Chiari Symptoms

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

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Chiari Symptoms

Postby April » Thu Mar 24, 2011 10:04 am

Hi, I am new to the website. My daughter, 8, was diagnosed with Chiari last month. She had been seen by a neurologist last year for headaches she has had since kindergarten. She has had a whole host of symptoms for several years, but an MRI was not run until she became very dizzy, weak legs, and shaky and blurred vision in the right eye. CSF study showed no syrinx, cerebral tonsils are 10mm descended. Since her diagnosis, she has started to complain of not being able to control her eyes. As she puts it, "My eyes are going crazy. They are looking everywhere and I can not stop them." She has also started complaining of swallowing. She has stayed in school 1 full day since the beginning of February. The main things that bother her at school are dizziness, shaky vision, weak legs, and headaches. Since she does not have a syrinx I am confused by the weak legs. Also, has anyone experience vision issues associated with Chiari? I have noticed that it is worse when she trys to read. It is as if the strain of reading is bringing on more symptoms. I have read some information on web sites about people having Chiari have more problems when looking downward. Has anyone experienced this? Any info would be helpful.

I am also concerned about the weak legs since she does not have a syrinx. Has anyone else every had their child complain of weak legs. It is not constant, but comes and goes.

She was supposed to have decompression surgery at Lutheran General in Park Ridge, Illinois on the 21st, but they canceled it while we were in pre-op because they said her temperature was slightly elevated. It was very frustrating, but I believe God must have a reason for the delay. The surgery is now scheduled for March 30th and will be done by Dr. Ruge.

Any information would be helpful!

Thanks!!! :P
April
 
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Re: Chiari Symptoms

Postby dkg56 » Fri Mar 25, 2011 8:26 pm

I can't really answer the specific questions but would say if you are in Chicago, you might want to consider seeing Dr. Frim at University of Chicago. He seems that he is the only real Chiari expert NS in the area and has been highly recommended a lot on this board. He is a peds NS so that would be a good fit for your daughter. I have not yet had surgery, but from all I have read, you really want to make sure you have an expert involved and it seems pretty undisputed that he is it.
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Re: Chiari Symptoms

Postby medicpt » Sat Mar 26, 2011 5:34 pm

Hi April, I am sorry your daughter is going through all these awful symptoms. And I am sorry that you as a parent are in this difficult situation finding all the answers and being scared at the same time!! The eye movements are most likely nystagmus and is not at all uncommon with Chiari. The difficulty swallowing is a compression on a cranial nerve....watch her carefully for choking as this is a hazard with this condition.
My daughter was 3 at diagnosis and is now 4 and 6 months out from her decompression surgery. Her presenting symptoms were central sleep apnea and compression on a cranial nerve causing vocal chord paralysis. She was evaluated for nystagmus and something called pseudotumor cerebri post operatively... she thankfully has neither.

The neurosurgeon should evaluate for these symptoms and explain to you what they are.... As far as the weakness. The eyes could also be evaluated by a neuro or pediatric opthamologist....

Best wishes to you as you begin this journey. My prayers are with you.... I know that for our family, prayers went a long way in helping us heal.

Blessings, Wendi2
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Re: Chiari Symptoms

Postby April » Sun Mar 27, 2011 11:43 am

Hi,

Thanks for the replies. I appreciate any and all information on the subject.

We did get two second opinions, one from Dr. Dipatri from Children's Memorial and also Dr. Frim from University of Chicago. All three are pediatric neurosurgeons. They all basically said the same thing as Dr. Ruge from Lutheran General. Dr. Frim would have done a duroplasty with a graft, whereas Dr. Ruge and Dr. Dipatri would prefer to score the dura since she does not have a syrinx. Dr. Ruge and Dr. Dipatri said they would recommend surgery based on all her symptoms. Dr. Frim said he would leave the decision to us. If we felt her symptoms were significantly affecting her life he would do the surgery. They all seemed like very good doctors. They all have great credentials and they were easy to talk with. One of the reasons we liked Dr. Ruge is that he does the surgery himself with another doctor from the practice. The other hospitals are teaching hospitals and all others to participate in the surgery. I know doctors have to learn somehow, but when it is my child's brain it makes me nervous.

Since she has not completed a day of school since the beginning of February and we see her symptoms progressing we are inclined to agree with surgery.

The doctors said we should see improvements with the headache, dizziness, and the eye. They were not clear on the weakness of the legs. Dr. Frim thought she might feel that way more to dizziness then actual weakness. At the time of the meeting I could not remember if they occurred at the same time or not. I have been since watching her and they do not always happen together.

She is now supposed to have her surgery on March 30th. We have been keeping her in a bubble for the past week so that we do not have any delays in surgery. I appreciate the prayers.
April
 
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Re: Chiari Symptoms

Postby youngwife » Tue Mar 29, 2011 10:42 pm

Just a thought....

Chiari has many varied symptoms. But hypotonia is a classic symptom, and might would explain the weakness she is feeling in her legs. My daughter developed arches in her feet after her decompression, which her neurosurgeon felt was due to lack of muscle tone in her feet prior to the surgery.

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: Chiari Symptoms

Postby chrisw » Thu Mar 31, 2011 10:16 pm

April wrote:Hi,

Dr. Frim would have done a duroplasty with a graft,



Hi!

Did you watch the Webinar a few days ago with Dr. Oro where he talked about the Duroplasty and the Graph and why he does this? I don't know if you can get the slides or listen but it was interesting in how it cuts down in post operative CSF leaks and also addresses the need for additional space. I found that part quite interesting (but a little gorey)

Best wishes!

Chris
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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