To what extent do you lose the ability to feel hot and cold?

[Lindskea]

Hi everyone,

I was diagnosed with Chiari last july and had decompression surgery a little over a year ago. I still have headaches, fatigue, numbness, etc. I have an appt with a neurologist next month to look at the possibility of related conditions (I'm worried I have syringomyelia-- my surgeon never did a mri of my spine, OR a follow up head mri or ct.)  I was cooking dinner tonight in a crockpot and then I went and sat down and my hand started hurting like it was sunburnt, it turned out I had a long red burn on the side of my hand! I had no idea I burned it, so I went back to the crockpot and touched it and I could tell it was really hot, I couldn't keep my fingers on it too long.

Is that normal? It is normal to still be able to feel hot and cold just fine at times, but burn yourself at other times without realising it? Or is it that you just completely lose the ability to feel hot/cold 100% of the time?

Thank you!
Lindsey

[selmaS]

  Being confident is not enuff to not take a look ....how would he know if you developed scar tissue that could be creating yet another obstruction to the CSF flow?...OR if a leak formed?....or rejection of the patch?

It doesn't make sense.....

Make sure they do a MRI of your cervical spine and brain to check the surgical site and  MRI's of the thoracic and lumbar spine as it is also possible to have tethered cord....it is a related Chiari condition and can actually cause the cerebral tonsils to herniate. TC can also cause back pain, leg pains and yes headaches.

Most times TC can cause symptoms to worsen post op....the first 6 weeks to 6 months are when the Drs watch for changes.

I would also have them rule out Ehlers-Danlos Syndrome another related condition which could cause continued headaches post op.

[selmaS]

  Hi it does sound like you may possibly have an underlying related condition....Syrigomyelia is one that will affect how you perceive hot and cold....not so much Chiari.

May I ask why a follow up MRI was not done? Did you report the remaining symptoms you have?

Do you know what all was done during your decompression surgery? Did you have a laminectomy of C1 and C2....and did you have a dura patch laced and if so what type?

Try to get the NL you see to do MRI's to see if you may have scar tissue building up or if the decompression was able to allow your CSF to flow properly.

[Lindskea]

Syringomyelia is definitely my concern, I have terrible back pain all the time. I had a decompression, laminectomy of C1, and a duraplasty. I have NO idea why he never did a follow-up MRI or even an MRI of my spine because of all my back pain. After my surgery he said he was confident and that he "got a really decompression", so I guess he was just so sure of his work he didn't need to see it. I called my neurosurgeon's office about a month ago and told them of my issues, but they said it is not related to my surgery so they sent me to a neurologist instead. My main reason for going to a neurologist is to get the MRIs done or possibly get some medication for my headaches/back pain.