mode for so long. I didn’t realize I wasn’t going to pick up where I left off when I became ill. It took a while for me to accept that where I was 5 years ago doesn’t exist any longer and it was time to move forward and dream new dreams.

…Begin a New Chapter or Even a New Book!

I hope that wherever the Lord leads our family in the next 5 years, I can help to encourage others to look to their future too. To begin a new chapter or even a new book! I cannot wait to see where I am when I come back next year for my 5 year update.

Until then, God Bless and take care!

Remember that you are not alone and you are welcome here.

Anne

I remember what a blessing it was making this one day when I was feeling up to it! I think it was before my decline at one year post op, during a period that I was able to sit up a couple of hours a day. I just HAD to have this scripture of JOY up in our home to see every day as a reminder!

I am amazed at what a journey this has been. As I continue to read through the updates, I marvel at the joy and resolve the Lord has given me to keep me strong in this longer than anticipated battle. Not a fake it until I make it, but His genuine JOY that is our strength (Neh. 8:10).

As promised, here is my 2 year update. This one was actually one I wrote in the wonderful Facebook support group I am in called, Tarlov Cyst Support for Cysters and Mysters. It is a private group available for Patients and their Families, run by a friend and fellow Cyster of mine. I have found a warm community of support in this group and am grateful to have made many friends there over the years. This 2 year post op update is from August 2017.

“I just wanted to share a little praise report. This has been an emotional couple of weeks but oh so good overall. Me, Dylan and our boys celebrated my 2 year TC Surgervirsary last Monday! I cannot believe it’s been two years! This past year was better than the first year and I am even more excited to see what the next year brings.

As many of you know I have gone from being completely disabled and relying on a wheelchair or walker before surgery, to now being only partially disabled and improving my mobility slowly over these two years. I have had some big challenges but I won’t give up. The DNA protocol and daily green juicing seem to be making a tremendous difference this Summer. I have been able to do a few things this Summer that I had not done in 3 years with the boys!!! I was finally able to go see a Movie at the theater with recliner chairs instead of armrests that fold up in order to lay flat. That is huge for me…I have had to lay flat so much of the past 2 1/2 years…definitely the biggest difference this Summer! I am still following through with a couple more Doctors to rule out or confirm a couple of diagnoses that I and my Docs suspect may he contributing to the nerve damage, long healing, and neurological concerns. Still no sign of MS which is an answered prayer for sure!!! It was a big scare at the end of last year when my Docs suspected that.

As for today, I am especially full of bliss because we are about to have some family and friends over for our son Jordan’s Birthday Party. It’s the first time I have felt good enough to celebrate any Birthday in a loonnngggg time! The past three years of watching our three boys grow up has been pretty emotional but we always find the best in every situation and make as many memories as we can!”

“Always find the best in every situation”

As most of you know from yesterday’s post, I am now actually celebrating my 4 year surgiversary this week. We still have the same hustle and bustle of joy in the air with this week still being one of our son’s birthday! I won’t lie though, this week has been a struggle in a lot of ways unlike it was at my 2 year update. After a rough pain and mobilty week last week, I was faced this week with a sudden onset of severe weakness in my neck, arms and legs. I am working with my amazing Docs to get to the root of this flare and hope to have answers and a plan soon. While that is all happening though, I have been trying to make the most of my bedbound days this week. I refuse to lose the Joy of our son’s birthday. I am beyond grateful for the support of the friends and family that have offered to help in any way they can in order to make sure it all comes together. It is going to be a WONDERFUL celebration!

“His strength made perfect in weakness”

Though this is a more severe week of symptoms, the way the Lord helps me through it, is consistent. In the times (which are almost daily) that I physically and or mentally do not have enough in me for the day’s demands, He continues to speak the same thing into my heart. He reminds me that His grace continues to be sufficient and His stength made perfect in weakness. (2 Cor. 12:9)

“You are never alone”

We are all facing, have recently faced, or are about to face challenges in our lives. Please know that you are never alone. Please know that nothing is too big, too complicated, too scary, or too insignificant to our great God. If it matters to you, it matters to Him. If it is uncomfortable for you, He wants to comfort you. He never leaves you, He never forsakes you. His Grace is truly sufficient and His Joy is truly our strength!

Sitting was a BIG milestone that improved between 6-9 months post op!

The date is July 31st, 2019. Today is my 4 year surgiversary. Since this is my first year blogging though, I wanted to go back down memory lane and archive my updates here one post amd year at a time today in order to catch up. As I began searching for my one year post op update, I discovered I do not have a true 1 year post op update. I did find an 11 month update though and here it is from my personal Facebook page, June 9th, 2016.

“3 years ago I was Mom of 2 wonderfully active boys ages 1 and 3, and pregnant with our youngest. That was the Summer my back went from meh to oh boy this is a problem but I assumed it was pregnancy. I got the help I needed to get through it and went on to have beautiful baby boy #3 that Fall. 2 years ago I was Mom of 3 boys, ages 7 months, 2 1/2 years, and 4. That Summer was the year my back, legs and feet began to affect my mobility in a big way. I had to regretfully rsvp no to all the Summer playgroups, and fun things outside of family commitments. That was the year I let go of my backyard and my joy of gardening. 1 year ago was the Summer I was in limbo waiting for the surgery that we all knew would change not only my life but all our lives. I had a painful horizontal reality. I had to lay down every where I went. In the car to and from Dr’s appts, in the waiting rooms, at my parents and at familys houses, even every meal I ate, or while I had visitors. Anytime I was upright i was in agony. And anytime I sat I could not do it for more than a few seconds to a few minutes. After surgery it took months for me to even bend my neck enough to brush my teeth or make a cup of coffee without pain from the top of my head to the soles of my feet. Next month it will be 1 year. I cannot believe it. Life is so much brighter!!! Going into this I did not want to believe that this nerve reconstructive surgery from the Tarlov Cysts would be a 2 year full recovery. But now, almost 1 year in I am learning to accept God’s timing and be more comfortable with the pace of things.“

The Joy of the Lord is Our Strength!

“Today, I am having a bit of respite from the past two or three months that have worn me out. As I sit here in our quiet yard I am filled with joy. Over this past year I have had friends, family, and church bring plants to the house. I don’t think they knew how big this was for me but the Lord did. It sparked that joy in me that I hadn’t been able to do for a year and a half, no almost 2 and a half years. First, I started repotting, potting, and growing plants in the house around December as I began to be able to sit for short periods at a time. Then in March/April I got the kids on board with sprouting seeds. Then still working with pots we transfered and fed and tended to them each step of the way. At the end of April I got ambitious and asked Jordan to help me prepare a flower bed. I was now able to sit for even longer periods so I pulled a stool up to the spot in the yard where we would be working. And the bending took some recovering but it got easier as a week’s went on. The flower bed was simple and nothing over the top but that sweet 4 year old and I rocked it out in about two phases over 2 weeks with help from his brothers. We also did some big planters for the patio. Then Dylan built us a beautiful outdoor couch. So, now…I see my healing in a very tangible way and it almost makes me cry every single time I sit out here. Even on the days when the boys are here and one brother kicks another and someone steals a toy and that makes me chuckle in my heart. I truly missed everything about raising my boys for too long. And man was that rough to not be the type A Mom I had been for so long but, I could not have asked for a better outcome. Now they have amazing relationships with my family and Dylan’s. Is it still hard? Absolutely! Do I have hope that the Lord is and will continue to restore everything? Yes! It’s been a crazy ride but I am so grateful for all the good coming out of it. Still more healing to go. Still a couple unresolved health issues that are complicating things. BUT – Lots of hope that we will get through this with the joy of the Lord as our strength! God Bless! Have a wonderful day friends and family!!! And thank you for all your prayers and love for our family!”

So,Why Wasn’t There a 1 Year Update?

The further I got into reading this post, the emotions began to flood in because I began to remember why there wasn’t a 12 month post. Within days of this post my progress came to a hault as I began having new and or worsening symptoms. I started losing my balance and also falling. I also started experiencing changes to my vision including waviness, blurry and or double vision, depth perception issues, and black and white spots in my feild of vision. Also, all the improvements to my dropped foot reversed and the overall pain levels in my body became more unbearable again. I had to take a beak from the driving that I had worked so hard to regain. To this day I have still not regained the progress I made prior to the one year post op decline. The next 2 years that followed were the darkest of my healing journey because no one knew what was going on until closer to 3 years post op.

“I just choose to believe God has a plan and a purpose“

I have still yet to give up or lose hope. That doesn’t mean I am immune from fears that may creep in sometimes. How is it possible to not give up hope? Why is that so important? Not giving up hope doesn’t make me a better Christian or a better person. Hope and God’s Grace are simply how I survive. I have found that the dark times have been the most intimate with Jesus. As I have seeked I have continually found. I am so grateful for the breadcrumb trail of scriptures the Lord has planted in my heart along this journey. It seems He always plants just the right one, unknowingly at just the right time. I am not more special than anyone else, there is nothing diffrent about me that makes me invincible to all the trials that come. I just choose to believe God has a plan and a purpose! It has been an unexpected journey to see where He has been leading me. I thought I knew how my healing would unfold. That is definitely not how it turned out in my case. Thankfully, we don’t have to know all the details in order for God’s perect will to unfold. Thankfully, Jesus leads us beside still waters and calms the storms, each and every step of the way. Not because of who we are but because of whose we are. That is how I never give up hope. I never forget whose I am. I am loved. Please don’t ever forget you are loved too!

A few years ago, when I became physically disabled from Tarlov Cyst Disease, I fought back like crazy. I fought to keep the house functioning the same way it would as if nothing was physically handicapping me. I fought to not need anything. I fought to find answers. I fought to hold on to my faith. I realized I was fighting to get back to the exact point I was at in life, when the floor collapsed out from under me. As every area of my life was slipping through my fingers, I fought to find myself. My entire identity of WHO I was the past several years, I realized in the blink of an eye, wasn’t really about who I was but WHAT  I was able to do. So, there I was, not able to DO what I had been doing, and completely uncertain where this journey was going to take me.  Who was this woman looking back at me in the mirror? What happened? How in the world does she accept this new set of circumstances, move forward, and truly LIVE, regardless of what she can or cannot DO?

“Truly LIVE reguardless of what she can or cannot DO”

I was raised to be an independent woman and I always knew that there would be a season in my life where I would stay at home with my children when they were young. Well, that started earlier than my husband or I anticipated because I chose to stay at home within months after marrying my sweetheart. It’s not that I didn’t love being in the childcare and education field, but I LOVED being married and the hope of soon being a stay-at-home Mommy consumed my every waking moment. My husband and I were ambitious. We both wanted to have the freedom and flexibility to live and create a life that gave us room to breathe and that meant in our eyes, working from home. I helped him run every single start up from home over a three year period, while he continued to hold down a 10-14 hour a day job, Monday through Friday. I had my own business for a short time before it finally happened…our third year of marriage, we were pregnant with our first child. I continued to work side by side with my hubby encouraging him in all his creative and business endeavors. For the next 5 years we went through so much financially, spiritually, and emotionally as our family steadily grew to become what it is today, the 5 Wheelers. So there we were in our 8^th year of marriage with three beautiful young boys and in the beginnings of another new entrepreneurial adventure side by side, both allowing our gifts to flow. Mine in writing and his in visual arts. Then, just as this perfect picture was finally coming together, the picture started to crack. Over the next year a steady decline in my health, ultimately leading to complete physical disability, landed me on the operating table with the best Tarlov Cyst Surgeon, having reconstructive surgery on all 10 bilateral sacral nerve root cysts and an eroded spine. Everything in our life changed but I chose to hang on to the one thing I still had which was hope. This hope I clung to with all of my being, was not a feeling or an ideal, it was my Everything, my Jesus.

The recovery from Tarlov Cyst surgery is not something someone can concretely prepare you for at this time in history. There are very few surgeons who operate on these nasty little boogers and the best guess the experts could give us was that recovery generally takes between 6 months to 2 years. How much mobility someone can regain during those first two years is entirely individualized. The best possible outcome was probably a 70% improvement from where I was at the time of surgery. I was mostly bed bound and hardly able to walk or sit without assistance. I knew 70% would be amazing compared to the downward spiral I was on. I am now 3.5 years post op and also working my way through a newer diagnosis called, Adhesive Arachnoiditits.  For now, for the sake of staying organized, I would like to share my Tarlov Cyst Journey with you. I am not sure how this will look down the road on the blog because my two conditions do overlap one another and there are other factors having an effect on my health as a wholshare the comfort God has given me through my journey… that it may comfort you in your journey as well. (2 Corinthians 1:4)

“I hope that I can share the comfort God has given me…so that it may comfort you”

My hope with starting the Tarlov Cyst Life Blog is to share my experiences with those who are facing the same or similar circumstances. Another reason I really want to start this blog is to give back to the community who has been there for me all over the United States and all over the world. When I became primarily homebound by the combination of these two horrible diseases, I found unexpected blessings in online communities and friendships. I have been blessed to have friends and family close by that have stuck by our family’s side through it all too, despite the challenges this radical reality shift of a change brings. I want to write to honor them and their sacrifices that they have made for me and my family. I want to write to give back to my community and tribe of Adhesive Arachnoiditis, Tarlov Cyst, Chronic Intractable Pain Patients.  As I share  my own personal  journey, experiences, practical tips and resources, I also hope that this will be a place where I can share the comfort God has given me through my journey, so that it may comfort you in your journey as well. (2 Corinthians 1:4)

“You are not alone and you are welcome here”

I hope that you can find comfort in the very simple fact that you are not alone. If you are homebound, you are not alone and you are welcome here. If you have a loved one suffering from a rare disease you do not understand, you are not alone and you are welcome here. If you have chronic or intractable centralized pain, you are not alone and you are welcome here. If you are sad, mad, worried, or even in denial, you are not alone and you are welcome here. If you are just starting your journey, if you are lost in the medical system, if you are not where you want to be in any way, you are not alone and you are welcome here. If you do not want to accept this diagnosis as a death sentence or a final say in your life, you are not alone and you are welcome here. If you need hope and encouragement, you are not alone and you are welcome here. If you want to improve your quality of life and get better, you are not alone and you are welcome here. If all the Doctors are telling you that you have a rare incurable and progressive disease, and that does NOT compute in your brain and that is NOT going to define you or what you can do in your life, believe me…you are not alone and you are welcome here! If you are still breathing I am here to tell you that our mighty God is not done with you and YOU are absolutely welcome here!

No matter where you are on your journey, you are not alone and you are welcome here my friends.

With All My Heart!

Anne V Wheeler

Hello! My name is Anne and I am so excited to be here at last to write my first blog for Tarlov Cyst Life! My goal is to offer you hope even in dark places, as well as practical steps based on what the Lord has lead me and my family through these past few years on our journey. Beginning in 2014 our family has faced a storm we never saw coming. I have been battling two rare spinal diseases called Tarlov Cyst Disease and Adhesive Arachnoiditis. Both diseases overlap and have been disabling as well as unpredicable. All hope has not been, nor ever will be, lost. I promise I will write other posts that talk about the good bad and ugly of what going through a season like this is really like. For now I really want to kick this adventure off by offering you the very tool that brought me to the point to where I am today, able to start chasing goals and making plans again! I am a Christian, Wife, Friend, Mother, Daughter, Aunt, Sister, Cousin, Writer, Creative and I am here to serve you in hope, friendship and love. By now you are probably asking yourself what are these 7 questions that changed your life? I am so glad you asked!

“All hope has not been, nor ever will be, lost.”

The 7 Questions. Okay, so in the midst of these past 5 years I have had some pretty incredible emotional and spiritual healing along the way. Earlier this year after my shocking diagnosis I was given the recommendation to see an Emotional Release Therapist. Those three sessions were life changing! In my second session, I was given a set of 4 questions and a set of 3 questions that ultimately ignited a spark within me. The first 4 questions were about things that were important to me but I had been puting off for years. She asked me to write the 4 questions down and really take some time to meditate and answer them the best I could. Well, apparantly that is all I needed because I sat down that week and made a rough plan and vision for over 14 creative and service oriented projects. It was liberating! This very site is part of one of those projects I put on that list! It was so simple, and simple is something I could handle. What, Why, Who, and How? That’s it. The details came with a little further instruction and a little prayer and meditation. There were also a set of 3 questions she gave me alongside those earlier 4 questions. The 3 questions were all about creating a vision for my mind to really latch onto in becomming healed. They are simple and practical and they really work!

“It was so simple, and simple was something I could handle”

I do not know where you are on your journey in this life, but I do know you are on one. The 7 questions is just a starting point and it can be catered to whatever your circumstances dictate. Career, Family, Health, Finances…anything! For me it was all about creating vision again for the reasons I wanted to be healed and what that was going to look like. I am going to do my best to continue to share my journey, hope, and resources I have gained along the way, as I continue down this blogging road. I also want to invite you to come along side me and take this journey for yourself with a community of support and friendship! The best way I know how to invite you along in this journey is to make my resources about these questions, available to you. I would love to share the worksheet I created, to get you started on these 7 life changing questions. Please click on the link here (Comming Very Soon) and just shoot me your email address and it will be on it’s way to you! I am so excited to hear what you think of them and if they helped you! Please come back to this post once you have your 7 questions and leave a comment to join our community conversation below.

I love being able to give all of us the chance to start this journey together! I truly believe the Lord has led me through this valley so I can grab as many people as I can along the way and bring them out on the other side too! God bless and thank you for allowing me to share! 

With All My Heart!

Anne V Wheeler