About Me

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Anacortes, Washington, United States
This is my testimony - my testimony of faith and lack thereof; of the rising and falling of hopes and dreams; of beliefs and disbelief's; of tremendous heartache and human folly; of reaching out and stepping out when all I want at times is to is pull back and step away. At the age of 30 I was diagnosed with a very rare neurological condition called Post-traumatic Syringomyelia (PTS). Please visit my post on PTS. One of my goals is to increase awareness of this terminal condition. Broken to Grace is not yet released. Follow this blog to receive an email when the final release date is announced. God bless, Ronda

Wednesday, November 3, 2010

My medical condition: Post Traumatic Syringomyelia (PTS) of the Thoracic spine

            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.



  • Broken to Grace ~ The Novel by Ronda Rae Franklin
    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.

  • 31 comments:

    1. Hi..I have been told by some that the content here in this blog is confusing due to it's medical terminology and simply the nature of this illness. It is a difficult thing to understand, and a difficult thing to fathom. Again, I welcome questions on here - in asking - you very well may be helping others understand better as well.
      And if you don't ask, I don't know what to make clear - or what anyone would like to more more about.
      Thank you

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      Replies
      1. Hi I have syringomyelia I was diagnosed about 7 yrs ago I use a wheelchair at work to get around and my drs are saying that my symptoms dont sound like syringomyelia. I have a very hard time walking for any length of time. I think my docs are trying to down play the disease. I learned from ur blog that u can have life threatening complications is that true? I have been in the Er alot lately still trying to figure this out

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      2. It has been confirmed I have acquired syringomyelia

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      3. It has been confirmed I have acquired syringomyelia

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    2. How does one test for the disorder? How do you know for certain whether or not you've got it?

      ReplyDelete
      Replies
      1. A simple MRI! Brain to sacrum with and without contrast is preferred. I suggest getting the imaging disk yourself because this is often ignored.

        www.wstfcure.org is a great website. The Founder and CEO is a registered nurse who has numerous terminal illnesses directly caused by Syringomyelia according to Duke University

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    3. Oops, I must have hit Enter before I was done.

      So I'm guessing that you've outlived the expected life span of somebody with the disease - and by quite a long margin. Bravo! That's great news for your family.

      My question is: let's say another 10, 20, 30 years go by and you're still healthy (and I hope you are), will you thank your doctors or God? If both, why both?

      ReplyDelete
    4. I just found this post Ronda, though I think I've seen you on ASAP??? Are you keeping up with posting/blogging somewhere? I am a PST also. One year in that I know, but contiued progressive. I would love to hear more about your current struggles/accomplishments and links to your book when available.

      ReplyDelete
    5. To "Anonymous" - because I have a few amongst thousands who harass me and my family - unless I know who you are I do not answer. Sorry. I hope you understand.

      Ms. Clarke - I don't know what ASAP is..? I don't post about my condition much. I have people write to me in private and ask questions - as in - people who either have Syringomyelia or PTS or who have loved ones who do. They simply write in hopes to answer unanswered questions. You are welcome to ask me on here if you have a question about something you are going through with this, or if you want to know how my neurologist and I deal with certain aspects of this. We've paved a good deal of unpaved roads, as I've survived this for so long now we've had the time to delve into new things, test them out, etc. Some work, some don't. One of my biggest pain reliefs comes from him administering 12-28 (28 this last round) Botox injections every three months around my spinal column and into my cranium.

      To "Anonymous" again - I will say this - everything lands on God for me. My neurologist would most likely tell you exactly what I will now ---- His job is merely to keep me as comfortable as possible, and the rest is up to God. I believe in miracles, and I believe it is solely by God's choice that I am on this earth still and will continue to take every day as it comes - and be thankful for it.

      ReplyDelete
    6. Rhonda, I also have Syringomyelia. My syrinx is only 2.5 mm wide, but it runs the entire length of my cervical and thorasic spine.They dont feel the need to operate anytime in the near future as my symptoms (I have over 25) are not serious, such as loss of bodily function, ability to walk etc. Dpends on where the syrinx feels like pressing against nerves in spinal collumn. In reading this page it kind of confused me. Syringomyelia is actually more common then you think. I belong to many support groups and have attended walks that are held around my area. www.ASAP.org/ is a website that is full of information,events,walks,updates etc.. Another is www.csfinfo.org/. There is also a hospital in Long Island, The Chiari Institute. Facebook has a couple sites that are great to share info. A confrence is in July in Washington DC I might attend and there are some walks coming up and a ball in Staten Island. Many of my friends have syrinxes much larger than mine andalso have Chiari as well. I have Chiari 0 (there is also 1,2 and 3), as my sinuses arent herniating out the base of my scull, blocking cerebrospinal fluid. I as many are ,are just watched yearly or so by either a neurologist or a neuro surgeon. I go to pain management 2x a week for lite message and minimul chropractic and trigger point injections once a week and take pain medication as needed. I also get Botox. Im due for another round next month. I didnt mean to ramble on as there is just soooo much info out there due to the large amount of people that have Syringo. Also, years back there was a thought of a early death the average of 47 yrs. now it is been found that a majority of people lead a full life. death now very rare and is usually from secondary conditions from the accident or complications from surgery. I have 2 pages one on ASAP and one in the Caroline Fenn's site www.Syringomyelia.CA and Syringomyelia Social Network. Im also going to be doing a study being run by The US National Institutes of Health in Bethesday,MD. They are still recruiting, I cant wait. Ok Im done. Hope I was helpful.

      ReplyDelete
    7. Wow, Susan - I'd really like to talk to you more. I will go and look up these sites - especially ASAP. It feels good to know this, as my doctor and I are now so many years into this neither of us look into anything any longer as it's never proved helpful past a certain stage or it's a tad depressing - and what help is in that? I know there are many more people with a syrinx - little ones here and there that are in areas that sometimes never affect them in any recognizable way. I also know that since I wrote the original note above - back in 2010 - that more research and more people have been found with PTS - but we had not heard of that many. Especially not in the number you describe. I stopped searching for a support group a few years ago. I have had 3 people who have seen this write to me from different areas of the country looking for hope, which they will find in my attitude towards this, because they can't find support of any kind and knowledge is so scarce. You must live in an area where this is obviously not the case. My neurologist practiced for many years on the east coast - but we are now on the west side of the country and live away from any large hospitals. And since everything is simply "what it is", and I get by day by day with pain management techniques (5 different medicines a day, and injections at home between visits when I need them), some scary times with cardiovascular issues that seem to fluctuate in frequency and intensity (right now, frequent is the word of the day), and...it's sounds like you know the drill - we stopped sending me to other doctors or surgeons to poke and prod at me the way we used to. The last big trip for this was to the University of Washington Medical Center to the head of neurosurgery, who after looking me over and studying my chart threw his copy of my chart in his tin garbage can (for added drama I suppose) and told me there wasn't a neurosurgeon in this county who would touch me surgically (and why) and in a rude tone, a sigh that told me we wasted his time (a two-day trip for me), and an awkward handshake, he said "good luck" and walked out the door. I sat there on the bed, in awe of this man's negative attitude, and was truly scared and cried for the first time about this. Every bit of hope I held onto, he stripped away in a matter of minutes. I've since built that hope and faith way up, and the longer I live through this, the stronger that gets.
      cont...

      ReplyDelete
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      1. Rhonda if you are not familiar with Beth Nguyen, RN and Founder & CEO of Worldwide Syringomyelia and Chiari Taskforce I really suggest checking out the site
        www.wstfcure.org

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    8. Cont...
      I'd like to know about/general location of where you are, and where your support groups are. I know a woman with a daughter who found me from this blog who's daughter had recently been diagnosed with PTS and she was in so much pain and was given no good news at all. She was so scared for her daughter. She tried starting a support group on FB. The last I know of, it failed - I believe her, me and one or two of her friends jumped on for support but they had no personal knowledge. It's "flop" didn't surprise me - I've read study after study that ended too early and I have yet to find any kind of support group on line or in person. I thought about joining a group for MS or other related conditions, but because I look so physically well (something I strive for internally and externally) even when I'm hurting (which is every minute of every day) - I know I would feel uncomfortable and out of place. I also don't want to be around anyone with a "sorry for themselves attitude". I don't live that way. I don't like talking about it here amongst those I live with everyday. I don't want it to define me. What I want to define me is strength of character and faith no matter what hits me on any given day.
      Your letter has been most helpful and encouraging. I'm tired of the few people who feel strangely angry that I'm still living and I hope they read your note and this one. As a larger organization, I know the USPS is one of those frustrated "people", as between my retirement that they forced me into "to live out the rest of my days enjoying my children", and the $50,000 - $100,000 (give or take) a year they pay in doctor bills for all the injections, medicine, MRI's, spinal taps/lumbar punctures, etc....they're not liking my longevity either. And as the condition is listed as terminal under insurance and insurance underwriters, I'm not allowed to work in a regular paying job without risking losing all my benefits and my life insurance. (Remembering, I worked for the govt. when the first partial paralysis hit - and that is the career I retired from. The govt.'s involvement in my life/my medical life and care, hasn't made this any easier.)
      So, to end this, yes you were helpful.

      Ronda

      ReplyDelete
    9. Back to "Annonymous" from May 22nd, 2011 -

      I just realized I never answered your question "How does one test for the disorder? How do you know for certain whether or not you've got it?"

      The test(s) are simple - MRI's of the cervical, thoracic, and lumbar spinal cord w/contrast and without. This will show whether or not there is a syrinx in a persons spinal cord or not - and if there is where. The where is of ultimate importance. The thoracic spine is the most critical and problematic location and the one location where surgery is not an option.

      I hope that helps.

      Ronda Franklin

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      1. Hi Ronda,
        I have Syringomyelia of the Thoracic spine, t-4 to t-9. Diagnose
        2003, second opinion 2004 along with surgery. Catheter placed.
        I was fortunate to have my father in-law call a colleague who happened to be chief of staff (Neurosurgery) &specializes in syringomyelia & Chari malformation. Very successful surgery. I'm not trying to undermine you, however it is very possible to have surgery in the Thoracic area. The key is researching, find the Neurosurgery that specializes in surgery of thoracic area.
        I'm confused on pts and its true meaning. Because I have mine in thoracic area? Which controls the respiratory? Does this make my life expectancy is shorter? Could you explain pts to me thank you and what a fabulous site. I can hardly wait to read your book. Thank you Barb

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    10. I was recently diagnosed with this horrible condition. The lack of knowledge about the debilitating nature of this condition is truly astounding. I feel like my body is being destroyed and the pain is unreal. I appreciate your attitude and outlook as it is very difficult to remain positive.

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      1. I am so tired of the pain of post T. S .I'm ready to give up but to weak to do so..

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      2. Hello Anonymous ~
        People write to me at my personal email for further information. If you would like to do so I would be happy to communicate with you there. There IS hope and there IS help for the pain. Many doctors are simply not aware or knowledgeable of what they can do to help. Today marks exactly 13 years for me. And it is a celebration - even as I sit here with my knees giving way today...I celebrate.
        I will give an update of the past 13 years in a new posting soon. In the meantime - talk to me or ask me questions here or you can write to me privately at RondaRae@BrokenToGraceMinistries.com. (I never write myself, I think that is the correct address).

        Don't give up. You are not alone.

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      3. Can you send me your support information website to me? I am going to a new neurosurgeon in the morning for my syringomyelia I was diagnosed in 2008 after a hit and run. I'm currently for the past year and the last few months experiencing numbness in my right arm/ severe weakness in my legs and arms and especially with my right hand. I have tremors now that affect my right hand and my left is completely normal, but I constantly have been waking up with pain that lasts until I go to sleep. In the past month my neck had started to stiffen up and it's difficult to get up out of bed and go to work without having severe weakness in my lower back and neck. I can't feel hot and cold and longer in my right hand, my toes and fingers turn blue sporadicall. I have just been diagnosed with pulmonary valve regurgitation, I have had past heart related issues since 2005 my first child and heart surgery shortly after. I have funnel chest, it's mild; I have asthma flare ups here and there and what made me change my healthcare and switch to civilian doctors instead of military is the fact that for the past week I've been choking a lot when I drink any liquid. I'm having difficulty swallowing. It's scares me. I cough and cough like my lungs are on fire. I also have been having my blood vessels in my right arm they get black knots like bruises almost and i guess I am bleeding under the skin. My arm first swells largely and then starts burning and then instant blue skin around the blood vessel or vein in my arm and a burst of extreme pain and it gets hot and I have just been soaking my arm I. The coldest of water, I then elevate it. I'm not sure exactly what is happening there as I will be speaking to a specialist tomorrow about everything. I have waited long enough and I just figured I'd wait til it got too much for me to handle, pain wise and mobility. I'm about to get fired from work because I can't keep up, it's a very very physical job and I feel like I'm going to die when I get off work. My back feels like a 2x4 and my whole body is pulsating in pain. I can't deal with the sharp pains I get in my neck and back and the electrical sensations that run down my legs all day long. My hands and ankles are beginning to swell two weeks so far of that new symptom. I am fearful of what they are going to say tomorrow. I don't want back surgery, but I can't live like this anymore. I have a 9 1/2 year old and a 3 1/2 year old, I'm 30 years old, single mother, and I just don't want to live like this anymore. I need help and I hope and pray the doctors will give me some. I want them to fix what is wrong.
        You have syringomyelia, do you ever experience memory problems? I feel like I'm going crazy, I am having problems recalling events and being extremely forgetful, like if I locked the doors, because I mentally cannot remember completing the action, I can't even remember what I had for dinner two nights ago. The days just keep getting longer and longer and they all smash together. I lose my sense of time and dates. Thank god for iPhones with calendars or I wouldn't know what day it is.
        I have quite a few of other major symptoms but I don't feel comfortable discussing those issues on here. They are bad and came out of nowhere. So that's another hurdle all on its own.
        I just feel like I'm trying to stay afloat and just make it through to another day, for my kids and boyfriend and family. Thank you for any help you can send my way.

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    11. Hi. I also have PTS with the syrinx extending C4 to T12 and growing. Throw in a couple of spine injuries and some new side effects with my army of medical specialists now reaching 10. I live in a small country and it was the ASAP community who kept me grounded and gave such fantastic support when I was first diagnosed. I think it is so important to have people who share the challenges we face and truly understand what we go through on a daily basis. I wish you and your family all the best. Sarah B

      ReplyDelete
    12. Hello,
      I stumbled upon your site and wanted to let you know that I was diagnosed 15 years ago and had had back problems resulting in two surgeries before that so I don't know exactly when I got the syrinx or actually HOW I got it. All I know is that I was waking up frokm sleep with "dead" arms and thought it was due to a heart condition. Thankfully after seeing several doctors and misdiagnosis a doctor took an MRI with contrast and was able to discover the cyst in my cervical chord.
      Within one week I was in surgery with a neurosurgeon who placed a shunt to drain the syrinx. 15 years later and I am doing fine. We live in Northern California in the San Francisco bay area. Dr. Peter Weber performed the surgery. I am now a patient at Stanford Hospital and they are monitoring the shunt.
      If you have any questions please email Coachezwife@gmail.com
      Good Luck
      Jeriann
      by the way I am 56 years old!

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      1. Hello Jeriann,
        I enjoy hearing other's stories - so thank you for sharing with me (us) here. I am so very happy for you and wish you continued success. I would imagine your syrinx was a result of trauma from the surgeries - but that's just my opinion based on what I've learned in the past 12-13 years. Considering where a syrinx can "pop up" (or pop open would be more apropos) - you are lucky in that regard.

        Whenever someone asks about the surgery you had - I tell them that a syrinx is like real estate...Location, location, location! Cervical and Lumbar syrinx's are most often either non-threatening, cause little to no pain, and side effects can be limited - if there are any at all. You were effected in your arms because of the location - and that was probably a good thing for you since it led to finding the syrinx which resulted in a helpful surgery. The thoracic spine syrinx, however, is a different animal all together. Surgery is not an option, symptoms are notably more severe -- and so length and quality of life are decreased to differing degrees (depending on the patient). In 2001 my neurologist, even though his studies and knowledge base told him surgery - for me - what not an option, wanted to be completely sure and sent me to the head of neurosurgery at the University of Washington's Medical Center. When I arrived for a two day stay, admittedly with hopes up a bit, I was abruptly told that no neurosurgeon in the world, with any standing as a decent doctor, would not touch me surgically. Why? Doing so in that part of the spinal cord would at minimum leave me to never again have any feeling my stomach or chest, and at worst - death during surgery. The medium result is complete paralysis simply by cutting into the area. It is a loose-loose scenario, and the least of the results (no feeling in the chest & stomach w/no help for current symptoms and no promise of slowing the process) was a rare occurrence over the other outcomes when surgeries used to be attempted. Death during surgery was the prominent outcome.

        (Continued...)

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      2. (Continuation of above...)

        My (most amazing) neurologist and I continue to keep ourselves apprised of any furthering of knowledge on cases of thoracic syringomyelia. No progress in the neurological or neurosurgery world in this matter have occurred.

        However, my neurologist and I have experimented on our own. One very helpful addition to my therapy is Botox injections every 12 weeks up and down the spine on each side and into the cranium. My last round of injections - 38 of them. It's a painful process - I honestly don't understand why people choose to use this poison in their faces. The Botox serves to paralyze the muscle groups that cause me great pain via severe spasms ( coined "spinal seizures") that not only can constrict my lungs and make it hard to breath but even lead to my bouts of temporary paralysis that is so painful when it happens I am hospitalized and put on a PICC line so the strong medications don't burn my veins. It's no fun - let me tell you. But, the Botox has drastically decreased these occurrences. If it didn't, we wouldn't continue with the therapy.

        Yes, Botox it's a poison (botulism in a bottle). And when you consider all of the steroid (solumedrol) infusions and oral prednisone I've been given - the longterm effects are very damaging to a person organs and unfortunately have already caused me some severe harm. My liver, right kidney and gallbladder are all effected. My gallbladder was removed in an emergency surgery last fall - and in so doing they hoped to stop the infections and edema in my liver and right kidney by clamping them off after removal of the gallbladder.

        Increasing pre-syncope and syncope episodes started just over 2 years ago - as I have stated before. They have increased by leaps and bounds over the past 8 months. I don't drive much anymore - obviously. =)

        To help counteract all of these poisons to some degree - I have stepped up my already highly healthy habits and now eat an organic, raw, and freshly juiced diet in high doses. Something I have extensively researched and I work with the Gerson Institute in San Diego for assistance in this therapy and lifestyle. This has made for a notable change in my body already that has truly amazed me. It is very time consumptive, but beyond worth it thus far.

        I hope some of this information is helpful to other readers who have written here or come to this page at a later date. I apologize for my lack of updating over the past year or so. The syncope makes concentration difficult - among other things.

        God bless,
        Ronda

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      3. Rhonda,
        Garland Rockswold MD, NEUROSURGERY
        HENNEPIN COUNTY MEDICAL CENTER
        MINNEAPOlis,MN
        OR
        UNIVERSITY OF MINNESOTA
        I would trust my life with him,, his team performed surgery
        On thoracic. Also
        Daniel Lieberman, 'S, NEUROSURGERY
        PHOENIX, ARIZONA
        BOTH Fabulous, highly competent surgeons.

        Delete
    13. I suffer from Cervical Syringomyelia.....i know what it feels like....but u r in a worst position than me

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    14. Syringomyelia Support - ASAP, American Syringomyelia & Chiari Alliance Project (ASAP) are 2 of the many Facebook sites. 26th Annual ASAP Chiari & Syringomyelia Medical Conference is a yearly confrence this year located in NJ. There are many thousands of people on these sites from all over the world. There are walk as well yearly around the country...This web site is full of info: http://asap.org/index.php/disorders/get-free-info/

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      Replies
      1. Thank you Susan, this helps me tremendously. I have bee reading people's stories and they sound just how I feel and what I have been experiencing. It doesn't make me feel so isolated and awful, even though I feel like my body is going to give out at any moment. Thank you
        This helps

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    15. Hi my name is cheryl I have syringomyelia in my C6 level of my spine, I feel harable everyday I've had this for 20 years I've been going down hill ever since I had my shunt put in about five years ago I'm 51 years old now I feel young still but my body does not I cry all the time cause I can't keep up with my friend I totally understand what your going thru I'm on ssd I'm broke all the time I have a 15 year old son still at home it's sad I don't feel good enough to do things with him any more there should be a support group, I'm glad someone finally said something about this illness cause I did not know what's was going on with me or if it was deadly or what people don't tell you nothing so thank you thank you for telling me stuff to look for sincerely cheryl phillycheryl@yahoo

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    16. Thank yu so much for posting this information. I was in a fairly minor (head on car accident) March 2002. As I watched everything unfold and knew I ws going to be hit, I braced myself holding on tight to the steering wheel and waited for impact. Well, I have been struggling with the aftermath ever since. I was diagnosed with fibromyalgia, IBS, PTSD, among other things. I have recently had a full MRI of my head and spine and I have been referred to a neurologist as I have "mid thoracic syringomyelia " from T6-7 to mid T9 4mm, I also have a couple of smaller cysts in my C5-6 and C6-7. I have not received an appointment with my neurologist yet, but after everything I have read online, I am seeing my chiropractic this morning. I want to thank you again for you story and hope you are doing OK.

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    17. Thank yu so much for posting this information. I was in a fairly minor (head on car accident) March 2002. As I watched everything unfold and knew I ws going to be hit, I braced myself holding on tight to the steering wheel and waited for impact. Well, I have been struggling with the aftermath ever since. I was diagnosed with fibromyalgia, IBS, PTSD, among other things. I have recently had a full MRI of my head and spine and I have been referred to a neurologist as I have "mid thoracic syringomyelia " from T6-7 to mid T9 4mm, I also have a couple of smaller cysts in my C5-6 and C6-7. I have not received an appointment with my neurologist yet, but after everything I have read online, I am seeing my chiropractic this morning. I want to thank you again for you story and hope you are doing OK.

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    18. post work injury I hate the spasms & the disorientation (confusion) T4--to T12

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