Head Fullness

[Kristymoe]

Hello Everyone.  I am hoping someone can help me.  My mom had AN surgery about 8 years ago.  Ever since then, she has had head pain / head fullness - NOT headaches.  She has done just about everything we can think of, acupuncture, MRIs, headache medicine, brain fluid testing, etc.  Nothing has helped and the doctors are basically telling her that they can't do anything for her.  I feel she is suffering.  I read some old posts and I found that some have similar feelings.  Can anyone help?  Did anything work for anyone?  I am willing to consider anything.  Please help.  Thanks!  Kristy

[Sue]

Wow, I'm really sorry your mother still has that symptom.  I did have the fullness in my ear feeling before being diagnosed, but, thankfully, that just slowly went away.  I don't know why that is a symptom, and I don't know why it goes away or won't go away.  I don't think doctors know either, to tell the truth.  It was an awful feeling and I really feel sorry that your mom has to have that 24/7.  It's hard enough to have to learn to live with the rest of the symptoms, much less that one. 

I wish I had the answer, but sadly, I don't.

Sue in Vancouver USA

[FAITH40]

HI,

I HAD THE EXACT SAME THING, AND I FEEL FOR YOUR MOTHER. I FELT LIKE IF I COULD JUST STICK A NEEDLE IN MY HEAD IT WOULD POP AND FEEL BETTER! I KEPT TELLING MY DR'S. THEY WOULD DO MRI"S AND OTHER TEST BUT COULD FIND NOTHING... I FELT VERY STUPID, CONCERNED AND CONFUSED . IT IS ALMOST LIKE I COULDN'T EXPLAIN IT RIGHT BECAUSE IT WAS THE STRANGEST FEELING I HAVE EVER EXPERIENCED! I THINK THE FEELING SENSATION MAY HAVE SOME TO DO WITH IT, BECAUSE AS I HAVE REGAINED FEELING IT HAS GOTTEN BETTER.

MY DR. PUT ME ON TOPOMAX FOR HEADACHES, WHICH MADE ME SICK.... IT HELPS ALOT OF PEOPLE THOUGH.. I PRAYED FOR GOD TO TAKE AWAY THAT FEELING EVERY DAY, AND THANK GOD I AM HEALED!! I UNDERSTAND YOUR MOTHERS FEELINGS AND PRAY THAT SHE WILL GET BETTER SOON!!

TAMMI

[Kristymoe]

Hi Sue, Tammi and Cheri,

Thanks for your comments on this topic.  I am just praying that someone out there has had some type of answer that will magically cure this for my mom.  There is not a day that goes by and not a second during the day that she is not suffering from this.  Some days are better than others, but still, she is suffering.  She puts a smile on her face and continues her life as best she can. 

As I said, she had the AN surgery and the tumor removed 8 (almost 9) years ago.  Ever since then, she has had this issue.  About 5 years ago she had surgery again, because she had a hole in her skull from the original surgery.  That was supposed to fix the problem, but it did not.  Since then, she has been on all sorts of medications, like Topomox and others.  She has tested for low and high CF.  Nothing changes her head pressure. 

It is comforting to know that there are people out there who know the feeling.  She tries to describe it to doctors, and they don't seem to understand.  They keep telling her that she has headaches, and she said it is NOT a headache, although sometimes there is pain associated with the pressure.  Or they basically tell her there is nothing they can do.  She is frustrated and depressed.

Anyway, if you know of anyone anywhere that can help, please contact me.  My mom is the strongest woman I know, and I do not want her to spend the rest of her life suffering. 

Thanks to everyone - and I hope you are all well!

~Kristy

[FAITH40]

HI EVERYONE !

I HAVE NOT BEEN ON IN A WHILE, AND JUST READ POSTS SINCE MY LAST ONE.... KRISTY, HOW IS YOUR MOM? I HOPE SHE IS BETTER. CHERI, HOW ARE YOU COMING ALONG? SUE, HOW ARE YOU? I JUST CELEBRATED MY ONE YR. ANNIVARSARY!!! DRS. SAY EVERYTHING LOOKS GOOD, WITH NO REGROWTH. HE LEFT A BIT OF THE TUMOR AND CAUTERIZED . IT WAS SO ATTACHED TO MY FACIAL NERVE , AND HE WAS TRYING TO SAVE THE NERVE.  EVERYDAY IS A NEW DAY HERE, AND I AM JUST CLAIMING A COMPLETE HEALING!!! THIS YEAR HAS BEEN A VERY CHALLENGING YEAR TO SAY THE LEAST.  GOTTA KEEP HOLDING YOUR HEAD UP THOUGH, GIVING UP OR IN IS NOT AN OPTION !!  I HOPE YOU ALL ARE DOING WELL AND YOUR HOLIDAY IS OFF TO A GREAT START!!!