Pain top rt. side of head after surgery

[karenlast]

I had decompression at Mass General last week.  It was very pleased with the entire hospital stay.  Am home now and feeling great.  I have been off all pain med since I came home...just taking Motrin and taking it easy.  The only pain that is bothering me is the top right side of my head....which is weird because it is so far from the surgical site or where the actual "work" was done.  The entire area is totally numb and painful to touch.  It's the only place that I am requiring ice.  I just emailed surgeon for possible explanation.  It's like if you rest your hand on top,of your head, that entire area is just so sore.  I know that nerves can be cut or damaged during surgery, but this seems extreme.  Thoughts?

[piccchick]

Normally the occipital nerves are located laterally to a chiari decompression midline incision. That said, some may be more medial. Mine are. My right occipital nerve was injured during the surgery. The pain runs laterally across the top/back of my skull and can radiate straight through my eyes. I have areas where my hair is missing along the nerve path. These areas were not shaved. The hair loss is due to nerve damage. I was given the option of oblation for pain control. I did not pursue that, and now,  3 months post operative, the pain is tolerable without NSAD. Best of luck!

[selmaS]

  Hi and welcome to the Chiari forum.

Are u on ne pain meds that could be causing the crawling sensation?
Did u have a syrinx?....

What symptoms were relieved and do u have ne that remained?

May I ask what all was done during surgery? Did u have a lamenectomy a dura plasty?

[rocco31]

Had decompression surgery 8 months ago feel good other than the crawling.    Feeling in my skin and all over body very annoying

[peteremond]

Thank you for your help!  The PA said that normally halo pin pain goes away in the first couple of week; however, sometimes it takes longer.  Kenny is supposed to follow up with them next week to see if there is any improvement.  

So far, Monday and Tuesday were MUCH better than Saturday and Sunday (or the 4 weeks prior).  We are hoping this is a sign of healing.  That said, we also have had some interesting conversations about the effect of barometric pressure changes on neuralgias. With the season change, it has been rough alongside the post-op recovery.  

[AnnieDear]

Peter,

I just read a post that came not long after this one. It might help you gain information and experiences? It appears this poster developed occipital neuralgia :(

http://www.medhelp.org/posts/Chiari-Malformation/Occipital-Neuralgia-after-surgery/show/1835847#post_8477631

[AnnieDear]

Hi Peter,

I was just reading this post and I'm curious if you received any answers yesterday. I, too, had the halo and pain following surgery. I still have phantom sharp pains in the right pin sight (1 year post-op).

Hope you heard from the lead PA or that you do soon. And certainly hope your friend feels better!
Annie

[selmaS]

  Well there is where all the nerves are and even the smallest of inflammation can cause impingement in that area...as I mentioned even scar tissue could do it.

Another issue some of us have is we do have other issues going on, like myself I have Ehlers-Danlos, so I am slower to heal...and not all pain meds work for me....we are all different and not all of us will heal like manymay suspect,,.but since the pain is more,intense, I would say there is something else going on.

Do let us know what u find out.

[peteremond]

thanks, selmaS, for responding. It might be that there is some nerve impingment.  It is hard to tell.  Usually when I think of nerve impingement I think of areas with more musculature, vains or bones causing the pinching.  The scalp doesn't seem to have enough up there to pinch anything.  

We are perplexed and fear the doctor's office might not have an answer for us.  As it is, we called and spoke to one of the PAs and he wasn't entirely sure why the pain was lasting this long. We confessed to be relatively new, so he deferred us to the lead PA, who hopefully will talk to us on Monday

[selmaS]

  Peter, I had surgery and the halo was used on me, and I really did not have the issues that others seem to have....yes, I did have a few spots that were sore and scabby,....but they healed.

As for ur friend it could be nerve damage from the halo, but I also wonder if he may have had some scar tissue that formed and is impinging the nerves in that area???

Just a thought.

[peteremond]

Hi selmaS,

My friend actually has a condition called Occipital Neuralgia (ON) and had nerve decompression surgery at the C2 nerve root.  This forum caught my attention when researching complications from halos used during head/neck surgery.

The neurosurgeon used a fixation system (according to the operation notes), but we've also heard it described as a surgical halo by his staff and the staff at the hospital.  Since surgery, he has had a new, extremely painful and distressing stabbing sensation about 1 inch from one of the sites of the pin holes.  

Surgery was March 5, 2013, which is nearly 4 weeks ago.  We thought the worst of the recovery would be over by now.  I will say even seeing the halo gashes was something we weren't entirely prepared for when he came out of surgery.  We expected some level of pain post-op, but we were quite surprised to see gashes on the left side of his head.  

Surgery was performed on the right side of C2 and that side is now completely pain free (praise God!).  His left side was/is also requiring surgery but the surgeon wouldn't do both sides at the same time.  Sadly, the pain he is now experiencing on the left side is 10 times worse than the Occipital Neuralgia pain he was experiencing previously.  It is now 24/7 stabbing pain versus a deep throbbing pressure that came and went mostly during the morning and when lying down.  

We aren't entirely sure the problem is damaged nerves from the pinhole insertion or if the left side neuralgia condition was simply made worse by having to have the pins inserted in a sensitive area.  I know this sounds like we are saying the same thing, but it is a matter of asking if this is post-op pain that will heal on its own over time or will this pain just persist as part of the occipital neuralgia until that left side C2 nerve root is also decompressed?

We are curious to know if others who have had surgeries at the base of the skull have experienced similar complications from use of the surgical halo.  Did the stabbing pain eventually alleviate over time as part of post-op recovery? If so, how long did it take to heal?

Thanks in advance for any help you can provide

Peter

[selmaS]

  Hi and welcome to the Chiari forum.

Does ur friend also have Chiari?....and could u explain the fixations system??

I know the halo does cause a lot of post op issues, many r not aware of it being used and find sore spots and scabs and r confused....

Not sure i understand was the pain from the halo?

[peteremond]

What is the status of your head pain now?  Did the surgeon use a fixation system during surgery (ie., halo)?  

I ask because my friend who I care-give for had nerve decompression for Occipital Neuralgia, and his surgery used a fixations system.  About an inch from where the halo pins was inserted above his left ear, he has had excruciating pain that has been non-stop since surgery.  I'm hoping you will share some of your experience since your last post.  Does the pain abate over time? If so, how long?

Thanks in advance for any information you are willing to share.

[auntij2746]

Hi Karen,I had my surgery on 9/24 and about 2 weeks later started with this pain, both at the very top of my head and also like a crown around the top of my head. I when I asked ns about it he said that the pain can "radiate" '. It has become less frequent in the last week. It's so hard to know what's normal and what should cause major concern since this surgery and recovery is so different from person to person. I really like this site because no matter what I seem to experience, someone here has had some experience with it and that helps me a lot. June

[czpdx]

I've had pain in the exact area you describe since my second decompression in 2010. The diagnosis I received was nerve damage, even though it's a few inches away from the surgery site. Sorry.

[selmaS]

  Hi...so glad to get an update ion u !!

The pain that is not close to ur incision may be from the halo used to hold ur head in place...many complain of these small areas that seem to bother them more so then their actual incision.

I am surprised u r off all meds except for OTC types....keep in mind as the meds and drugs used for surgery wash out of ur system, u will begin to feel some of it....

  And many feel great post op, but do not take that to do too much as u can end up with set backs....

  Rest, rest and then rest some more <3

[Sexybare]

Best thing to do was contact dr. Only swelling and pain for me is neck and up and down incision area. May just want his thoughts. Wish I could be more help. Hopefully its jst post op swelling. Update us