Post by donnaptwithsci on Jan 23, 2017 18:33:19 GMT -8
I am looking for other people with a Spinal Cord Herniation diagnosis. This is best described as a condition where the spinal cord exits the dural sac which has torn or frayed. The cord migrates through the opening from the pressure gradient as well as the pulsing circulation of the CSF. The injury to the cord occurs gradually over years resulting in a steady loss of function. The cord acts to cork the hole eventually folding in half and progressively becomes more involved the longer it continues. --Remember the cord is just slightly denser than jello...
There are only a few hundred cases of diagnosis and reconstruct/repair in research literature world wide....
I'm just wondering how you are doing. How far post-op are you?
My diagnosis of T6-7 SCH was 11/2013 and I had repair 12/3/2013 which consisted of a 3 level laminectomy T5-7, opening of the dura ventrally to untrap the corked cord from the front of the dura. A bovine sling was slid around my cord to wrap it and prevent it from re-exiting the hole in the dorsal dura. The sling was glued and stitched in place, followed by the closing of the posterior dural incision.... No fusion. During surgery the Motor and Sensory Evoked Potentials flatlined... which is a bad prognostic indicator. However, I am now a walker and I use a cane on uneven surfaces or for prolonged distances. Originally I was wheelchair dependent. My balance is iffy. Fatigue and Spasticity are ruling factors in how I live! I truly hate the banding feeling in my ribs, the cold and burning in my legs. Plus falls, I hate falls. Nonetheless, I am continuing to improve after 3 years for which I am relieved.
I had found 3 others on apparelyzed... just wondering if there are more here.. Hello? Anyone?
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.
Post by donnaptwithsci on Jan 24, 2017 17:22:09 GMT -8
Thanks moco . It is good to hear that your husband is still progressing too.
I am glad to be connected to this new family as well as the last forum peeps. I know the forum helped me far more than anything I have to offer. I still like to throw in my 2cents, whenever I can. My pre-injury work, being mostly in neuro, allows me to reason through my own situation-- but honestly, there are many days, I need/needed someone else to give me their read on my scenario. It's always easier to see something in someone else.
I go to my 3 year post-op check tomorrow. Expecting xrays, bone-density scan, and likely MRI update... I have a few arising symptoms--that's why I was hoping to turn up others, similar to me.
Thanks moco . It is good to hear that your husband is still progressing too.
I am glad to be connected to this new family as well as the last forum peeps. I know the forum helped me far more than anything I have to offer. I still like to throw in my 2cents, whenever I can. My pre-injury work, being mostly in neuro, allows me to reason through my own situation-- but honestly, there are many days, I need/needed someone else to give me their read on my scenario. It's always easier to see something in someone else.
I go to my 3 year post-op check tomorrow. Expecting xrays, bone-density scan, and likely MRI update... I have a few arising symptoms--that's why I was hoping to turn up others, similar to me.
Post by geekonwheels on May 1, 2017 16:14:38 GMT -8
Hey all, a bit late in seeing this as I've been away a while, but I just wanted to put my hand up for the OP. I too was a herniated spinal cord and I'd be one of those few hundred written up cases you'd seen. My herniation was at the T9 and I had my surgery back in 2000. They repaired the herniation successfully at the time and I was up on my feet in about 3 months. At the time of the surgery, I was 27 and my doctor at St. Mike's in Toronto told me I was the youngest case he'd found at that time.
For about 8 years all was good, as I was able to get into mountain biking for a long while. I had a few residual symptoms, a bit of weakness in the right leg, no sensation in the left leg, but the surgery seemed a success. My story takes a unique turn after that though, which led to more surgeries in 2010 and 2011 which led to my life in my chair. Not directly the fault of the herniation, but the scar tissue built up from the surgery ended up doing nerve damage over the years. As I said, unique to me and not something I'd worry about, especially if you are keeping up with your check ups.
So you aren't alone my friend. It is a rare one and it is good to meet someone else who has experienced it. My wife and I have moved on and built a good life so keep with it. I'm trying to get back into the forums here after a long break away. Can share more and would love to hear more if you are interested.
I've been looking for people with this diagnosis for two years (previously unsuccessful). I'm just a bit perplexed and do not know what to say now. I will write you a message later. I am really happy that you have looked again in the forum.
Grammatical errors are caused by the automatic translator.
Post by donnaptwithsci on Jun 2, 2019 13:30:15 GMT -8
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.
... 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..
I read your update with great interest.
So far, I did not have a CSF study, no PC-MRI, no 3D MRI and no Doppler ultrasound ...
A few days after surgery, only one nerve conduction velocity of the legs was performed.
Since my repair in August 18 I had three follow-up inspections. At the first inspection (September 18), only the appearance of the outer scar was checked. On the second (November 18) an SEP and MRI of the thoracic and cervical spine were performed (many shots and CISS sequences). At the third control (May 19) only a MRI was created.
In July I already have my next inspection. Here again an MRI is created + SEP and MEP. The neurosurgeons are uncertain about the further course of action. The only fact is that a change in the spinal cord has been detected. What is certain is that this is the area of the spinal cord that has been repositioned from the dura defect to its original position. Apparently it is not working tissue.
Therefore, even with me no one can predict how it will develop and whether a re-OP may be necessary.