HELP-titanium plate removed?

[LBM]

I have been an active member of this wonderful helpful site for the past year since my diagnosis. On April 27th 2005 I had a 3 cm AN surgically removed. I had a terrible recovery and spent 22 days in the hospital due to severe pain. I didn't know pain that bad could exisit. It was inhumane. I am a 31 year old female and had to go back to work after two months. It has been almost a year and I still have headaches at least twice a day. I have been on every medication from my neurologist and nothing helps. I went to see my neurosurgeon today to discuss this with him and he felt that the titanium plate he placed in my head most probably is the source of the pain and reccomends removing it. He can't guarantee that it will relieve my headaches but thinks it is worth a shot. I just can't bare the thought of another surgery. I am terrified. It is like this thing never ends. Anyway, I was wondering if anyone has heard of this or had this done to them. Any adivce would greatly be appreciated!!!!!!!!!!!!

[HeadCase2]

LBM,
  Sorry to hear of your pain problems.  I've read where headaches, as post-op problem, can be due to how the Dura and Skull are closed and repaired.  Rough stitches closing the Dura, or a rough Skull surface facing the brain may be enough to bring about headaches.
  If this is the cause of your headaches, you may want to consider consulting with another surgical team.  One that is very experienced with these issues.
  I hope you find a solution for your headaches soon.
Rob   

[Battyp]

what type of surgery did you have?  They closed my skull with titanium screws not a plate.  Wish I had something to offer you for the pain but I'm clueless on that one.  Know I'm sending prayers your way!  I think I'd get another opinion and make sure everyone is on the same page.  I've been told so many conflicting opinions through this whole process.

[LBM]

Thanks for your suggestions. I had a titnaium mesh plate put in with screws. I think maybe I do need to consult another surgical team. I am so frustrated. My neurologist tries everything and nothing seems to work. I had a subocciupital approach to remove my AN. Thank you for your kind thoughts. I just want to find someone who had the titanium mesh plate removed to tell me if it helped with their headaches. Is there anyone out there?
Lauren

[becknell]

Lauren -- I'm still trying to get you the contact info of that woman who had her plate removed in our support group. I misplaced my list of contacts and last week I had to e-mail the support group leader, who hasn't gotten back with me yet, but as soon as I hear something from him, I'll let you know. I don't think she would mind talking to you if it helped you.

[Larry]

lauren,

i don't think I had the metal plate inserted but i have had headaches for 3.5 years (since surgery). I find the best drug is neurontin but it only dampens the pain a little.

So far, the best med is this web site and in particular, the wacky wenches. Refer to our Good morning thread for some good old fashioned remedy - laughter. It works for me


Laz

[matti]

Larry - My doctor wants to put me on Neurontin, due to facial nerve misfiring. Been doing a little research on the drug and the majority of side effects include severe headaches, drunk feeling, and major weight gain, between 15 to 40 lbs. What if any side effects have you noticed?

Thanks,
matti

[Larry]

Matti,

I find neurontin to have no real side effects except I get a little drousy around 4.00pm. I take 3*300mg per day. At times I have taken a double dose. The drousy could just be me getting sick of work and wanting to have a shut eye.

As for weight gain - naaah. Not at all. In fact, I have lost 3 kgs in the last 3 weeks from a base weight the same as i was pre op 3.5 years ago.

Go for it - not sure how drug prices go in the U.S. In Oz, there are two scales. If its on the national health then it costs $29. If its not, then as in Neurontins case, it costs $97 (for one month). I get $50 back from my health fund. This month, I am taking a generic brand and it does the same trick and is $20 cheaper.


Laz

[bonehead]

I am sorry to hear of your pain/misfortune.  I would recommend you find a new neurosurgeon, and get a new approach.

My $.02

Jon

[LBM]

bonehead
Did you have good results with your surgeons?  What was your experience like. Maybe i need another opionion. I can't stand sufferring everyday with such bad headaches.

[Battyp]

I had a subocciptal and they put my bone back in..I wonder if that makes a difference with the headaches?  Mesh vs. bone??

[Larry]

Bonehead,

Easier said than done, I have seen 5 neurosurgeons / neurologists, 2 that specialise in pain management - next one will be in June (can't get in any earlier). Tried all sorts of direct meds except for LSD (lol). I have tried accupuncture, cortizone injected into the head, extensive ice packs, and head pads around the neck. I do find neurontin helps a little but please let me know if you have another course of action. I am waiting for Janet to finish her botox trial to see what happens there.


Larry

[bonehead]

LBM,

My experience was quite positive in retrospect.  There are always challenges, and yes, I had headaches, but they were never so bad that a couple of tylenols wouldn't take care of it.  I rarely get them now.  If I do. it's usually when the weather changes.  My team was brilliant, and I would recommend them to anyone - and have.  I would propose that the pain issues are only a symptom of somethiing not right that needs to be analyzed and corrected.  Once resolved, the pain should also be eliminated.  Best of luck to you.

Jon

[Battyp]

Hey Laz, I know a good pain mangt buy in Fl..Come see me I'll hook you up!  I did the botox for my migraines before surgery and it worked great!  I was hit by a drunk driver and damaged all the nerves in my neck. This guy worked miracles and didn't stop until he had me symtpom free.  I've read an article where he helped someone who was 5 years post an surgery find relief to where she is symtpom free.  I swear by zomig for headaches.  I haven't used your meds.  Surprising since I have been a walking pharmacy with headache meds!  I wish I could wave my magic batty wand to make you all better!

[Captain Deb]

Bonehead,

Easier said than done, I have seen 5 neurosurgeons / neurologists, 2 that specialise in pain management - next one will be in June (can't get in any earlier). Tried all sorts of direct meds except for LSD (lol). I have tried accupuncture, cortizone injected into the head, extensive ice packs, and head pads around the neck. I do find neurontin helps a little but please let me know if you have another course of action. I am waiting for Janet to finish her botox trial to see what happens there.


Larry

Laz--are these headaches migraines?--one sided w/ pain behind the eye, light sensitivity and nausea (that barfy feeling)?  Mine were definitely diagnosed as migraines.  Also had cortizone, acupuncture, no LSD ( not LATELY, anyway)though.  I swear by Zomig, too. I have it in a nasal spray, as my doc says my tummy freezes up when I get these suckers.  Mine just sort of faded away after 3 years--down to 1 or 2 a month now--managed pretty well by Zomig if I take it in time.  A lot of the time they start out a exertion headaches and end up as migraines, but 1/2  of a hydrocodone usually knocks that initial one out.  Can't take too much of that cuz it causes rebound headaches.

TTFN (ta-ta for now)    NO! not ta-ta's, ta-ta you perv!
Capt Deb