Chiari Malformation type 1

Hello, my name is David and I went through surgery on Jan the 21st to relieve pressure on the cerebellum.....the doctors call it Chairi malformation decompression. I know that the symptoms I had before wasn't going to clear up with this surgery, but I can't tell the new from the old....numbness, dizzy and lightheaded, weird headaches, ext. Can someone who went through this surgery help me before I make a complete idiot by going to the hospital, or calling the doctor for my complaints.
Thanks

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Thank you trouse. I have been to one Nero surgeon and three neurologist in the past year. The worst was that I found out my dx by reading my MRI report not by my dr. So I got sick of him and found a dr who has dealt with it before. When I saw the surgeon he said I didn't need the surgery, but when I saw my new dr he said that I needed surgery ASAP other wise I was a sneeze away from being paralyzed. So now I'm going to the mayo clinic in AZ. He put me on a bunch of meds and I still get no relief. I have been dealing with severe headaches everyday for over a year. How long did it take you before someone believed you about your pain and symptoms? I'm really glad that your doing so great. Here in AZ there are not a lot of specialist. I guess we will see what mayo has to say.

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I thought about the mayo clinic but its too far away from me ! Im have surgery on Sept 4th please pray for me ! I'll let everyone know how it goes if I wake up! It's in God's hands

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All I keep getting told is "your brain isn't falling out enough to worry about it". I now have seizures I can't work, I can't drive and I have many other problems and I am only 46

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Hi i am about to see the neurologiat for my chiari malformation what can i expect and does the botox work any advice would be great. I have lots of symptoms and these headaches are horrible

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Hi christine. The Botox did not work for me at all but everyone is different. I have had these headaches for over 2 years and i am still the same if not worse. I even went to a head institute in Michigan and all they wantes to do is keep me for 10 days to do iv medication. I dont live anywhere close to them so i wouldnt stay. I figure my doctor can do that here by me. I have been to over 10 doctors and they dont know what to do. I see mine tomorrow so we shall see what he has to say again. I had a spinal fluid leak sealed but now i cant feel some of my hand and fingers from the surgery and it didnt help my headaches. When you go in to see your doctor just make sure you ask him if this will help. Be open minded to what they want to try first. Dont do the physical therapy because igs just a waste of money and time if they want to try that before. Good luck and let me know what they want to do maybe it will help me too.

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I have the problems as you ! I have Chiari and a cyst on my spinal cord they are hoping the surgery will make my spinal fluid will move after surgery and fix the cyst! But I'm scared to death to have surgery! How lo g did it take to heal after surgery? And did it fix yr nerve pain?

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I had surgery on mine in 2007 and I had all the symptoms you are having and praise God the surgery stopped mine. If I had not had the surgery I would have become paralyzed and I did not want to take that chance. I wanted to be able to hug my family 👪 and take care of my self. Good luck 🎲 with your decision. My God bless you

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@resawaller my recovery went well. I had no pain after surgery. I only dealt with nausea and an airhead headache. These results are not typical. I was in the hospital five days. Off work for six weeks. My numbness and tingling got better, but occasionally I do have some. After surgery I noticed I was light headed in a good way. Never realized that I had so much pressure inside my head. I had done a 180 in how I felt. I wasn’t going thru life on autopilot and having to push myself to do anything after surgery. Was the best thing I ever did.

My brain was herniated 17mm below the foramen magnum and the syrinx was at least 11mm starting at my foramen magnum down to my t6. I was warned I would be in pain even with medication after surgery. But at this point I was so ready to deal with it as I knew I would feel better after. There would be light at the end of the tunnel. Reminder that surgery is not a cure. It is done to stop the progression. My surgery was considered a success. My syrinx decreased in size greatly. The brain is now in a relaxed position. It now has been four yrs since surgery and the brain and syrinx are still looking like they did three months after surgery.

In dealing with the time before surgery I told myself over and over that it was a waste of my time and energy to stress over it. I would only make myself more stressed and worried. At this point I knew I could not control the surgery and recovery, but I could control how I reacted to the situation. I had faith in my GOD and faith in my doctors. I prayed and asked others to pray that I was calm, cool and collected during this journey. I found out that prays do work. I was so relaxed before surgery I was actually counting down the days to surgery. I kept a positive attitude. Which helped me a lot.

I will pray that you find comfort and peace during this time. Just remember how much you have gone thru to now. You gotten thru all that, you will get thru surgery. You are a lot stronger than you think you are and a lot braver! You got this!! Let me know how things went.

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