MRI results are back....

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

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MRI results are back....

Postby Beach4me » Thu Jan 24, 2008 6:57 am

It appears that my 12yr old dd does have CM1. Her MRI shows 7mm. Our ped Dr. is going to refer us to a Dr. at Wake Forest. I would love to hear suggestions of selecting a Dr.!

Questions are running crazy in my head. I am not in a panic (yet?). My main question is ....do symptoms always get worse? Is it a given that at some point surgery will be necessary?

So glad I found you guys...even my Ped Dr. admitted that his knowledge is very limited. I appreciate his honesty but still doesn't stop the questions from coming...
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Postby brianfsmom » Thu Jan 24, 2008 7:53 am

Hello

Well, at least now you have an answer for her symptoms.

The main answer is no, without a syrinx particlarly, and occasionally with one, symptoms can be managed without surgery. It comes down to how bad the symptoms are and what they are impacting neurologically as well as emotionally.

Good luck with the doctors. I would try to find someone with a good amount of experience in chiari. It is great that she doesn't have a syrinx, but you don't want one to form either, so she should be watched closely with regular MRIs.

Also, nobody can predict if it will change as she grows. At this age she's probably growing rapidly, or she is just about to start. This is a critical time with chiari, because we were told that it can become worse during growth spurts; which is why you have to watch children so closely. But no .. there is no 'given' when it comes to chiari :?
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Postby Beach4me » Sat Jan 26, 2008 7:45 am

Please excuse the dumb question here..

If they can tell she has CM1, can they tell if she has a syrinx, as well? Her MRI was only of her "head". Are they always in the same place or can they be lower on your neck or spine?
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Postby dtyree » Sat Jan 26, 2008 7:55 am

Hello and welcome to this place of answers.

I would like to comment on the surgery. I believe it depends on the cerebral fluid flow whether or not surgery is needed. If the flow is too low, surgery would be the best road. The base of the brain is given more room and the flow is up to normal. With a CM, the flow is restricted and new symptoms can occur. For me, symptoms would last 6 months to a year, then something else would come up. I think the symptom list is going to differ from one individual to another, even though CM is the diagnosis.

An MRI of the head and neck would be useful in locating a syrinx in this area. Probably a full spine MRI would be helpful in locating anything along the spinal cord. Ask your doctor if he/she can reccomend a doctor in your area that specializes in this area, if that exists, or someone who is more knowledgeable. You can ask on this board for a doctor in your area, we just need to know where you live.

And, stupid questions do not exist. You need to gather as much as possible. All questions are valid and would encourage you to keep on asking, someone here has the knowledge or experience that will be beneficial to you and your daughter.

Both of you are now traveling down an unchartered road and aprehension will be a part of this journey. You need to gather as much knowledge on this subject as possible. I did not find out about this board until after I had CM surgery. I now wish it had been the other way around. They say knowledge is power. And I have found this to be true in the medical arena. The more you can talk to medical folks on their level, the better the results. Using their vocabulary gives you an edge and better responses.

These are just my thoughts. The eventual decision will be yours hopefully based on what you know and what you believe is the correct path for you both.

Remember that God is holding you both in His hands. Now that you have the proper diagnosis, things will change for the better!!

Peace,
David
Last edited by dtyree on Sat Jan 26, 2008 8:40 am, edited 1 time in total.
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Postby brianfsmom » Sat Jan 26, 2008 8:34 am

David is right, there are no "dumb" questions.

A full spinal MRI is usually best. At least an MRI of the cervical spine, which would show bits of the thoracic as well. Usually it's easiest just to do the whole thing and get it over with.
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Postby Beach4me » Sun Jan 27, 2008 7:54 am

I appreciate everyone's time to help us. It is my nature to require a lot of answers. :roll:

I have been referred to someone locally for a further evaulation. But what I hear you saying is that I should go to someone who is an "expert" in my state (NC). I am open to suggestions.

Do most people go to the CMI in NY for surgery? With her age (12) should I consider any other place should she require surgery? How do you handle follow up?

Honestly, I will be surprised if she needs surgery at this point. She does have good days. So good that I think "she will be fine". Then other days, I feel so bad for having to make her get out of bed for school because you can tell, physically, she is barely making it. I have been telling the Dr. for a year that she is soooo tired and it was not normal. She had a full blood work up six months ago and everything was good. Frustration set in then.

What I have learned from you guys is that the symptoms do come and go. And this is definately the case with her. I was blowing off some of her complaints because they were "weird" and they were not consistent.

One last question: When she plays physical activities. Her face gets really red all over. Except, around her mouth she has this white ring. And of course her head is banging but after she settles down, it goes away. Is the redness/white ring connected in anyway?
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Postby dtyree » Sun Jan 27, 2008 4:37 pm

Finding a good NS or NL will be a bit of a bear. But hopefully someone will come along here and post some NC doctors.

My opinion about the surgery. If she is displaying symptoms, yes. She is only 12 with a full life ahead, symptoms, in my opinion, will only get worse. In my case, symptoms got to the point where I contemplated suicide. I do not post this to scare you, however, CM is serious. I think you mentioned sports. I used to work out but the exercising antagonized the CM so much, I had to give it up. Sports can bring on symptoms, which is not helpful. She is going to need relief. In my case, symptoms would come on for a year, then go away, come on again, etc. So it will just be a life long problem until taken care of. And, if it can be fixed, then she would have a life free of symptoms.

Here again, my thoughts. But getting hitched up with a good NS/NL will help, I believe, in your decision making.

Peace,
David
Been called a "walking medical dictionary".
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Postby brianfsmom » Sun Jan 27, 2008 9:47 pm

Hello again

We live in NJ, so my son had surgery in NYC. I am not too familiar with NC, but are you near Duke? I know they have a lot to do with chiari and SM, they're running a big study there. Perhaps someone else will post with more info, who knows something more about it?

Hope that's helpful.
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Postby jinglebells » Mon Jan 28, 2008 5:12 am

Hi Beach4me
I am an adult with chiari, i just found what you wrote about the white ring around the mouth interesting. I do not know whether it is connected to CM but i have this very noticably when i am hot.I find it is where my facial numbness started around my lips.I do hope you find the answers you are looking for.
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Postby youngwife » Tue Jan 29, 2008 1:34 am

My 13 yr old daughter used a wonderful chiari expert in North Carolina. We travelled over 500 miles to see him. Her surgery was last October, and she is so much better now.

If you have any questions, I will be happy to help all that I can! :)
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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Postby Beach4me » Tue Jan 29, 2008 6:53 am

Do you mind sharing who her Dr. is? What were her symptoms?
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Postby Beach4me » Tue Jan 29, 2008 6:56 am

Jinglebells:

She has never mentioned numbness in her face. I have pointed it out to her before and she says it is fine. To me, it would mean an oxygen issue, but who am I? She always has pounding headaches after any physical activity.

Sometimes I wonder if she has some of these symptoms for a while and has gotten use to the "feelings". Make sense?
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Postby jinglebells » Tue Jan 29, 2008 8:40 am

Beach4me
it makes a huge amount of sense to me. I personally think sometimes that you get used to the strange and varied symptoms and then another one comes along to take their place and over time it just becomes the norm. I hope you can find the best of care for your daughter and i am sure that the many people here will help you all they can.
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Postby Beach4me » Wed Jan 30, 2008 10:22 am

We have a consultation with Dr. Fuchs at Duke on in a few weeks. Yeah!

Anyone know anything about him? Bedside manner? Patient? Does he communicate with a preteen very well?
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Postby Janice » Thu Jan 31, 2008 12:40 pm

Hi Beach4me,

I don't know anything about Dr. Fuchs but if you do a seach you could probably find some posts that reference his name and possibly, once reading them, you could find answers to your questions. I think I remember seeing his name in a few posts over the year.

I pray the appointment goes well.

You both are in my thoughts and prayers. (((((hugs)))))

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

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