Monday, February 1, 2010

neurologists and neurosurgeons

Lately it seems that the more doctor visits we have the more confusion we gain. It's funny because you'd think that more doctors= more clarity, but unfortunately the opposite is true in our case.
Carson's lack of upper body strength and his left-arm preference has been our latest mystery for the past several months. After his MRI we visited with Carson's neurosurgeon to discuss these symptoms. He felt that although Carson has a chairi, syrinx, and tethered cord, none of these issues should be causing the problems according to the MRI. The following day we met with our newest specialist, a neurologist. We were relieved to hear that he felt Carson had no additional neurological problems to diagnosis. Instead he disagreed with our neurosurgeon; he believes that Carson's issues are a result of the chiari, syrinx, and tethered cord.
We have decided to get another perspective on the matter from another neurosurgeon but who knows how far that will get us? Is this the beginning of going in circles?
Perhaps I should translate some of this; sometimes I forget that not everyone speaks "spina bifida" :) SB typically affects more than just your legs or your ability to walk. Because of the initial lesion in the spine it can affect multiple areas of your anatomy. The chiari (which controls your fine motor skills) is located at the back of your brain and is connected to your brain stem. Carson has a chiari II malformation which I believe is caused by the spinal cord "pulling" on it. The chiari can cause problems or become "symptomatic" when theres not enough room in the skull for it. A decompression surgery is performed when a neurosurgeon determines that it is symptomatic and is suffering from lack of space.
A syrinx is hydrocephalus(increased fluid) of the spine. Carson has a syrinx near his neck. His neurosurgeon will monitor the size of the syrinx by doing routine MRI's. If the syrinx grows it means another surgery. Typically either an operation directly on the syrinx or a shunt.
A tethered cord typicaly happens at the site of the initial lesion. It is the build up of scar tissue adhering to the spine. Among the symptoms are changes in the person's physical abilities. The solution is a surgery to release the tethering. Unfortunately this can become a "maintenance" thing because more surgery= more tethering which means more surgery and so on.
Obviously the decision to operate is not taken lightly. Since Carson is not experiencing symptoms that are putting his life in danger it may not mean that surgery is the right choice. Hopefully our next doctors visit will mean more clarity and above all more peace with the decisions we are faced with.
On a happier note, Carson transitioned himself from the floor into a sitting position for the first time several days ago! He is also enjoying some of the new things were learning at therapy. Lately he has learned to climb onto higher surfaces like a step, pillow, low toy, or a lazy grandpa laying on the ground :)He has become quite ambitious with this new skill. Sometimes I catch him trying to climb onto his floor heater which is about 18" off the ground. It's funny to see him eyeing objects determining if he can conquer them! I don't think I'll ever relate to the mothers who complain that they spend their days chasing their toddler around the house trying to keep them from climbing things and getting into stuff their not supposed to. I cannot wait to chase Carson!


Joanna and David said...

AMEN! I can't tell you how many times I think about Jet crawling away from me or something (not that i want a defiant, disobedient child or anything! lol.) but I think "how will I ever get mad at him for climbing onto things or running in the house?" Like you I PRAY that day comes! Sorry to hear about all your neuro-toubles. It's so hard sometimes - I find myself so focused on the positive and how well and NORMAL Jet is doing - that if something negative or worrisome pops up I think "oh yeah...we have this in our lives don't we?". In one way it's a blessing not to dwell on his SB - but sometimes it sneaks up and grabs ya and you're reminded of these complications. Hang in there! I know I'm not alone in saying "I KNOW how you feel. :)" BTW adorable birthday pic with the cake-face. lol.

Oh, and I'm not sure we've ever been introduced or commented on each others' blogs before but I feel like i know you - I'm good friends with Leigh. :) So hi and nice to meet ya! lol.

Leigh and Andy said...

hahaha, I'm glad that you guys have been formerly introduced! I'm such a jerk. :)

Em- Carson is, as always, in all of our prayers. He is the best and I can see his progress each week! Love and prayers...

HennHouse said...

I agree! I LOVE chasing Esther-Faith!

Susan M. Nelson said...

Emily, that is so exciting that he is climbing over things! Especially grandpas. (: I hope his upcoming second opinion sheds some light on everything. It is so hard not knowing the answers to our questions. Looking forward to seeing you on Monday.