1. < Brain & Nervous System

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.

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resawaller | @resawaller | Aug 28, 2019
In reply to @maidmarion "Thank you Colleen. I am glad I found a place where I can talk to others..." + (show)
@maidmarion

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

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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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resawaller | @resawaller | Aug 28, 2019
In reply to @kjh2017 "@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred..." + (show)
@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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1 reply
resawaller | @resawaller | Aug 28, 2019
In reply to @david33 "I'm sorry I missed understood, is this do to your cerabellum? I want to make sure..." + (show)
@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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Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 29, 2019
In reply to @resawaller "U gave Chiari and a cyst on my spine! They are hoping the Chiari fixed the..." + (show)
@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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1 reply
resawaller | @resawaller | Aug 29, 2019

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!

REPLY
resawaller | @resawaller | Aug 29, 2019
In reply to @lisalucier "@resawaller - what would you say is your husband's primary concern with the surgery you have..." + (show)
@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 | @resawaller | Aug 30, 2019
In reply to @resawaller "I have Chiari and the headaches are horrible,but the nerve damage on my left side is..." + (show)
@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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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Aug 31, 2019
In reply to @resawaller "Hi are you feeling better? I'm still real sick and waiting on surgery on Sept 4th..." + (show)
@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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resawaller | @resawaller | Sep 1, 2019
In reply to @trouse "Anorwalk, I know what you are going through!! I had and was diagnosed with the same..." + (show)
@trouse

Anorwalk, I know what you are going through!! I had and was diagnosed with the same problem and symptoms back 3 years ago. I couldn't get any answers from my doctors, so I decided to see a specialist. I had this special MRI done on my brain. The next week I had surgery, I had 95% blockage in my brain. They removed part of the back of my scull for circulation. Two weeks after surgery had complications and contracted spinal menengitis, I was very sick, lost 30 pounds in 4 days and was in the hospital for 14. During my menengitis, The back of my head swelled severely and they thought they might have to go back in and remove the pressure. The specialist gave me some sort of antibiotics which brought the swelling down. After the surgery I still have periodic headaches, some short term memory loss, and comprehension which is all normal after surgery. So far I have been OK. I have a friend who had three surgeries from chiari, he went to the same doctor as I did. I do not mean to scare you, I am sorry if I am. If I were you get two opinions from doctors that know about it, and if they both agree, see what hey have to say! If it is bad take care of it right away!! You will be fine!! I was scared at first, but now I am glad I did it! Recovery takes time, but then it's over! If you need to talk about this, I am here for you! I have been there!! I hope this information helps! Let me know, hope to hear from you soon!
trouse

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You have scared me to not have the surgery! First my doctor has not told me how bad my Chiari is,and second I keep telling him how bad my nerve damage is on my left side and he blames it on Chiari! I thinlk it's syringomyelia! And cutting my head open want solve my nerve damage! What so u think o. The matter?

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resawaller | @resawaller | Sep 1, 2019
In reply to @anorwalk "Thank you trouse. I have been to one Nero surgeon and three neurologist in the past..." + (show)
@anorwalk

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 have 2 doctors telling me to have Chiari surgery , but I believe it's my syringomyelia that's causeing my nerve damage! But he says that will be fixed after he does the Chiari surgery! What do you think!? Please help my surgery is on Sept 4th and my husband is against the surgery, what so u do?

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