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Newly dx with 1cm syrinx... next steps?
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The spinal cord is the part of the nervous system that relays messages to and from the brain. Discuss topics including spinal stenosis, spinal cord injury or damage and treatment methods.

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Newly dx with 1cm syrinx... next steps?

Hi! I am a 27yo female with the following symptoms: Pain, numbness, and tingling down legs and arms, bottoms of feet, tips of fingers, shoulders; Bladder issues; Migraines; Vertigo/Tinnitus; Morning nausea/vomiting; Difficulty walking; Involuntary muscle jerks (mainly in hands/feet; sometimes lasting 2 days); Bouts of distorted vision; Sensitivity to temperatures.
I have been feeling a combo of these symptoms for about two years now, but chalked it all up to a back trauma I experienced doing gymnastics (I was told at age 14 that I had Spondylolisthesis) and figured I has a pinched nerve. I then started to have bladder issues and thought I would see a doctor. I was told that it was stress and put on effexor- I only saw an increase in my symptoms. After the doctor suggested I up my dosage, I decided to go see someone else. This time I felt like I made progress- she said it sounded very much like MS or Lyme and told me to see a neurologist. I found a reputable neurologist near DC and she ordered some tests (MRI's w and w/o contrast, EEG, EMG, VEP). She said that I have a stage 3 herniated disc with severe spinal stenosis of the lumbar region but she sees no signs of nerve damage; She also says I have a 1cm syrinx (C7-T1). She suggested I see a neuro-urologist for my bladder and gave me a different migraine medication to try (as NOTHING seems to help them). I asked her about my symptoms being related to the syrinx, and she says she is not that concerned about it and will see me in 3 months. I was hoping for her to talk to me about possible treatment, but basically said there is nothing. Don't get me wrong, I am happy that it is not MS, but from everywhere I am reading, a 1cm syrinx is not something to blow off if symptoms are present. Not to mention the painful/odd sensations I feel on a daily basis are driving me nuts! I am getting a second opinion, but wanted to see if anyone is in a similar situation and what are realistic options for treatment/pain management?
Tags: Syrinx
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620923_tn?1404844667

  Hi and welcome to the Spinal Cord C/D forum.

With a syrinx unless it is of a certain size there is not much they can do as most r too small for a shunt or a stent to be used to divert fluid away from the cavity and growing larger.....

With all ur symptoms I am surprised u do not have CM.....Do u have a copy of ur MRI? is it of ur brain or the cervical spine? If u do not have a copy call the location that did the study and request one along with a copy of the report....

A syrinx can form 2 ways, 1 from an injury, and 2 from obstruction to CSF flow.....

  Since u had an injury at age 14 that could be the cause as these can be slow to grow....but many times once they get to a certain point may increase in size rapidly or continue to grow slowly....it is hard to determine what may happen.....we do have a list of activities to avoid to help lessen triggering symptoms.....

Meds could be the best option along with monitoring it.....unless u have Chiari as well, surgery may not be an option......I know that is not what u wanted to hear, but u may also want to try a Dr that specializes in Chiari and Syringomyelia to get their opinion,
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What grade is your spondylolisthesis? Foraminal stenosis is common with spondy folks when their spondylolisthesis becomes symptommatic. I'm not too familar with sryinx however you have a great resource in Selma! I'm a spondy family member myself and have become quite educated in this spinal disorder. I wish you the very best!! *hugs*
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I have severe spinal issues. I am on surgery 14 with 80% of my spine fused.

I am very surprised they didn't send you to a neurosurgeon because of the bladder issues. That is a huge tip off that your spinal canal is compromised. Every time I have lost bladder control, I am immediately in the NS office.

My injuries were caused by a car accident when I was 22. Because I was 'too young' I did not get proper treatment until I was in my late 20's. Don't let that happen to you. I have permanent nerve damage and am now disabled because of it.

Try to get in to see a neurosurgeon. They are the best to tell you if you need surgery.

Best wishes.
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