Chiari Malformation Community
Chiari after surgery
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Chiari after surgery

Hello  I'm new to this site and I have been reading some stories after surgeries that the symptoms came back months or years after surgery. I was diagnosed at 15 with chiari in oct of '07 and had surgery in nov. I was relieved that I felt my headaches go away at first but I felt them slowly come back about 1-2weeks after surgery and they have been bugging me ever since. I also suffer from depression anxiety and sleep apnea. I live with constant headache and I have gone back to my neurologists and they say everything is okay after surgery and to this day I have had an MRI and a ct scan and a lumbar puncture and everything is normal. Does anyone have a similar problem? If so what do you do for pain?
p.s. i have tried many meds and none seem to work except dilaudid (6 to 8 times as strong as morphine)
Thank you in advance
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Avatar_f_tn
I feel your pain as I am in the same boat with you.  I had surgery in 2009 and am still in pain.  My primary doc told me that I had surgery and am now "cured" and my headaches are just stress or depression.  She ordered an MRI to prove to me that my tonsils have not herniated and "chiari is not my problem"  I went to a neurologist at the University of Michigan and he told me that it's not chiari causing my headaches, its just migraines.  I have to take 4 different meds for the pain that still isn't working. (Topamax (2x daily); Cymbalta (2x daily); Naproxen; Vicodin)  I have just given up with the medical profession.  I don't know where to go next since nobody believes me.  Sorry you are going through this too.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

There r many Drs that perform this surgery, but do not look to related conditions when the patient still does not feel better post op.

It is possible to develop a condition post op or to have had it prior and it flares post op....

Other issues could be cerebral ptosis, or a CSF leak, but u would not be able to stand being upright for the most part....the HA's would be worse post op then they were b4.

U need to find out if u have something related as many of them can cause many of the same symptoms....
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Avatar_f_tn
i have tried so many meds i cant count anymore and so many for depression and migraines and none have worked at all  and now that i cant work at all because of my headaches i cant get ssi wich i dont know why because i cant support myself anymore what do you guys do when you have to work with a headache?
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I can't believe so many people have the same problem. I am ten months post op and my depression, anxiety, seizures and headaches have returned and nothing works except natural herbs that are not legal, none of the medications will work except a high dose of depakote 4 times a day that slowly kills your liver....
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I am so sorry u r still having issues post op....do u know if u have other related conditions that may be part of the symptoms u r having?

  How long since u had surgery?
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Avatar_f_tn
I had surgery April 2013 and it's difficult to say. They have diagnosed me with epilepsy but I also have permanent brain damage and they also have seen unexplainable white spots on my MRI that the neurologist or surgeon  have no idea what they are.
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620923_tn?1405964489

  We have had a few members get an epilepsy DX post op and a few that had them pre op.....

White spots or lesions can be the result of very bad headaches and can indicate possible MS...have they ruled that out?

Did u have a brain  MRI post op?
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