Spinal Cord Herniation-- Anyone have this diagnosis?

Glad to hear you are still improving Donna. Your first hand experience of SCI combined with your expertise as a physiotherapist make you a real asset to a forum. You helped many "old" Apparelyzed members. Long may it continue.
Peter had an unfused laminectomy on 4 levels over 4 years ago and is still improving. I know the reasons for his laminectomy were different and less complicated than yours (congenitally narrow spinal canal plus complications from old rugby injuries at C4-C7)but his progress after the op seems sort of similar to yours and his main demons are spasticity, fatigue and balance. Plus hand issues for him.

We are fortunate to have you with us donnaptwithsci,

That’ really good! Wish you a speedy recovery!

Geekonwheels, I wish you were still hanging out here.... I need some info!

I am mostly well. I haven't been on forum in a long time. I am sorry we haven't met before now.

So, update on me. I've done truly great in my opinion... Finally weaned off of my cane with my balance and endurance becoming reliable enough for daily ambulation and few falls. My husband and I started a new business and I manage a great deal of the accounting and financial proceedings. I haven't returned to practice as a PT but have been doing some consultation and maintain my PT licensure. I've Done some traveling--even walking some days 5 or more miles through Israel and also in Argentina/Brazil/Uraguay, attempting some hiking in low key terrain-- but that is still a bit much. My oldest son, recently graduated from Georgia Tech with his Biomedical Engineering degree was married in January and now I have five children under my bragging rights. My daughter is finishing her doctorate out of Baylor. My two younger sons are in university, one at the University of Tulsa and one at Loyola University in Chicago.

But the injury current status is evolving... I have been having some dizziness, decrease in sensation in one of my legs, increasing pain in/above/below my surgical site and my legs... and other new complaints include one or both hands having N/T when I awake which mostly returns and a general feeling that they aren't working as well, a base of the skull headache upon waking 5-7 mornings of the week which generally dies down in an hour or so. So again a slow and inconsistent progression of symptoms since last November has been difficult to discern if it was normalish day to day fluctuation or a steady upswing of problems. By March, I was sure so I had an MRI in April with doc concerned about a syrinx. Some changes have definitely occurred with edema of the cord above and below my dural sling... So, doc calls and says I have scar tissue creating the T6/edema problem and "we can clean it up"..... I'm set to actually talk with him about what this surgery might look like next week. I'm also concerned with the MRI results of a C5 ventral flattening of my cord and Cerebellar Tonsil descension into the foramen magnum...-- I'm looking for research to identify what symptoms are connected to what radiological findings. Do I have three separate items occurring or are they related? I am also thinking of soliciting a second opinion from a neurosurgeon who has dealt with Spinal Cord Herniation over time-- possible relapse, etc.

Any of you have any docs you know are experienced with Cord herniation repair? I am willing to travel anywhere in the U.S. or better yet, send my films for second look.
Any one had a CSF study done?
PC-MRI or 3D MRI?
Doppler ultrasound?

What tests have you had done post repair?

I fully trust my doctor and do not think he has done anything wrong. But I also think it is wise to identify the best solutions available especially since this is not commonly
found or treated. My doc reports there aren't any longitudinal studies out there following repair and so it is very difficult to predict what this looks like or means to my prognosis.

I continue to scour the reasearch..