Surgery. ..how do you know which one is best for you

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so apparently their are a few. different surgeries for CM1. how do you know which one to do and which one is best for you. it's expensive to have surgery and you can"t trade it in for a new one like you can a car if it doesn't work for you.

im a worried haven't even seen a neuroseurgon yet and already worried about surgery my mom is like at least this is treatable. not from what I am reading it isn't. I mean how do you know if you want to just deal with it for the rest of your life or take a chance on a surgery that may or may not work.

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  • Posted

    the way i rationalized my surgery was that if i am already suffering then id rather take a chance kn surgery helping me, if it doesnt work than at least i went down trying. my surgery was a year ago. i still have symtpoms that effect my life enerygy levels and pain, but im slightly better than before. its jot the doctors fault if you dont get better fully, its the condition. also, there is a likelihood of the condition getting worse without surgery....it will never get better on its own, just worse. it may be beneficial to accept that this will most likely effect you for the rest of your life, but that doesnt mean you wont be able to adapt and continue living your life and pursuing your career and enjoying life...i got diagnosed, but im still a teacher, married and have a 1 year old, etc...im in pain, but its being managed somewhat and i beleive my surgery helped reign in the symptims from getting worse.

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  • Posted

    There are two approaches to health/healing. The first, is to simply treat the SYMPTOMS. The other approach is to treat the CAUSE of the symptoms. Chiari decompression surgery is used to treat the SYMPTOMS but does not address the CAUSE. The goal of the decompression surgery is create more room by taking out a chunk of the back of the skull, and also for some shaving off the back half of C1 and/or C2 vertebrae, in the hope of re-establishing CSF flow and hope to alleviate symptoms. Said surgery is a 5 hour long, traumatic event, which may or may not help the patient find relief from the symptoms. Many that do find relief, see their symptoms come back with time and possibly worsen. I had such surgery in January of 2016, an it provide about 4 weeks of limited relief before all symptoms came back thereafter.

    But,...through prayer and constant research, I was led by God to undertake a 45 minute Filum Terminale Dissectum surgery. Whereas decompression surgery is at the top of the spine, Filum surgery is done at the bottom of the spine, just above the intergluteal cleft (butt crack). Said surgery got me out of bed after three years, and like many who have had such surgery: GOT THEIR LIFE BACK. I get to raise my children again, support my wife, and run the household. Best money I ever spent in my entire life, and would have paid a million dollars for the Filum surgery.

    Do your research, pray, become an EXPERT on all things Chiari, and on cranial nerves and on Filum Terminale Dissectum surgery. Decompression surgery set us back, after insurance about $10,000, again with only 4 weeks of relief. Filum surgery set us back about $25,000, but a GoFundMe account and donations by friends/family help to offset that. Godspeed

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    • Posted

      Im very happy for that that procedure helped you tremendously. but i think you need to had tethered cord syndrome which was why you were suffering as bad as you did and thats why that procedure was so beneficial for you. if a patient doesnt have tethered cord than there is no reason to perform that procedure. athough i may be wrong, but thats what i read and how my surgeon explained it to me. Most chiari patients dont have tethered cord syndrome.

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    • Posted

      Would you be willing to share the name of the doctor who performed your surgery ? From my understanding there are only 3 in the US and one in Barcelona . I have been unable to find the American surgeons. I have researched so much and found this is the appropriate surgery for me. And no I don't have TCS . Thank you for spreading the word!!

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  • Posted

    i guess their is no reason to be concerned until I meet with my doctor's. still haven't gotten my appointment with the neurosurgeon will have to follow up on that Monday.

    i just worry to much and really I have been managing pretty good. I have good days and bad days like everyone else. I typically do desk work but haven't been working lately. I do find my headaches/migraines and ear ringing and pain in general to be worse when I am in a noisey / stressful office and doing repeatative movements.

    when I am home I can better pace myself and having a variety of things to do is better for me.

    i know at some point I will get back to work just trying to hold off until October. I don't want to start a new job and have to be off for multiple appointments and additional test. that wouldn't be good.

    thank you for some insight to this. definitely gives me some things to consider.

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