Headaches 7 months post op

[Diane S]

Hello all,

My name is Chris, and my wife Diane is 7 months post op for removal of a meningioma on her right side. I found this website just after she was diagnosed with an AN.  I began following everyones stories and accounts of their own experiences and obtained a lot of valuable information prior to her surgery. Thanks to all of you who have shared thier stories that have helped us so very much.
Diane had her surgery on 11/15/2007 and the tumor was removed and all nerves were saved.  Kudo's to Dr. Greg Helm and Dr. Bradley Kesser from the University of Virginia Medical Center.  They were both fantastic.  They kept us informed of everything that would take place before and during her surgery.  The surgery was an overwhelming success. All of the tumor was resected with all nerves left entact.  I was advised by Dr Helm that the tumor was actually a Meningioma, not the AN they diagnosed it as. 

 As of late, she has been experiencing sudden severe headaches.  Not really a migraine, from which she suffers also, but localized pain on the right side of her face from her surgical scar to her ear, her jaw and even her teeth hurt.  She also has pain over her right eye.  This is something that comes on without notice, usually of the evenings when we get home from work.  I can see the expression on her face when this comes on.  Its like someone hits her in the back of the head with a baseball bat.  Before long she is in tears because the pain is so bad, and will go straight to bed. She normally has to take pain killers that the doctors prescribed to her after the surgery to ease the pain, plus she takes maxalt for the migraines, but nothing really helps.  I am really concerned for her, both mentally and physically.  She has experienced some general migraines and facial numbness and tightness ( this alone is driving her nuts...now these attacks on top of that!!) ever sience the procedure.  The Dr's advised us that the numbness SHOULD go away, but so far...no luck. I don't think she can stand much more of this.  We have an appointment with her neurologist who treats her for her migraines on 07/10/2008.  Hopefully he can guide us in the right direction.   Has anyone experienced anything like this??  Any information would be greatly appreciated.

Thanks,

Chris and Diane Sproles
Pound, VA

[Jim Scott]

Chris:

I'm so sorry to learn of your wife's sudden onset of severe headaches.  I truly hope the neurologist can offer some help.  Others have had this kind of AN post-surgical experience and some have found relief with nerve blocks and medications.  I'm sure they'll be glad to share their experiences with you and Diane. 

I'm pleased to learn that reading posts on these forums was a benefit to you and your wife, pre-surgery.  I'm also glad to learn that the surgery was successful and I trust that between the folks here and Diane's doctors, she'll find relief from this pain.

I wish you both better days.

Jim

[leapyrtwins]

Hi and welcome Chris & Diane 

I don't have time to write a long post right now - on my way to take my kids and their friends out - but wanted to share a link with you.

It's from our own Captain Deb who suffers terrible headaches.  http://anausa.org/forum/index.php?topic=6709.msg67021#msg67021

You can also search on "headaches" and you'll find more posts from other members that may help Diane.

Good luck - and I'll be back to post later tonight,

Jan

[sgerrard]

Just to tag onto Jan's post, I think the issue Deb had, and others, has to do with a nerve getting trapped in the surgery scar, or something like that. I'm not sure if I have it right, but I think once they find the right treatment, they can free up the nerve, which greatly reduces the pain it causes, or at least block off the nerve. There are definitely some surgical methods and injection methods that can help.

Steve

[Omaschwannoma]

Hi,

After reading your post and the description of the pain I thought immediately "trigeminal neuralgia" which can be mistaken for migraine, also is a very excrutiating pain.  Please read about this and see your doctor for what can be done.

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

Hope she feels better soon!

[Janet]

Hi,

If the pain is coming from the back of the head, it could be from the occipital nerve or lesser occipital nerve which is outside the skull.

Do a search on "occipital neuralgia" and see if it describes the pain she is feeling.

Nerves can grow into the scar and cause all sorts headache symptoms. The occipital nerves can also become irritated, especially if it is near a blood vessel.

I had mine fixed after 4 years of headaches and all sorts of trial and error treatments. (Dr Ducic, Georgtown University)

I still have some headaches, but nothing like they were before my surgery to release the occipital and lesser occiptal nerves

Best of Luck,

Janet

[FAITH40]

CHRIS,

HI, I AM SORRY TO HEAR ANOTHER PERSON SUFFERS FROM HEADACHES. I AM TOO 7 MONTHS POST OP AND SUFFER FROM HEADACHES AS WELL. I JUST WENT TO SEE A NEUROLOGIST AFTER TWO SEIZURES CAME ON. I AM STILL WAITING TO SEE WHAT THE EEG SAYS AND TONS OF BLOOD WORK. THE MRI SEEMS TO BE FINE. MY NEUROLOGIST PRINTED OFF MANY FOODS THAT WOULD TRIGER A MIGRAIN, BUT I SAID WHATEVER IS CAUSING THE HEADACHES HAS TO BE CAUSING THE SEIZURES. I HOPE YOUR WIFE CAN GET SOME RELIEF FROM THIS. I UNDERSTAND HOW SHE FEELS... AND IT IS NOT A DAY AT THE BEACH!!! MY DR. ALSO PUT ME ON TOPAMAX AND THAT IS SUPPOSE TO REALLY HELP.. NOT SURE YET I JUST GOT THE MEDICINE YESTERDAY. BEST OF LUCK TO BOTH OF YOU!

TAMMI

[JTomes]

I too am having problem with SEVERE headaches daily without much relief. I had the 1st AN surgically removed Jan 29th, and the second tumor (14cm) by GK April 29th. I am very, very upset with my doctors as they are doing hardly anything to help me. I am also from VA, Richmond. My surgeries were done locally and went well, but the after affects have been almost more than I can take. I can relate to what yiu and your wife are going through. I am considering going to UVA for a 2nd opnion. I have had Migraines since I was 13, now 52, so I know what they are, and the effects that I have... this is NOT a Migraine. The only thing they tell me to take is Tylenol, which is like drinking water. I am scheduled to return to work July 21st, which at this point is unrealistic! If you or your wife need to talk, I would be happy to as we are basically neighbors. Good luck, please keep me posted!
Jo Ann

[amanda1987]

I have had the same problem since  my surgery in '02. I'm not real big on taking a bunch of pain killers, and I didn't want surgery.  (Cause that would just cause more scar tissue). More than likely scar tissue is what is causing your wife's pain. My advise is to visit a licensed massage therapist first. My doctors never told me about how that could help. Now it's 6 years later, and my headaches are still here. So I've started to go to a LMT. It does hurt a little bit, but after going repeatedly, my headaches have eased up. I still have some, but they are not as severe and they don't last that long. Hope that helps.

[Captain Deb]

Hi Chris and Diane,
I don't know how I missed this thread--I've been offline for a while.  At 7 months I was getting what sounds like Dianes headaches on an almost daily basis.  I was waking up with them and getting them in the middle of the night and during the day and at night--there was just no pattern.  I finally went to a headache neurologist after messing around with MRI's and CTs and my local neurologist looking for spinal fluid leaks and whatnot.  My neurosurgeon was out in California and there was no return visit to him since I'm here in NC!  The Headache Wizard put me on Neurontin, taught me how to self-inject Imitrex, and eventually put me on Topamax after I taked to a world renown specialst at the ANA Sympsium in Philly last summer.  Now I'm getting nerve blocks of Depomedrol about every 3-4 weeks. I wish I'd started the nerve blocks 5 years ago!

Between the meds, shots, and "nerve burnout" I'm doing faily well these days, however I did get full disability benefits because I have been unable to return to work full-time.

My advice is get to a pain specialist or headache clinic ASAP!

There is relief out there.

Capt Deb