My emotions are all over the place. Last year, I was diagnosed with Chairi I and have a very long syrinx which goes over half way down my back. My worst symptom at that time was headaches. My NS and I agreed to wait and watch. In April I started loosing strength in my left arm. I can still use it but can not always raise it up over my head. My left hand also gets ice cold. NS in Louisville thought we should go ahead with surgery so we did. I considered getting a second opinion at Mayfield Clinic but decided if I was going to have surgery it would be easier on everyone if I had it in my home town. My NS is considered one of the best in Louisville. I spoke with many friends in the medical field who said this is the doctor they would choose.
Long story short, had the surgery and six months later syrinx has not changed. Headaches are a little different and not quite as bad. I went for the second opinion (which I should have done before) with Mayfield Chairi Clinic. Even though I was told my tonsils popped back up in place after the surgery, I just found out they are still down causing pressure. I had my first ever flow study yesterday and flow is blocked in two places. New surgeon wants to redo the first surgery, but “do it right.”
I am lucky that I have only been dealing with all this for one year. My headaches started 4 years ago but I thought they were caused by stress. I hate to put my family through this again. I feel like I let them down by not getting the second opinion. If my symptoms stayed the same as they are now, I could live like this but I am afraid things are going to get worst if I don’t repeat the surgery. Surgery is scheduled for Decenber 17.
Do you know what procedure was done with the first surgery? Did they open the dura?
Dr. Ringer at Mayfield did my surgery a year ago. So far no regrets and I've seen many improvements! Best of luck! I hate to hear that you are going through this again.
Soccer mom, please, please, please do not feel bad for putting your family through this, because really you are not- its the chiari putting you and your family through this. You are not to endure this for the rest of your life because it inconveniences the people around you. You did not create the Chiari, you did not in any way ask for it. My feeling is this…if there is an opportunity to feel better and have an easier life being the soccer mom you want to be than go for it. I’m so sorry you are facing round two. Nobody wants it or plans for it, it just happens. I know, I need another surgery too. It’s a lot to go through but in the grand scheme/timeline it’s a drop in the pond if it helps you. Is your family being supportive? Do they understand how difficult it has been for you to live this way?
Thank you both very much. I really appreciate the much needed support. My family is very supportive but I know they are also very afraid. They all want me to feel better and are willing to do whatever it takes. I am actually a lucky lady. I just have to stay off the pity pot.
I have also contacted the Mayfield Clinic to get a second opinion. Was told by my NS in Elizabethtown KY that I needed the surgery but it terrifies me. Thought maybe the Mayfield Clinic would be the place to go if I absolutely have to have it. Please let me know what you think about the Clinic. Wishing you the best!
The clinic takes a whole health approach. They acknowledged all of my symptoms as being chiari related. He has me scheduled for a sleep study because good sleep is very important for neuro health and healing. He also has me switching to an anti inflamitory diet. Check it out http://www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid.html
Thank you for the link on the anti inflamitory diet. Keep us posted on your progress and best of luck!
Soccer Mom said:
The clinic takes a whole health approach. They acknowledged all of my symptoms as being chiari related. He has me scheduled for a sleep study because good sleep is very important for neuro health and healing. He also has me switching to an anti inflamitory diet. Check it out http://www.drweil.com/drw/u/PAG00361/anti-inflammatory-food-pyramid...