Mayo Clinic Connect
I just got diagnosed with Chiari Malformation type 1. I get severe headaches if I do anything strenuous. Liked to know someone with my syptoms and how you are all handling it?
My 5 yo son has this. It was diagnosed when he was 4 because he was having headaches. They were getting very severe and relieved with laying down. When the headaches became daily and a nurologist refused to give us medication for them, we scheduled surgery. That was 7 weeks ago. He did really well, even after getting the chemical menegitis. he has only had 5 headaches since we got home from the hospital and they were shorter and less severe than before surgery. We were told it can take 6 months to fully heal from surgery and see how things would heal.
Wow! He is s trooper. Best of luck to you and your son. Yeah, I didn’t even know this this until couple weeks ago. Headaches are pretty bad. I have an appointment with the surgeon end of this month to consult. But my neurologist said surgery is the only option. So did they operate right near the back of his neck? All the information on the web looks like there’s no other way to fix this other than surgery.
my daughter, whom i just added due to pancreas issues, was dx’d and had surgery for chiari and tethered cord. she was seen in NY at chiair institute, but now see’s a doc at Uva, Jon Jane jr. . She is fused thru C6 for stability purpose.
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For more information about Chiari Malformation, go here: http://www.mayoclinic.org/chiari-malformation/. Even though it is rare, Mayo Clinic treats more than 150 people with Chiari every year.
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I am a zipper head myself. 🙂 I was dx with Chairi Malf type I almost four years ago. I know there is alot of info about tethered cord and children with Chiair but not as much about adults and Type I.
When I found out my dx I freaked out and scoured the internet for answers. Much of what I found was terrifing and brought me to tears. I was a healthy active 20 something who doesn’t even have allergies. I couldn’t understand why I had this. If you are having any feelings like this, know that it is all going to be ok. It may even be great! See now that you know what is wrong you can work on “fixing” and managing it. You don’t have to hurt all the time and suffer the headaches. While there is no “cure”, there are many treatment options. First you have to de-stress because stress is your bigest nemisis. Stress will make the muscles in your head, neck and back tense and squeeze your brain stem and nerves and in some cases cut down your CSF flow. All these things cause pain and headaches. For me I had additional symptoms; temporary paralyisis, severe constant pain, headaches, speech and cognitive issues. Set up an appointment with a nuerologist and maybe a consult with a neurosurgon to review your options for medications or surg.
I had head neck and “brain” surg just over three years ago and many of my symptoms have subsided and only on a few occasions have they bothered me since. Your pain tolerence will increase and you will become stronger and this will help you cope with your symptoms. I’m not pain free but with practice, it is managable now with out meds. I am back to being active and living a happy full life.
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Thank you so much for your information. I am getting severe headaches recently but with no other complications yet. I’ve heard that you can get paralysis and vision problems as well. I have made an appointment with a neurologist at Mayo in AZ in October( couldn’t get an earlier appt.) I have seen a neurologist and a neuro surgeon and the neurologist said I needed the surgery but the surgeon wasn’t a Chiari expert so he said I should try other options. That’s why I am going to get another opinion from another doctor.
I am having headaches everyday now and no medicines work for me. If I lay down and when i sleep I feel a little afterwards but the headaches usually come back.
I am going to have the surgery anyway, so it’s just matter of time when my surgeon schedules it.
Thank you again for your message. Take care.
Just posted a discussion asking for info especially post op. Feel free to share the good the bad and the ugly part of recuperation especially what to expect in the pain department. I am considering going to AZ for another opinion and check out surgeons at Mayo. Not sure what city they are located in Tuscon or Phoenix. Have pain will travel !
Sorry for the delayed response. Been having headaches again. I did read your message. I’ve talked to a surgeon for my condition but haven’t heard back from him. I also have made an appointment with Mayo but it’s in October. One of my friend has had this surgery before and told me that UCLA has one of the best Chiari Centers. I will send you some links, you can contact them. Where are you located? Can you travel to Los Angeles?
I also sent you some links, hope they help! All the best to you.
I am in the San Antonio, TX area. I can travel anywhere. Just spoke with my insurance and they will pay for a second opinion and hopefully the doc or hosp. takes my ins. so I have very little out of pocket expense.
Sorry for your headaches, they are not fun.Have you found relief ? I know that is a rhetorical question, it is always a waiting game and what position you can sit, stand or lie in while waiting. I hate the ones that nausea is so bad it leads to vomiting which of course only makes it worse. Oh for all the times I felt like chopping my head off so the rest of my body could get things done. Wishfull thinking at best I know but…………….
Mine come and go at will it is the other symptoms now that are beginning to get on my last nerve and are pushing me forward to the surgery. Just don’t want to be a drooling, stumbling fool on my birthday since lack of booze can’t be used as an excuse.
I’m sorry. I can say I feel what you are going through. My headaches have mind of their own too, comes as they please. It started with going to the gym but now I get them anytime, doesn’t matter if it strenuous or not. My neurologist gave me Zoloft as a remedy now, which is making other things worse. Waiting for my surgeon to call back. Who knows when he will call. Your herniation seems larger than mine, mine is 6 mm now but now sure if it will get worse. I don’t get nausea…yet. But it will make the condition worse. I hope you can find the correct doctor and try calling Mayo in AZ. I am in AZ and trying to contact dr. Naresh Patel who is a neuro surgeon here at Mayo. See if you can schedule an appointment with him.
I had the posterior decompression surgery 2 1/1 years ago. Still looking for relief.
They had to remove a very large portion of skull and patch with surgical bovine.
I also had the syrinx that can be a complication where the spinal fluid was leaking
out. Took almost 4 years to figure out what was wrong with me. Now I am still in
pain and dealing with the nerve damage caused. Had surgery in Oregon after 9 months of complaining of constant pain was sent to Mayo to be checked, they
said it looked like surgery was successful. That was over a year ago, still in
phys. therapy and also on 9 med’s. The worst part is the head and neck pain
are still here. Local neurologist wants to inject botox into main nerve at back of
skull….I am looking for any information from anyone who has had this done. I am
nervous about this option, but also tired of taking all these pills especially since
I am in so much pain anyway. If you know of any info on this please
share. thanks ! Maddy32
Do you know how much surgery is done at Jacksonville, FL? That was where I was diagnosed last year with a Chiari 1, 6 mm. I am not sure how many surgeries had been done there, but it is the closest hospital to me here in TN.
That must have been so hard for you. I have a 5 yr. old grandaughter, and I am glad I have the chiari rather than her. But i am still a big baby when it comes to the surgery. But as my symptoms are increasing more every day, i know that surgery is probably inevitable. I am so glad that your son is doing well!
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Hi Naureen, I also have been recently diagnosed with Chiari Marlformation. It is extentended 6 mm, and has caused me numerous problems. I was diagnosed at the Mayo Clinic in Jacksonville, but I was not given a lot of information. I have done extensive research myself and have found that there are a myriad of health problems that can be the result of the Chiari. I have sleep apnea, severe pain in my legs when walking, extreme stiffness in my neck, and recently have started having headaches also when doing any activity during the day. The only relief I seem to have is when I lie on my left side on a special pillow I happened upon. I am hoping to find someone who has had experience with the Jacksonville clinic and chiaris. I hope that you can find the answers you need. I know it is a scary thing. It seems that people have had many different responses to the surgery. I just pray and take one day at a time.
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