Hi everyone, The last time I posted on this site was July of 2013 . My son Ryan,then 19 years old had just been diagnosed with Chiari Malformation and Hydrocephalus. He had just had a vp shunt placed and decompression surgery. Sadly he passed away on August 11th 2013 just three months after being diagnosed.
Ryan’s death was caused by an unskilled neurosurgeon. Not only did the surgey fail it also left him with severe brain damage and instability. His brain stem collapsed and crushed his spinal column leaving him brain dead.
I am left still fighting this battle for my son. A battle I will continue to fight so no one else has to bury thier child because of ruthless,uncaring,incompentent doctors. As my son lay dying with his brain stem being crushed the doctor stood by his bed and announced that there was NOTHING wrong with Ryan…that he was just depressed and needed a psychiatrist. And that they would no longer treat him from neurological standpoint. At this point Ryan could not walk more than a few feet without passing out or going into a seizure. Two weeks later his body could take no more and he was gone.
You are probably wondering if we sued. The answer is yes. The lawsuit is ongoing as the wheels of justice are slow. Anyway, I had forgotten that I posted to this group when this nightmare began. I look forward to reading everyone’s posts. I plan on keeping you all updated on the progress of the lawsuit .I am fighting for all Chiarians everywhere.
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I’m so so sorry for your loss.
Keeping you in my prayers.
zodeli,
Thank you for sharing Ryan's story here. I am sure this could not have been easy for you. My thoughts and prayers are with you and your family today. I was both saddened and angered while reading. I could not imagine what your family must be going through and dealing with. Please let me know if there is any way I can help you in this fight!
Zodeli please know that we are with you. Keep the updates coming.
Zodeli,
My heart is grieving right there with you. I have 3 children. I will be praying for you.
I am sorry this happened to you. No parent should outlive their children. I wish I could reach through this board and give you a shoulder to let you know that we mothers here, are hurting right along with you.
I just read the guidelines for this site, is saying" I will be praying for you " considered be breaking the guideline? I just want to know so I will not be doing anything wrong.
Hi Anne, great question! Sayings like "praying for you" are perfectly fine! Thanks for checking. We just want to stay away from overly divisive religious posts. Asking for prayers or saying "I am praying for you" are fine. Hugs.
Wow I am so sorry. I lost my son at 13 due to leukemia so totally different. I’m always here if you need to vent!
Hi, zodeli. I wanted to offer my condolences. I am so sorry for the loss of your son.
Rebecca, no matter how they passed it still hurts to the core of our being. I am sorry for both of you ladies. You both need our prayers.
Dear zodeli,
This is the saddest of news. As a mother, I cannot even imagine this happening, but I am glad that you found the strength to stand up about this.
Sending my best to you and yours,
SK
Thoughts to you, wishing you strength to continue with the fight for justice xx
Sorry for your loss
As a mother myself, I cannot begin to imagine how you must have felt, knowing that your precious son was suffering and having his doctors do nothing! I applaud you for having the strength to stand up and fight for justice! I wish you the best of luck, and will be praying for you!
xoxo
I can't tell you how sorry I am for your loss. I would also like to thank you for fighting for all of us Chiarians and spreading the awareness! Doctors down-play our problems or think we're faking, or havent even heard of chiari which needs to change!! Thank you for fighting with us!!
Zona and Rebecca,
I am so heartfully sorry for your loss!! Many prayers are coming your way for you and yours!!
Zona,
Thank you for fighting the good fight for all of us!! I pray you win!!
Lenni
Thank you for asking about the sight rules. I, too, was thinking about this, as I did not want to break any rules or offend. Thank you for, Anne. And, thank you for clarifying!!
AG82 said:
I just read the guidelines for this site, is saying" I will be praying for you " considered be breaking the guideline? I just want to know so I will not be doing anything wrong.
This is a heartbreaking story. I just want to thank you for turning your grief into a charge to make a difference for others.
Before I was diagnosed, I spent five years being told I was depressed. When they finally discovered it, my primary doctor apologized to me.
I learned that day that me wanting people’s approval sometimes stunted my voice.
Today, I want you to know that we are all very lucky to have you fighting for us.
Thank you!
Peace, Bri
No mother should bury their children....having 2 kids of my own your post makes me deeply sad, mad and angry. It is great you found the strength to fight and think of a change you could make for others. Your are a wonderful Mom. I hope you have a good aggressive attorney and decision will be for you. From my experience many neurologists still treat Chiari patients like a joke and many neurosurgeons (without experience with Chiari surgeries just would not know what to do if the have to do surgery). Disgusting. I think, every neurosurgeon need serious training regarding our condition...there are more and more people diagnosed with it. Yes, it is good, if we have time to plan surgery with Chiari centers and means to travel across the country, but if surgery is emergency (like we slip and fall or cough wrong or get in the accident or symptoms get rapidly worse for other reason) and we get to community hospital with average neurosurgeon who never seen Chiari patient before outcome won't be great. Just my thoughts....Keep on fight, Mom. I opened pictures you attached. Such a handsome boy. Your loss is beyond belief. Thanks for sharing.
I am so sorry for your loss. I don't even have words but we are here for you if you ever need to talk or vent or anything. I am sure anyone on this site would be happy to talk with you. Please let me know if you need that.