Wednesday, April 17, 2013

Updates on Me

Oh the storms we have to endure. or I have had to anyways. From Erb’s palsy or brachial plexus(something I was born with), to Brielle’s mystery knee problems, to down syndrome, to hip dysplasia, and now to chiari malformation. and everything in between.  I've had my share of trails and tribulations with 5 different conditions under my belt now. I expect it now though. But with each one it has been a life changing condition that has changed me for the better. and yes right now I am in the midst of the storm and am not feeling that great but God will bring me out of it one day in his time. The sun will shine again. There is a reason why God makes us go through these storms. We just have to trust in his plan.
(This blog is about my life, family, and Avery. I originally started this to keep everyone updated on Avery but came to realize that I didn’t want to just focus on Avery and Down syndrome. This is my personal blog and I blog about anything and everything that affects us as a family not just Avery. So with that being said there are going to be some posts on me..and my journey through this diagnosis and living with it..just keeping it real. Maybe one day I will tell about my struggle and dealing with my erb’s palsy that I have had since birth too..who knows. )
To read my first post about my diagnosis..go here
So after my first MRI my neurologist ordered another MRI a spine CSI flow study to determine how much blockage was going on. The nurse called me back and told me it came back normal. So I was thinking that  my chiari cant be that bad.maybe. So when I went back to the neurologist at the beginning of March I took with me the cd that had both MRI’s on them and she went over them with me. She told me that my Chiari was measuring 3.8mm. Here is a picture. On the second one you can see where they are measuring it.  IMG_3926[1]
So if u look at the next one you will see where they have measured it and you will see some of the cerebellum below the line. and you will also see a “drape” in my spinal cord. compare the two..that is what is causing all of my symptoms. You see it being compressed together..being squished so to say.
So after my dr looked at the second mri images she told me she does not believe that it was normal. she believes that there is blockage. that my spinal fluid is being blocked. So she told me that I had the weekend to find a dr that was specialized in Chiari that I wanted her to refer me to and let her know on Monday.
I actually had an appointment with another dr that was in Hendersonville, NC that was supposed to be really good but when I got my welcome packet in the mail it came with court papers. It all seemed to risky to me, and they didn’t take my insurance and I would have had to pay $900 just for the first visit. and hope my insurance would repay some of it. so I canceled that appointment after I just didn’t have a good feeling about it.
So after leaving the neurologist I went home and put my fingers to work. I was in for the LONGEST weekends of my life. I researched..and researched Dr.s. I had it narrowed down to Colorado, or Wisconsin to a Chiari center. and then I just felt peace about the dr at Colorado. and I left it alone. and so I called the dr on Monday morning and told her that is where I wanted to go. Well then  I found out it takes along time to get in. and remember I only have insurance until the end of July. (bc of Jared quitting his job and losing the insurance through his work. so I went on cobra for 6 months) Can I just say  I was so stressed out about this.  I didn’t know if I should go closer to my family or closer to my home. went back and forth over and over again.
So back to the computer I went. back to the fb chiari groups I went. asking questions. reading everyones posts. and so it all lead me to a Dr. Grant in Durham, NC. He is with Duke. He is spoke very highly of. A LOT of people love him. But he is only a pediatric doctor and  read that he only sees adults on a case by case basis. So I emailed him directly and stated my case to him and he wanted to see dr.s notes so I had my dr send them to him and he agreed to see me. So my first appointment with him was a month ago...
I drove up to see him..made my appointment in the middle of the day..bc it is a 3.5 hr drive up there and then to have to turn around and come back home but I figured it was worth it bc I knew he was experienced with Chiari. He went over my MRI’s also and said that he wanted me to have a full lumbar MRI done basically to rule out Tethered Cord and Syringomyelia which go hand and hand with Chiari sometimes. He also wanted to get a spinal tap done by his doctors up there at Duke. and the point of this test would be to test for a CSF leak in my spinal cord, to check if I have to high or to low pressure in spinal cord and to see how I adjust to pressure change. He also told me that in the end it would be up to me if I was going to have the decompression brain surgery or not. It is up to me and how much it is affecting my daily life.
I really really liked him..and he def knows Chiari..explained Chiari very well.and spent lots of time..didn’t I went home thinking someday soon maybe  I will have my life back.
Two weeks later I had my full MRI lumbar scan which was last week.  Which is an hour and half scan bc it is 3 scans. hello…talk about almost not surviving that one. table moves back and forth and when things start going numb you cant move. so by the end of it my legs were numb and I couldn’t even feel my bum. and my head killed from laying on that flat surface. walked out of there with a start of a migraine. nice.
Got appointment at Duke University for spinal tap its next friday. at 8am.
Monday dr (my sc neurologist) calls me and tells me that I know you have an appointment with her in May but she wants to see you as soon as possible.  I said ok. did she get the results back from my MRI yet? the nurse tells me yeap that is what she wants to go over with you. when can you come in..I said anytime this week..ok see you tomorrow morning. ok then.
Talk about anxiety through the roof in a matter of seconds. I started freaking out..what did they it good or is it bad??? lets just say it was a LONG 24 hours.
I went to go see the dr on Tuesday then and she told me I have a CSF (Spontaneous cerebrospinal fluid)leak up in my neck. which might be a good thing..don’t know how it got there..but the MRI scan picked it up which is unusual bc usually MRI scans don’t pick them up to much. I asked her what are some of the symptoms of a CSF leak …and she told me a headache laying down ..and goes away when sitting up. double/blurred vision. and a few other symptoms. So I now have a chiari malformation AND a CSF leak. Great. how can this be a good thing. She told me that if might make me better quickly but the only way to tell is do a epidural patch. Which  I will get an epidural and they will take my blood.and then insert it back into my spinal cord at the lower part of my back and it will supposedly fix the leak that is up in my neck. does that make sense??? didn’t think so..BUT she told me I will know with in 24hours if most of my symptoms are coming from the CSF leak or from my Chiari. She then went on to tell me that potentially the leak could cause blood clots in brain..yikes! scary! but no evidence of that bc she went back over my MRI brain scan and didn’t see anything.  But then she told me not to go ahead with appointment at Duke for spinal tap she said no. So she said she would email the dr up there at Duke. Dr Grant and see what he says and then get back to me. Well  I decided to email the dr myself bc I had his email and see what he says whether or not I should still come up on Friday or not. I wanted to hear what he had to say himself..bc I really trust him and what he thinks. He knows Chiari.  He told me yes to keep my appointment.
As I went home I reread over the report from the MRI scan and noticed something else on it that the dr never told me about so I called my mom and read to her the report. Her being a radiology tech comes in my favor sometimes.  Here's what we came up with…I have a slight curve scoliosis to the left… I was tested for scoliosis as a kid and dr said everything loooked fine then.  My mom and I figured it was probably from all the over usage and lifting that I do in my left arm to compensate for the right arm that it is starting to affect my spine somewhat and pull my spine a little bit to the left. I also have a disc herniation at t7-t8. No wonder I have had some back pain.  
How have I been feeling??? Well you don’t really want to know. Miserable. Im in pain I have head pain in the back of my neck .and yes I have to take something for it every day. I have to. I don’t have a choice. I wont get out of my bed if I don’t. so its either take something or stay in bed. and well with 5 kids..staying in bed isnt an option.  I alternate between tylenol, advil, aleve, and excedrin. and I have found biofreeze to work a little bit if I spray it on the back of my neck. They arent migraines bc my migraine medicine don’t even touch it.its pain..cruciating pain. my head feels like its going to pop or like it is in a vice grip and it just keeps getting tighter and tighter. and as the day goes on it gets worse and worse..I have my good days and my bad days and then my really bad days..and the good days are getting fewer and fewer..but when they are I am sooo busy catching up then. still have all the other symptoms that seem to be getting worse as the day goes on. like blurred vision..vertigo…tinnitus….numbness and tingling in hands and feet….cant sleep….bc when I lay down the pressure really builds up on the back of my head and really hurts just from laying down. There is supposed to be a pillow out there that is supposed to be really helpful but just havent looked into it too much. Memory confusion/loss..getting really bad. in fact got worse mother of the year. Destiny reminded me right before she left for school about her terrific kid ceremony that afternoon..and she came home from school and said so much for going to the terrific kid program mom…I FELT. HORRIBLE. in fact I went straight up stairs and just started crying and had a really good cry..and then I started getting so mad..I HATE CHIARI! and I HATE the control it has on my life. I hate that I cant remember things or even process what some people are saying sometimes..brain fog. Chiari is one of those disease where you look just fine on the outside but its affecting the inside and people can be so non understanding. they just don’t understand bc on the outside you look fine. come live a day in my house.ask my kids. ask my husband. see if I am fine. see if I am handling everything just fine. we all hate what it has done to me. But God has gotten me through every day so far. and he will continue to be there and be my strength when im so weak. All I can do is take one day at a time. and pray for a good day every day. and just not take the good days for granted and get through the bad days all with Gods help. 
So on this friday I am going to Duke University in Durham, NC (actually Thursday night we are heading up there bc apt is at 730am on Friday) to have a CT myelogram to patch the CSF leak. They then will screen the entire spine to check for more leaks The neuro radiologist will do a blood patch (to fix the leak) at the time of the myelogram and come home afterwards. not sure how long it will take or when we will get home. They told me I had to have someone come with me bc I wouldn't be able to drive back home so Jared is coming with. So after that with in 24 hours I will either be a new woman or the same miserable in pain woman. Praying for the the first one..bc I really want this to work and fix all.ok most. of my symptoms so I don't have to have the brain decompression surgery.


Jenny said...

Oh wow, what you are going through sounds horrible. Praying for you that the procedure tomorrow works.

Pam said...

I'm so sorry to hear about everything you are going through and that you are in so much pain. Sending prayer's that the procedure will work for you and that your pain will be taken away
...hugs :)

Anna Theurer said...

Oh goodness. Thanks for the detailed update. I just cannot believe this and I can only imagine the pain you are describing. I have seen both Chiari type 1 and type 2 when I worked with kids. Never met and adult so I have no advice--just prayers and support. Good luck on Friday. Hugs!

Anonymous said...

hi kristi - i don't remember how i found your blog, but i've been keeping up with your family for awhile. the author of another blog i read,, has chiari malformation and had the wsurgery to relieve the pressure in her brain. she wrote about some of her struggles on her blog. i just thought i'd pass it along as another resource for you. i'm hoping you can get some relief from the pain soon.


Laura said...

You have been in my daily prayers. I hope a pain free life is in your very near future!

Julio Loose said...

I'm trying to wrap my head around that hour and a half MRI scan. I could barely get through 30 minutes, but I can't imagine going that long. That aside, I'm sorry to hear about all the trouble that you've been going through. I'm looking at the bright side that you've found an expert on the disease whom you trust, so you can work together on getting healthier. Thanks for sharing, Kristi, and I wish you all the best!