Misdiagnosed Tarlov Cyst's

This is my beautiful wife Jamie who is only 28 years old, with our two kids at my eldest's school. On our day's off, we would always enjoy taking our kids to the park, play games outside running around and just being silly. My wife always made sure to show us how much she loved us and cared for us no matter how tired she was. She is my strength, my one true love, my soulmate. We always looked at the future knowing that as long as the family is healthy together, there will always be a brighter tomorrow.

Last August, she suddenly felt severe lower back pain that just would not go away no matter what medication our primary care physician prescribed her.  Our doctor just said that it was sciatic nerve pain and that she just had to live with it like everyone else. Two months later, her symptoms became much worse and after numerous visits to the doctor and the emergency room, our doctor finally ordered an MRI and told us that the results showed a herniated disc. He then referred us to an Advanced Pain Care doctor which said the same, telling us to do two procedures of injections into her spine . Even with insurance, for some injections shots, we were charged $1000 per procedure as a co-pay which we did our best to raise the funds, getting the procedures done over the span of 3 months in hopes for a less painful tomorrow.

Sadly, those procedures only made the pain worse and even caused the problem to worsen causing severe numbess and tingling to her legs, making simple things like standing or sitting unbearable. We were then being referred to a spinal surgeon in which never bothered to even return our calls for scheduling. My wife then decided to ask for a copy of her MRI results back on October to discover something very disturbing upon reading the written report.

At L5-S1, a mild disc bulge effaces the epidural fat. Mild bilateral foraminal narrowing without impingement. Large Tarlov cyst at the second sacral segment.

As we were watching the MRI images we discovered these images among many in which we did not quite understand.
Once we confronted our doctor about this, it was obvious that he did not even bother reviewing the actual image and had no idea what a Tarlov Cyst was and just kept trying to cover up stating we needed to see other specialists instead. No matter which doctor we spoke to, even the hospital doctors had no clue what a Tarlov Cyst was and just said there is nothing wrong with her MRI and just to live with the pain. The looks we got as we tried to explain the symptoms she was struggling to endure was just hurtful, as if my wife was just imaginging the pain.

Day after day that passed, everything just kept getting progressively worse, my wife could barely feel her legs often, could not stand and every attempt she made to sit and rest was positional. Imagine coming home to seeing your wife crying in pain on the floor unable to stand on her own. The pain she feels emotionally when our boys  ask to go to the park and play but has to ask to go another day due to everything she endures, the pain she feels as a mother seeing the sadness in our boys having to turn them down. Even if my wife was the only one that could feel the pain, the whole family suffered...

As we got desperate waiting for more appointments with different doctors telling us to live with it, we did our own research of her symptoms and what the Tarlov Cyst was in her MRI report that we came across the video of Dr. Frank Feigenbaum in Dallas, TX. We were so suprised with everything he stated the Tarlov Cyst was compared to what all the other doctors kept telling us that even if we were on a very tight budget, we flew out to Dallas for the first time to consult with him.

As he was reviewing my wife's MRI image, we not only found out that my wife had 4 cysts in her spine that is compressing her sacral nerve roots along with bone thinning and erotion, which is causing all of her symptoms and if not treated soon, can cause permanent nerve damage, but also that her only ovary she had left was also filled with multiple cysts!



Although we were presented with alot of bad news immediately, we were very relieved to finally get answers to the mysteries other doctors just brushed off. We are also glad to hear that he is one of the only 3 doctors in the US that can actually treat my wife for her Tarlov Cysts, even if it was miles away from home. 

Unfortunately, since she will be requiring a very delicate surgery to her spine, the out of pocket we are now faced with to get her surgery done is estimated to be over $11,000 not including the air fare to Dallas and the stay there, as well as the wages we will lose during our stay there which is very much needed  to pay for all the bills.

I am known to be very prideful, helping everyone and anyone I can but never letting others help me even when I need it. I have always avoided being a burden to anyone else and did what I must just to get by, but my family has suffered long enough with this, and this is something I know I cannot do alone. I would like to ask anyone that can, or is willing to, for help. Our family is doing everything we can to also raise what we can to cover as much, but is in need of help for her treatment. Since he is one of only three doctors who can operate on this, space is stretched far for surgery dates and the soonest we are able to set is in 3 months in hopes no permanent nerve damage is done by then.

We are not asking for wealth, nor do we ask for something we do not need. All we want is to get the chance to get our lives back and for the future of our boy's.