- 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.
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