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?

[selmaS]

  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,

[squirtatious]

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*

[bricks2nd]

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.