The original poster had decompression surgery for Chiari...as it is posted here in the Chiari forum.....
This is an older thread and this member may not be active, u may want to contact her via a PM that will generate an e-mail.
CRPS of the scalp?
It doesn't say what type of surgery you had, but, I am going to take a guess that it was spinal surgery if your scalp is being effected.
What medications have you tried for this type of pain? Neuropathic pain is very difficult to treat, and this type of pain typically won't respond to the usual nerve medications (gabapentin, lyrica, etc).
If you have tried opioids for this, have you found that they don't work very well either?
If you suspect you might have this and are still having trouble controlling your pain, it's best to find a CRPS specialist to work with you to try to calm your central nervous system down sooner rather than later.
It can disappear as abruptly as it came. But, that is rare.
Most people suffer for years before even getting a diagnosis, and it seems to be harder to treat the longer you wait. There are medications that in theory, work by sort of "resetting" our nervous system. CRPS is like a bad habit, and the pain won't stop until you break it, but you can't just will it away, if it were only that easy - it is a real physical condition, a beast of a condition, and I do not wish it upon anyone!
Ketamine infusions could help nip your pain in the butt. When it works, and the success rate is high, it really works.
Good luck!
I don't know where my post went. He said nerve pain and gave neurontin and it helped but I won't tame anymore because I feel hung over.
i am 4 months post op and i am having terrible searing pain in the left top of my head. I describe it as feeling as if hot grease is being poured on my head. it's not next to my incision but higher up to the way left. i have also established very painful headaches behind my eyes and around my forehead. i had HA all the time before the surgery but this is even worse. this started about mo 3 post surgery. i've been pretty miserable and not able to do much with my kids due to the pain. i went in to my NS last week for an emergency MRI with and without contrast to make sure there wasn't something wrong and thankfully it came back normal. i have my follow up with my NS tomorrow and i am going in with a long list of questions.
Hi
I'm trying to think back on the type of pain that I had after surgery...all I know is the back of my head was extremely painful...I couldn't put any pressure on it for weeks! The burning feeling sounds like what happens when the skin starts to heal up, mine got intensely itchy too. But I noticed you say that it is not where the incision is....I am wondering if it is due to the neck muscle that are manipulated during the surgery? I had a terrible time with my neck muscles being stiff and painful.
Really only you know if this is something that is somewhat normal or not. If you are feeling that this pain is not normal, I would contact your NS. Did they give you an email address or something? Mine did so that I could contact him with any questions.
I hope it eases up for you!
Stormy
Hi, are u lying on the incision?...I made sure to stay on the side of my head and did not have that sensation.Did they take tissue from ur scalp for ur patch?
Sorry u r feeling like this, have u asked ur Dr about it?
"selma"