Hello everyone, just a quick update. Today I am 1 week 1 day post op and glad to say that I am doing way better than I actually expected that I would. I must admit it was absolutely the roughest week of my entire 36 years of life. I did wonderful in the hospital the staff was completely stunned that I was actually able to sit up the day after coming out of ICU. Coming home that Monday afternoon following the surgery that Friday was the beginning of the worst pain and agony that I have ever had to deal with. I cried for hours at a time the headaches were pure torture, the stiffness in my neck was unimaginable and I could not for the life of me lay flat on my back putting pressure on the back of my head, it felt like my entire body was having its own personal earthquake. There were days of that first week that I just could not move or open my eyes because of the pain and pressure that consumed my head and that was also behind my eyes. The entire right side of my head and face felt like it was full clear down into my ear. By Thursday I just felt like giving up because the pain and all that was going through had started to get the best of me. I felt like what have I done to myself and how much longer do I have to suffer. Thursday night I decided that I had come to far to give up and let this disease get the best of me so as I laid there in pure agony crying I begin to pray and ask The Lord to see me through to help heal me and continue to carry me through my recovery. Before I knew it I had fallen asleep and it was Friday morning. By noon time Friday the pain had started to subside and I’m happy to say that I woke up this morning finally sounding and slowly beginning to feel like myself. I say all this to let newly diagnosed Chiarians know that you are not alone. The journey with this illness is not easy by any means but there is hope as long as you don’t give up, seek, find and demand answers. Fight for yourself and do not take the first answer as the answer, the best answer or your only answer. Never let any physician tell you or make you feel that it’s all in your head mentally because its not, physically yes. Never be afraid to ask questions and seek support from family and friends. This site has been a tremendous help, support and comfort to me. I have been blessed by my family, friends, children and co workers with an awesome staff of doctors and nurses. I know I still have a very long ways to go but I will keep posting hoping that my story either good or bad will help, comfort or inspire soneone. Everyone’s recovery if choosing to have surgery is different and I don’t know what tomorrow, next month or the next few years have in store for me but I can say what ever the battle good or bad I am prepared and ready to fight.
It is so great to hear you are progressing my surgery is almost 9months out,I am still having times of set backs,one step cforward then two back.My journey started 28 yrs. ago and there was no help except for a few meds that helped with sleep,gabipintin being one of the best,certainly that was not the answer but in this thing we are willing to try anything.There’s no way to know how you will heal but just roll with the punches and keep your head up,when my symptoms start a reacurance I can pray that The Lord continues to heal me.He knows all,and He is my healer,my strength comes from Him,each time I ask I seem to get better.I am so proud you are better now and hope each day gets better.
Thank you so much Ms. Lynn Messer, my journey actually started March of 2012. My Chiari was seen on an MRI scan after many weeks of dizziness, off balance and light headness, seeing doubles and the feeling of falling over if I closed my eyes but my doctor at that time never told me that anything was actually found in that MRI and continued to treat me for vertigo. I only found out May 21st of this year when my symptoms got worst and my new wonderful doctor that I changed to in September of last year felt I had a stroke and sent me out for another MRI, long story short, when she called saying oh your MRI results are the same you still have Chiari Malformation. Needless to say, I was floored and so was she because obviously thought I already knew. Never having heard of it she had to tell me how to spell it and said for me to go online and research the illness. I was sadden by some of the things I read mainly the fact that there is no cure. From finding out things got worst fast. I found out in May, saw the NS in June had surgery on July. Although my life changed drastically in a matter of months I am so happy to have finally been diagnosed after years of suffering and misdiagnosis, family, friends and work not understanding that something was actually wrong with me. This illness has brought all of us so close together and it’s almost like a miracle that it has happened to me because I had been alone for so long and now to have everyone there for me is indeed truly a blessing. I wish you much comfort in your journey and a great success on your surgery to come.
Lynn Messer said:
It is so great to hear you are progressing my surgery is almost 9months out,I am still having times of set backs,one step cforward then two back.My journey started 28 yrs. ago and there was no help except for a few meds that helped with sleep,gabipintin being one of the best,certainly that was not the answer but in this thing we are willing to try anything.There’s no way to know how you will heal but just roll with the punches and keep your head up,when my symptoms start a reacurance I can pray that The Lord continues to heal me.He knows all,and He is my healer,my strength comes from Him,each time I ask I seem to get better.I am so proud you are better now and hope each day gets better.
I am so happy to hear that you did well in surgery. Sorry the pain has been so bad! Hopefully the worst is over. You are a very brave woman and an inspiration to us all!!
I have already had decompression,9 months ago,still having set backs,my surgeon says give it a year to realize all the changes so I’m holding n to hope that things will still get better.