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7 years post op - past 3 days of severe head pain/numbness

Posted , 3 users are following.

Fmac93
Fmac93

I haven't had any glaring issues since my spinal decompression in Jan 2011, I am, all things considered, lucky in my Chiari diagnosis. 

I have had such minimal symptoms since my decompression, was totally cleared about 3 years ago. I had an MIR around 8 months ago and was told I was the same no change. 

Monday April 23rd 2018 @ approx. 730am while getting ready for work I noticed a slight numbness in my head, thought nothing of it out of the normal. made sure I took my gabapentin as this is common if I forget.

Driving to work the pain in my left side back of head and neck was throbbing in pain making me wince. still thought this was possibly normal and would subside on its own. you know, regular Chiari pains.

30 mins later, as people began shuffling into the office, I couldn't take it anymore, and had a co-worker take me to the emergency room in tears. 

I saw the Dr at around 9am and he did a neurological assessment on me, and concluded I have numbness and pain (that feels like the Chiari numbness not normal people numbness) localised to the left scalp/neck and collar bone area. He said this is because it is my nervous system (gee thanks). He suggested Advil, I asked for naproxen, He gave me naproxen around 930am, fast-forward 1030am and naproxen should have kicked in by now, nothing, no change whatsoever. In fact, I mentioned it has spread a bit and going through my shoulder now. He was contacting my neurosurgeons office to ask to get an MRI, which they said they will call to set up but they don’t believe it is urgent. its Thursday now and still not call, I understand it takes time so I will wait. 

However, he said "they are not concerned with the pain"

That's really nice and all, however I am very concerned with the pain as I work a 45hr/week job and am quite new so i rather not use my sick time. 

Naproxen does not work,

gabapentin increase makes work impossible as I can’t think very straight at all. 

I have massage therapy tomorrow evening, i am however super afraid it could exacerbate the pain as it is the nervous system and not he muscular system that is the issue here.

Any advise on why this could be happening to me so out of the blue? 

Has anyone else experienced collar bone numbness?

Anyone have left side of the head 'numb' (a painful numb)

I also don't want to jump to the worst conclusion as my last MRI was only 8 months ago and was clean.

0 likes, 2 replies

2 Replies

  • b2wc97455
    b2wc97455 Fmac93

    Posted

    Hi There,

    I fully understand for your dilemma - however in my experience talking to my specialist is that generally patient suffering with chiari have unusual circulation between the in and out of their (CSF)flow - the incoming flow is higher then outgoing flow hence its put pressure on the brain - best thing is to get them to measure your flow and if it is too high then normal (anything over 12) then you would like your specialist to drain some of it by Lumber Puncture (I HAD THAT 3 times) as despite getting decompression I still have pressure....but would that be as bad as before your OP. In the meantime I think Topiramate (or topimax???) seems helping while you are waiting for the lumber puncture also please insist to get the MRI/Cine done. GOOD LUCK

  • Nyla_girl
    Nyla_girl Fmac93

    Posted

    I’m so sorry that you are going through this. Your pain and numbness is not something new. A lot of patients including myself and  in thes chiari blogs has said that they have had similar problems.  I’ve had 4 brain surgeries related to Chiari Malformation 1 and have been in constant pain with many other neurological symptoms since dec 2017.  my neurologist and neurosurgeon is not interested in how I feel. All they are interested is what the mri reveals. And according to them, all they can say it that I’m complicated. So I feel your pain and stress. Just know that you’re not alone in suffering from chiari symptoms 
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