Surgery or Not?

[booz]

My little girl was recently  diagnosed with charini malformation 1. It was found by MRI by chance when checking a area of the brain for a cause for her first seizure. We saw a Nero surgeon a few days ago and he suggesteps surgery based on a small pool of fluid he saw at the top of the spinal cord and for a measurement of the malformation of approx. 17mm. She is only 5 years old and has had none of the symptoms. For now i have opted to hold off on surgery to get a second opinion and to also re- MRI in 6 months to see if fluid area has gotten any bigger. Any thoughts and comments would be greatly appreciated.

[Elisaandbucky]

After reading through your thread, I can definitely sense your fear and anxiety. Some people have incredibly high thresholds to pain - which can make things uncertain, as pain is a sign that there is a problem in the body. I think a great way for you to feel more in control is to keep a pain/symptom journal with dates and duration of all entries. This will be extremely helpful for any future appointments. Because your daughter is so young, you will have to help her with this. I really hope these posts to your question can help.

[selmaS]

  
  If it were me, I would have all of them tested to be sure ....... my leg pain was the more I waked or even the faster my calf muscles would get tight and hard like a rock and made it difficult to keep going....I had times when I could not move.....I had times I fell as a result of my legs....gym class was awful since I was not able to explain what was going on since the Dr said it was "growing" pains....

From what I have learned since my Chiari DX is most likely my leg pain was due to my having tethered cord and EDS.....

What mystery sympptoms do they have?

[Jessee37]

You mention having leg pain, can you describe that? 2 of my 3 DDs have mentioned on and off about having leg pain. We always figured it was "growing pains". One of them has been dx with CM1 that is symptomatic and will be having surgery. Should I have them look at the others too? All of my girls have had hard to dx medical issues. My oldest has had a migraine headache since 2012 that's never stopped and never responded to treatment. She has tingling/numbness in her fingers and she has frequently passed out. I have asked them to check her imaging from early 2013.... Should I check the 3rd DD too?
If this could be causing problems for all of them, maybe it can explain some of their mystery symptoms. Maybe?

[selmaS]

  Seizures may not always show up on an official symptom list but as the other poster mentioned there are many that do post it as a symptom...thing is sometimes seizures can show up before or even after surgery....sometimes it is DX'd as epilepsy ...and it tends to show up more in children, but we have had adult members develop it as well.

Even as an adult, I found it difficult to know if how I felt, fit into what was described as an official symptom....it is not easy to discern a "symptom" from how I always felt....I never complained about any of them as a child except for my Headaches and leg pains....and I had many more know that I know what they are and what is not normal.

I do not regret having surgery...and with each yr that passes I notice more benefits...

[booz]

Thank You we were told by the first Nero surgeon we saw that the seizures were unrelated to the condition like i said this was found by accident. Good point on feeling normal i hadn't  thought of it that way she is young so may have had symptoms the whole time but thinks its normal. We were told that the first symptom would be tingling  or numbness in the hands and feet so we have been trying to explain and ask her about that.I don't want to wait to long to act on it but also don't want to jump the gun considering she has no symptoms. We were told the surgery would be painful and made aware of the possible complications. I just feel like that there is possible that what they see now may have been that way since birth and she may never experience symptom. We will definitely do the surgery if necessary i just pray we don't have to pit her threw it. Thought i might find someone who has been in the same situation.

[selmaS]

Hi and welcome to the Chiari forum.

Let me first address the fact you said your DD does not have any symptoms....the seizure could be  symptom...plus when you are born with something like this it is possible to have many symptoms but consider how you feel to be "normal"...we adjust to many of them and just assume this is how everyone feels so we do not know to complain...once we understand it is not "normal" we realize just how many symptoms we really have.

I also agree to get a 2nd opinion and look for a true Chiari specialist.....

Rule out ALL related conditions b4 you consider surgery.