God says “Chill out Natalie. I’ve got this.”

Before I got to see Dr. Feigenbum in Texas, of course I began to have doubts. Even though I had seen God working through this and pointing me in this direction, I would have moments when I questioned if this was the right thing to do. My friend Anne told me, “You’re faith will be tested through this. Satan will try to put doubts in your mind an you have to be ready for that.”  That was some of the best advice I’ve had as of yet.

When I would have doubts or fears, God would find a way to tell me, “Trust me. I’ve got this.” MANY times, I would just RANDOMLY plop open my Bible and some random verse would speak to me that was totally unique to my situation. That is one way God speaks to us. Through His word. If it wasn’t that, another Christian friend would randomly call me and offer scriptures or words of encouragement, even before I would tell them my thoughts. God speaks to us through other believers. He leads them to say things to us when they don’t even know why. Sorry skeptics. These aren’t coincidences. When you experience the Holy Spirit speaking to you, you have no doubt in your mind. It is an experience on a spiritual level similar to having the feeling of someone punching you in your gut. Sometimes you become overwhelmed by the Holy Spirit and cry. I hope those who seek Him with all of their heart can have these same experiences.

Here are the words that God has spoken to me.

Philippians 4:19

And my God will supply every need of yours according to his riches in glory in Christ Jesus.

God had been showing me how He had set this stage and provided for us before he knew it was coming. God has supplied our needs before we even had a chance to ask for them. He had set up the money, given Michael a new job that is flexible and understanding, and provided us with new insurance.

And we know that for those who love God all things work together for good, for those who are called. Romans 8:28

Yeah, this situation sucks. But, God is going to make something good come from it. I don’t understand it or know what it is yet, but He has a plan.

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, according to his purpose. Psalm 41:3

 Heck yeah it does! That which does not kill me makes me stronger!

The Lord sustains him on his sickbed;

in his illness you restore him to full health.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10 NIV

God will give me the strength to get through this. He will restore me, even if that means my spirit. He’s telling me, don’t be afraid of what you are facing.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 

2 Corinthians 1:3-4

Yep. God’s comfort is with me. He’s slapping me around pretty good telling me He’s here.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Cor 12:9 - 10

Yep, I definitely have weaknesses. I am not a perfect person. I’m not a perfect Christian. But, God loves to take people’s weaknesses and transform them into strengths. Seriously, it’s much harder to turn a weakness around. It’s a demonstration of God’s power. Therefore, I’m going to be thankful that I am going through this hardship and difficulty. Why? Because I know I am too weak to get through this on my own. But, God is strong enough to pick me up and carry me. And why would I be thankful for having this nasty mean disease? Because it’s revitalized my faith and brought me closer to God. It’s easier to do that when things go wrong and we need help. But, we can remember these times in the future when God's presence was unquestionable. 

"The gracious hand of our God is on everyone who looks to him, but his great anger is against all who forsake him. So we fasted and petitioned our God about this and he answered our prayer." Ezra 8:22-23.

I was doubting God’s plan in this, even though He was pointing me in the direction towards Dr. Feigenbaum with a giant neon sign. I had stuck a paper in my Bible to pray for my friends. Ok, I’ll be honest. I don’t usually read the Old Testament. But, when I opened my Bible, the first thing I saw was that verse.

What was he telling me? God’s hand is on me. I’ve prayed. He is going to answer my prayers. Watch it happen friends!

  

“And you, son of man, do not be afraid of them or their words. Do not be afraid, through briers and thorns are all around you and you live among scorpions. Do not be afraid of what they say or terrified by them.”  Ezekial 2:6

 On one of the TC Facebook pages, people were saying some things that scared me and were negative towards Dr. F. I was afraid of their words! Surgeries gone wrong. Horrible recoveries that sound scary. People saying he was just out to make money. Again, random Bible plop open!! Here’s the verse I saw!

Here are some others that I found that were encouraging to me:

Because of the Lord’s great love we are not consumed. For his compassions never fail. They are new every morning great is your faithfulness. I say to myself “The Lord is my portion therefore I will wait for him.”  The Lord is good to those whose hope is in him, to the one who seeks him; Lamentations 3:22-25 

For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men. Lamentations 3:31-33

Which of you, if his son asks for bread, will you give him a stone? Or if he asks for a fish, will give him a snake? If you then, though you are evil, know how to give people gifts to your children, how much more will your Father in heaven give good gifts to those we ask him!? Matthew 8:9-1

 I started to wonder and doubt, what if this IS God’s plan but I’m supposed to suffer and endure something permanently after his? What if it goes wrong? What if things turn out worse than they were before surgery? He told me: (These are Jesus’s words after the well-known Ask, Seek, Knock Verse). Random Plop open!!!!!

Why would God give me a stone when I’m asking for bread? He was telling me, “I’m not going to do that to you Natalie.’

  

Psalms 46:1 God is our strength and refuge, and ever present help in trouble. 

I was anxious and nervous about the pain management doctor who was going to do my caudal epidural steroid injection. While I was praying, the words “Strength” and “Refuge” popped into my head. I feel like He was telling me to look up this verse:

God’s Got Some Work for Me to Do

My blessings list will continue to grow. Seeing God’s hand in this has kept me in high spirits, despite my pain and the uncertainties ahead. God is faithful. We don’t always understand why things happen, and we don’t always get the answers from our prayers that we want. But, for whatever reason, He has put me on the fast track with this. I sometimes wonder why. Is it because something is going to happen to my parents soon and they won’t be able to take care of my kids and me? Is something going to happen to Michael? Is my condition progressing faster than normal and about to get a lot worse? My Chiropractor told me it doesn’t mean any of that. It means God needs you to get better because He has work for you to do!

I’m excited to see whatever work He is going to continue to do on this journey and ask for your continued prayer. PRAYERS are working!!!  The next biggest hurdle I will face is trying to get into surgery. Insurance approval usually takes a month. Dr. F. is so booked up with surgeries for other people that it can take up to three months after insurance approval to have surgery.

I’m in pain. I know the recovery from surgery is a long painful road. Everyone heals differently but your nerves have to completely regenerate. Anytime nerves grow, there is pain. That can take up to two years. I’m hoping that since I haven’t had these symptoms for years that maybe my nerve damage isn’t as severe and might heal faster. But, I will not be able to lift Jackson for 5 months after surgery. I will not be able to walk or get out of bed without a walker or drive for a month at the least. I will not be able to lift a gallon of milk for a month and gradually ten pounds per month thereafter. I will not be allowed to lift or bend my back for a long time because it can damage the nerves. I’m not saying this to be dramatic, but I’ve been told that this surgery is much worse than any regular back surgery such as disc fusions, rods put in your spine, treatment for disc herniations or shaving off spinal bone. The reason is not only because they are removing your sacrum, but also because they are operating ON the nerve root. This is not “back surgery.”  It is NERVE surgery. During the healing process, things can get worse before they get better. Since they are in there messing with your nerves, some patients develop new symptoms short term. Some get instant relief from some of their symptoms. But, surgery is NOT an instant fix.

Knowing all of this, I would rather be hurting knowing that I am healing rather than hurting knowing I am getting worse and facing a future of immobility. Let’s get it done!

Blessings and Miracles of God’s Provision

God is faithful. Thank you God for my blessings. I’ve started making a list of all of the things that have happened where I have seen God’s hand working. A friend refers to them as “God winks.” I have ZERO doubts that God is leading me in the direction I should go. God has been paving the way for this, even before we knew it was going to happen. God has been performing one rare miracle after another and I believe it’s because of the power of prayer and the great number of people who have been praying for me. It has strengthened my faith, reminded me of God’s provision that He is in control.

• It’s a miracle that my Chiropractor was aware of this rare disease. 
• It’s uncommon that my MRI included the sacral region showing the Tarlov cysts and that the     radiologist even reported them.
• The founding nurse of the Tarlov Cyst Foundation, Reta Honey Hiers, lives in Knoxville, saw my email and responded to me first because she saw that I am local. She referred me to Dr. F. in Texas. She usually spends 11 hours a day working on TC Foundation work and replied to me that night because she saw I was from Knoxville. She has been a HUGE help.
• Most people go years being sent from specialist to specialist who attempt to treat the symptoms through various surgeries, only to find out they weren’t treating the right cause. By the time they see Dr. Feigenbaum, they have endured surgeries, complications from treatment, years of Epidural Steroid Injections and have developed scar tissue which are problematic for surgery. Many have had so many cysts for so long that their sacrums have been eroded to an eggshell thin layer. 
• It usually takes 2-3 months to get a consultation appointment with Dr. Feigenbaum. I called September 14th to make an appointment. It was first made for October 29th.
• Dr. F has performed over 1300 surgeries. Not one incident of Cerebral Spinal Fluid leaks and within the past 7 years, has not had patients with reoccurring cysts. HUGE!
• Had I been diagnosed with this 15 years ago, there would have been nothing any doctor could have done. I’d be looking at a future full of diapers and wheelchairs. 
• I’m not in diapers or a wheelchair…yet.
• Dr. Feigenbaum is covered in-network by my new insurance. The surgery costs over $170,000. 
• We have money available for travel and medical expenses that we did not have a few months ago because Michael switched jobs. We were saving it for my dream trip to London, but now we can use that for medical expenses and travel that we didn’t have even a few months ago.
• Michael’s new work is VERY understanding about taking off work when we have to travel. They have even offered to allow him to work remotely 
• A friend, Nikki who I grew up with in Morristown, lives in Dallas. She responded to my Facebook post that her friend just had her Tarlov Cysts removed 5 weeks ago. At first, I thought, “No way. She must be mistaken.” Sure enough, I got connected with Anne and she had just had her surgery 5 weeks ago from Dr. F.  She is in her mid-thirties, like me, and has three sweet boys under The first time we spoke, tears filled my eyes in awe the power of God’s provision. I was so overwhelmed and happy. He knew I needed a friend who could understand and help me know I can make it through with this. We talked on the phone for hours and I felt like I’d always known her. She felt she needed me as well and that God was using this as a confirmation to her that she made the right decision and now He was going to use her journey to help me through this.  Her faith is an inspiration to me. She has gone through everything I am going through, not being able to take care of my children, my house, go out, chronic debilitating pain, Dad having to be Mom too, needing family to take care of her children, etc. Everything my family and I are facing. With only around 200,000 people in the U.S. having this rare disease, what are the odds of me being connected with her? I think I have a greater chance at winning the lottery! It’s called God. 
• Anne posted this message on my Facebook page: “Natalie, I totally understand and have also experienced everything you just described at one point or another since this disease began in my life too. I am praying for you and your family constantly! When I told some of my friends from church that God connected us they told me that it was an answer to their prayers. This is the verse they have been praying for a year! I will pray it for you too now friend! 

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God." 2 Corinthians 1:3-4”

• My parents live close and are in their mid-seventies. They are in good health and can help take care of me and my children. Without them, I would be hopelessly lost. 
• I have an awesome, understanding, supportive husband who is strong, nurturing and takes care of me. If I needed someone to carry me around, he'd do it. He has had a heavy burden on his shoulder but has never complained ONCE!
• I live in a neighborhood where I am surrounded by great women who support me and want to help. One my neighbors, April, is a cancer survivor. She had cancer in her hip and also has experienced many of the things I am and will be going through. She is a woman of great faith and an encouragement to me. My neighbor Lisa is another woman of strong faith who I can turn to for help and prayers. My neighbor Angel is too. God put these women in my path for a reason. 
• I have friends from my church Sunday School Class and Mom’s group who are willing to help.
• God arranged for our neighbor’s son and Conner to start Knoxville Christian School at the same time so I will have help from Angel getting him to and from school. She can help in the mornings, which is the hardest time. That was no accident.
• I have Christian friends in Dallas Texas area who I grew up with and have offered to help when we are in Dallas.  
• The day I saw my neurosurgeon, I began to have doubts. That very night, I found the TC support group on Facebook. Immediately after I joined and shared my story, a sweet girl named Lisa called me from Louisiana. She is also a woman of strong faith and has TCs. As soon as I spoke to her, all of my doubts and fears were erased. It was no coincidence that God put her in my path too to affirm that He is at work and I’m on the right track. She encouraged me to have Faith and reminded me that even though the road ahead is going to be tough, God is with me all the way. EVERY time I have started to have doubts or fears, God would send another TC Christian patient to me to remind me everything is alright.
• I have made other wonderful friends on the Facebook TC Support group. So far, all of them have been Christians. I don’t find that to be a coincidence. But, I feel that God can use me to share my faith and testimony with other women of how His hand has been in this. I’ve chosen, rather on dwelling on my own problems, to focus on the needs of others and pray for them. It helps.
• Medical expenses are tax deductible!
• Earline, a TC patient from FL, felt that God had laid it on her heart to try to let me fill her appointment on September 27th.  She rarely is on the Facebook page but saw my post on the support Forum and sent me a private message asking me to call her.  She wanted me to have her appointment because she felt I needed it more than she did.  I immediately started to call and text all of my prayer warrior friends. My neighbor Lisa and I met together and prayed. 
• The next day, I was told by the Dr.'s office in Texas that I could not take the available spot of the lady Earline Banks who had to cancel, even though we called and made the request at the same time via conference call. I spoke to TWO office personnel who told me, "It's extremely rare that Dr. F ever has any cancellations and usually it's because there is a no-show." They don't have a waiting list but fill spots based on who calls and checks EACH day. We were disappointed, but I still had faith that God knows what He is doing and maybe that person probably needed their appointment more than I did. Earline and I have stayed in touch and prayed for each other. 
• Saturday evening, I got an email from the Doctor’s scheduling manager (Who in the heck does that on Saturday evenings??) and she asked me if I wanted to come October 8th!!! AND, that's the Thursday before Fall break! Meaning, Conner and Jackson will be out of school that Friday and Monday!! Couldn't have worked out on a better Thursday. God is good, amazing, and very very sneaky! I thought it was a done deal and God showed AGAIN that he can fight through any odds! Three weeks! People have to wait 2 months! Even more good news, UT called called the next day and set up my second MRI for the last day of September so I should have those results by then too. 

What is Tarlov Cyst Disease?

Symptomatic Tarlov Cyst Disease is an extremely rare disease listed under the US Department of Health Genetic and Rare Disease Research Center (GARD). (At the time this was posted): It is estimated that only 4% of the population have TCs and of those, only 1% have symptomatic ones. An estimated 200,000 people in the US, but since it’s rarely reported, the statistics aren’t really accurate. (Website has since been updated). It is often misdiagnosed or overlooked by neuroradiologists and neurosurgeons because there has not been much statistical research to date on symptomatic TCs. There have been many case studies, but these are not considered as significant as data within the medical community. Most neurosurgeons and specialists dispute that they are symptomatic, due to lack of studies and how they were trained. Many patients are diagnosed with other problems that treat the symptoms rather than the actual cause. You will not find ANY nuerosurgeon who will touch these with a 10 foot pole with the exception of 2 in the US. There used to be more.  However, the one with the most experience is Dr. Frank Feigenbaum in Dallas Texas, has had the most success and has treated over 1300 patients according to the TC Foundation. He is currently putting together statistics of his first 800 patients but has not published it yet because he is following their progress for several years. Soon, he is going to rock the medical community! Some neurosurgeons have attempted treatments in the past (such as aspiration or fibrin glue injections), but have had low success rates, further complications, and high risks.

Tarlov cysts are nerve roots filled with cerebral spinal fluid and are most often found in the sacrum. They show up on MRIs that includes the sacral area (below the lumbar area near your butt). Imagine a paper towel tube filled with empty water balloons (nerves). Now, picture one of those balloons expanding as more water fills it up. What’s that going to do? Press on and squish all of the unfilled balloons in the tube. This is what happens in a Tarlov Cyst. It fills up with Cerebral Spinal Fluid and causes the cysts to compress the surrounding nerves in the sacrum area of the spinal canal. This also creates inflammation of the surrounding nerves. It can cause painful and debilitating conditions. Tarlov Cysts are more common in women than men. It is important to note that these are very different from many other kinds of cysts that can form in the spine that are NOT nerves. Those kinds are frequently treated by neurosurgeons. Surgery on a Tarlov Cyst is not “Back Surgery.”  It’s NERVE SURGERY. Big difference.

      These are the symptoms of Tarlov Cysts:  

• Sacral or tail bone pain or pressure
• Pain with sitting. May feel like you are sitting on a rock or an object
• Avoidance of sitting type activity
• Pain with standing and walking
• Pain in the legs and feet especially in the back of the thighs
• Leg weakness or numbness
• Dizziness and feeling of loss of balance or equilibrium, especially with change of position
• Bowel, bladder or sexual dysfunction
• Vaginal, rectal, pelvic and/or abdominal pain
• Pain with sexual intercourse
• Pain or numbness in the buttocks or between the legs
• Headaches
• Symptoms made better by lying down

My severe pain started in May, 2015. My condition worsened very quickly and now I have every single one of these symptoms. For the past several years, I have had non-painful symptoms and bounced around from specialist to specialist being diagnosed with all of these rare disorders and other weird illnesses. They all point back to the TCs.

When the cysts become symptomatic, the disease is progressive. Over time, patients lose control of their bodily functions and are unable to walk. After long-term damage, the nerves become irreparable. According to the Tarlov Cyst Foundation and Dr. Feigenbaum’s Tarlov Cyst Institute, surgery is the best treatment. Dr. F’s method has been the most successful surgical approach that permanently gets rid of the CSF in the nerve roots. If you have further trauma or any that are too small to operate on, they can grow later. Also, the cysts can grow in other places in the spine, but this is less common. 

There is a movement to try to spread education and awareness of this disease among the medical community. More research and funding is needed. Dr. Frank Feigenbaum has founded a Tarlov Cyst Institute.

In this video, Dr. Feigenbaum describes the disease and treatment. 

Let the Research Begin

*Please note that this is based off of my interpretation of information I found at the time. New information may have been published that indicate this may be outdated since first published. Many cases go undiagnosed so it is difficult to really tell how many people actually have symptomatic Tarlov Cysts.

The same day I found out that I had the TC, I went home and researched it on the internet. I found out that approximately only 4% of the population have these and they are almost always asymptomatic. However, of those 4%, 1% have symptomatic TCs. The more I read about TCs, I learned that it is actually a disease and that successful treatment options were limited. Aspiration of the cysts just resulted in them filling back up with Cerebral Spinal Fluid within hours. A fibrin glue injection technique was used for several years, but the success rate was only about 70% and the complications and risks were serious. The fibrin glue would plug up the hole where the CSF was entering but the fibrin glue could get stuck to surrounding nerves and then there was no way to go in and fix it. This procedure is still used sometimes, but is currently not recommended by the FDA. Several other methods have been attempted.

In my search, I came across the Tarlov Cyst Foundation, which happened to be based here in my hometown of Knoxville, TN! I immediately sent the President a message and said that I had learned I have a TC and am having the symptoms listed. My question was, were there any doctors in my area who could treat these? I was surprised that she called me within 15 minutes. I swear! It was soon. Her name is Reta Hiers and she is the President/Executive Director of the Foundation. She saw that I was from Knoxville and said she just had to give me a call! Patients from all around the world call her and she is usually on the phone all day everyday responding to them. She is a busy lady in high demand! I spoke with Reta for an hour. She is an incredibly encouraging person and a plethora of knowledge when it comes to TC Disease. After going over my symptoms and story, I told her I hadn’t been diagnosed with the disease but they had just been noted on my MRI. She said, “That is a diagnosis. I am so sorry you have this disease.” She went on to explain that the neurosurgical and radiological community do not recognize TCs as a symptomatic disease and I would not find anyone in my area willing to treat them. It is so rare, that many of the doctors do not even know much about it. She prepared me for what my Neurosurgeon would tell me when I saw him. I learned more information from that phone call than I would have ever learned from the internet. She explained the treatment options and that the best is surgical treatment. However, there were only a handful of doctors in the world willing to treat them. Of them, the most experience was Dr. Frank Feigenbaum in Dallas Texas. “Well, what should I do now?” I had the option to send him my MRIs for a remote consultation, which could take anywhere from 3-5 months, or make an appointment to see in person for a consultation, which would take 2-3 months. “Whoa! What!?!?”  I did NOT want to wait 5 months to find out what my options are. I do not want to suffer from these symptoms that have robbed me of my life for any longer than I had to.

We had saved up for my dream trip to Southern England. I had even booked two hotels. I was devastated that I cannot go. But, because we saved for the trip, we can use that money for travel to Texas. A blessing in disguise. God was providing for us before we even knew this would happen.

*UPDATE - Over time, I have learned that it's not really known exactly how many people have Tarlov Cysts or how many of those are symptomatic because of the lack of diagnoses.  As I stated before, please do not take my interpretation of information or opinions as the gospel truth without researching and affirming it for yourself. Blessings!

Here Reta Honey Hiers Explains diagnosis of Tarlov Cysts.  

I Have a WHAT-A-Hooey?

Even though my MRI mentioned “incidental” Tarlov cysts, I had no idea what those meant. Honestly, I had skipped over that tiny phrase and didn’t even notice because I was looking for answers in my spine as to why I had this nerve pain. Later, I would learn that anytime a radiologist says “incidental,” it means it has no clinical significance. So, of course my PCP wouldn’t think anything of it either. She doesn’t even see my MRI. The MRI report mentioned several bulging discs, herniated disc, and stenosis. I was ecstatic! “Great! I can have injections and this will all be over. I can get my life back!” 

My PCP referred me to the UT pain clinic and ordered Epidural Steroid Injections. However, they told me that I was not a candidate for the shots because my symptoms did not match my conditions. In fact, they said the problems that showed up in my back were typical of people my age. Tears immediately filled my eyes when the doctor told me this. I was devastated. He told me I needed to go back to my PCP and explore medication options for nerve pain. He even mentioned two of the medications I was already on! Um, excuse me. . . Did you even read my file?!??! “You mean I have to keep suffering with this pain? I don’t know how much longer I can stand this!” I cried all the way home and called my Mom and husband to tell them the news. We were all in shock and disappointment.

At my next chiropractor appointment, he asked if he could see my MRI images and I gladly shared them. Immediately, he said, “You have a Tarlov Cyst in your sacral spine!” “What? What does that mean?” I thought that Christmas looking lightbulb at the end of my spinal canal was supposed to be there. No. My Chiropractor went on to tell me that he was aware that these Tarlov Cysts could cause neuropathic symptoms like I was experiencing.  I had an upcoming appointment with a top neurosurgeon at UT and was sure he could help me.  At first, I thought, “Well this is awesome! We’ve found the real problem.” But, little did I know how serious it was. I don’t even know why they call them “cysts” because they are actually nerve roots blown up with cerebral spinal fluid. The term in and of itself is misleading. The fact that my Chiropractor knew about this disease is extremely rare. I later asked him, “How did you even know about this disease?” “I don’t know. I just remember it from school. I’m full of useless information!” Of course he knew it was going to good use in my case. Amazing. 

Beautiful MRI images of my very photogenic cysts.

How it’s All Gone Down - My Timeline

The timeline of my symptoms has gotten progressively worse. I have had symptoms that line up with Tarlov Cyst Disease for several years, but nothing that was intolerable. Here’s how it’s all gone down so far.

May 2015         Severe TC Symptoms began to snowball quickly.

Early 5/2015    When I would be on my feet for a while, would have severe leg pain in right leg, stemming from stabbing pain in right hip, hurt bad under buttocks and at first only hurt really bad in the upper part of my back legs. Over a few weeks, it started hurting all the way down my leg.

5/29/15            Driving for 3 hours from SC to TN. Went shopping for 1 hour midway through drive. Barely made it home rest of the drive due to severe pain in right leg. It started with a pinching/stabbing pain in my right hip/butt area and radiated down to my calf muscle. I went straight to my parents’ house because I knew I wouldn’t be able to take care of Jackson, who was with me. After a few days of resting in bed and not lifting him, it went away.

Early 6/2015   A few weeks later - I went shopping and was out for three hours. The pain gradually crept up on me. By the time I got home from that shopping trip, my legs were hurting so bad they were shaking and I almost collapsed. I couldn't carry my bags in from our garage to the kitchen. Severe weakness developed where I would almost collapse and my legs would shake. Leg pain was aggravated by lifting my 3 year old. The pain would creep up on me and be worse/intolerable in afternoons and evenings. Legs began twitching. I thought maybe it might lack of support in my shoes. I bought arch supports and had my feet checked. Nope. Not that. The pain would wax and wane from day to day. Sometimes better, sometimes worse.

Early 6/2015   Was no longer able to take care of Jackson. He started living at my parents except weekends.

6/12/15            Returned to Chiropractor thinking my problems were related to my back.

6/19/15            PCP visit. Normal labs. Began Norco. Two end right toes did not bend anymore. I don’t know when this started but I had been tested several months before and they had been normal. Insurance so kindly denied my MRI for 6 weeks. Meanwhile, back at the ranch, my condition continued to worsen. Thanks insurance!!

Week of 6/22  Tingling got worse and more persistence and my feet would burn and itch. Began to have sensations of lightning pain traveling from my hips to toe. Began having tingling sensations that felt like fireworks going off in my lower legs.

7/13/15            Electromyography and Nerve Conduction Study – Right superficial peroneal sensory response absent. Sensory peripheral neuropathy. At the office, they tested my sensitivity my touching my legs. I realized my right leg was less sensitive and numb. This did not align with my symptoms.

7/20/15            Officially diagnosed with hemiplegic migraines (migraines without pain that have stroke symptoms on my right side.) by headache specialist neurologist.

7/21/15            PCP visit. Symptoms had increased since 6/19/15. Had to start cancelling activities and rest more. Only relief was lying in bed or sometimes better when sitting in fetal position. Sitting, Standing and Walking hurt and my tail bone hurt unless I was reclined in bed with my legs up and took the pressure off of that area. 

8/13/15            PCP visit. Increasing Symptoms. Burning and itching feet.

8/18/15            Lumbar MRI – Revealed “incidental” tarlov cysts in sacral portion of canal. L3-L4 disc degeneration with loss of disc height and signal. Left foraminal disc protrusion producing left foraminal stenosis w/possible impingement of exiting L3 nerve root. Annular bulging without evidence of neural impingement; L4-L5. This did not align with my symptoms.

8/28/15            Doctor referred me to the UT Pain Clinic for epidural steroid injections– told they could not help me because my MRI results were not consistent with my symptoms.

9/8/15              PCP visit. By this time, I couldn’t predict when I would have my pain. Sometimes I would wake up with it. Sometimes I would have it even though I had been resting in bed.

9/11/15            Chiropractor reviewed MRI and felt my Tarlov cysts could be symptomatic. Changed therapy approach. No longer massaged sacral area. Did Decompression machine, ultrasound of sacral area, Ice and TENS on sacrum. Would give me a few hours of relief. This is when I called the TC foundation and educated myself about this disease.

Week of 9/14   Began to have occasional bladder issues.

9/14/15            Visit with Pain Consultants for a second opinion– The P.A. reviewed pictures I printed off from my MRI and believed the cysts could definitely be causing my pain. He told me that in 15 years, he had only seen 4 and mine was the largest. Scheduled Caudal Steroid Epidural for 10/14/15

9/17/15            Visit with Neurosurgeon at UT – ordered pelvic MRI. Did not believe my cysts were causing symptoms. Saw sacral erosion and remodeling but told me if it eroded it wouldn’t be a problem. (This is typical. I was prepared for this response.)

9/18/15            Had a bm. (Yes, I know. TMI) Immediately, buttock and leg pain went from a 3 – 9. I was writhing in bed with pain for an hour. Took a Norco and Zipsor and did not help. Was unable to sleep for several hours.  Severe constant pain for next day and a half and had to stay in bed. (TC’s cause this because pressure is pushing down on inflammation and cysts.)

Week of 9/21  I was out of bed for 30 minutes and put up laundry. I hadn’t felt too bad that day. My lumbar area started to kill me and my legs began to have severe pain.

9/24                 PCP Visit. She also believes my TCs are causing my symptoms because it makes sense (to a logical medical professional). Can’t find another cause. Agreed to coordinate my care with Dr. F in Texas. Supports me 100%!

9/25                 Went to the drive-thru at the pharmacy to pick up medication and a fast food drive-thru. I was in excruciating pain. I had to put my car in PARK when I stopped or was at a red light because I couldn’t stand pushing on the brake pedal. My legs were shaking and weak.

9/30/15            Pelvic MRI at UT medical Center – revealed several Tarlov cysts of at least 1.5 cm. No other abnormalities.

10/8/15            Appointment with Dr. Feigenbaum in Dallas. (More detailed info in another post).

10/14/15          Had Caudal Epidural Steroid Injection. This did nothing to help my pain. Had a bad reaction from it.

10/21/15          First appointment at Pain Clinic for Medication Management.

A Life-Robbing Disease

Since June of 2015, my life has evaporated. Those of you who know me know that I am usually a bubbly social butterfly, sometimes erupting like a shaken coke can when I’m around my friends. I’d rather describe my job title as executive CEO of the Mohr household and community volunteer than “Stay-at-home” Mom. Stay at home? Whatever. I don’t “stay at home.”

I’ve always been the classic “over-achiever.” You know, the annoying teacher’s pet in college who was always asking questions from the back of the room. I’ve always been involved in a lot of things and leadership. More often than not, I bite off more than I can chew because I don’t like to say “no.”

Here is a description of my life prior to TC disease. Due to some other ongoing health conditions I have, I haven’t always been able to do everything I want. With my struggle of bi-polar disorder, depression and Fibromyalgia, I’ve had cycles good times and bad times. But, on my good days, I enjoyed cooking when I had the energy. I volunteered weekly at Conner’s school helping kids read. I was always at everything at Jackson’s preschool. I went on field trips. We went to church. We were a part of a Sunday School class for parents of young children and I went to Mom’s group on Fridays. In the summers, we took the kids to Dollywood, Splash Country, Chattanooga’s Creative Discovery Museum, the zoo…many places. I took Conner to Lego Camp and golf lessons. I bought several Groupons to take the kids to several places over the summer. We had playdates, went to kids’ birthday parties. I went out with friends for girl’s night out. We had friends over. We had birthday parties for the kids. We took the kids to neighborhood events. I was the founding Chapter President of my local alumni chapter. I organized events and served on that board after my office term was over. I was actively in my chapter of the Daughter of the American Revolution. I published a short story. I was recently appointed to the University of Tennessee Alumni Association Women’s Council by the President of the National Board of Governors. For little ole’ “stay-at-home” Mom me, that is a huge honor. (Fortunately, it’s a three-year term so I haven’t completely missed out on the opportunity.) I am the secretary of my neighborhood HOA Board. I was asked to serve as the President of my son’s school PTA to revitalize the program that had fizzled out. I tutored Spanish and English high school students several times a week.

Here is a description of my life after TCs. The only relief I have is staying in bed off of my feet. Lifting anything remotely heavy is not an option. I get out of bed to go to the bathroom, take a shower or bath (Ok. I’ll just say it straight up. I skip a few days sometimes,) change my clothes, make sure Conner is at the neighbors in time for his ride, fix myself simple quick food, help the kids get ready for bed. We have a mini-fridge upstairs in the bathroom where I can get myself food and drinks. My son Jackson lives with my parents, and has for the past 4 months, except for weekends because I can’t get him into his car seat, drive him to and from pre-school, take care of him, lift him, potty train him, change him, or fix his snacks and drinks. My neighbor and my husband take or pick up Conner from school. I only go out if absolutely necessary because the backlash of pain is unbearable. I have a lot more doctor’s appointments. I used to be able to drive myself, but now, driving more than 10 minutes hurts. More often than not, someone has to take me. When I do go to a doctor’s appointment, it takes me at least 2 days to recover. I don’t cook. My husband does all of the housework, cooking, cleaning, has a new job and brings me my food in bed. It hurts to sit at the table. It hurts to sit on the couch or the recliner. It hurts to sit, stand or walk. I don’t go anywhere. My social life is limited to the phone and the internet. Any work I do with any organizations I used to be involved in is over the computer or phone. I can’t go to any of those anymore. It’s an isolating disease.

But so far, for the past 5 months, I’ve been in good spirits because I’ve seen God’s hand working in this and he has been winking at me all along the way. I’ve still be busy working on some things I can do from home. And, it’s given me a lot of time to slow down and focus on my spiritual life. I’ve met some amazing TC women from around the country and world who I speak to regularly and we all encourage each other. I have learned to keep track of the blessings I am thankful for and focus on praying for others in need. Choosing to focus on other things is a conscious decision I made that keeps me from sitting here feeling sorry for myself.

I have never experienced pain like this. I've had lumbar back pain for years, but my symptoms grew very rapidly within a period of five months. It's been worse than having babies and my gall bladder surgery! I was fine and then one day I wasn't. I was having some pain in May but it would go away in a few hours. My pain varies at different times but the worst and most debilitating is the kind that feels like a deep deep sensitive toothache. Sometimes it's been so bad that I'm literally writhing in the bed in pain.

At first I thought it was my back and visited my chiropractor. Then, I thought maybe it was my feet so I ordered arch supports.  I tried stretching that area and my hips, using a foam roller, pelvic tilts, TENS unit, ice and heat therapy, massage, Prescription strength NSAIDs, prescription anti-inflammatory medications, prescriptions such as Lyrica and Cymbalta that are supposed to help nerve pain, prescription muscle relaxer, and narcotic pain medication. I had spinal manipulation, decompression, ultrasound and other treatments from my chiropractor. I started Physical Therapy. No conventional methods of treatment help.   

I can’t touch the pain. I feel like if someone is touching me, they are bruising me. It feels better when I sit in the fetal position. It’s better if I lay in bed and don’t lift anything and stay off of my feet. My tail bone also hurts if I put pressure on it so now I have a sweet Granny Tushy Cushy!  I have twitches and spasms in my legs.

At first I could predict the pain because I knew if I was on my feet at all for a few hours, I would have backlash when I got home. But now I can't even predict it anymore. I'm terrified to get out of bed because I'm so afraid of having to deal with the horrible pain that comes on later. Sometimes it hits the same day, later afternoon or evening, worsening at night. Sometimes I don't hurt until the next day and wake up with it. It also seems to get worse when the weather changes.

To say that this disease is life-changing is an understatement. It is life-robbing.

I’ve seen God work in my life many times, but never like this with so many crazy miracles one right after another. “BAM! BAM! BAM! In your face! I am here!” It has strengthened my faith, kept my spirits ups, and I feel that God has demonstrated His power through this due to so many people praying for me and to show that He can beat the odds. He is faithful. Honestly, I don’t believe that everything that happens to us is “God’s will.”  I don’t believe God “lets things happen to people.”  Look at all of the evil in the world. He has given humans free will and life has NEVER EVER been easy. God never promised it would be either. I don’t believe there is a divine purpose behind everything that happens in life. I do believe that God can take our worst moments and turn them into blessings, whether it be to others or ourselves. I know He can turn our weaknesses into strength. After all, I’m a huge blabber mouth! God knew I would share my story with others and He has the power to turn this whole experience into something positive.