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View Full Version : Post MVD surgery suffering with new Occipital Nerve Pain now


NattyNat11
11-17-2006, 04:54 AM
Hello fellow people with pains in the brain,

I initially had my MVD surgery about 2 months again, after surgery I then experienced some initial occipital pain. I was administered a steroid shot in my head (lovely can't think of anything more pleasant to have after having surgery). The pain subsided a bit but then I got a horrific staph infection. Had to have another surgery to have the noggin cleaned out for the infection. Was on Vancomycin by IV drip for two weeks following (good times, that was a treat, that damn pic line drove me insane). Was then prescribed Norco and Valium. It was a fun escape for a while but I am still suffering. I feel as if a large worm has been shoved under the skin on top of my skull and it burns, throbs and tortures me through out the day. I realize this is due to incisional pain which I have faith will go away but the occipital pain is a different beast and has come back to haunt me. It gives me a great deal of concern. Went to my pain specialist a week ago and he prescribed me a lidocaine/ prilocaine cream, it feels good initally on the scar but then after 20 mins it feels as if I could have just used heavy mositurizer on it and would have had the same effect. Went back to the pain specialist today and he gave me another injection. I did not take a pill all day to see what would happen and guess what? It still hurts. So I have taken a Norco and that seemingly has lessened the pain (again probably while I sleep). I guarantee I will wake up and once again feel like holy sh#*t! I had brain surgery as that is generally how I feel every morning and it takes me at least a full hour to acclimate. My pain specialist says he will give me three more rounds of the steroid and if the pain does not lessen it is a possibility that I will have to go in for an exploratory surgery. That scares the living daylights out of me I cannot imagine anything worse. :eek: Any suggestions? Comments? Help...would be GREATLY appreciated. Thank you for taking the time to read my post I realize that sometimes these tend to become mundane after reading one *****ing and going on and on.....as we are all going through this.

Health and happiness to all :)

baywatcher
11-17-2006, 08:36 AM
You couldn't find a better place to be, although it's a little bittersweet to welcome anyone here, but at least you can moan and groan and we all understand. There's also a good chance of finding someone with an idea that might be just the right idea for you - or maybe it's some consolation to know that you're not in this boat without a paddle all by yourself.

Sounds like you are in a really miserable place right now. I can send you sympathy, cyber hugs, and concern. Others may be able to offer something more concrete in the way of help. Keep us all posted, even if no one has a solution for you your posts may help others. It's a super support system.

I can't say have a good day - maybe have a good hour or two? Even a laugh? We care. Nancy

stefanies
11-17-2006, 12:36 PM
Hi! I got a staph infection and had to have a 2nd surgery as well. Did they take the plate out of your skull and just leave it open? That's what they did for me. And the picc line sucked for the 5 weeks I had it. My nails grow so much that month! LOL
Anyways, I got ON from that surgery as well and did the nerve block route. The surgeon I saw yesterday said that it won't go away on it's own. I don't know if I buy that, but anyways, I had 8 blocks in my head and had to up my TN meds. So I'm basically on the same dose as I was for my MVD.
Feel free to email me or post. I feel your pain. I had a pretty similar experience as you and am still suffering 10 months later.
Just know you are not alone. That always makes me feel better...even when I think it can't get any worse.
Stefanie

NattyNat11
11-17-2006, 01:44 PM
Nancy thank you for your support and Stefanies thanks for sharing your experience. Albeit I was not thrilled to learn you are still suffering 10 months later, not a good sign...I am sorry you are going through this as well. Have the docs given you any possible solutions to this? Yes, they did remove the plate. My original neuro said sometimes they can put it back in but honestly I am not really interested in having my head opened up again any time soon. I emailed my neuro last night and he reccomended heat and possibly a cervical collar (but honestly I do not want to look like that man in the Brady bunch who faked his accident and be roaming around with something so obtrusive.)
I bought a neck pillow a few days ago and I am hoping that will help. Two people I know who had brain tumors reccomended that solution to me, they both said it helped with the pressure.

Solutions and peace to everyone!!
N

baywatcher
11-17-2006, 02:58 PM
Natty, everyone who has ever had to wear one of those cervical collars hates it. But, hey, sometimes it helps. Here's one way to take the curse off the collar and even inject a little humor - slipcover your collar! There's no end to the possibilities. Have a turkey-day collar, a jingle bells collar, a cute kitties collar. You can have a whole wardrobe of collars and you would be surprised to see how people smile at the unexpected sight. In fact, if you don't want to fuss with actually sewing (simple to do) a cover, just wrap one of your prettiest scarves around it. Sometimes a little thing can make a difference, and it would be worth a little try to see if it helps with the pain. I had to wear one for whiplash and much as I loathed it I had to admit that it helped. Gives you the option of explaining or not, because it causes some curiosity. "Sore neck" to "brain surgery" whatever, people like a good sport. Nancy

NattyNat11
11-17-2006, 10:37 PM
May just buy one to wear around home. I am not a holly hobby, crafty, stamp/scrap book collecting kinda chick, but your email did give me a laugh Nancy. :D

sengels
11-19-2006, 11:24 PM
Sudafed, Sudafed, SUDAFED! It saved my life the week of my MVD. Oh, it is the week of my MVD, see my above post! it really works for the eye pain.
Susan E

NattyNat11
11-21-2006, 03:17 AM
I wonder if Allegra has the same effect? Sudafed makes me kinda sleepy...definitely feel like the steroid injection is working, the pain has definitely lessened this week.

EE03
11-21-2006, 10:05 AM
Allegra is an antihistamine, unless you are talking allegra D, then it has a decongestant. Sudafed is a nasal decongestant. Check with your pharmacist.

E!