chiari malformation with syrinx

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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chiari malformation with syrinx

Postby sandyricnic » Tue Apr 22, 2008 12:17 am

Hi all i'm new here. Well on March 4th 2008 my son took a seizure first one ever called 911 they did Mri found out he has the chiari and also the cyst on syrinx which i don't know in cm or mm but i do know it is down his whole back this finding was such a shock i'm such a wreck over this. I saw a neurosurgeon and he recommended him having surgery to fix the chiari to fix the way the fluid runs so that the syrinx will shrink he said it is rather large and doesn't want him to get to the point of him having numbness to his hands or chest. I have no idea what to do in this case he has no symptoms and he never did. But i do know this surgeon is excellent He is in the childrens hospital of philadelphia Dr. Sutton. So my question is has anyone ever had a surgery for this condition having no symptoms at all. I see alot of people that have surgery havee to get numerous surgerys i'm so scared hes my baby. Plz any opinions will be appreciated. By the way he is a healthy and extremely active 5 yr old boy with no symptoms.
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Re: chiari malformation with syrinx

Postby emarismom » Tue Apr 22, 2008 6:07 am

My daughter was 5 as well when she was diagnosed. Her only symptom was scoliosis, which led to the CM/SM diagnosis. She had a huge syrinx with full spinal cord expansion. Up until that point in Sept/Oct 2004- I thought that everything was fine and that she was a normal, healthy child. Needless to say I was a wreck too.

Within two weeks we had her decompression surgery (Nov. 1, 2004). She still has the scoliosis, but no other symptoms have developed. Looking back at her before the surgery and after the surgery I can see the small changes in her mannerisms and ways of doing things. Where I was sure before the surgery that she was in fact asymptomatic (except for the scoli), now I can look back and say that she really WAS starting to have symptoms, only I didn't know that they were symptoms. SM is very subtle. It doesn't happen from one day to the next. Rather it is gradual with a variety of aches and pains. Children being young with fewer verbal skills, often don't know what they are experiencing and can't tell their parents everything that is happening within their little bodies.

Since the surgery, Emily's SM has reduce at least 75%. There is no cord expansion. I can't say that I am not worried everyday. But I do believe that the surgery saved my daughter. It was not a question of if neurological damage would occur, but when.

If you are uncertain about getting the surgery, then get other opinions from other doctors. There are many parents who wait for symptoms to begin. There are also many doctors who just follow the CM/SM through MRI's to see if it does change, many times it doesn't. There is not set, exact criteria as to when is the right time to operate.
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Re: chiari malformation with syrinx

Postby Amy Joe » Tue Apr 22, 2008 9:24 am

My thoughts and prayers are with you! I am the one w/ CM however my baby now 21 has had life saving surgery @ 3 and 16. I just wanted to lend my shoulder and express that I to went thru hell with worry and pain for my baby. It is very hard I know.... If you trust in her NS this can be a wonderful comfort to you and your family. If you don't, please seek a second opion.

I made the mistake I pay for internally everyday, I did not feel comfortable with my daughters surgeon when she was 16, he pushed saying it was life or death and I am taking her to the OR. He was a Cowboy! A week later I called and ambulance and had her moved. She spent 5 weeks in pedi icu and lost her last 2 years of HS, now she struggles with posttraumatic nightmares. She just finished her first year of college. Engaged to be married. Still struggling with reality she can never have children.

Follow your motherly instinct. It is always right with our children. God will guide you thru this. My deepest prayers are with you.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
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Amy Joe
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Re: chiari malformation with syrinx

Postby jonesjam » Wed Apr 23, 2008 9:05 pm

i'm 14 and i have a cm/sm and had surgery in march 08. i had to see 6 nerosurgens before we found one that both the surgen and the insurence would do. it was sooo... frustrating. I had bad headaches and fatigue and most surgens said surgery wouldn't help. Actually all the ones that said that were the ones that worked on adults. me and my parents felt way more comfortable with pedea doctors. They said they would rather do the surgery now before I developed more symptoms and it be too late to fix. if and when you have surgery i won't lie it hurts! and it's taking a long time to get over it but it was soooooo... worth it
best of luck, hope i was of some help :D
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Re: chiari malformation with syrinx

Postby JayZMom » Mon Apr 28, 2008 10:43 pm

Hi from Maryland. I can totally relate as I have a 6 year and we are dealing with the same issues. He has been diagnosed with the malformation with a very small syrinx at this point. I can't really state that he is symptomatic to the point of requiring surgery. We have a follow up MRI scheduled for next Wednesday. His neurosurgeon says she since we are close to the hosptial and could get in to see her within days instead of weeks that some others have had to wait, she often recommends waiting until the onset of early symptoms that such as dizziness, headaches, etc. My son will play his first flag football game on Saturday and I have faith that we will have a wonderful summer and no real reason to move forward with surgery at this point. I have heard and read of cases where the syrinx has had a spontaneous resolution occuring more so in kids that adults. I am claiming this result with my son andy yours too!!

All the best in your decision!

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Re: chiari malformation with syrinx

Postby rasmussen » Thu May 08, 2008 11:51 am

Yes, my son was two years old when he was diagnosed with Chiari Type I w/syringomelia. He had absolutely no symptoms other than being sent home from school three days straight w/headaches. The MRI showed the headaches to be from severe sinus infection, which went away w/antibiotics. So, we found this condition by accident. Very active kid, very verbal, outgoing, extremely well-coordinated...loved to run, ride bikes, etc. absolutely perfectly healthy little boy.

Surgery was recommended due to the syrinx and was successful. He's now doing all the normal activities of a 2nd grader. Now, we're having our 3 year old daughter tested next month because she is exhibiting issues with severe speech delay and we're afraid that could be a symptom.
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