4.23.2008

Results? Maybe

Sorry for Keeping you all waiting for Carson MRI results.

Let me start by saying I won't rest until it is read by our NS at our May appointment.

Carson's MRI of her spine came back normal. They didn't see a syring, they didn't see a thethered cord, and they didn't see a chiari malformation.

Wait, back up.

Yes, I said they did not see a Chiari Malformation. Well, we all know that is not correct, because she has already been diagnosed with it. So, I know the other 2 things maybe easier to see, but I think I will hold my breath until our appointment in May if you don't mind.

2 other updates -

May 15th we will be back in Milwaukee to see our favorite - Dr. Jensen.
Because Carson now has chiari, we would like to keep everyone in the same loop. Especially now, because we still are not sure if she will need another surgery to help close the holes in her skull from the CVR.

Also, while talking to Jensen's nurse, she suggested that we may want to see someone in the Genetics department. So, I think we will. Maybe we will find some answers.

My mom also asked me today if I thought it might be a good idea to seek out my biological parents. You know, I really don't know. In my eyes, the damage is already done (cranio and chiari). What do you guys think?? Do you think I should try and seek out my biological parents for more answers??

5 comments:

Gudlaug said...

Hi,
I just hope the second opinion is correct and leads to the un-diagnosis of Carsons chiari. As a daughter of a radiologist, I know there are as many false positives, as there are false negatives. And if one is specifically searching for signs of a particular abnormality, chances are they will over-interpret structural variants that might otherwise fall into the normal range.
Even if the diagnosis sticks, I hope it remains asymptomatic and doesn't call for intervention.
But if it has vanished into thin air never to be seen again, thank your lucky stars and all your friends prayers! You all need some time off from medical and health concerns.
All the best from your friends in Iceland,
Gudlaug.

Michelle said...

Hmmm... it might be interesting to look into your biological background, but will it be more helpful? Who knows. Ask the genetic doc - they may recommend it.

How frustrating that Carson's diagnosis is so back & forth. I'm glad you'll be seeing the specialist soon.

BoufMom9 said...

Cindy,
I think looking up your biological parents will only be helpful if they can give you a cure 9which they can't). * I mean, unless you want to find them for other reasons.
My brother is adopted and when he & his wife had their daughter, she was diagnosed with GA-1 (a very rare genetic disorder). It must be on both sides of the family in order for a child to be born with it. At first the doctors were trying to get my brother to find his biological parents to get some background info, but my brother decided that unless it could change what they baby had, that it wasn't worth the anguish.
Thinking of you & your difficult decisions.
Debi

Meghan said...

The only reason I can see to look for your biological parents (unless you want to anyway) wouldn't help you much, but it may help someone else...What if they had other kids who are/might later be dealing with chiari in their kids too? It wouldn't change your kids' diagnoses, but it might provide more information for someone else who's struggling with a medical issue... Just a thought.

Jean said...

I agree with the others. It does not change the diagnosis, but you may be able to make other relatives know about this condition. I'd see what the Geneticist says.

Thats a tough decision. It was very open and kind of your mom to suggest it though. I'd pray on it, God finds funny ways of showing us what we should really do.