Post Traumatic Syringomyelia of the Thoracic Spine: PTS
Please understand that I threw this together right inside this 'box' in a matter of minutes; feeling that the time is now to share this information I chose to not take the time for formalities.
"The worst news about PTS of the thoracic spine is there is no cure."
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,
Ronda
The information below I copy and pasted from WebMD
Some known Causes
■Motor vehicle accidents: 50%
■Violence (gunshot & stab wounds)
■Falls: Especially young < 16 and old > 45
■Sporting accidents: Diving > football & horseback riding
Clinical features
■Regions involved for me specifically
■C4 to C6
■Mortality: 1 year
■Paraplegia: 6% to 10%
■Quadriplegia: 30% to 40%
■Late complications
■CSF leak (spinal fluid)
■Infections
~ Painful spasms: Especially with intercurrent infections
Treatment
■Acute
■Mechanical stabilization of whole spine in neutral position
■Airway maintenance
■Blood pressure
■Skin care
■Hospitalization
■Airway & shock management
■Spine stabilization
■ Agents to reduce cord damage if applicable:
Corticosteroids; Gangliosides; Naloxone....
END OF ARTICLE, FOR NOW...
~~~ Comments ~~~~
I have copy and pasted some posts from friends that were attached to this original note on my personal fB page. Thank you, my dear friends, for your love and support - you are all beautiful!
October 17 at 10:13am · Lori ~ Hi Ronda... thanks for the information and regarding the "raw"... it's not bad and maybe for some it will make it easier to understand. Praying for you sweet thing..
October 17 at 11:38am ·Lori ~ Ronda.. you are loved... and prayed for... DAILY!!
October 17 at 6:34pm · Kelly ~ You are loved....I can't wait to see you tomorrow!
October 17 at 6:59pm · Kellen ~ ♥ you jessicas mommy!
October 17 at 9:23pm · Kim ~ Ronda,
Thank you for sharing this...I know how hard it is to share something so private, but I'm glad you did so we can all get a better understanding of what you and your family are going thru. Similar to ALS?! Unfortunately, I know of that... disease first hand, Grandfather died of ALS and my father was mis-diagnosed with it (he doesn't have it, he just has Parkinson's and Alzheimers-oy). Terrible disease and my heart breaks, simply breaks for you. Can I swear? F*ck! Ok, that felt a little better. I'm sending you all my good vibes and prayers. Milo would like to deliver some goodies to you...are you available on Mondays?
October 17 at 9:49pm · Thomas ~ I dont understand the severe cruelty of this condition. I find it so hard to understand why such a beautiful person is afflicted. All i can do is wonder why God allows such things to happen to you Ronda. I cannot help but feel slighted and cheated by God and angry. And yet you continue to go on without a tone of an accusitory manner. I dont know how you do it. My prayers for your health will continue and my friendship and adoration to you will be unwavering. I am truly sad. But happy and blessed by your friendship.
October 17 at 10:15pm ·Ronda Rae Franklin ~ @Thomas- you give me too much credit as always Thomas, and I love you for it and inspite of it. God allows things to happen for a reason that I do not need to understand to have peace with. I always have Joy from Him. He is always with me ...and He will not fail me. He is always steadfast, and always gives me all that I need. He knows all - and because I fully believe that I know I do not need to know all. I will continue on this path that is His for me, and do my best not to waiver too much. I pray my book touches many lives. That is why it was written. God bless you dear friend. You hold a special place in my heart.
October 17 at 10:25pm · Janine ~ I have been trying to wrap my head around this. Not the facts and figures of the disease. But that those apply to you. Facts and figures are for people we don't know and love! Crappy things are supposed to happen to "other people" (yes ...I get that those people have others that love them, too....but moving on...). But I must say that I am truly in awe of you. You are such a positive, steadfast, God loving woman in the face of such adversity. How could I not be? I can only pray that I learn from your beautiful example of how life should be lived. To let go of that which cannot be controlled...I am so glad I am able to call you my friend!!!!
October 17 at 11:24pm · Kelli ~ Ronda, you are in my families thoughs and prayers. You are a beautiful person inside and out and we are here for you and your children. Lots of love to you. I will be in touch today! HUGS!!!! Kelli and Family xoxoxo
October 18 at 7:56am · Kelly ~ Oh Ronda - this is so mind numbing... Thank you for posting this info - not that it helps to understand the reasons this is happening to you :0( sending prayers and love your way...
October 18 at 8:18am · Mary-Pat ~ Ronda......I had no idea......my thoughts and prayers are with you always--your faith and courage are an inspiration and gift to many--thanks for sharing with us--blessings to you
October 18 at 9:21am · Joe ~ After reading your note several times, I can't help but be moved.
Raw is good in a de-sensitized world. In short, for me its a call to appreciate the beauty of life and a reminder not to take anything for granted. Even for those of us who have the hope of Heaven, we struggle with news like this. It goes from words on a page to, what do I really believe? You've said it before- Love never fails, and its His love that sees us through these times.
I imagined myself in your shoes for a moment, my heart breaks. Sure, for all the obvious reasons but also its convicting, for a lot of wasted moments.
You have and continue to put yourself 'out there'. There will be those who take it to heart and those who hear and don't. Like the Gospel, the importance of the message is determined by our response or lack of response to it.
I bear your burdens- together in Christ and I am so thankful to share these times with you. God has prepared you for such a time as this. If trials refine us then you are going to shine the brightest!
October 18 at 9:54am Jenny ~ This totally breaks my heart but my faith knows that you are an OVERCOMER! and the Word says, " to him that overcometh will I give to eat of the hidden manna, and will give him a white stone, and in the stone a new name written, which no man knows saving he that receives it. "
Christ is the cornerstone and you have received him. His ministration of Grace now works through you to minister to others! Thanks be to God. You are a rawness Goddess and we are with you through this with LOVE. ♥
Steve
Hi Ronda,
Your smile lights up every photo...a sign of the peace, presence and goodness of God. And all the more miraculous given the trials that you face. I am blessed to know you and inspired anew to live each day with joy and thanksgiving to the Living Lord. steve
Sheli Ronda- I feel like I am finding you all over again and am very grateful. I am a cardiothoracic nurse, and I have never heard of this. So, thank you for sharing this "raw" information....knowledge breeds intelligence...sending you many hugs across the miles.
Thank you, Sheli. It's comments like yours, the not knowing even in the medical community, that makes this so important to me. Like you said, but in a different way, Knowledge sheds light and takes away fears.
Isn't it funny how life truly does circle around and bring us back to certain places and certain people. There is a reason for everything. Even this.
