Symptoms coming back after decompression surgery

Posted , 4 users are following.

I was diagnosed with chiari at 8 years old (i now am 17). I had severe leg tinglyness and bad headaches. I had decompression surgery at the Mayo Clinic in Rochester Minnesota. In my surgery my neurosurgeon did not use the patch. He inserted as to what he described as “raw hide” in my head. It would grow as I grow. I get a flare up every once and a while and that’s normal but lately I’ve been getting migraines very frequently. I’ve also had dizziness and tinglyness in my legs. My neck feels strained a lot and it’s hard to lay on my back because my neck is sore. I’m wondering if it’s possible that maybe my symptoms are coming back because the fake bone is no longer working. Is that possible. 

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2 Replies

  • Posted

    Hi there,

    Never heard of that, however, would you think is best to go back to your health care professionals who were treating you, they knew your history..talk to them, ask their advice, there are some patients I reckon about 40% of the chiarian have some more symptom after several years of decompression, I personally think because they tried to live a normal life , forgetting that they have defect in their CNS flow, i am not sure..my surgeon asked me to live normal but have to accept my condition - so I take every thing gently..walking each day..drinking plenty lots of water, take some supplements, change my life style completely..hence I am drug free, now and then (very..very rare) that I took paracetamol due to horrendous pain all over my legs, arms, neck...but that is because I know I have done too much - my best advice is to get your doctor to refer you back to that mayo clinic, they are really good....

  • Posted

    I had two surgeries in 94 when I was 4. I don't remember exactly what they did because I was so little, by they messed up the first surgery and I had a spinal fluid leak and they had to go back in a month later and had to fix it. 

    Flash forward to a month ago where I had to get records for every MRI I've had since 2005 since I have blood clots. I got records for an MRI from 2013 that shows that I have Arnold chiari malformation 1 with my tonsils 11mm recommending I see someone to get decompression (which they oh so nicely never told me). It all makes sense since I've had symptoms for YEARS getting worse every day. So I'm guessing it's possible for after surgery for it come back again. 

    I don't see a doctor until next month so I don't know everything but my bet is that could be what's up with you too. I'd get checked out. 

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