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.
Natalie its been a long 12 yr wait i pray with awareness drs will be educated and informed on such a horrible life robbing disease..having this blog is going to be very helpful to myself and others..I am super excited for this disease to be recognized as an extremely painful syndrome..therefore more attention..thank you from my heart to yours you are incredibly inspiring...God Bless
ReplyDeleteThank you Laura!
DeleteI think there is no way for our loved ones to really understand the way symptomatic TC effects our daily life. Here's what I'd like them to know: Every time you look at a chair or a bench or a stool even when you look at your car, you stop and realize immidiately I HAVE TO SIT. It's almost a panic attack. So you learn to only sit if you have to. That means only driving short distances, no family meals, no long meetings, no classroom stlitting, no chirch, no work.
ReplyDeleteBecause the pain these TCS cause is the effect on other nerves, your foot hurts or maybe your thigh hurts. Maybe you can't go to the bathroom, especially pee after sitting for too long. Too long can be anywhere from 5 minutes to more than an hour. Each day is different, but guaranteed to be worse if the day before you tried to force yourself to endure the pain from sitting. So driving is a problem, walking a distance is a problem because those surrounding nerves are irritated. Bending over to pick up anything hurts after doing it repetitively. No more family dinners, family drives, family vacations, going to a movie, out to dinner, to a play or performance of any kind. All of it hurts. No more bike rides, hiking or anything that involves pelvic movement.
It feels like you're sitting on a jagged rock then the pain starts popping up everywhere. If pushed too far, your lower body may begin to feel like it's burning and the longer you sit the hotter it burns. Your fingers may begin to tingle, your foot may have pain. Your neck may begin to tighten up until you get a massive headache then you can't do anything but go to bed and pray this overall body pain will go away and you pray far more than once. So, you spend a tremendous amount of time alone. You want your loved ones to continue to enjoy life so after convincing them you really mean it. It means you spend all that time alone. You hurt and you get sad. Very, very sad. Especially when thought who have the skills and the education refuse to acknowledge you and the truth there really are symptomatic Tarlov Cysts. I thought they made an oath to do no harm. Isn't ignoring this issue and the truth of its existence when it's right in front of you doing harm?
Wow Becky! Your comment totally blew me away and I am so thankful that you posted that for so many reasons. I love your candid story and someone is going to read that sometime and think, "Wow! That's me!" As I was reading it, that's exactly what I was thinking. Even though all of us are different and we don't all have the exact same symptoms, we all share one thing in common. Pain and isolation. Debilitating pain. Pain that, like you said, affects every aspect of our lives. The aspect that hurts the most is when it affects our families. Most people understand we have pain, but don't understand the degree of it. It hurts to SIT, it hurts to STAND, it hurts to WALK and anything that involves any of the above. For me, walking or standing is the worst but sitting hurts too. So, where does that put me? In bed. 90% of the time, I am in bed. Everything I would normally do with my family or friends, I only get to experience through their pictures or stories. I am always an outsider looking in now. I am extremely blessed that my family has read everything I've put in front of them, the TC Foundation website, Dr. Feigenbaum's videos, etc., and they believe me. But, still, when I hear other stories like yours, there is a little voice in my head that wants to shout, "See! It's not just me! I'm not making it up!" Your story is validating to me, and all of the others who will read it. Even though we are isolated, we see we aren't alone because we know there are other people out there going through the exact same thing: grieving the life they used to have and had hoped for. When you add to the mixing pot, that doctor's don't have a clue what is wrong with you or tell you they can't help you, or even worse, that there isn't anything wrong . . . that isolation turns into despair. I know you are sad Becky. I am so sorry that you have this disease too. I hope you find a doctor who can help, but if not, possibly something that can get the pain under control. But, if you are like me, nothing has helped with that yet. There are lots of other things out there I haven't tried yet though. I agree with you. It angers me that Neurosurgeons and Radiologists who actually KNOW about these TC's turn a blind eye to them, despite the evidence that has been coming out for years. Doctor's who ignore the truth about Symptomatic Tarlov Cysts ARE causing harm. Physical pain and suffering, psychological harm, and putting people in a position where they will worsen over time. If someone had cancer, you think they would ever just say, "There isn't anything we can do to help you. You're just going to have to live with it, even though it's going to get worse. See ya later!" Instead of helping patients achieve a higher quality of life, when they refuse to acknowledge this disease, they push them into a corner where they are forced to have no quality of life. I am so thankful that I have a Primary Care Physician, a smart Chiropractor and a Pain Management Doctor who believed me once I showed them the research articles and pictures of my MRIs. It's a sad fact that we, the patients, have to educate the doctors. But, we have to fight for ourselves. I'm so glad you shared your comment. It helped me and I know other people who suffer from this will feel the same way. Maybe someday, all of those "Non-believers" will read all of the TC Blogs people are creating and realize, it IS a REAL DISEASE and it affects many people's lives. Family's lives. Children's lives. Marriages. My heart goes out to you Becky. Gentle hugs!
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