Carries Chiari Connection

 I have recently lost hope in doctors more so lately than ever! I won't go into complete detail about that (I will save that for a rainy day)but I feel more compelled to listen to someone who has Chiari or has been in the Chiari loop for a while than a doctor. Here's the problem: Last week I started having pressure in my head in various places of my head. It wasn't located in just one area but did seem to cause upper shoulder and lower back neck aches with it. By the late morning (and I was at work)my head was hurting so severe and I now had horrible sensitivity to light and could not tolerate working and trying to control the pain. I walked to our nurse and asked her to help me and that I needed to lay down in the dark or something and she checked my vitals which were fine and let me lay down. She also gave me a couple of ibruprophen which never helped at all. After laying in the dark in the room for about 40 minutes she came in and told me that she was very sorry but I needed to decide what I was going to do. Honestly you shouldn't stay in the nurses office for more than 20 minutes before deciding either to return to your dept. or go home. I told her that I really needed to leave and that there was no way that I could deal with it anymore. She had me call my husband to come get me because it was very obvious that I was unable to drive. He came, sunglasses for me in hand, and took me home because he too feels the same about the doctors. They wouldn't do anything for me anyhow. After going home I had him give me as much pain medicine as I would be allowed and a cold washrag. (SEE PREVIOS BLOG FOR DETAILS OF THE REST OF THIS STORY...lol..sorry but it's not easy to keep rewriting the same thing over and over...lol and you can pick up after that right here....>>>>>>>>>>>>>>>>>>>>>>>)

I NEEDED to go to work Friday and did. I managed to get through the day but over the weekend I developed a weird symptom that has me baffled and is actually the whole reason for my post. My right eye has been feeling as if it is going out of focus by something "inside" of my eye moving or some kind of pressure behind my eyeball. I'm not sure exactly if that is the correct way to explain but I have no other way to do it. But every so often over the weekend my eye would go out of focus and I would feel pressure behind my eye. By the beginning of the work week it was doing it more frequently and was hurting. It was almost as if my headache had moved into my eye. Today is Thursday and I am now having this "eye pressure/out of focus" sensations sometimes 8-10 times an hour. Some hours go by without any but by the end of today I would probably say it's happened over 50 times today and it is so annoying, troubling, and is concerning me. I work in a PC Board room and have to put tiny parts on boards and look down a lot. I had a horrible time trying to do my job and noticed that sometimes I wasn't seeing the way I should with that eye. Almost as if I were switching #'s or letters like someone with Dsylexia. I am trying hard to be accurate in how I describe it because I am so sick of running to the doctor or hospital and being sent home because there is nothing they can do and there is no "reason" for my symptoms. BUT...if this is serious...I don't want to risk my health. Please reply if you have a pretty postive idea of what it may be. Also, if you can please send any links that might support the answer so that I can read up on it! Thank you so much ahead of time! I am really concerned and very aggravated with this!

~Carrie

(Also, posted in the blog/board of CCI (Chiari connection International in which I am not affiliated with in any other way than being a member just like the general public but I am a big supporter and have had their link on my websites side bar for almost as long as I've had this site.)

I have no idea what to do anymore when I get a really intense headache/pressure! Mine, this time, started Tuesday morning and even though I tried to tough it out I ended up having to call my husband to pick me up from work by 10am.  We went straight home and gave me my normal dose of meds for "bad pain" but it didn't do much.  We chose not to go to the ER only because we've been down that road before and it's always the same results! No help, nothing they can do, nothing shows on the scans, and of course they understand our frustration but cannot do anything at this time~!!

So I tried for 2 days to make it through but that first night almost changed my mind because I could not stay asleep because I was up throwing up every two hours and there was nothing that would stop it.  I tried phenegren (might have spelled it wrong but its made to stop nausea and throwing up) and it didn't work.  So I really thought maybe the hospital was my best bet....but again we remembered the many times we've tried that and stayed home to battle it AGAIN.  By the end of the second day...I couldn't rid the pain and my husband just couldn't bare it another minute and we packed up and drove all the way to Miami hospital hoping that this hospital was better and we would receive better help.  Well, they were nicer and more sympathetic but couldn't help and all they could do was hook me up to an IV to get fluids in me along with some medicine for pain.  They did a scan but again it showed nothing (as most catscans wont) so they sent us home and here we are again.  I don't know what to do anymore but I can't keep going on this way! I missed 2 and a half days of work and it's only February.  I can't see how I will ever make it through a whole year without missing too much work due to my headaches and pain! I am hoping for a miracle.

Have any comments about this site and want to express your feeling or just tell us your story?? Please share....

It's been a rough year, and with that said I've thought about the possibilities of there being many people in the Ohio area that might be feeling the same way as I have.  I would like to know how many people in Ohio would be interested in having a Chiari Support Group once a month (more if necessary) in Ohio...which will probally change from time to time to accomodate others who have trouble driving to the support group site.  I would like to see how many people we can get together and then talk about when, where, and the details.  Thanks so much!

I think that I would benefit a lot to be able to share my concerns and how helpless I tend to feel from time to time.  Chiari, in my opinion, is one of the most misunderstood disorders where doctors and health care providers lack so much knowledge and therefore cannot honestly give us the feedback and support that we need that we can potentially find with one another.

Let me know....and you can email me as well: Carriebear31@msn.com

Please take the time to tell everyone about your walk in your state or about your experience while attending one of the walks....Please let us know who, what, where,and when...and let us know how it affected your life and how you feel it has done for awareness!

Please visit my page: Events and Reviews to learn about my walk in Urbana Ohio...Thank you...

I was diagnosed with Chiari in February of 2007.  My size of my herniation, which really has no revelance, is 10-11mm. (Recently told it is actually 16mm)  I also have a herniated disc in my lower back, a minimal bulged disc in my cervical spine, degenerate disc disease/facet anthropothy, arthritis, and mild scoliosis. 

I felt very helpless with learning of my condition at first.  Then I began to think of ways to turn this into something positive.  I belong to a support group online and read the posts everyday.  In reading these posts I came to realize that the majority of people with Chiari are interested in finding other people that are going through the same things. People want to know where others with Chiari live, what their symptoms are, their age and gender, and other facts to connect and try to find peace of mind.  With that said, that is why I developed this site (which will contantly be going under construction until I learn more about web disign). 

I know that I get comfort when I talk to someone who shares my feelings and believe that others find comfort with one another as well.

Please use this site to connect with other Chiarians and other Chiari sites that can help you find support, get educated, educate others, and find comfort in knowing that there is someone out there just like you!

Love and hugs to all of you,

Carrie