2 Year Old's Chiari Malformation 1 with Paralysis???

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2 Year Old's Chiari Malformation 1 with Paralysis???

Postby Dustin » Mon Dec 17, 2007 4:27 pm

Has anyone seen anything like my son's condition which I will explain his situation below. Please help us with any information you know.


It seemed like my son had some sort of neck trauma at first because he fell off our 6 inch tall ottoman onto his neck. He seemed fine afterwards except for being a little stunned. He was really upset crying but good enough to walk out some friends from church we had over to watch the cowboys play that night. He was and has always been alert and said bye to our friends. We went into our bedroom and began to brush his teeth. After I got done with that he grabbed the toothbrush with his hands and brushed his teeth himself for a little while. He was actually using his hands this whole time and drinking from his cup b4 he became very fussy and seemed like he wanted to go to sleep. I rocked him and he fell asleep for about 45 mins. He then woke up screaming and when my wife picked him up, he was as limp as a rag doll. We then took him to local ER. They admitted him right away, took him back. After the DR saw him he rushed him into the trauma room and began preperations to stabilize his whole body and called the care flight crew to come get him and send him to another hospital near by with a pedi-ICU.

It was our worst nightmare. A living hell. My son got admitted into the pedi-icu quickly where they did the first MRI. The MRI showed swelling in the neck, spine, and brain. By that time Dax lost all feeling from his neck down and Dr's said he was paralyzed and saw no need for surgery. You can imagine the gallons of tears my wife and I shed from there untill a neurosergeon we had not even met got wind of Daxs condition. This Dr was flown in to do a complicated surgery here in the hospital. He confirmed that Dax is paralyzed, and there is nothing he could do to help, but he knew one of the best pedi-neurosurgeon's would be in our area for a seminar that day. He said he would get that Dr to look at the MRI and see what he thought.


That pedi-neurosurgeon's name is Dr Ibrahim Nihum. He ordered another more in depth MRI. As they were wheelind Dax out of the MRI, he was already there reading the results. Not more than 10 mins later he came to Heather and I and said "you son has this pre exsisting condition called Arnold-Chiari Malformation 1 and is paralyed from neck down.

Next thing you know, we are rolling him into surgery. They surgery went perfect, and as they were stitching his skull up, he was kicking his legs forcefully.

Since the surgery we have had respitory issues and are hanging by a thread on whether or not to do a tracheostomy. The last couple days his breathing has gotten better. He has sensory feeling in all extrmeties but no movement in his arms. He has constanst anxiety and is doesnt want anyone touching him. The Doc's says he has some pain because his nerves are waking back up. He only has movement in his legs when you stimulate them by touching.

My questions are have any of you heard or had these sudden onset of symptoms in a young child?

Since he has "feeling" but no "motor" in his arms is this a good sign or bad sign?

The doc's are not sure if the fall caused the paralysis or is the deformation did. The MRI's show no permanent damage to the outside of the spinal cord. They say he most likely lost blood supply to the area's that control the motor function in his arms and legs.

We have been in the PICU for 3 weeks now, and plan on transfering to Baylor's Our Children's Medical Rehab in Dallas soon. I have heard only good things so far. Has any heard of this hospital? What have you heard?

What can we expect as parents for our son for the future? What kind of governmental help can we get with his condition? How do I find these things out?

ANY comments, encouragement, explanation of stories you have heard would be greatly appreciated. If you have any questions please ask. I am sure I didn't explain his situation in the best way.
Dustin
 
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Postby angie7 » Mon Dec 17, 2007 9:13 pm

I am so sorry....My heart goes out to you! And having soon to be 2 y/o twins, I cant imagine what you are going though. My thoughts are with you....

As far as your son's condition. I am a little confused. Since they say he had CM, did they tell you the size of the herniation? What type of surgery did they perform on him? Did they do a full body MRI to rule out any syrinxes, scoliosis, tethered cord?

Also the first thing I would do is send his MRI's to a top-notch CM specialist. Dr Frim is in Chicago and Dr Menezes in Iowa.

Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234

Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616

They specialize in peds and should be able to give you a much better insight as to whether or not this is CM related or not. My gut says its not b/c I have been a member here for years, plus through my own journey, tons of research and you just never hear of this happening. Not saying a fall can not aggravate CM, but it shouldnt cause this. Chances are the CM was an accidental finding and since it is rare and not many NS know about it, this is being blamed on this. Please get to a specialist ASAP! They do allow you to mail the MRI's free of charge and will get back to you. Explain your urgent sitiation and hopefully they can get back to you rather quickly.

I am so sorry that you are going through this. But you have found a great site with wonderful, knowledge people..Please keep us posted on Dax.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Location: Florida

Postby Janice » Mon Dec 17, 2007 9:54 pm

My prayers are with you all. I am really sorry to hear about your sons situation.

I agree with Angie. I would find out the answers to the questions she has asked, if you don't already know. Also, sending the MRIs to one of the recommended specialists isn't a bad idea.

Take care and keep up your strength and faith.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby Dustin » Tue Dec 18, 2007 1:35 am

I will find out the answers to your questions tomorrow. I just got back from the hospital and have had to go back to work this week. We live almost an hour away from the PICU he is at. I want everyone to know this before I start though. Mywife know's the in's and outs of EVERYTHING that has been done, I don't want anyone to think I am not remembering because I didn't ask all these questions or was told these things. It has just been an emotional roller coaster these last 3 weeks. Everything happened so fast and just out of the blue. If not for God, family support, friend's support, co-worker's support, church support and even stranger's support we wouldn't be back on an even clear head right now. We have been living out of a suit case and snack food in a PICU room for 3 weeks. My wife is the strongest person in the world, cause she has the hardest job of staying with our baby 24 hours a day for the rest of this. I took off 2 weeks but have to go back to work. We of course are up in the air on when or if my wife will be able to ever back to work. We are planning on the short term for right now, kind of a take it day by day with the recovery of our son, but finacially taking it 4-6 months at a time. I think we have a good plan for these first few months, and will have to adjust if something drastic needs to be done.

My wife did witness Dax's fall. He was just horsing aroud with one of his buddies that is about 4 months older than him. She explained the way he fell as he rolled off the ottoman (which is only 6 inches tall) onto the back of his head. He of course cried but seemed fine at the time. He calmed down and we walked our company out of the door about 10-15 mins later. He said "bye bye" and we even looked at our xmas lights outside, he was talking and babbling out them and out Santa Choo Choo train outside. We never set him down to walk, we were holding him the whole time. We took him into the bedroom to get ready for bed. We put on his PJ's he brushed his teeth and drank his water. He then became fussy, and I put him to sleep on my chest. We then laid him in the bed and he slept for about 45 mins. He woke up screaming. We picked him up and he was like a rag doll. Limp from head to toe. I think I remembering a little movement in his arms, but not enough for me to think he was OK. We rushed him to the local Providence Hospital ER in Waco TX. The Dr there did C-spine and air flighted him to our hospital Scott and White Hospital in Temple TX. They started steriod treatment right away the minimize swelling.

At first a neurologist, pediatric neurologist, and a surgical neurologist did look at his injury and said it was just a spine/neck trauma but would get other opinions. They did do a full body MRI without contrast to come up with that decision. They said there was welling in the neck and spine but saw no reason at that time to do decompression surgery.

When we got a second opinion from another surgical neurologist he said he thought Dax did have head/spine trauma BUT wanted to get another MRI (full body) to see if he had Arnold-Chiari Malformation. He explained what CM was as well. He too wanted to get another opinion from a pedi-neuro surgeon that was about to be in town. He also wanted another MRI with contrast (full body) for the pedi-neuro surgeon to look at.

A couple hours later we were wheeled in for Dax's second MRI in a 12 hour period. I was able to be in the room with Dax, he was sedated, and all kinds of thoughts ran thru my head. I was basically thinking my son was about to die and there is nothing I am going to be able to do for him.

As we came out of the MRI Dr Nihum was there reading it. We got back to the ICU and about 45 mins later Dr Nihum talked to my wife and I. He said Dax has CM without a doubt. He also has some type of trauma to his spine. He needed to do the surgery and explained the exact surgery he was going to do (which I will find out the specifics tomorrow, but from what I remember he was going to take out some of the C2 and C3) to let the blood flow go back into the spine to cure the paralysis. I also can tell you (from what I remember) he couldn't tell us why the "fall" would cause the sudden onset of CM nor that the type of fall would do to his spine what it did.

The surery was done and went "great just as we planned". Dax had problems with his respitory fuctions (they have gotten better but no where near 100%). He has HIGH anxiety that are causing ulsers and blood loss, sensory coming back in his whole body but no motor in his hands or legs. He has weak motor in his legs as of right now. He is just a sad guy right now and doesn't understand anything.

I was told days after the surgery they did send the MRI's
to a CM specialist in Houston who concurred the CM. He also couldn't tell us why the "fall" would cause the sudden onset of CM nor that the type of fall would do to his spine what it did so we are still up in the air about that one.

We are now waiting on his bleeding to stop and send him to Baylor Medical Center in Dallas for rehabing his spinal cord injury for 4-6 week intervals.

Thats it in a nutshell I think. I may of still left stuff out, cause it is late. I have tons of other questions but just can't think straight right now. Please feel free to help us in anyway you think.

Does it sound like we are dealing with a spinal cord issue or CM issue? The sergeon did say he doesn't see why another CM surgery would be needed because what he did, would give the swelling enough room.

I hope this helps.
Dustin
 
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Joined: Mon Dec 17, 2007 1:18 pm

Postby Janice » Tue Dec 18, 2007 11:52 am

Good Morning Dustin,

Thanks for the update on Dax. Sending big (((((hugs))))) to your wife and prayers for her strength and faith.

I don't have CM, only SM but this sounds like a spinal issue to me, especially since they mentioned early on that there was a lot of swelling in the spine. I am not a professional so this is just my personal opinion based on the information in your posts.

Either way, the CM will need to be monitored from here on out.

I will keep you all in my prayers. (((((Hugs))))) to all of you. You are so courageous. I can't even imagine what you all must be going through but I pray everything works out for the best, real soon.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Joined: Wed May 30, 2007 6:44 pm
Location: Escondido, California

Postby angie7 » Tue Dec 18, 2007 1:54 pm

Thanks so much for posting again. Dax has been on my mind since I first read his story.

I have CM and SM, and this sounds like a spinal cord issue to me. The CM is definately going to have to be monitored from here on out like Janice said, but I just dont think it sounds like CM related.

I am not sure of the doctor in Houston he is referring too. Unfornatualy many NS like to call themselves experts when they are not. I would refer to the 2 names I gave you above as they are truly the experts and see the most patients with CM and perform the most surgeries yearly.

I would ask the doctors specifically "how large was the herniation(this should be given in mm), does he have a syrinx? and if he so" how big? (width & length) does he have tethered cord? a mass? scoliosis? anything abnormal in his spine?

And please, you dont have to apologize for not "remembering" every detail. This is a very dramatic thing going on in your life right now, you are entitled to not remember every detail. All you care about is you want your son better, we all understand that here. We know that everything is like warp speed when dealing with something like this, so please no apologies...

Please keep us posted on Dax's condition. And your family is in my thoughts...I will be thinking of little Dax...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
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Location: Florida

Postby angie7 » Wed Dec 19, 2007 8:44 pm

Just wondering if you spoke to the doctors and they gave you any feedback? How is Dax doing?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby theway-1 » Wed Dec 19, 2007 10:23 pm

Hi- Dustin- my thoughts and prayers are with you and Dax- this is a very trying time- I live in the Dallas Ft Worth area- I have an 8 year old with CM/SM and has had surgery- however, we went to Childrens! are you guys at Baylor now? I would at least ck out Childrens- they have a great team of Ped Neurosurgeons! Please keep us posted- You and your family will be in my prayers!
Lisa
theway-1
 
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Prayers for you

Postby brianfsmom » Fri Dec 21, 2007 11:17 am

Hi Dustin

What a terrible experience! My prayers will be with you and your son for a complete recovery.

My son was diagnosed at age 9 with chiari and SM, and I remember sitting in a surgeon's office discussing the risks. He said, "the risk of spinal cord injury is like this ..." and he dropped a pencil lightly onto the desk. If I understand correctly, the risk is greater to the non-decompressed chiarian because the brain is compressed by bone. When the neck hit the floor (was it hardwood?) the brain may have been injured, as well as the spinal cord at that level.

I'm assuming there is no syrinx or they would have told you.

Hopefully at this point they can rehabilitate your son and get him back to a functional level of motor skills. Look at that football player in the news recently. Don't give up hope, and keep searching for answers if you don't like what the doctors are telling you.

Please keep us posted.
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Postby dtyree » Fri Jan 04, 2008 10:21 pm

What a terrible experience for your son, you and your wife. I cannot imagine the thoughts you both have and have had. Such a small event that causes such a huge disruption in life is incomprehensable.

Our God, we see what has taken place, yet we do not understand in your great wisdom, why. Allow us Lord to see through your eyes the reason for this incident and the whys involved. Give to us a glimmer of understanding that would enable us to know.

Dear Lord, we ask that you send your healing hand upon this family. Physical healing for this boy that so deserves a whole life. Emotional healing for this father and mother that have had to endure more than anyone can know. Continue to send Your strength to this family, our God. In Your Son's name, we petition these. Amen

Peace and Love
David
Been called a "walking medical dictionary".
dtyree
 
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Location: Nashville, TN

who is the CM specialist in houston?

Postby lalaswihart » Sun Jan 06, 2008 8:58 pm

I live in Houston and I was just wondering who the specialist in Houston they sent stuff to? I live here and we saw the Head of Pediatric Neuro at Texas Childrens hospital and he knew of Chiari and does surgeries but really does not know that much about it. He is an awesome neuro. surg. just not a Chiari expert. wishing you all the best and sending many prayers up for your Family.
Laurie
In Tx

Ps
I know one girl who is 15 and has CM/ Eds and had paralysis of her legs and was in a wheel chair and after surgery her mom said she was able to move them, she had not done that in about two years. It maybe totally unrelated but I feel any small thing like this Keeps Hope and Faith in the forefront. God Bless
lalaswihart
 
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Postby MissyG » Sat Jan 19, 2008 6:35 pm

Hi Do you happen to have a sister named Lyn? I work with her with NACD and I was just diagnosed with Chiari and a syrinx. She called me and told me not to move and about your son. My prayers are with you. I hope he is doing better. I'm waiting to meet my surgeon on Tuesday but I am 34 and can understand. I did go through something like this with my second son. His was a full arrest though and the outcome wasn't positive. I know that fear. I'm just grateful for the surgeons who were able to help your son. God Bless. Missy G
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Postby Dustin » Fri Jan 25, 2008 2:59 pm

Sorry it has taken so long to get back on here. Here is an update on what we are doing now. We are now @ Cook's Children’s Hospital in Ft Worth. We decided to go there instead of Baylor because of the medical needs he still has. They performed a tracheotomy on Monday and he is doing well. Last Sunday he moved his right arm on command. He has been showing strength in his movements ever since. He has also show movement in his left arm on command.

The size of the herniation was 11. The first MRI's showed his syrinx was 7 and now it is a 2 at its widest point. The type of surgery they did was a laminectomy.

When he hyper-extended his neck during the fall it agrivated the CM. The CM was an accidental finding.

Other than him moving his arms, we also had some good news from one of the charge nurses in the ICU. Her husband had an accidental finding of CM when he was in a car accident. He too was paralyzed, but has since regained almost everything back. We are 5 days short of the 2 month anniversary of his accident and it has been full of ups and downs. He will return to the therapy floor next week for PT. He has been in ICU for 2 weeks now due to a number of things ie pneumonia, viral infection, fevers and the flu. Everything is clear now, and he is actually smiling, laughing from time to time and letting us read to him.

Anyone know of great outpatient PT's or OT's in Texas. We will travel anywhere for the best. Also, when we got the bill in from the hospital is said laminectomy along with craniectomy. Do those go hand in hand? That’s what I am confused on, I just got the bill yesterday and when I travel to Ft Worth tonight I will try to figure that out.
Dustin
 
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Postby Dustin » Fri Jan 25, 2008 3:01 pm

MissyG wrote:Hi Do you happen to have a sister named Lyn? I work with her with NACD and I was just diagnosed with Chiari and a syrinx. She called me and told me not to move and about your son. My prayers are with you. I hope he is doing better. I'm waiting to meet my surgeon on Tuesday but I am 34 and can understand. I did go through something like this with my second son. His was a full arrest though and the outcome wasn't positive. I know that fear. I'm just grateful for the surgeons who were able to help your son. God Bless. Missy G


My sister in laws name is Lyn. It's a small world. Your son had CM too?
Dustin
 
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Postby MissyG » Fri Jan 25, 2008 4:49 pm

No I do - just diagnosed after a car wreck. I have surgery Tuesday. She called and told me not to move as soon as I told her what they said I had. I hope your son is doing better. Lyn is a great blessing to our family.

Missy G
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