3.5 yeras....tired of post craniotomy headaches...please help!

[spitfire2]

Had a left temporal lobectomy for intractable epilepsy and a brain tumor back in Aug 2007, and have been dealing with chronic pain ever since.  I have tightness/pressure/squeezing feeling across my forehead, and somewhat on the side of my head.  Gets worse when I look up.  Been going RUSH pain center in Chicago for almost three years (also went back to Mayo, where I had surgery), have tried injections, freezing certain nerves, many meds, even a surgical trial period for implantable electrodes (i.e. a neurostimulator), but no rip roaring success for this pressure pain/tightness.  Also tried many alternative treatments, such as acupuncture, etc, but was not helpful.  Does anyone recommend any pain centers I could try, which could actually help??  How is Stanford pain center?  I'll go anywhere in the country to try and gain some relief from this chronic post operative pain, which has plagued me for long enough--please help before I lose my sanity!  Thanks much--

[spitfire2]

Thanks again for your kindness.  Sent you a response as well, just for note.  Best to you--

[Mama50]

I posted a response to your email.  Just wanted you to know in case you missed it.

[spitfire2]

Hello there,
I just sent you a mail....I think I have read about your son's story somewhere on line 3 years ago or so when I started searching, and was also struck by how similar our stories sounded....  
Best to you--

[Mama50]

If you ever find any relief or a place to get relief, please post.  I thought you were my son posting at first because it sounds exactly like his history.  The only difference is that he had surgery in May 2007 and it was in St. Louis.  He did go to Mayo once, though, to see if he could get some help.

[spitfire2]

Have been sending so many messages, I forgot about the inbox message.  Sorry about that!  Feel like an idiot.  
Thanks--

[spitfire2]

Yes, and thank you again: I will definately check out his website.  I really appreciate your consideration.  I hope things go well for you.  I would die to get any relief from this hell....I didn't expect to exchange seizure reduction with chronic pain!  

I don't mean to sound like an idiot, but I must admit....I forgot about this website until really recently (bad memory from yrs of seizures).  I don't know what happened to your initial e-mail, or my initial response to your e-mail.  Do you know what happened to our messages, since they don't show up here?  

Is your pain a result of surgery as well?  Do you also have chronic head pain?  
Thanks again,
spitfire2

[achilles2]

I sent you a message.