Chiari Malformation Community
Headache
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Headache

I had my surgery 10/18/2011. I have not been headache free a single day since. Some days the headaches are better than others but they are never gone. I go to physical therapy once every other week. This helps with preventing the really bad headaches. I am just tired of being in pain. I take ultram, robaxin, xanaflex, and butterbur. I have two injections to help with the pain. These have never helped. Although once it did take away my dizziness. I have three little ones under the age of 8. I am a part time nurse and my family depends on my income. I go on everyday like nothing is wrong. But it is wrong I am in pain, I am tired, I am just not the person I used to be.. I just wish I could go back to the time when I wasn't sick. Sorry I guess I needed to vent. I did want you to see that you are not alone. I try to have hope. My neurologist says he has been able to solve these headaches post decompression surgery in about a dozen pts. Only one time was he not able to help a pt. I have hope but it is hard. It is lonely. Thanks for listening. Does anyone else have these daily headaches? I've been told they are muscle related, or chronic migraines.
3 Comments Post a Comment
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620923_tn?1416285879

  Hi and welcome to the Chiari forum,

  I have to ask if u were checked for related conditions b4 u had ur PFD surgery? The underlying condition may be causing u to have HA's.....r they the same type u had b4 surgery ir r they different?

And is ur NS a true Chiari specialist?....

Have u had a MRI post op? What do u do on a daily basis? With ur job do u have to do heavy lifting and how long r u back to work...u may be doping too much, our bodies have a way of letting us know.

There r many questions, I am sorry but to better understand what u r going thru and options it is helpful to know a little more.

I had surgery 3.5 yrs ago and am doing pretty good, outside of related issues....I am on TOPAMAX to help with HA's and it does help....

Did / do u do neck exercises to help keep ur muscles from getting tight and prevent the formation of scar tissue.

Know u r not alone...we r here : )

.....
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1663373_tn?1333639589
You are not alone it has been almost two years for me and still have headache everyday. After my decompression I had a fusion of c5c6 and then I was dx with occipital neuralgia.. The only thing that has helped besides pain management is chiro and acupuncture. I am a pediatric OT and also work part time but somedays it is hard to pretend I don't hurt so much. Many of us that get decompressed get occipital neuralgia from the surgery. I hope that yours go away but as you figure out what is going on know your not alone. I too have 2 children hard to get it all done. Luckily I married a saint who helps me beyond words. I wish you the best and hang in there.
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Thank you both for your response. It is so nice to know I am not alone.

I want to clarify these Headaches are completely different than before. Plus I have been relieved of other debilitating symptoms such as a foggy mind, extreme fatigue, random tingling, ect. Although my NS was not a specialist he did a wonderful job and he is a wonderful doctor. I would recommend him to anyone. I have had a negative MRI post op. Anyone that knows about nursing knows there is heavy lifting. Plus being a mom of three little ones I can only stop so much. My life must go on. I know I need to do my exercises more. Thanks for reminding me.  I went back to my neurologist today. He added a drug, did a different injection, and has but in a referal to chapel hill. He has asked me to continue to have hope so I will. Thanks again for helping know I am not alone.
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