First off, I just want to say that I am very sorry that I just don't have the energy to be a front-runner in the group... I am extremely thankful for those of you that are here for everyone including myself.. I just wish I could GIVE the same amount of help that I receive.... I lurk alot of times but I don't include my thoughts or experiences because of the amount of time it takes to type.....
I have been having a terrible time with things.. I am mad, wait no mad is not the word, I am PISSED OFF (sorry for being blunt) at Dr. ______ for everything.. I really feel like most of this is his fault! I mean what kind of Dr send a patient home 11 hrs away knowing she has a leak and not telling her about it? And what kind of Dr calls a patient once they have returned home and is in terrible condition and the only place to go for help is the local ER and when they put you on steroids, calls you up and demands that you stop taking them and continues to insist that you should just lie flat and you will be fine?? I'm so stinking mad about all of this!!! I have never seen or talked to him again! His nurse gal or whatever she is, tries to contact me periodically through e-mail to see if I will sign a waiver for his research form and I just ignore it... Mostly because I was taught that if you don't have something nice to say don't say it at all, and really i mean I bet i wouldn't even be able to actually talk to him and even after giving him a piece of my mind I know I won't feel better cause at the end of the day I still feel like crap!!!! worse crap than before surgery and a second surgery to repair HIS LEAK he left me and a drain to get rid of the meningitis I got from the leak... I have since seen a local NS who doesn't give a rats ass about me... He doesn't care to have any of my medical records or know anything about prior to the day that I went to see him and when I had expressed my concern for about the pain I was having (head, legs, feet ect.) He said to me "I'm a NS I don't fix headaches!" and thats when I realized that he probably isn't the right doctor for me.... So NOW I'm seeing a NL (self proclaimed Headache Specialist) and he is nice and totally down to earth and seems to be willing to try whatever it takes for me to get some relief from this damn headache! However, he has diagnosed me with "Chronic Migraine and/or New Daily Persistent Headache" needless to say, I'm not happy with the "generic" diagnosis.. I have been treated for Migraines as long as I can remember and you guessed it, none of it has helped which is obvious cause I let some ding dong hack into my head... I mean I really sometimes just want to say to people/dr's "do you really think that it was fun for me to have 2 brain surgeries? I mean do you really think that its a whale of a good time to be in the hospital miserable and in an enormous amount of pain? " I mean its like they think that we haven't tried almost EVERYTHING if not everything to get some kind of relief but to no avail..... Sorry I went off on a tangent there, so this guy (aside from his diagnosis) seems to be ok and I plan on continuing to see him but, I really would like to be seen by a knowledgeable NS and the reason I say this is........ The few symptoms that went away, are now coming back.... and the headache(s) is/are just getting worse and now I am having terrible neck pain and Primary doc says "well its a little spongy back there" which kinda makes me think I may have sprung a leak again, and I can feel myself that it is puffy..... also, the follow up MRI that I had to almost BEG for shows that there was bone taken from my skull and the back of C1 but also notes there is NO change in regards to the position of the tonsils and the space for fluid to flow... and to be honest, I don't want to dink around with anymore Jacka&%$ around here that don't know there head from there ass! I'm sick of PAYING someone to treat me like crap! So I think that I am going to see about getting and appointment with Dr Henderson... I really feel like he is my last hope and I have told myself that this is it! I will NO LONGER be in search of someone to help me and I will just suck it up and realize that this is all the better it gets.. I used to be able to work a full time and part time job (both physically demanding) and now its hard for me to work part time... I mean my house is a pig sty ( not even joking ) and thankfully my husband is understanding, I know he would really like it if I were able to keep it cleaner and do more around the house but after working 4hrs and taking care of my 2yr old and 5yr old I have absolutely NO energy, no desire to do anything but SLEEP... I am deathly afraid that someday just one day my husband will wake up and think "man this gal is a lazy piece of work, I'm outta here and I'm taking the kids" I just don't know how or even IF I would be able to function without him or my kids.... And on top of all of this I have other NON Chiari related issues.. I'm not even 30 and I will most likely be having a hysterectomy at some point this year because of my periods.. they are so heavy and extremely painful that I miss work and just lie in bed litterally in the fetal position wishing i was dead... Ive had a laparscopy because they thought I had endometriosis but they didn't find anything and we have tried all kinds of things to just lessen the pain but nothing has helped infact it just gets worse and worse.. AND my primary doc basically called me a fatso! She said "jen you have gained 5lbs since I seen you last, you really need to watch your weight and try to lose a few pounds" Well hello lady, do you think i like to be fat? Do you think that I just sit at home on the couch wathcing soap operas eating twinkies all freaking day? I mean really if I could just go and RUN or BIKE or WALK for that matter I would don't ya think? Anything that raises my heart rate raises the pain in my head, which kinda makes it a little hard to exercise.. And she is suddenly all conservative now and has told me a couple of times NO MORE SURGERIES for anything, you have been through enough! Well, I would like to be as pain free as I can be and if that involves a hysterectomy, breast reduction, or another surgery on my head then I am gonna do it! I don't know if I can really actually live the rest of my life this way, I have been in constant pain for more than eight years and intermittent debilitating pain for about 8 years prior to that.. I am willing to do most anything just to get some relief and reclaim a life that was once mine.....
Thank you for letting me vent! and again I am very sorry that I have not been the greatest member of this group, I wish I had more to offer but at this point I don't, I don't even have the energy to offer to my family who needs it most..
I hope everyone is as well as can be expected!
Your Chiari Freind
Jen