Good things have to come to end....

Well it has only been 3 months and I am headed back to the neurologist! UGH! I am pretty nervous too. As I said in my last post he said to give him a call if something came up and it did... In a big way! I went to the eye dr on Friday, June 21 and as he was doing his normal tests he says both my optic nerves were swollen and he was concerned! He actually wanted me to come back for some different vision tests later. He already knew I had Chiari... I told him that I would call the Neurologist as well on Monday to see what he suggested. Well as soon as I called, his nurse made me an appt for tomorrow. That is how serious she thought is was... I know the next step, go see the neurosurgeon... I am pretty sure the inevitable has happened. I will update after the appt tomorrow.

Visit with Neurologist

Hello friends... It has been a while... In this crazy disease that is a good thing! I saw the Neurologist today and he said I am doing well. He wants to see me in a year unless I feel I need to see him sooner. He did bring up that next time he wants me to have another MRI, he wants to make it a yearly thing. I guess because my symptoms are becoming more frequent. Not headaches they are totally under control, which is great! But numbness, tingling, drop attacks, etc! He also diagnosed me with Raynaud's phenaomenon. And when I get a chance I will post the pic from my phone of my finger when it is actually happening. Such a pain (literally!) He did say that if my next MRI has me herniation at 12+mm he will be sending me to the Neurosurgeon... UGH! I guess because my symptoms are progressing... I am at at a 10 now. 7 years ago I started at at a 6-7. So that is where I am now!

Questions to ask a Neurosurgeon...

Ok so I follow a ton of Chiari groups on Facebook and someone is headed to a NS for the first time and they asked what where some questions they should ask. Here is the list and it is great!!! Just wanted to pass along!!

1. Does the herniation determine the severity of symptoms? The answer should be no. What matters is if the CSF (brain fluid) is blocked and if the brain is compressed.

2. What are the related conditions, which ones do I have, and how will they affect my surgery? There are many conditions related to Chiari. To name a few, there is Syringomyelia (aka syrinx), POTS, Ehlers Danlos (EDS), spinal stenosis, spina bifida, cranial cervical instability (CCI), tethered cord (TCS) and retroflexed odontoid.

3. How many decompressions do you do per month? The experts do 3-7 per week.

4. Is decompression surgery a cure? The answer is no. There is no cure. Surgery hopefully halts the nerve damage being done and improves symptoms.

5. What type of decompression do you do? Do you reduce or remove the cerebellar tonsils? Do you do a laminectomy or put rods in? Do you do a duraplasty? If so, what material do you use (one’s own dura, a patch from the thigh, cadaver patch, bovine patch or synthetic material? Do you do a craniectomy or leave that part of the skull off?

6. What are your post-op procedures? How long will it take me to recover? What will you do to address pain after my surgery

Not doing so great....

Many of you have been following my journey since the beginning and know that I have not had the surgery and have been putting it off for as long as possible however I have the dreaded feeling that I am getting closer to the inevitable. I have been having more and more drop attacks. 5 or more a day. Yesterday I had a terrible headache which of course causes more attacks for me. We all know that this is unlivable! Plus I feel like my memory is getting more and more sporadic. Last time I went to the dr in December I was great! Amazing how in just 6/7 months things can change so drastically!!! UGH.... Thanks for letting me vent!

Website Discovery

Every now and then I like to do a search for Chiari and see what I find.  Yesterday I did just that and boy what I found was AWESOME!!!!  Check out this link.  Then tell me your thoughts!! Sure wish I lived close enough to go see these guys!!!  Of course I could never make the trip because sometimes my hubby still thinks it is all in my head... All puns intended!!!  :)

Doctors visit

I have finally visited the Neurologist!  I don't know how long it has been and I don't know how I have ended up with this guy.  But he knows more about Chiari than any other doctor I have seen beside the 2nd neurosurgeon.  I LOVE this man!!  I saw him in November and he ordered new MRIs and blood tests.  This man talked to me face to face for over and HOUR!!  Who does that???  Dr. Orr!  Crazy thing is he specializes in Alzheimer's, but this man knows so much about Chiari it is CRAZY!!  He explained so much to me that no one ever had.  What the spinal fluid is doing, (or not doing), why grunting is so bad for me, I mean all this stuff that would have been super helpful when I was diagnosed 5 years ago.  (At least I figured out it wouldn't be wise for me to have anymore children!)

Now onto when I went back to him yesterday to talk about my new scans.  I haven't changed!!!! HURRAY!!  My chiari herniation is still 7mm, he said that as of right now he sees no reason for surgery since my symptoms are still ones that I feel are livable.  He did put me on another medication for pain, it is supposed to reduce pain and spinal pressure Indocin I am his test subject.  I told him when I lay down on my stomach I feel like I am drowning.  Not literally I can't breath drowning but that my head is filling with fluid and I feel like my brain, face, is sloshing around and I have to hurry and turn over.  He said how long has this been happening?  I told him years.  Just something I have learned to live with.  He said that was another spinal fluid pressure issue.  See I love this man.  All the other doctors have just blown me off!!

He also had a bunch of stuff tested in my blood, you know how much of my rx was in my system but I had told him I was super exhausted all the time.  Come to find out my iron was an 18.  I am now starting iron pills to see if that helps.  I will have it retested in 3 months.  So that was my visit and have I said I LOVE THIS GUY???

Chiari Carnival #7 Topic: How are you doing? Theme: Finally answering truthfully

The truth, the absolute truth...  Here goes....

I like to say I am 100%, but since we are being truthful.  That would be a lie.  Most of the time I am really good.  I mean, I am pain free a good 85% of the time.  I always have a lingering headache that I have just learned to live with.  I just don't let it get me down.  It isn't worth taking anything for because I don't want to keep taking medicine and ruining my other body parts (you know important organs!) 

Alot of the times I forget words, but people just think I am nuts or should have been born a blonde, I just let them think that.  No sense tell them that is my brain being too big for my head causing me to look like an idiot, I really am smarter than I seem right now!  I have a Masters degree!  The worst is when I am teaching (yes I teach, in fact I am an adjunct professor!) and my mind is gone, and my students are staring at me and I know exactly what I want to say and I feel about 2 inches tall... UGH!! Stupid CHIARI!! 

Do you know how many times just typing this I started typing and my fingers just kept going making up all sorts of gibberish.  It is like I couldn't remember how to type.  Oh and sneezing, which I just did, btw!!!  TORTURE!!!  My head feels like it is going to combust right there! 

That is why I said I am 85% because really I am good but there are so many quirks that when listed separately are just quirks but living with them everyday are CHIARI!!!!