Well I have not posted on here since my surgery and just need to express my self somewhere where people understand and don't think I am just crying why me. I have in the past 4 months been put on medical disability, lost my health ins(thank god for state assistance), broke up with my girlfriend and moved. To say its been stressful would be a understatement and as you all know stress is not good for our condition. I have meet with several doctors yet again although for some reason my doctor that did my surgery wants nothing to do with me (dr.heffez @ chairia center Milwaukee WI.) to say that blew me away was a understatement. After I found a doctor I liked I soon found out she was retiring. Now after another doctor and new round of pills and like usual no good results and the surgeon telling me it would be more extensive to repair and fix my issue now with all my swelling and scar tissue inside that it would cause more issues if I had yet another. I have been passing out when I cough a few times and the pain I get drops me to one knee when I do cough, sneeze, yawn, turn my head to fast ext. I am so scared to become a addict with pills and try to stick with my flexeriol (muscle relaxer) that is strong but really does not do anything other then knock me out if I take a few. I don't want to take a narcotic but I know thats where my life is heading and I feel like I would be finally be saying ok I give up when I do that. Not that I feel its bad to take them i just am scared. Its hard enough to stay involved in family and friends life the way it is not using them and when I do I feel I'll turn into some guy that never leaves his house and just pops pills all day. Lol.
Really I just am at one of those points I am sure we have all been in where things just get overwhelming and I am not sure what do to anymore. I am sick of doctors not really understanding me when I say I'm in pain and how it makes me completely shut down. I could not work a 40 hour work week where for the past 25 years I have worked and never missed a day other then after I was diagnosed with this. I am now being told I have to apply for social security at the age of 38 and my father is teasing me because he just filled last year lol. Family what can I say. I don't know where I would be without mine I am truly a lucky man. Idk I am sorry to rant just needed to scream and complain to someone. I truly hope everyone here the best and wish there was something I could do with my life to help others with this. Blasaahhhhhh. dont know u but luv u all!!!
I feel your pain ! I have been threw about everything u have. I am 35 I had to file for my disability I hated. I worked 70 hours a week loved my job now I cant even tie my own shoe. My doctor got rid of me too told me that he couldn’t do anything else for me. So I started looking for a new Nero and have been turn down by 3 different ones. I have a very bad surgery and a lot went wrong. I am on a lot of strong meds that don’t do nothing for the pain. I just pray that I find a doctor that will see me.
I really relate to all you say. I had to retire fro m teaching way before I was ready. I’m on SSD and a pension. My symptoms keep me pretty much housebound. My friends have moved on and I am stuck in this miserable place. No medication helps my headaches or other symptoms. I am very depressed and am on antidepressants and anxiety drugs. Nothing helps. Only people who have this condition, so I’m glad to have found this forum to listen and to share.
I to have had a decompression surgery 4 years ago that failed.
I’ve been to headache specialists,neurologists, and neurosurgeons. No one can help me.
I’ve been seeing a pain specialist ,who keep adding pills to take. There is nothing anyone can do. I’ve suffered trauma and nerve damage to the back of my head, due to the surgery. I’ve had shots in my head to try to help my headaches. Nothing seems to help. I don’t know where to turn.
I am very sorry to hear what you are going through and you came to the right place. I can understand the battles with pain, concerns about medications, and trying to find and get good doctors that understand what we are going through. You have been through so much and I am sorry that you will go through more. Try and stay positive and your ability to keep up the positive attitude despite the challenges is very personally proud and motivating to me. In what might be your weakest time, you are supporting and motivating a fellow chiari warrior who is in pain tonight. God bless and hang in there.
Hi Paul,your story saddened me so I felt I needed to respond to you.I had decompression surgery 21 months ago and have new and old problems tormenting me but the main thing I wanted to share with you was what my Dr(now sadly retired) said to me.I was only diagnosed with Chiari in 2011 but have been a chronic pain sufferer due to degenerative spinal disease which has caused my pelvis to twist.After I was tried on different pain meds which failed to give relief plus different spinal and sacro illiac blocks I was put onto an narcotic pain relief which worked quite well although I still have breakthrough pain but I can cope with that,I said to my Dr I didn't like being an addict and he gave me a rather forceful talking to about the difference between an addict ,who takes drugs to get high and a chronic pain patient prescribed drugs to manage pain,said he NEVER wanted to hear me call myself an addict ever again.That was back in 2000 and I'm still taking those meds.I'm in a wheelchair but I get to look after my grandkids,,went to an outdoor Country Music Concert last month,live on my own etc,etc.When those drugs kill the pain you definitely don't get high and if they get the balance right you can enjoy things like other people do.As long as they don't put you on too many different drugs you will probably be able to at least enjoy life a little,its a new life but hopefully you can get some pleasure out of it.Don't pass up the chance of pain relief because of the type of drug,you can always be weaned back off it if you don't like it.Good luck,hope you can get some relief.
I am not allowed to take anything for pain due to also having afib. I’m only 37. It’s hard living with this condition and I know what you mean about filing for disability. I also had to file last year due to headaches getting so bad they are causing a blindness in one eye that lasts for days. Hang in there. Somewhere out there is the right doc and right med to help each individual with their own unique case of this condition. It might take a little bit to find it but somehow we all might.