How supportive was your AN surgeon post surgery with headaches?

[lifeisgood]

I wanted to email an update.
Since my last post, I visited my neurosurgeon. 
I explained exactly the pain , the location, the frequency and patterns of my "face pain:
He took notes and documented everything.
He was empathetic to my pain.
Told me he wanted to hook me up with all of the doctors that he thought could help me.
He then looked at me and told me that he didn't think this pain was connected to the AN.
He felt that since it didn't occur immediately after the surgery that it was caused by something else.

I about lost it.  I actually did start to cry and he asked me if I had considered anti-depressants.

This is the shortened version.  I think he really wants to help me, I just don't think this is the path I want to go down.
He did state that he wanted me to have another MRI to show the trigeminal nerve as well as come back to have a panel of his doctors evaluate my face.
A plastic surgeon was going to be there, a botox guy, and a few others.
I opted out since I was leaving for vacation for Thanksgiving and didn't want to postpone my trip.

Anyway, I did get botox today.  Will see how that goes.  I also wear my bite guard nightly without fail and now am using a NT 1 device which my dentist recommended for me for clenchers and now I am also a grinder.

I find it hard to believe that this is not the direct result of the trauma my facial nerve experienced from the surgery.  I don't have it in me to battle it out or dispute it.

That's all I have got.
Wishing you all well.
Mary

[yardtick]

Mary,

I feel for you my friend.  I too went through the same thing.  I was told by my neurologist, neurosurgeons only operate, they do not deal with the after.  A neurologist helps you deal with the pain, sometimes.  Why is it that a lot of Doctors do not believe the nerves are traumatized from the surgery?  Continue to ask your questions, get a second opinion if you have too. 

I am on anti-depressants.  I'm on Effexor and from what I have read about the drug it is also for pain management.  This forum has been a life saver for me.  I find the friendship, the support and the information has helped keep me sane because my facial neuroma has been very problematic.  Hang in there Mary, rest up so you can battle.  Keep us posted.

Thinking of you,
Anne Marie

[JudyT]

Hi all..........I too am agravated with headaches.....some worse than others. I am 4 years out from CK (Stanford.....Dr. Adler) initially I was given rounds of Decadron.....until I was "blimped out" .....about 50lbs overweight.......Then went the pain meds route,massage,hot packs to face,relaxation techiques ( as tension was very high) Recently had to seek help in the ER for pain (trigeminal nerve acting up) My tumor had begun to affect the 5th vestibular nerve just prior to CK) The facial pain was so intense, none of my "home remedies working".....called advice line and they told me to get to the hospital NOW.After examining me....they finally believed me and administered Ativan and strong pain reliver. Attending physician was "amazed" at my knowledge and ability to be my own advocate.I told her of my dilema and about this incredible site. She however was not well versed about AN's. ( I think I knew more than she) She was asking me questions.....don't they get ANY info on this during their education? Guess not. I have a headache today after a very restless night.....finally at 3:30 am took pain med and 5mg Valium.....it took about 1/2 hour and I finally began to get some relief and went to sleep. I think these episodes contribute to fatigue levels etc. Lack of good rest contributes to the rest of my post treatment issues. My coping skills go right out the window thus creating fear/frustration etc. I am about to be convinced the doctors really don't have the answers to our issues......if the tumor is dead or removed....they are happy with a WIN and  in my case "aging process" (68) I'm not buying that one and told them so. Why then do "young" people have the same or similar problems? I have taken things in to my own hands and remedies that work for me (most of the time) Meds.....yoga...meditation....quiet time...and other relaxation techniques....with relative good luck. It's difficult, to say the least, but effective....most of the time. Good luck to all who suffer with this dilema.....keep on advocating for yourselves....don't give up....Use this site to it's fullest and ask questions about your concerns.....it is very beneficial. Maybe, if we continue to press doctors for answers, they will eventually try to educate themselves and give us credibility for asking questions.
Judy

[diane]

I guess I have been very blessed with two wonderful surgeons who listen and try to help. If you haven't checked into the possibility that a cranioplasty might help, please do so. I haven't had a headache now in 10 years, ever since I had the cranioplasty. It was suggested to me by Dr. Brackman and Dr. Hitselberger from House Ear Clinic in California at the ANA Symposium in Dallas Texas in 1997.

[lifeisgood]

Just an update, I tried the effexor which my AN surgeon recommended at my last visit.
It is working very well.  I started having a "episode" last Monday and it lifted after I took Motrin.
These suckers usually last a few days.
On another note, I did receive a call from my surgeons office and they are inviting me to participate in a facial nerve clinic mid Feb.
I will be assessed by several doctors and hopefully some recommendations will be made.  This is something that I was invited to attend in Nov.


Also, to clarify, the surgeon I have been referencing is actually the otologist.  My neurosurgeon pretty much told me after the surgery that Dr. Wiet would be doing all of my after care. 

Will status after my Feb appt.  I feel better about the support I am getting now.
Mary