What it is like having a Child with Chiari and Syringomyelia

General Parents and Caretakers of Children with Chiari
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Getting involved into a great support system is the best thing you can do for you and your child. I wanted to share this with you parents.

Note:The opinions expressed below are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Anyone with a medical problem is strongly encouraged to seek professional medical care.

November, 2012 -

My 7 year old daughter was diagnosed with Syringomyelia, Chiari I and Scoliosis last February. She has since had decompression surgery but recently had an unexpected regression that the doctor's can't explain. The articles on this website are filled with great educational details revealed by brave soul baring stories retold in an effort to help a helpless community. I am humbled and impressed by the depth of knowledge and understanding parents seek to help their child.

However, tonight I would like to share another perspective.

It occurred to me driving home from our Orthopedic and Neurosurgery appointment last night that in reading all the advice that people give you when you have a child diagnosed with a chronic illness they never tell you what really happens to you as the parent.

It's isolating. You realize that you can't talk to the same people you used to. That you will avoid people that are well intentioned but tell you about the famous doctor that can cure a rare disease from reading a palm. Wouldn't that be great if it was just that simple.

Your appetite changes. I can't remember the last time I ate a meal I enjoyed. Your worry for your child resides in the pit of your stomach and overtakes your need to have that great steak or a glass of wine consistently.

Your attention span is minimized. For the longest time after my daughter was diagnosed I could not read, watch television or a movie. I simply could not focus on anything that wasn't about her or making her well. It's like your heart turns into a human stress ball- some new anxiety appears and squeezes tight and your concentration evaporates.

You become temporarily inarticulate. As you tell your story over and over, you realize it is utterly draining. You leave out key details because you have already fixated on new details in the hopes that they might unlock the never-ending mystery of the true origin of Chiari and Syringomyelia. You constantly weigh your words in conversation because you do not want to appear negative or worse, be perceived as a martyr. Why would you exaggerate your child's condition when you are praying someday you can brag about her miraculous recovery?

You become irrational about the little injustices. After eight hours holding my daughter's hand and navigating her and her doll's baby stroller through the city streets and four appointments later-I never once lost my cool...until I reached her specialists office. There they gave her a paper gown for an adult that was too big and made her cold and uncomfortable. This is the demarcating line where my rational behavior ends. I get mad and tearful. It didn't make sense why a pediatric office treating sick children does not make every effort to make them comfortable. It feels cruel. A moment of comfort and warmth during a bad day is the type of thing we want and should expect to count on.

There is also joy. Yes, joy. As other distractions fade away and you lose touch with the people that are not so significant after all, avoid Facebook and the blackberry, and stop tuning into your must see tv; you realize no matter how painful- you are focused on the right thing. Your child. The child who you brought into the world, made a silent promise to protect and said you loved ten times just today. You know that you are so attuned to every movement, breath, pain, and accomplishment that you will not miss a thing even when it hurts to look.

In my quieter moments I tell myself this is not where I want to be but where I should be. My child and I have bonded our souls in a way that wasn't even possible before. Each laugh is a triumph. Every trivial opportunity to spoil her is taken. I am present even with the pain and worry and for that I will be eternally thankful.

This is my perspective today and for that I am grateful.

-- Tracee M.

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We have wonderful Parent Members. Just please know we are here for you.

Great Discussion Information Abby !!!

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Thanks so much Tracee M and Abby for that! I, like your counselor found out i have Chiari and Syrinx, but i found out first…then 3 yrs later found out my daughter has it too! Just found out end of May. I saw it as soon as i popped in the MRI CD. It is hard to take care of her through my ailment…but between my husban and I we get the job done. We are from Charlotte NC n We have been to Carolina Neuro n Spine , Wake Forest…only to please her Medicaid to allow out of state coverage to go to The Chiari Institute of NY, such as I had to have my Tethered Cord surgery in April. We both have EDS, I hope she doesn’t have all my other disorders like…Crohns, Afib n other arrhythmias, CCI, IH, TC, or Lupus…

She is 11 yrs old and helped me through all my issues, she wanted to be my caregiver despite family trying to pull her to have fun. We have this special bond that can’t be broken…oh boy, even when we both are aggravated, irritated and all the above! She wrote in her journal that she is overwhelmed, but knows everything will be ok, because her mom has it and will help her through and that my moma don’t take nobodys crap! She will tell it like it is when need be, so I know I’m safe!

This is going to be a rollercoaster with me needing a fusion and choosing to wait until we get her decompression done and healed. I have a personal caregiver and at least Medicaid will pay for one for her! We both can get personal care and she can have home health care so my husband won’t get burnt out!

I have hope, trust, faith and love in God, He will get us through this time…plus she doesn’t want to take away too much attention from her three oldest brothers who are 14, 17 n 19! She is the most compassionate person you’ll meet! She wants to be a teacher! She even asked right after diagnosis would she be able to have children!? I said of course…in 30 years from now there will be a known chiari gene, better treatment and you’ll be fine! Gotta love her!

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I wrote that story. I read it and thought - what a gift to see that again.

Even though it was only 9 months ago it feels like a lifetime ago. I wrote it- "dumped" it mentally and felt better.

I am happy to report that my daughter has made amazing progress. Her "cysts" from Syringomyelia have decreased by more than 60%. Her scoliosis has remained stable, her limp is gone. We have mostly good days and a few manageable headaches. If you are interested you can read our whole story here, maybe it will help someone you know: http://www.columbianeurosurgery.org/2012/08/this-is-a-solvable-problem-paiges-chiari-story/

I reread what I had written in November and it made me want to cry. It's was a hard place to be, and I know how lucky I am. I tell myself about a 1000 times a day-be thankful. Not everyone's story ends like her's, and I am not naive enough to think our story is over just yet. I took a gamble and opted for the road less traveled and chose a Neurosurgeon that performed decompression surgery without opening the dura. Her neurosurgeon told me it would be a long watch and wait and probably a harder year on me then her. My immediate thought was no big deal, what mother would not incur the pain five times over if they could spare their child? What he didn't tell me was the countless times I would sit up at night and replay whether I had made the right decision, agnozing over every headache, or backache. Was it selfish?Was it smart? I tortured myself. In the absence of really good research and an MD after our names we all have to just go with our gut. It's astonishing when you realize that's what it boils down to. Just your gut to make such an important decision.

Her recovery was quick, and sometimes touch and go but we are on steady ground today. There is not a morning I do not wake up without looking into my living room and say "there could have been a hospital bed in that room." She could have been the child that just fell over from a drop attack- that had a spinal cord that tethered.

My heart goes out to every parent and everyone living in physical and emotional pain. I stand behind what I said, even at the worst moments I realized that there was absolutely nothing that could bring her and I closer. It's a blessing and a curse.

Love to all.

Tracee M.

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Tracee,

I really can relate to everything you wrote in your post. My son was recently diagnosed with chiari and even though he just turned 20 today I still think of him as my baby.LOL He is my youngest. While he was in the hospital, I could not sleep,eat or even think. I felt sick to my stomach and lost my cool several times with the doctors and nurses. Thank you for writing this.God Bless.

Zodeli

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Same to you, my friend. I hope he continues to be well.



zodeli said:

Tracee,

I really can relate to everything you wrote in your post. My son was recently diagnosed with chiari and even though he just turned 20 today I still think of him as my baby.LOL He is my youngest. While he was in the hospital, I could not sleep,eat or even think. I felt sick to my stomach and lost my cool several times with the doctors and nurses. Thank you for writing this.God Bless.

Zodeli

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WOW, that really hit close to home. Exactly how i have been.feeling. Actually cried my eyes.out.

My daughter was diagnosed with chiari 1 and underwent decompression in 2009. To make.a.long story short, has also been diagnosed.with syringomyelia, tc, retroflexed.odontoid,.basilar invagination, cranial.settling, and.the.latest and.newest,.EDS. she is awaiting craniocervical fusion. Took us almost 3.years to find a NEW neurosurgeon who we.love so far. Four hour.drive.

EDS was.just.diagnosed in May and I am scared to.death. I have.been.so strong and upbeat for.my.daughter and.holdimg up well. When I read what u wrote, I cried so.hard. it.really touched my heart and I want.to.thank u.for that. It.was.really good.to.finally.let it all out. Now.i.can.go.on until.my next.breakdown!

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thank you for sharing your story. our daughter is 6 and we were told that her chiari and syrinx were mild but since she is having several complaints of pain we were given the option of surgery. it is so hard to make that decision as a parent. we want to do the right thing for our children but we are not really sure what the right thing is to do. my husband was also on board with doing the surgery right away and I just could not bring myself to do it. we have agreed to wait 6 months for our next MRI and go from there. in the meantime we are working with physically therapy and speech therapy and monitoring her pain. the one common thing that I continue to hear from all the medical professionals that we have seen is that, a 6 - 7 year old will recover from surgery a lot easier than someone who is 16 or 17. As parents we want to do everything we can to help our children but it has been an overwhelming experience for us since we don't know what the right thing is to do for our daughter. her next MRI is in October so for now we will just wait and take each day as it comes. we are actually going back to see our neurosurgeon this week just so that we can ask him more questions and help us to be more informed so that when the decision needs to be made, we can feel a little more prepared to do so. we will be thinking of your family in your journey and sending lots of positive thoughts to your little guy.



Abby said:

Ed. Note: The opinions expressed below are solely those of the author. They do not represent the opinions of the editor, publisher, or this publication. Anyone with a medical problem is strongly encouraged to seek professional medical care.]

By Mary

My son, Vinnie, was recently diagnosed with Chiari Malformation I and Syringomyelia, I personally never heard of it before that. He is a healthy, vivacious seven - year - old boy, we found this by having a MRI after he bumped his head. He had an odd headache now and again; the only reason it was cause for concern was that it was always at the back of his head. Having only boys, bumps were bound to happen, but this headache was not really something I had seen before and it pushed us to have a MRI. I didn't worry at all thinking the MRI would be normal. Of course, it is good we know now what we are dealing with but now that we know we have to deal with the situation.

First off, we were referred to a neurologist and neurosurgeon at our hospital for an "abnormality" found in the MRI. What does that mean? No one can tell you before the specialist appointment, even Vinnie's pediatrician wasn't sure or familiar with the reason. When we finally saw the neurologist she explained it to us, we were shocked, scared and confused. She wasn't sure if our son was born with the Chiari and the Syrinxes have formed since or if he was born with it all. Her thoughts were that Vinnie should be monitored with MRI's and carry on. But we were referred to a neurosurgeon that seemed to be the protocol. At the end of the appointment, we went away thinking we will go to see the neurosurgeon but hopefully my son will not need surgery. After all he has no symptoms, the headaches could not be classified as symptoms for sure, and he is healthy, athletic and happy.

About a month later at the neurosurgeon's appointment we were told my son did indeed need surgery, definitely, not emergency but preventative surgery. My son asked the doctor does he need to have anymore MRI's because he hated being put to sleep and then waking up with that annoying and hurtful IV in him. The doctor told him you don't need another MRI, because you will be having surgery. My son was happy of course because he doesn't know what the heck surgery is. I left feeling shocked, sick to my stomach and more confused. My husband on the other hand wanted to schedule it next week; he thought it has to be done. I said I wanted to think on it and maybe seek another opinion because I felt at this point; we had already received two different opinions. My husband wanted it done in case of anything happening and making things worse, and school was about to start up again so he wanted our son to be in and out of surgery and all ready for school. I felt like a whirlwind was about to hit and I had to sit and think for a bit. I couldn't just go on with it all that fast.

My next step, putting my husband on hold for a while, was that I contacted my medical provider and they agreed to pay for an outside second opinion. (I would have done it either way.) We again saw a neurologist and neurosurgeon brought all the reports, health records, radiologist reports, MRI's, questions and my son. The neurologist asked all the same questions, did the same exam and said he felt surgery was not needed at this time. He didn't mean never just not while my son wasn't having symptoms and due to the findings of the MRI, in his opinion. He thought the Chiari was not that "far down" and the syrinxes were thin. I was delighted we agreed, "don't fix what is not broken!" But we still had the neurosurgeon to see, he was highly recommended from medical professionals I knew. It did cross my mind would it be like deja vu, one conservative and one not. Do all Surgeons think surgery cures everything? (In the last few weeks I have contacted every person I know in the medical field and asked them to check into this and check with doctors/nurses they knew, as I searched the Internet. At times the Internet scared the hell out of me because I think they tend to lump all the symptoms together and make it the worse scenario so I have tried to seek out specific web sites. I was recommendedwww.conquerchiari.org by a friend and that was the most helpful I thought, it was like Chairi for Dummies. It was in laymen's terms with questions and answers not all medical jargon no one can understand.)

We then saw him, he agreed with the neurologist. He again did all the same neurological tests and saw all the reports and agreed with not having surgery. He said if it were his child he would monitor him with MRI's every 3-6 months. This just happened 2 weeks ago, I am happy but now very much confused. These steps take us time to digest one at a time. When I heard this diagnosis at the beginning I was in shock, now I am sort of in shock again, because if it was clear-cut we had to do the surgery then we would, no questions asked, but now I know it isn't and with surgery can come complications. Why put my little healthy boy through all that now at this time in his life if he is living a normal life. The last neurosurgeon we saw explained that the first one we saw probably wanted to do the surgery for preventative measures. The latter one didn't see anything wrong with this, but he doesn't practice that way, he likes to watch his patients over time with MRI's and visits to the neurologist. If any changes occur in the MRI or any symptoms arise then surgery. He thought the change would come in the MRI first before symptoms so we would catch it in time. I said what if I don't notice or Vinnie doesn't tell me of a symptom. That is why the MRI is the vital key in all of this. It could be 6 months, and it could be 6 years.

My next dilemma is how do I go back to my medical provider and tell the doctor, the one that may one day do surgery on my son, we've decided to wait on surgery. We have had a second opinion and now feel surgery should wait. I know all doctors are professionals and they all remind you of this, but I also know everyone is human and do not like to be second-guessed. I can't worry about that.

Now we are praying that we make the right decision for our son, one that keeps him healthy, and one that will be ok now and in time to come. I so want to take the conservative approach. Something inside of me is saying, "Maybe we need a 3rd opinion?"

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Mary, follow your gut. If you think you need a third (it doesn't matter if you need five) opinions- get it! There's a little more to the "mother knows best" than we acknowledge when you have a child with Chiari..

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Go for third opinion. we.did
we.were.told.by.3 neiros.my.daufjter was fine,.nothing wromg and.it.did.turn out.she.needs.more.surgery. she.has.chiari and.many.related.disorders. how.could.tjey.say.she.was.fine. we now.have a.great.neuro. do.a.lot.of.research.and.make.sure.the.neuro.u.pick is.a chiari.specialist. good luck