Hello everyone! This is my first post here. I just have a few questions… My daughter was diagnosed with type 1 at 18 months. She has a very small sphyrinx and it has not changed since the initial MRI over 4 years ago. Last year, her MRI revealed that she had some fluid that had not been seen before. At her last MRI (Last week) the NS said nothing has changed, schedule another MRI in 12 months. Here is my concern… my daughter has to be completely sedated for the MRI (She cant be still) and has had an MRI every year, one year she actually had 2 because her mom is borderline MBP and invents symptoms. I had my daughter all summer and she had zero symptoms. Is a yearly MRI too much? Is the yearly sedation something to be concerned about? TIA…
She should be just fine getting annual mri’s. If it was my child with a syrinx, you bet Im going to monitor it!! I know people with serious syrinx’ and neurological damage or that developed complications through the years bc they weren’t detected early on. I will tell you that perhaps you need to work together and listen to each others concerns, remember too, mom’s have an instinct that sometimes dad’s dont and it doesnt make your opinion any less important. Just share your concerns, speak to doctors together. If your child has a syrinx it is important to monitor it. Go to csfinfo.org for more info.
God bless and I wish you both peace.
Have they checked the flow (cine mri) of her cerebral spinal fluid to determine why she has a syrinx and whether or not her csf is being blocked?
Take care.
This mom doesnt have any instict other than to keep "Willing" our daghter to be sick. She is a perfectly normal 5 year old girl. She runs, plays, laughs, jumps, tumbles, and even does karate and horseback riding. If you understand MBP you can see whats going on. The symptoms are only reported by her. Before anyone jumps to any conclusions, I am a very involved dad. My daughter spends A LOT of one on one time with me. If she was in pain, or for that matter, suffering any Chiari symptoms, she would have told me.
As far as the flow test? I dont think that has been done. MRI's to my knowledge is all they keep doing. Correct me if I am wrong, but Chiari type 1 isnt something that is acute? Its a gradual progression of symptoms that eventually becomes so severe that the patient can no longer tolerate the pain and such? Again, correct me if I am wrong, but I have not read or heard of anyone "Waking up paralyzed" due to Chiari type 1?
Well, I appreciate the posts above. What I got from them is this.
When my daughter was diagnosed, we were not expecting anything of this magnitude. Nothing even close. My (Now ex) wife was unemotional. I however lost all composure. I excused myself from the room, and proceeded to cry my eyes out, literally cried myself out of tears. I made a pact with god that if he needed to take someone from this earth, I would willingly volunteer my own life to make her well. I asked for a sign. In my prayer I asked that if he needed me to walk out in front of the next bus, all I needed was a sign. I would gladly give up my life to make my daughter well. No sign ever came, so I assume that there is a purpose for me still being here. That said, I'm not afraid to tell anyone that my daughter has an illness. It's not important the details, just that she has something that prohibits her from having blows or bumps to her head and neck. On the other hand, my ex ENJOYS the attention that she gets by having a "Special needs" child (as she likes to call her) and tells anyone that is willing to listen. Its not a matter of shame or embarrassment, its a matter of being positive, and allowing our daughter to live a normal life. As long as she isnt having symptoms, I dont want other people and children tiptoeing around her like she is a freak. Am I alone in trying to stay positive?
Thank you abby. Its only painful when I think about it, which is most of the time. On one hand, I want my daughter to be protected, and on the other, I want her to be able to do whatever she wants. Its such a twisted mass of feelings sometimes. You bringing it up didnt cause any pain. I truly appreciate input from anyone that can help me to understand what my child is living with now, and perhaps what she may encounter in the future. Its sometimes hard to stay focused on her being sick when she always seems, feels, and acts normal.
Abby said:
I am truly sorry. My husband is much like you, he wants to fix me and can't, so I fully understand where your coming from. Men are fixers, providers, daddies and husbands, so that is a normal response. We have children, 2 daughters, so far they only have the hypermobility traits but not diagnosed. Do we worry they may have what I have? Every day of my life is worried about if I passed it on to them. I wish I had an answer for you, why does you child have to endure such a thing as chiari and what is her future? The only advice I can give you is love her, be there for her, and learn all you can about her condition so you can be her best advocate for her best treatment and options. None of us look like there is anything wrong physically but we suffer with symptoms only another chiarian understands.
It is never easy when we see our children suffer and live with a condition like Chiari. Just know you have friends on this site who are there right beside you, knowing what your dealing with. Your not alone. This group of wonderful folks have been my lifeline since I joined. They are the most casing and compassionate group of folks you will ever encounter.
How old is your daughter and do you feel she is getting proper treatment from her doctors?
Glad your here with us and praying for you both.
My daughter will be 6 this month. I believe she has the best NS that money can provide. He is world renowned for his work with children. As I stated early in this topic, one of my concerns right now is the frequent MRI's that require total sedation for her. That can't be healthy to be completely sedated that often. It's such a delicate balance... the desire to know that her chiari isnt getting worse, and the pain that she has to endure to be sedated (IV) and such. I have to wonder if my ex would stop inventing symptoms, if the NS would let her go maybe 2 years on her MRI. I know he knows best, but I also know that he is sick and tired (As I am) of hearing how sick my child is when she is at her moms, and then when he point blank asks me "What symptoms have you witnessed?" and I have nothing to offer. I observe very dilligently. My new wife has been in her presence for days at a time.... nothing. No "My head hurts, neck hurts, blurry vision, off balance, numbness or tingling, nothing" Its so incredibly frustrating!
I guess the hardest part to cope with, is that Mom is a drama queen, and if she asks our daughter “Do you have a headache?” the answer is usually yes. If I or my wife aske her “Do you feel ok, does anything hurt?” the answer is almost always no. So its hard to be sure just what the situation really is. I’ve had serious talks with my little girl, and told her, if it hurts, you gotta say so, but if it doesn’t, theres no harm in saying “No, I feel fine” With a total lack of co-parenting in my situation where my ex never tells the truth, and anything I say “Can and will be used against me in a court of law” It makes a difficult situation even worse. I’ve begged her to work with me for the best interest of our child, but what starts as a pleading from me, almost always ends up in a screaming fit from her. Thank you all for your responses. I’m looking forward to learning all I can for my daughter’s sake…