Chiari Malformation type 1

Posted by anorwalk @anorwalk, Jun 19, 2013

Hi,

I’ve been reading all the post on chiari and wondered if anyone has a good out come of the surgery. I have been to 4 neurologist and 1 surgeon and keep getting different answers. 3 drs say I don’t need surgery and the last one said that i really need it or could be paralyzed by any straining. I have a headache all the time and can barely function. Balance problems, numbness and burning in my hands and legs My hurn. Is only 5mm. Any advise? Thank you.

@resawaller

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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@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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@sweetthing111059

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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Thank you so much for yr repely! I know i need the surgery, but I am so scared! But the nerve pain is too much and family don t understand cause they can't see it! Well you can't see God either but he is there!! I'm putting my surgery in God's hands and he will heal Me! Good luck to you and in glad yr feeling better! Pray for me

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@nancy82415

@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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Thank u so much for ur repely, you have made me feel better! My main problem is my husband don't want me to have the surgery! He s scared it want help and ill still be sick and worst afterwards! He wants me to let god and time heal me! And I believe in God but I also believe he gave surgeons the power to help also. I've been married for 30 yrs and my husband don t want to lose Me! I'm glad ur better I know first hand about nerve pain ! It's HELL!!

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@maidmarion

Thank you Colleen. I am glad I found a place where I can talk to others and know that I am not alone.
Marion

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You are not alone! I have Chiari and my nerve pain is hell, and I don't know what to do! Have you had the surgery?

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@kjh2017

@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to “be yourself again”! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!

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U gave Chiari and a cyst on my spine! They are hoping the Chiari fixed the nerve damage! What do you think? I'm having surgery on Sept 4th and I'm scared and my husband don't want me to have the surgery! I dnt know what to do! Any help would be great!!

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@david33

I’m sorry I missed understood, is this do to your cerabellum? I want to make sure I can give you some opinions without giving you the wrong ones.

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No, I have a Chiari malformation.and a cyst on my spine

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@resawaller

U gave Chiari and a cyst on my spine! They are hoping the Chiari fixed the nerve damage! What do you think? I'm having surgery on Sept 4th and I'm scared and my husband don't want me to have the surgery! I dnt know what to do! Any help would be great!!

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@resawaller – what would you say is your husband's primary concern with the surgery you have scheduled? Has he gotten to talk directly to the surgeon about his concerns? Do you feel confident about the surgery?

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@resawaller

Thank u so much for ur repely, you have made me feel better! My main problem is my husband don't want me to have the surgery! He s scared it want help and ill still be sick and worst afterwards! He wants me to let god and time heal me! And I believe in God but I also believe he gave surgeons the power to help also. I've been married for 30 yrs and my husband don t want to lose Me! I'm glad ur better I know first hand about nerve pain ! It's HELL!!

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@resawaller God is working thru the surgeons. When you think of all the skill and knowledge surgeons have, it truly is a God given talent!! I believe God brought the perfect doctors into my life at the right time. It was not an easy journey to get where I am today, but every hurdle brought me to where God wanted me. When I was diagnosed I was told it was not IF I ended up in a wheelchair it was WHEN. I would have lost use of all my extremities without surgery. Some times you have to let go of the fear and just have faith. I have a sign that reads…..If GOD brought you to it, HE will see you thru it. Sending prayers for a successful surgery and smooth recovery.

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Thank you so much for yr repely it really helped! My husband don't want me to have surgery! I can't get him to understand how bad this nerve pain is! I've been sick for over a year now and the pain is too much! It started with headaches and now I can't feel my left side from the waist up! And the nerve pain is HELL!! How do I get him to understand I'm not going to die in surgery and it will make me better. I'm so sad I've lost 35lbs and my life now is horrible, and I cry all the time! Please help me God!

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@lisalucier

@resawaller – what would you say is your husband's primary concern with the surgery you have scheduled? Has he gotten to talk directly to the surgeon about his concerns? Do you feel confident about the surgery?

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My husband thinks it want fix the nerve pain and He s just scared for Me! But I'm scared too,but at this point in ready to have the surgery cause I can't live like I am anymore! I'm tired of hurting and being sick! People don't understand cause they can't see the pain! It's under my skin! And thanks for yr repely,it helps cause I feel so alone and sick! God bless you

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@resawaller

I have Chiari and the headaches are horrible,but the nerve damage on my left side is a lot worst! Some days it's unbearable! My prayers are with you ,I hope you get a good report!

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Hi are you feeling better? I'm still real sick and waiting on surgery on Sept 4th and I'm scared to have it ! And my husband wants me to try other things first! Anybody out there have any suggestions to help Chiari? Please repely

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@resawaller

Hi are you feeling better? I'm still real sick and waiting on surgery on Sept 4th and I'm scared to have it ! And my husband wants me to try other things first! Anybody out there have any suggestions to help Chiari? Please repely

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@resawaller – hoping that @david33 @tracyeylens @luckygirl @duke77 will have some input for you on what has helped the chiari.

I would encourage you to call your surgeon to chat before your surgery and talk through your concerns, resawaller. I had a lot of fear and consternation about a surgery I had planned 7 years ago (totally different type, for prolapse), and I was shocked that the surgeon spent about an hour talking to me on the phone one evening 2 days before the surgery when I called (I think I called his office mid to late afternoon, and he called back in the evening). It helped tremendously with my peace of mind going forward.

What do you think of the idea of having a phone discussion with your surgeon?

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