5.5 wks post op - still a lot of pain

[mrspea]

Had craniotomy w/dural patch & C-1 lami on 1.11.11; had a significant syrinx too.  NS and team one of best in country. NS said it went great, no surprises. One nite in ICU and 1 in step down, then home. For pain, the sent me home with diludad and valium. At 2 week mark was in ER, spinal tap & CT scan. Said I had inflamation and put me on steriods.
Two weeks later (thru now) I not only have CM symptoms (ringing in ear, 2 drop attacks)  but was in for MRI then in ER b/c for about 5 days was having intense pain across my shoulder blads and down each arm. It was the strongest, dullest nerve pain.
It comes in waves so I call them *episodes* . At first it was only over night and now, its throughout the day; lasting 2-5 minutes. It can take my breath away. Pain levels vary. At first, I was in tears it was so bad. Now thnakfully, those are few but I can have 20 *episodes* in one day. The NS team consulted and said since the MRI looks good it's nothing to worry about, sorry about your pain. I wasn't seeking pain meds but really wanted relief. THey finally said it could be caused by the syrinx shrinking. Has anyone experienced this or heard of such?
Not only that, but I have intense pain on my skull. I think it's in the area of where the patch is attached but by days end and into the night it's unbearable. I don't sleep well from the pain as it wakes me every 20 mins or so. I know the surrounding nerve are regeneratimg and may that's why I can feel pain in that area now?
Saw NS 3 weeks post op and he said this takes time, pls be patient. Also added I've had this my entire life (44 yrs) and we don't know what to expect.
I was so determined to be positive pre-op that's what I focused on. NS team didn't talk about  what to expect post op. I have to return to work 3/7 and I'm so scared.
Any wisdom to share? I really feel worse now then I did pre-op.
Thank you.

[selmaS]

  Hi...I am going to celebrate 2 yrs post op in May...that said I can tell u it can take up to 2 yrs to heal...I know bcuz I can see the diff...I am not back to work, can not drive....and have several other issues going on ...but out side that, I did not have the pain u r talking about.....

I wonder if u r having an issue with the patch...do u know what type it was?

The other question I have for u is, do u get HA's worse than b4, and r they worse depending on ur position?

Post op dr visits look to the scar for healing on the outside...the MRI's deal with the inside, mine was done at 6 months post op.....

If u have more sick time/FMLA...take it....or make sure u go back part time...take it slow....I do not know what type of job u have...but the duties u perform at work as well as the time frame at work and stress will determine how well u adjust to the routine again.

Since u had an infection do u know if u were checked for ne other remaining issues?

Ehlers-Danlos?.... meningitis?did they do an LP?

  "selma"

[joyus12b]

Hi, I had my surgery in September with a dural patch repairing october.  I did not have a syrinx, but I can tell you that I spent a great deal of time laying down. I did get up from time to time, but for about every twenty minutes up and about, I spent couple of hours lying down.  It took at least a couple weeks to build up to the twenty minutes also.  My worst pain post op after my second surgery was my neck pain. I hope you start feeling better soon.

Jocelyn