Spinal MRI Results

I wanted to do an update as soon as I got my spinal MRI results but I ended up being stuck in my bed with another awful headache. The pain was so intense that every time I tried to move I threw up. So, in bed I stayed.

Anyways, it’s quite a bit better now. My MRI results surprised me. I thought that I’d had the potential results all mapped out but apparently not. You might recall me mentioning that the MRI was ordered to check for dural ectasia, another common feature of Marfan Syndrome. But instead the results show that I have a very large synovial cyst on the L4-L5 region of my spine. The cyst is so big that it’s compressing a nerve. The more I learned about this type of cyst the more confused and surprised I was. It’s very uncommon to get them if you’re under 45 and by far most commonly occurs in people 60 and over. This is mostly because it’s caused by spinal degeneration. From what I seen while researching on the computer there are only 3 documented cases of synovial spinal cysts on a person under 20. Because of their rarity, my age and my tissue disorder, there is hardly any helpful information that I can apply to my situation. I’m hoping to see a spinal specialist and get some questions answered. I’ve had severe lower back pain for a while now, and the last couple of months it’s continually worsened. Walking/standing for 20 minutes at a time can be a major challenge. I’ve been surviving with the pain – as unpleasant as it is – and me and my doctor have talked about avoiding surgery when possible in order not to mess with my already fragile tissue. But she said if the cyst continues to grow and the pain continues to worsen that surgery may be the only option. Cutting out the cyst would be fairly pointless, with my tissue another would form in no time. The only other way to fix the cyst would be spinal fusion, major spinal surgery, which I dearly hope to avoid. The region the cyst is on is also the part of the spine that moves the most. Fusing the joints together would change the way that my spine moves entirely. But I don’t even know if the same options apply to me as other people because of my tissue disorder. Sometimes I really wish that I had access to a specialist in Marfan Syndrome and tissue disorders. It’s times like these that I feel really alone with my disorder and lost as to how to get the best treatment that I can.

I had a hard time with the results. I was prepared to be told that I had dural ectasia, that was more to be expected. I wasn’t prepared to find out that my body is falling apart in even more ways than I had thought, and ways that are so uncommon. The tissue in my spine is degenerating and I’m only 18. I have a long way to go in this body and it’s scary to have it aging so quickly on me.

If anyone else has been diagnosed with one of these cysts at a young age I’d love to hear about your experience.

The MRI didn’t detect any dural ectasia but we (me and my doctor[s]) didn’t know that it’s best seen with a standing MRI. None of my doctors even seemed to know that those existed and when I googled it I found out that only one place in Canada seems to have one. I’ll talk to my doc about this next time I go in. It doesn’t really matter to me whether I’m diagnosed with DE or not though. There’s no fix for it other than management of pain which we’d already be doing. Before I mostly wanted to know for diagnostic reasons but I don’t need it for that anymore either.

[Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.]

3 thoughts on “Spinal MRI Results

  1. Wow, I can certainly relate to your post. I’m only 29 and I was just diagnosed with the same spinal cyst in the same spot. Mine is completely compressing my nerve. I had to quit my job as a waitress because the pain was too severe. I’m probably going to op for surgery to offset the potential long term damage. I won’t be able to see a doctor for a few more weeks for my neurosurgical consult. I notice this was written over a year ago. What did you decide to do? I still don’t know what disease or diseases that I have. I’m hoping one day that I can get an answer to my questions.

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    • Thank you so much for this comment. I was hoping to hear from someone else in a similar situation!

      As of right now I’ve just been managing the pain, but it’s increased tremendously over the past year to the point where it’s constantly waking me up all night, I avoid bending as much as possible, and it causes some pretty intense pain in my back and lower limbs 24/7.

      I was basically told at the time by my doctor that any surgery I could have would have a low chance of success (especially because of my tissue disorder) and that trying it would probably be pointless, and I could end up worse off. She didn’t exactly recommend it but I did my own research and am going to see a neurologist next March (long waiting list) to ask his opinion. The pain now is getting to a point that I think I’ll need to at least try doing something in the near future, it’s getting pretty hard to handle.

      I’ve also heard of a treatment where they remove the fluid from the cyst with a needle, and that sometimes that can help. Have you heard of this?

      I’d love to keep in touch and hear what happens with your consult. I hope you get answers too, it can be such a long, frustrating road looking for them. Here’s my email, I try to check it everyday katie.robertson@live.ca

      P.s. sorry if some of this didn’t come out very well, I haven’t slept yet haha

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  2. Pingback: Lung issues and more spinal problems. | Connective Tissue Disorders: My Journey

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