Syringomyelia - please help

My husband was recently diagnosed with a syrinx from C7 to T1. He has had back pain for over 7 years; he is only 27. This finding was made by an Orthopedic Surgeon, who ordered an MRI with dye repeating the C spine and T spine to look for tumors. When we returned for his next appointment, this Doctor said there was not much to be done that surgery was worse than the symptoms even though he had never listened to any symptoms from my husband other than pain. When we told him that our family physician had requested that pain meds be prescribed by him he said he could refer my husband to a Pain Management Specialist. This was all he was going to do, so I told him I was confused, that the things we had researched about Syringomyelia stated that the condition does not get “better”. He then said he could refer us to an Neurologist who had seen more of these cases but they would just tell us the same thing. He made no offer to monitor the situation and getting the referral to a neurologist seemed to be like asking for above and beyond what he needed to do for my husband. It has been over a week and no referrals have came from the office. It is obvious that he does not want any part in the process or treatment.

My husband has been living with this pain for all the years we have been together, we now have 3 children under the age of 5 which he is in so much pain even with meds that he can not even play with them. Functioning on a daily basis is almost more than he can bear.

My questions are:

When an MRI is done of the T & C spine with a syrinx noted will they look at all for Arnold-Chiari malformation?

Should the Orthopedic Surgeon have ordered  an MRI of the brain or a CT scan or are these strictly done by neurology? If not suggested when he see a neurologist should we ask for these tests to be administered?

My husband is not always clear with all the details of pain/weakness; he seems to tell me much more than he relays to Dr's. Should he request to have an EMG and/or CSF lumbar puncture at the neurologist?

Is there a neurologist that specializes in Syringomyelia in Ohio?

Thanks in advance for you time!

[Justin_123]

Dear AJames,
I found out I have syringomyelia 20 moths ago after a serious car accident that caused the symptoms to show up. What I would do is search for local Neurosurgeons and/or Neurologist that specialize in either syringomyelia or spinal cord disorders. Bring your case to him and ask if he can order a mri from the head to the end of his spinal cord, and have him order it with contrast dye so it will show up better. If you want a EMG and/or CSF lumbar puncture it would be possable to do after the MRI and the following meeting with the neurosurgeon/neurologist to see what he has to say. Even though I personally havent had a EMG or CSF Lumbar Puncture done it is not a bad idea.

neurologist/neurosurgeons at Ohio State University
Sandra K. Kostyk, M.D., Ph.D. - http://www-neuro.med.ohio-state.edu/faculty/kostyk.html

you can also google neurosurgeons and/or neurologist in Ohio and/or your area of living in Ohio.    

[marilyn2m]

My son 24 has been suffering for 8 years diagnosed with syrinx C3-T1
Check out the Chiari Institute in New York///-Dr.Paulo Bolognese   Dr.Milhorat
also
www.asap.com -re syrinx
you can email me at ***@**** for more info /support
My heart goes out to you stay strong
Marilyn2m