I am back and I want to help you deal with this as much as I can. I think you can and will understand my point of view. We, both of us, are struggling with the same issues. You are asking what, why, how? I was acting in ways that did not help my situation. I am going to go through this with you like I helped my students when they were learning about something new. Before I do this, I want to give you some background on myself. Some of it is quite obvious from my profile and other things from what I have posted on other discussions prior.
First off I am 40 years old (not much older than you) married with 2 daughters ages 8 and 3, one more is on the way. I spent eight years in the Maine Corps prior to marriage, college and kids. From 2001 - 2008 I was a state certified school teacher [juvenile delinquents] (most of it was teaching anywhere from minor offenses such as shop lifting up to and including arson and murder). Naturally I got stressed out and looked to the public school system to no avail for a job. So from May 2008 to May 2010 I was working as a customer service rep at Verizon Wireless and started going back to college for my masters degree in IT (database management with web design) and working to obtain A+ certification. In 2009, I get into a one vehicle car wreck; I hit an icy patch on the road and dropped down a 15 foot embankment. Diagnosed with bad back (whatever the proper medical term is) and undiagnosed whiplash. I was able to return to work but was having problems vision, constant pain, numbness, etc. However I felt productive again and I was working to provide for my family, yea me right? That is what I thought until May 2010 getting ready for work I collapsed and blacked out woke up very difficult to breathe and crippling chest pain. Go to ER, do stress test, finish with a cardiac cath. After this and telling my old PCP and old cardiologist about the symptoms I was having. I was scanned, x-rayed, poked and probed they came up with POTS. During this time I was about to all specialists; gastroenterologist, pulmonologist, cardiologist, neurologist, chiropractors. All I didn't see a proctologist or oncologist. I was told by my cardiologist that my numbness, shortness of breath, blackout etc, I would have to learn with because he had to learn to live with migraines. Talk about a stretch in comparison. Anyhow got new PCP and cardiologist and I had a weird blackout spell (or as some here have told me a white out spell). Well I went down an all I was able to do was hear. I could not see, talk, move, nothing. I told my PCP he referred me back to the NL who ordered another brain MRI. This MRI finally in Nov 2011 showed the CM greater than 5mm that may be of clinical significance (is how the report read). PCP says CM and tells me about it. We, wife and I, do our own research as well. We made appointments to see 2 NS one at John Hopkins and one at UPMC. Both are leaders in CM. Both tell me that CM is not my problem because it is too small but they cannot explain my symptoms except to say I have neck stenosis. NS at Hopkins orders a cine MRI to check flow of CSF. Blocked in the posterior diminished elsewhere, been trying for about two weeks to have his office tell me how to proceed since this NS told me that I would not have any blockage and he would be very surprised if I did. Well surprise I have blockage and tell me what to do. Every time while I still wait to keep myself sane I keep thinking of the line "Bueller,...... Bueller,...... Bueller....... So that is where I am at right now and trying to convince the NS that the CM is a major problem for me.
Now for me to try and help you to stay sane and keep yourself together. Let’s look at what you wrote and I will try to answer it as best as I can.
Yeah.... angry. MAD. This is normal, I am glad you are getting it out and venting it. Why did this happen to me? How did this happen to me? How did I walk thru 35 years not knowing, and have it just rear it's ugly head and take me down in an instant? This I cannot answer except tell you what has been told to me. You were more than likely born with it and look back with your wife to see if something happened. I believe it was Abby who posted some links showing that minor traumas could have been the trigger, like mine was the undiagnosed case of whip lash that the NS @ Hopkins told me that I had. What do I do now? This one is entirely up to YOU, but you must recover first. You may be able to go back to doing what you were doing maybe not. I was told try but do not give up on yourself. Easier said than done. What if I can't go back to work? Men take care of the house, they provide. What the hell kind of man am I now? If you cannot return to your old job what else is there that you like to do but never had the time. There are programs out there that will help you. I know that with SSDI you can still work up to a certain degree, not sure what it is. If not again what else can you do, right now I cannot work so I am trying to help myself here with this group while I try to help others. I am starting a local support group to help others. Are these paid position that I can support my family on, NO, but a man must provide more than financial support to the family. Yes I know it is ingrained into us as boys that success and happiness are how we provide and take care of our family. I think the more important question is how is your family reacting right now? I know your wife is very concerned, she is worried and scared but she wants to support and help you in any way she can. It DOES NOT make you less of a man to need help or TO ASK FOR help. Contrary to the belief, it is MORE MANLY to ASK for help and to RECEIVE the help. Why did my vision get screwed up in a day.... and it isn't any better now post-op? Chiari effects all of us differently physically as well as emotionally and mentally. Coming here is a great place to start. The people here are dealing with it prior to surgery, like me or post surgery like you, to the full gamut in between. All of here though have made a commitment to help each other and help ourselves. That is where it all begins. Why is my wife sticking around, HOW is she sticking around? To me this is an easy one because I ask my wife almost every day. She tells me plain and simple “because I love you and 10 years ago I promised before God, my family and you r family and all of our friends o be there in sickness and health, richer or poorer. This is a time where I can help you because you have helped me, sometimes without even knowing it.” That is what she tells me. I’ll bet if your ask your wife she will give you a similar answer, even if she is overwhelmed, frustrated, mad, and angry as you are now.
Sorry it is rather long, but I would rather be long than see someone go down that road I was on. If you need to and don’t want to post it here call me. 724-■■■■■■■■ I will talk to you or you can yell and scream at me until you feel better. I as well as many others, we want to help.