Syringomyelia symptoms? Please help!

[Lindskea]

Hi everyone!

I was diagnosed with Chiari in April 2015 and underwent surgery in July 2015. I had a decompression, laminectomy, and duraplasty. It's now a year later and I almost feel worse than ever. I have headaches every day, especially right behind my ears, my back is constantly killing me, and I am so fatigued that all I ever want to do is sleep. I'm a 20 year old college female and I hate feeling this miserable! I've done some research and I'm scared I may have syringomyelia. My neurosurgeon ordered a head CT and MRI, but I never got any scans of my back or neck. For a while I thought maybe it's just bad posture, but the pain gets worse and worse (I also have Scoliosis.) Specifically, the pain is throughout my shoulders and upper back. Also, I randomly get an excruciating pain right beside my spine (it feels like someone is poking me as hard as they can), and I was wondering if that was a symptom of syringomyelia. It's hard to find people's experiences with syringomyelia online so I would love to hear how it has affected you guys and if you think I may have it. My neurosurgeon never ordered any follow up scans after my surgery and never mentioned my back even though I told him it bothered me. I am going to try to get an MRI of my back, but I would still appreciate your opinions.

Thanks!
Lindsey

[selmaS]

  I didn't think I fit it either , I do not have elastic skin either....but I was DX'''d with it...most of the symptoms listed are the more common ones but are not the only symptoms and not everyone has all of them.

Do get it ruled out to be safe.

[Lindskea]

Thanks for your responses. I've looked into EDS a little bit but I don't think I have the main symptoms. For example, my joints are flexible and my skin isn't elastic or thin. But I guess I should still have it checked out by my surgeon. I just don't understand this neck and back pain, it's driving me crazy!

[selmaS]

  A hairy patch is only one possible indication of TCS...but there are other things to look at.an elongated brain stem  or a scaral dimple, .....

I have TCS but no hairy patch.

You will also want to rule out EDS as it can cause disk issues and joint pain...so it could explain your back issues,,,and it is related to Chiari.

[Lindskea]

No, they didn't really check for anything else. He took a look at my lower back and said he was looking for a hairy patch and that I was fine. No MRI or anything of my back or neck. I'm in the process of trying to get another appointment with him to have an MRI done. You seem to be pretty knowledgable about all of this, so what do you think? My upper back hurts pretty bad most of the time, I get shooting pains down my right arm, I see "floaters" in the vision of my right eye, I still get headaches and have a lot of pressure behind my ears. Specifically in my upper back, I'll randomly feel like someone is stabbing me just to the right of my spine-- it's miserable! Also, I'm more tired than I've ever been in my life. I'll wake up and have to take a nap an hour later. I'm only 20 years old! Yesterday marked the one year anniversary of my chiari surgery, so it seems odd that this is all still happening a year later. Do you think it could be syringomyelia? Or does it sound like it could be something else?

Thank you so much!
Lindsey

[selmaS]

  Spina bifida but not tethered cord?...other disk issues or Syringomyelia?

I would go have a MRI of the spine....complete spine to look for possible disk issue and or syrinx.

[Lindskea]

My back pain has been hurting me long before my surgery. It has just gotten worse recently. He did not schedule a year MRI, the last appointment we had together was a three month post op check up. I never had any scans done after my surgery. When I first met with him before my surgery he looked at my lower back and ruled out spina bifida. I do however have scoliosis.

[selmaS]

  Hi Lindsey and welcome to the Chiari forum.

May I ask how long post op did these symptoms begin/return?

Did you have a one yr post op MRI?

Were ALL related conditions ruled out?