I am scheduling my decompression surgery this week when I go see my NS. He is a Chiari specialist so I feel very comfortable with him. It's all my other medical problems I'm worried about. I am trying to rest up and take iron supplements to get my hemoglobin up to normal until surgery,w hich I think will be the beginning of November. Any advice or stories you can share about your surgery or experiences? It would be helpful. Thank you!
Melissa
Well, my appointment was 2 days ago and my NS and I have decided putting off surgery for the immediate future is the best thing to do right now. He is very concerned about if the surgery will end up giving me a poorer quality of life than better and there's more they need to find out about some of my conditions before I end up in surgery. I am very relieved to tell you the truth, because as bad as I feel on my bad days right now, I am terrified of how badly I could do after the surgery with not only my Chiari symptoms but problems with the rest of my disabilities, like my heart and breathing. Recovery period for most ppl is like 2-6 weeks, for me it will be more 4-6 months and that's if I survive!! Anyhow, I just wanted to let you all know that my surgery is not looming on the horizon for now but I would still be interested in finding out about your personal surgery stories and experiences. Thank you so much!
Melissa,
I am so happy for you. You have a very wise NS !!! I have decided not to tell Members my Chiari Journey any more, unless they are in a similar situation. It has been very extreme & difficult. The only thing I will say is regardless of what NS's tell people everyone has a different recovery period.
Please keep us updated on how you are doing,
Tracy Z.
Melissa,
I was glad to hear you are relieved and it sounds like you have a very good doctor. Are they going to do further tests? Many doctors take the wait and watch approach and it seems like it is the wise choice in your situation. You can always reacess if things change.
Everyones Chiari Journey is different. Like Tracy's mine has been a long and difficult one. When I first started with the serious symptoms it was 1996 and it took almost 5 years to be diagnosed. They didn't know as much as they know now. Please keep us updated. Sending you prayers.
Wendy
Melissa said:
Well, my appointment was 2 days ago and my NS and I have decided putting off surgery for the immediate future is the best thing to do right now. He is very concerned about if the surgery will end up giving me a poorer quality of life than better and there's more they need to find out about some of my conditions before I end up in surgery. I am very relieved to tell you the truth, because as bad as I feel on my bad days right now, I am terrified of how badly I could do after the surgery with not only my Chiari symptoms but problems with the rest of my disabilities, like my heart and breathing. Recovery period for most ppl is like 2-6 weeks, for me it will be more 4-6 months and that's if I survive!! Anyhow, I just wanted to let you all know that my surgery is not looming on the horizon for now but I would still be interested in finding out about your personal surgery stories and experiences. Thank you so much!