Chronic Pain, Depression, Disability, Health, Spoonie

My Tarlov Cyst Journey, by Eliska Kopicová

Guest blogger and chronic Illness warrior, Eliška Kopicová, suffers from numerous chronic illnesses. Eliška has added her face and story to Faces & Stories of Chronic Illness. I’m so grateful that she has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Eliška by following her on Instagram and on her blog, https://wanderingpatient.blogspot.com/.

My Tarlov Cyst Journey by Eliška Kopicová
Eliška Kopicová

Hi, my name is Eliška and I’m a 20 year old girl from the Czech republic.

I’ve had back pain and other types of pain all my life, but it used to be bearable and everyone around me blamed it on my anxiety and other mental health issues.

My current issues slowly started appearing in winter/spring 2018 and got the worst in summer. I’ve started to experience loss of sensation in my genitals, later followed by pain in genitals, abdominal pain, back pain, problems with urinating, bowel problems. And sometimes I’ve got weird feelings in my leg(s). Having a period was a horror.

Doctors were treating me poorly.

‘‘Oh, so you also have mental health issues? That’s probably all just anxiety.‘‘

‘‘Is your relationship actually that good and okay? Maybe you have sexual dysfunctions just because you’re not happy with your current boyfriend.‘‘

I felt bad. Deep inside I knew that anxiety couldn’t do this, but after all the reactions I started questioning whether I was normal. When I was in pain at the hospital and nothing was helping me, I just wanted to die. It was stabbing and burning pain, it felt like someone was crushing all my bones and guts. I couldn’t drink, I couldn’t eat, I couldn’t sit or walk. I ended up in ER many times.

And then… something happened. At one hospital, they took another x-ray and found something weird looking on my spine. There was something on my vertebra and it looked like a tumor. They did a CT scan and then sent me to another hospital as they needed to do an MRI, so that they could check if it was benign or not.

After the MRI, I was told that it’s probably osteoma (benign tumor). No one wanted to talk about it much, but I guess that meant it was okay. They incidentally found a cyst. Again no one wanted to talk about it. They told me that my spine was okay . I told them that I had already seen the MRI results and knew about the cyst … the radiologist was shocked. After a few months of trying to find the right doctor, I was referred by my Gastroenterologist to another hospital. A Neurosurgeon told me that all my problems were caused by the cyst, called a Tarlov cyst.

This hospital had probably the best Neurosurgeons in our country. He performed a puncture of the cyst on me. I was happy that someone finally understood me… at least a bit. I was trusting and naive. It was obviously a bad idea as since then, I’ve developed new issues, my cyst grew even bigger and I didn’t want another puncture. So they ditched me.

I visited one doctor in Germany in January 2020. He’s a specialist and he told me that doctors in our country shouldn’t have punctured the cyst and that he could perform a surgery which is probably the only thing that could help me. But it was risky and I didn’t know what to do. It felt like every option wasn’t good.

My life changed a lot. So here I am, feeling like almost no doctor really cares. I can’t have sex anymore, standing and walking is painful, my legs are sometimes twitching and my left leg is worse than the right… My life is completely different. And I’m scared that I’ll never get better, because this is not bearable.

I hope that doctors will be more educated about this rare disease and that there will be a cure one day. I hope that patients will get more support from our country, because we aren’t considered as ‘‘disabled‘‘ when it comes to disability pension or disability cards. I’m ‘‘lucky‘‘ that I have Autism, so I’ve got my disability pension because of my mental health issues.

I feel like we still don’t know everything about what’s wrong with me. I was born with hypotonia and hypermobility. I also have scoliosis, hyperlordosis, tachycardia, ADHD, and other undiagnosed issues. They tested me for some forms of EDS but the results came back negative.

Nerve pain medications and CBD oil didn’t help me. Sometimes I use a heating pad, sometimes I use ice. I’m using birth control so that I don’t have my period. I have opioids at home, but I’m too scared to use them regularly. Sitting on soft surfaces or lying in bed is helpful – walking makes it worse.

If you’re a newly diagnosed patient, try to find others like you … there are many Facebook groups for example. It can be really helpful. Try to find a doctor who specializes in Tarlov cyst’s and not just a random Neurologist or Neurosurgeon. Try to visit a pain management center, they can be helpful too. Find a therapist … it’s really nice to tell someone everything you’re too scared or uncomfortable to say to your family. If you need a psychiatrist because of anxieties or depression (many patients have mental health issues because of their chronic illnesses), don’t feel bad about it and don’t be afraid to ask for help. Think twice before you try anything invasive (surgery, puncture, nerve block) and try CBD Oil, maybe it’ll help you.

I talk about my problems in order to raise awareness, so if you’re interested, I’ve got an Instagram account and a blog – www.wanderingpatient.blogspot.com – I want to talk more about my experiences with Tarlov cyst, doctors, treatment (the puncture, meds, etc.), chronic pain, ADHD, late autism diagnosis… my whole journey. It feels like a roller coaster sometimes and there’s a lot to talk about.

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