Question on cranial fibrous dysplasia and headache

[RobertMillerFoundation]

Hi, thanks for taking my question.  I have a 3.5 x 2.5 cm fibrous dysplasia tumor above my left eye.  The only symptoms I have is a never ending severe dull headache behind my forehead...not exclusively to the exact are of the tumor.  The neurosurgeon at my local hospital refused to operate because he said he only would operate for cranial nerve deficit or cosmetic reasons.   So I'm extremely frustrated and contacted a couple surgeons and sent them my MRI films and they both said I should have tumor removal to relieve my symptoms.   However my local doctors don't think I should get surgery since they aren't so sure it's causing my symptoms... I'm not sure about it either, but I do have a rather severe deviated septum.    Could that be the cause of my symptoms?  It's the only other thing ever found, and I may have surgery for that first to see.   I just cant stand the headache anymore, and I'm determined to get the tumor removed if the nasal surgery doesn't work...Well anyway, maybe you could look at my website if you have time...You could perhaps orient yourself with the couple of MRI images and the letter I received from a Dr. Jho guy from Pittsburg.    Please tell me what you think about my situation..  Here's my site:  http://robertmillerfoundation.org/letter.html

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   I am also unsure if your headaches are related to your orbitofrontal osteoma.  These lesions can be painful, but most often the cosmetic problem is what drives patients to surgery.  The lesions are benign lesions that contain disorganized fibrous tissue and bone.  The headache that you describe is consitent with chronic daily headache (also called tension type headache) and may be directly or indirectly due to your osteoma.  For your headaches, I would suggest starting elavil (amitrypiline) 25mg at night (each night).  You should start to have some relief in 3-4 weeks.  The dose of elavil can be titrated up as needed.  In reguards to surgery, I would attempt to get your headaches under control medically first.  If you have tried 3-4 good headache prophylaxis regimes (elavil, topamax, nadolol, verapamil,etc) for  at least 4-6 weeks each then I would push for the surgery (with the knowledge that the surgery may or may not help the headaches).  If you would like to have the surgery reguardless of the headaches, then I would recommend that seek a surgery consult at a major academic center such as UAB University of Alabama Birmingham in your case. It is important to understand the risks of the procedure and not to overstate the potential benefits of the surgery (other than the cosmetic ones), but if the medical therapy fails, then surgery may be your best option.
I hope this has been helpful.

[alchris]

Hi Just wanted to ask have you always suffered from headaches if not can they really be sure this is not causing your problem. I look at it this way doctors have no idea how the patient feels and cant believe what patients tell them half the time.  (having the same problem with doctors they found something in my auditory canal and are constantly telling me that is not causing my symptonms though i am positive they are wrong and I am right)  The last doctor I went to I asked him if a tiny little splinter ever hurt his finger he said yes, looked at me like I was crazy but my comment back to him was that a little splinter that doesnt belong in the finger can cause you pain but my small cyst in my auditory canal cant cause me pain.  Needless to say he got annoyed but it is a point I was bringing out to the doctor. no one can really say what causes pain. I was trying to tell him if it doesnt belong there how do they know that it isnt the problem and the signal of pain and other symptoms is what is going on to let the body no take care of me.   Where doctors get the idea that people cant feel the things they are decscribing from I have no idea but it is frustrating. What do they think we go to them for, just for the fun of it. My expreinece is that the  symptons and pain brings us to the doctor in the first place because why else would we go.  Not to ramble but if It doesnt belong there cant they understand it is the most likley cause of the problem.  I wish you well as I know how frustrating it can be to try and get someone to listen and most of all help,.