Thank you Keith Bruce, but the information that the neurosurgeons and neurologist gave me was as of now there is no surgical procedure that will help. They did say however that in 40 or 50 years that stem cell research may be at a point then that would help. I had been very hopeful up until that point that there would be something that they could do. They told me that what they thought was a very large syrinxe really was all scar tissue and very fibrous, and also that the scar tissue was enveloping the cauda equina to a point that no surgery would be of benefit to me. So as hopeful as I was, it was worse news than I had ever even imagined. They even went as far as telling my primary physician that as unstable walking as I am that it was time for a wheelchair, up until this point I have been walking with a cane , but was falling down almost daily. I haven't been able to walk through a store or past the entrance at wally world for a very long time. I would still like to tell everyone on this forum thank you again for your encouragement and support, I will just do as before taking one day at a time and keep on going.
After going into my local spinal unit for rehab they noticed deterioration in neurology, I had gone from a bad walker to a very bad one/wheelchair user
I had assumed it was age, purchased an electric bed to help me get up etc etc, putting it all down to me getting older
Feb 2016 I rang the unit as I was having severe shoulder pains, stopping me driving, pushing chair etc. Mar 2016 I had an MRI scan, heard nothing and thought it was just wear and tear. The physio who helped treat me 23 years earlier saw my shocking walking gait and suggested an inpatient visit.
Rolling forward to Jan 2017 I went in for a week, they found MRI from March 2016 not followed up and had found a significant syrinx, fortunately a new MRI found it had not grown. Three wekks I ended up in there, the staff all brilliant and they managed to persuade me that an electric chair was the way forward [ how right they were, Im a c4/5 incomplete by the way, no triceps ]
Now waiting to see a Mr Flint , a neurosurgeon at Birmingham QE hospital, I suspect he will suggest do nothing unless my neurology further deteriorates
Welcome nobby, thank for your reply. I hope the folks here make you feel as welcome as they have me. This forum has been so helpful and informative for me. Members here are so knowledgeable, if I have had a question someone here always has an answer. I feel as though I can talk to anyone about most anything on here and have made a few friends also. I wish you all the best on your lifes adventure. TJ
Welcome, nobby. My injury was March 15, 2014. I 'came to' in a hospital with a tube down my throat and a lady doctor telling me that I'd lost a leg and had a broken back. As bad as that was, I can understand how disconcerting it is for you and tj to have a condition that day-to-day keeps you guessing about what will happen next and what you should do next.