2% of the worlds population is diagnosed with PTS. The symptoms, treatments, and etiology are wholly different that any other type of Syringomyelia. I have copy and pasted the best, and most 'to-the-point' information I can find on this topic - which is not very good. I will find more over the coming weeks. I have been studying this with my neurologist for the past 10 years. I am doing this now for a few reasons. I want to spread awareness of this deadly condition; I want my friends and loved ones to understand better what I and my children are facing - and have been blessed enough to survive through these past 10 years; as well, spreading awareness will help not only with diagnoses, but it may save the lives of those with PTS in other area's of the spinal cord. Neuro-Surgery is sometimes an option with PTS of the Lumbar and Cervical area's of the spinal cord. The largest study I have found involved 16 patients - but life spans where too short, one surgery ended in immediate death, and the remaining patients deteriorated at different rates and died before any new conclusive findings could occur. However, it is known that the onset of cardiovascular malfunction is the most common and prominent signal of the late stages of PTS of the thoracic spine. I found out this past week that I am experiencing cardiovascular malfunction. It has been affecting me for quite sometime and was unfortunately misdiagnosed as an unrelated medical issue.
The type of PTS that I have, post-traumatic syringomyelia of the thoracic spine, is the deadliest with a 100% mortality rate to date. My onset was at age 30. The etiology: a severe motor vehicle accident at the age of 11 that caused a metal spike to enter into the right frontal lobe of my brain. It is very common, up to 90% of patients, for PTS to strike 5-20 years after the initial spinal or brain injury. Mine was 19 years after. Science is now seeing even longer dormant periods, or lapses of time, after the initiating trauma - up to 30 - 35 years.
PTS of the thoracic spine is closely related to ALS (Lou Gehrig's disease) symptomatically and functionally. Knowing that may help people better understand this very poorly understood and even unkown condition. Most doctors I have come in contact with over the past 10 years know nothing about PTS. I have seen each one of them go on to personally research the condition after they are intrigued by what they learn from me medically - and then watch as they find the lack of available research as frustrating as the condition itself. I have been blessed to have an amazing neurologist with me since the onset of this 10 years ago. One of the best neurologists in the U.S.
I was forced by the Post Office and my neurologist to retire on my 32nd birthday back in 2002, assuming a very short and uncomfortable life expectancy thereafter. I truly feel blessed with all the time I have been given so far. God is amazing, and He has no medical time tables. Medical expenses are approximately $15,000 - $30,000/yr to "keep me going". A bill that is generously paid for through my retirement. However, the first two years where accompanied by approximately $100,000 in medical expenses that were never covered. A burden that remains on me and my children to this day.
I apologize for the rawness of this information. Consider this information not only raw in nature, but also only a very small dose of what we have personally learned over these past 10 years. But I think this will be sufficient at this time. I will add more later. I very much welcome, and even solicite your comments and questions.
Thank you for your time and God bless,