- Tarlov Cyst
- Interviews
Mom's interview
How did all start?
In the fall of 2021, I was walking my dogs every morning. My calf muscles started hurting really bad and worse at night. Similar to sciatica. Going to pain management, he felt them to make sure there were no blood clots. He started steroid injections. In the fall of 2022, I had to visit urologist. He performed a cystoscopy. Almost immediately after, I started suffering from sever burning and pain in groin area. After a couple of days, I noticed pain was moving around the groin area. Then I knew it was some kind of nerve issue. I requested an appointment to see a spine surgeon. He requested updated mri which was done early 2023. my last mri was spring of 2021. After reviewing mri, the surgeon stated he had no idea what could be causing my issues. I asked for copy of radiology report. I saw the cysts on the imaging, I just didn’t know what they were and they were not on previous imaging. But they were listed on the report. I am still seeking medical attention at this time Fall 2023.
Do you already have a diagnosis? How long did it take you to get it?
Diagnosis imaging report, not from surgeon.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pain management, I showed Dr where cysts were located on imaging. Steroids typically last about a month for me. This last injection helped for over a month and a half.
What has been the most useful thing for you so far?
I can’t take otc pain medication, anti inflammatory or prescription pain medication. So steroid injections for the moment
What have been your biggest difficulties?
Having to deal with guilt trip from significant other.
How has your social and family environment reacted? Have your social or family relationships changed?
No, not very social.
What things have you stopped doing?
Bike riding, jogging, lifting heavy objects, sitting for over 15 to 20 min, relations
What do you think about the future?
Looking forward to seeing Tarlov specialist first part of 2024.
So far, which years have been the best years in your life? What have you done during them?
30 to 50. raise family
What would you like to do if you didn’t have your condition?
My normal life prior to 2020
If you had to describe your life in a sentence, what would it be?
Unpredictable
Finally, what advice would you give to a person in a similar situation?
Keep searching for answers. Just because 1 dr tells you Tarlov cyst are non symptomatic, it’s just because that’s what they teach them. They have discovered that the cysts are more symptomatic than what was originally thought.
