First one, now two, maybe three???

Today, Keegan had an appointment with Dr. "I" in neurology. We were there to discuss a plan of treatment for his sever leg pain. We chatted about the plan, and let me tell you it was no where what I had thought it would be.
We see 2 Dr "I's", 1 in neurology and they other is our neurosurgeon. 1 doc is treating his chiari and the other one is trying to weed out metabolic myopath. Over the last few weeks, Keegan has been going in for blood and urine tests. The test that they running have come back normal thus far. The symptoms are pointing back at Chiari.

Because of our "strange" chiari family back ground, and the weird crowded posterior fossa, they are finding that our children are proof that even though they have no major herniation, they still have true chiari symptoms. With that said, Dr. "I" believes that the decompression surgery is helping our kids symptoms.

Normally, if kiddos come to Dr. "I" with the MRI that my kids have, he would not be so aggressive. Maybe put them on something to help with their symptoms but certainly not offer surgery - as we've been told. But because of our strong family history, Dr. "I" is being a bit more aggressive with Keegan.

At our appointment today, we were told that Dr. "I" is open to decompressing Keegan, again because of the history.

The metabolic myopathy testing is being done just to check all other sources before heading down the chiari road. We are waiting for 1 genetic test to come back, and if it comes back normal, Keegan will have another MRI to see where things are. Then we will talk about the "open to decompress" idea.


Kath said...

Hope everything goes ok with the testing!

Praying for Keegan and all the kiddos :)


Angela said...

Any new news yet??