More questions than answers....

            Let me first say I know I said I would write after my Dr’s appt last week but to tell you the truth I just haven’t had the energy.  I think that my appt is a big reason why I haven’t had the energy.

            I went to that appt with too high of expectations….I went in there thinking this is awesome the Doctor is going to tell me YES you have this CHIARI MALFORMATION and YES IT IS THE ANSWER TO ALL OF YOUR PROBLEMS! I know I know what could I possibly have been thinking?  It turns out I got more questions than answers…..And it all started like this.

            My husband and I got called back into the exam room and the Dr comes in with a shadow Dr.  now this always makes me a little uncomfortable and intimidated but I was so excited to be at the Neurologist after waiting 2 weeks that I didn’t care.  First thing she asks of course is Why are you here…..I start out with the original reason I was referred to this Doctor which was because of my Shaking/Tremors/Twitching….I then stated that my family doctor had ordered an MRI prior to my visit which showed that I have Chiari I Malformation.  The Neuro Doctor then asked what the Family Dr told me about Chiari and this is where the visit went south, I stated the Dr didn’t really tell me anything she stated that I should wait until I came to this appt and you would explain it.  The only thing the Dr did say was that it was nothing to worry about.  Well, the Neuro Doc then says well she’s right, (the dr then starts speaking much faster in her doc lingo) about how my Malformation is 7 mm, and she knows docs that say don’t do surgery if the herniation is less than 3 some say less than 5 and some say less than 8mm.  Then she starts saying how my herniation doesn’t look that bad because it doesn’t look like it is pressing on anything so it really is no big deal, so back to the shaking.

            WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Luckily I had prepared for just this event to take place; I was armed with my handy symptoms list as well as about 12 questions that I wanted answered in reference to this Chiari Malformation thingy as I was still referring to it.  So I actually stood my ground and said excuse me Ma’am but I did some research online (insert dr rolling eyes here) and found a symptoms list off on the Chiari associations web page and off of this list with 27 different symptoms you could be showing I have 19?  All of which are documented in my medical records, so it’s not like I found the list and started getting new symptoms!  At this point the Dr seemed a little perturbed at me and then was like you know what you want to be referred to Neuro Surgery that’s fine…..I’ll refer you, do I think you will benefit from Surgery NO! But I am not a surgeon so I’ll refer you to NS.

            We then start to go over some of my symptoms….the worst one the shaking/twitching/tremors, the dr says that that can be caused by some liver diseases, but also by some thyroid problems, she then states that some of my labs came back weird in 2009 having to do with my thyroid levels but no one contacted me and no one ever did anything about it.  She stated this multiple times about more than one test! (Awesome health care system that the MILITARY has to offer) So she was going to send me for labs, and an Ultra sound and to Endocrinology.

            Then the sleeping problem (why am I so tired, why can I sleep for 14 hours wake up go back to sleep for another 3 or 4, etc….) she states that she wants me to go for a sleep study, and to make sure I get some other test (something like MLT) and to make sure I actually see the Dr because a lot of times you will end up not seeing anyone!  Then she is getting ready to dismiss me and I am like wait a minute…..Shouldn’t I get another test of some kind to make sure that I have this thing Chiari? Or if it is pushing on my spine at all?  And then she goes Oh sure we can get you an MRI on your spine if you want?  And I am thinking SERIOUSLY? SERIOUSLY?  Umm yeah I would like to get that done that would be great!

Well to close this drama filled posting up here is how I ended up having more questions than answers:

1.      I have to get 2 more MRI’s one on my T-Spine and one just on my Spine

2.     I have to see a Neuro Surgeon (which I requested)

3.     I had to get 8 vials of blood taken to redo tests that were done in 09

4.     I had to get an Ultrasound of my Thyroid

5.     I have to see Endocrinology

6.     I need a sleep study

7.     I will need to see a sleep specialist

AWESOME! I went in thinking this is it! The Answer I have been searching for and I come out with a big list of things to do, and other things that may be wrong with me! Wish me luck!