Edited on October 29th to say:
Thank you everyone for your kindness and encouragement...they mean more to me than I am able to verbalize. I am able to borrow some of your faith and hope at a time when I need it the most. I wanted to tell you that Ryan has an appointment tomorrow with the best Neurologist in Spokane, so we should know more soon. The neuro was able to pull up Ryan's MRI and said that the situation was bad, but not yet to the point where it was unfixable.
If you would continue to keep him in your prayers, I would be eternally grateful.
Jewelz
******************************************************************************************************************
Original blog:
As a parent all you want to do is to keep your child safe, well and happy...and it appears that my worst nightmare has become a reality.
********************************************************************
*********************************************************************
Ryan had a long weekend this weekend, he blacked out Friday night (Saturday morning) and had to be taken to the Emergency room and had migraines most of the weekend as well. The headaches have gotten so bad that they completely dehabilitate him when they hit...even the slightest sound, light or movement is unbearable for him. He had gotten another headache at work yesterday, almost as soon as he stepped out on to the call floor and tried to call the doctor's office to let them know what had been going on with him since Friday...the nurse got on the line right away, and before he could say anything about his headache she said "Can you be here at 2:40pm?" He asked her if she could tell him anything about what was wrong, and she just repeated the statement that they needed to see him in the office right away.
Ryan called me about about 4:00pm my time, or about 30 minutes past when his appointment was scheduled for. The doctor told him that he has an extremely rare condition called a Chiari malformation; it is a malformation of his brain and skull that causes actual brain tissue to be pushed down into his spinal canal. As it would turn out, the radiologist had called on Friday as soon as she read the MRI because it showed that his tissue was a full six inches past where it should be and she felt that the severity and emergent nature of the results warranted an immediate response but his doctor said it was too late in the day Friday to get him in. The condition is so rare that his doctor didn't really know anything about it as far as treatment options or prognosis are concerned...he told Ryan that they spent maybe two minutes covering Chiari malformations in medical school; he was way out of his league with them and is trying to get Ryan into see a neurologist ASAP. The doctor did say that the headaches Ryan has been having are the most common symptom of Chiari, and I was happy to hear that the doctor finally gave him Hydrocodone and Neurontin to take for them.
As soon as I got done talking to Ryan, I googled Chiari right away and found the Mayo Clinic web site's information on the topic. There are several types or classifications of Chiari, they are catagorized based upon the way in which the skull is malformed and the severity of your symptoms. Every single symptom Ryan has been having over the last few months was included...the headaches, dizziness, loss of vision or other vision disturbances, unsteady gait, loss of coordination with his fine motor skills and even the black-out episode from Friday was listed! The website said that it is a congenital disease that most people are just born with, that often Chiari does not manifest itself with symptoms until adulthood. It also said that there are some people who are able to live a "normal" life with just monitoring and medications, but that with more severe cases the most likely treatment is surgical intervention. I guess we will know more as soon as he can get in to see the Neurologist, but the one thing that we do know is that once it becomes symptomatic that Chiari will continue to progress if it is left untreated.
Flashmo and I are just stunned, and deeply saddened to hear this news. He is going to try to see what he can do to rearrange his schedule in Van Nyes so that he can get home and relieve me with the dogs and house stuff, and I will be making a trip to Spokane as soon as I can. Our daughter said she could stay with the dogs too if need be, and my boss was really awesome about it yesterday when I told her that I'd would be needing some time off soon to go. She was just like..."yeah, take whatever you need, no worries" about it. I wished so badly last night that Flashmo was home to hold me...I just sobbed and sobbed and sobbed uncontrollably when it finally hit me last night. I'd been in a state of shock for awhile after first receiving the news, almost numb. I was still at work, and just went on auto-pilot until I could get home and once I did that's when I fell apart. I just couldn't blog about it last night, I'm sorry. I know that Flashmo posted a blog a little later in the evening, with some incredibly powerful images of an amazing kid as he grew up...I couldn't sleep last night and after awhile of trying I got backup and logged on for awhile, when I saw Flashmo's blog I just lost it all over again. I ended up crying myself to sleep eventually and I'm actually grateful that I did because I'm sure I would have been up for most of the night if I hadn't.
The worst part of this for me is feeling so useless right now...Ryan is so far away and he was just unconsolable last night. I don't blame him; this is a lot for a 17 year old kid to deal with especially considering he already has type 1 diabetes. I was so fuckin' pissed when I found out that my mother-in-law felt the need to tell Ryan about a family friend who had Chiari that has had nine surgeries already and still feels like hell, she's never been able to hold a job since she started having symptoms, lost her kids because she couldn't care for them etc. and he was just a mess after he talked to her. If she was here, I'd punch her in the throat for being so stupid! I was able to calm him down after a little while...and was able to get him to see that just because Angie has those problems with her Chiari doesn't necessarily mean that his fate will be the same. He felt better knowing that his father and I were working on figuring out a way for me to get there to be with him, too.
Thank you everyone for your prayers, your positive thoughts, interwebz hugs and all of the other support and love you've given to our son and to us...I just can't say thank you enough!
Much loves to you all~
Julie
Thank you everyone for your kindness and encouragement...they mean more to me than I am able to verbalize. I am able to borrow some of your faith and hope at a time when I need it the most. I wanted to tell you that Ryan has an appointment tomorrow with the best Neurologist in Spokane, so we should know more soon. The neuro was able to pull up Ryan's MRI and said that the situation was bad, but not yet to the point where it was unfixable.
If you would continue to keep him in your prayers, I would be eternally grateful.
Jewelz
******************************************************************************************************************
Original blog:
As a parent all you want to do is to keep your child safe, well and happy...and it appears that my worst nightmare has become a reality.
********************************************************************
*********************************************************************
Ryan had a long weekend this weekend, he blacked out Friday night (Saturday morning) and had to be taken to the Emergency room and had migraines most of the weekend as well. The headaches have gotten so bad that they completely dehabilitate him when they hit...even the slightest sound, light or movement is unbearable for him. He had gotten another headache at work yesterday, almost as soon as he stepped out on to the call floor and tried to call the doctor's office to let them know what had been going on with him since Friday...the nurse got on the line right away, and before he could say anything about his headache she said "Can you be here at 2:40pm?" He asked her if she could tell him anything about what was wrong, and she just repeated the statement that they needed to see him in the office right away.
Ryan called me about about 4:00pm my time, or about 30 minutes past when his appointment was scheduled for. The doctor told him that he has an extremely rare condition called a Chiari malformation; it is a malformation of his brain and skull that causes actual brain tissue to be pushed down into his spinal canal. As it would turn out, the radiologist had called on Friday as soon as she read the MRI because it showed that his tissue was a full six inches past where it should be and she felt that the severity and emergent nature of the results warranted an immediate response but his doctor said it was too late in the day Friday to get him in. The condition is so rare that his doctor didn't really know anything about it as far as treatment options or prognosis are concerned...he told Ryan that they spent maybe two minutes covering Chiari malformations in medical school; he was way out of his league with them and is trying to get Ryan into see a neurologist ASAP. The doctor did say that the headaches Ryan has been having are the most common symptom of Chiari, and I was happy to hear that the doctor finally gave him Hydrocodone and Neurontin to take for them.
As soon as I got done talking to Ryan, I googled Chiari right away and found the Mayo Clinic web site's information on the topic. There are several types or classifications of Chiari, they are catagorized based upon the way in which the skull is malformed and the severity of your symptoms. Every single symptom Ryan has been having over the last few months was included...the headaches, dizziness, loss of vision or other vision disturbances, unsteady gait, loss of coordination with his fine motor skills and even the black-out episode from Friday was listed! The website said that it is a congenital disease that most people are just born with, that often Chiari does not manifest itself with symptoms until adulthood. It also said that there are some people who are able to live a "normal" life with just monitoring and medications, but that with more severe cases the most likely treatment is surgical intervention. I guess we will know more as soon as he can get in to see the Neurologist, but the one thing that we do know is that once it becomes symptomatic that Chiari will continue to progress if it is left untreated.
Flashmo and I are just stunned, and deeply saddened to hear this news. He is going to try to see what he can do to rearrange his schedule in Van Nyes so that he can get home and relieve me with the dogs and house stuff, and I will be making a trip to Spokane as soon as I can. Our daughter said she could stay with the dogs too if need be, and my boss was really awesome about it yesterday when I told her that I'd would be needing some time off soon to go. She was just like..."yeah, take whatever you need, no worries" about it. I wished so badly last night that Flashmo was home to hold me...I just sobbed and sobbed and sobbed uncontrollably when it finally hit me last night. I'd been in a state of shock for awhile after first receiving the news, almost numb. I was still at work, and just went on auto-pilot until I could get home and once I did that's when I fell apart. I just couldn't blog about it last night, I'm sorry. I know that Flashmo posted a blog a little later in the evening, with some incredibly powerful images of an amazing kid as he grew up...I couldn't sleep last night and after awhile of trying I got backup and logged on for awhile, when I saw Flashmo's blog I just lost it all over again. I ended up crying myself to sleep eventually and I'm actually grateful that I did because I'm sure I would have been up for most of the night if I hadn't.
The worst part of this for me is feeling so useless right now...Ryan is so far away and he was just unconsolable last night. I don't blame him; this is a lot for a 17 year old kid to deal with especially considering he already has type 1 diabetes. I was so fuckin' pissed when I found out that my mother-in-law felt the need to tell Ryan about a family friend who had Chiari that has had nine surgeries already and still feels like hell, she's never been able to hold a job since she started having symptoms, lost her kids because she couldn't care for them etc. and he was just a mess after he talked to her. If she was here, I'd punch her in the throat for being so stupid! I was able to calm him down after a little while...and was able to get him to see that just because Angie has those problems with her Chiari doesn't necessarily mean that his fate will be the same. He felt better knowing that his father and I were working on figuring out a way for me to get there to be with him, too.
Thank you everyone for your prayers, your positive thoughts, interwebz hugs and all of the other support and love you've given to our son and to us...I just can't say thank you enough!
Much loves to you all~
Julie
VIEW 25 of 51 COMMENTS
Good luck today, to you and Ryan.