Bone tumor of the skull with headache, PLEASE RESPOND

[Rob2008]

Hello, I have a 3.5 centimeter bone tumor in the left supraorbital region of my skull that has not grown or changed since its discovery.   I had CT and MRI follow ups, and a nuclear bone scan also, that lead to the diagnosis of monostotic fibrous dysplasia of the skull although I did not have a biopsy.    My symptoms have been moderate to intense pressure behind my forehead that has not changed since 4 years ago.      Recently, I met with a new ENT who suggested high dose bisphosphonate therapy and referred me to an endocrinologist for this.    I have read reports online that 40 mg/day Fosamax,   or Reclast infusions have helped people with fibrous dysplasia in the skull and headaches.     Can you comment on this therapy at all?    What if I have this therapy, for example,  and it's really not fibrous dysplasia but is another type of tumor such as intraosseous meningioma for example, could this make my condition/symptoms worse by worsening the ossification?   There are so many quesitons on my mind,  please comment?

[ggreg]

Dear Neuroguru,
Hmmmm.  Me thinks ye should read about what orthopedists do, which they do nothing but work on diseases and disorders of the bone, and also you should wake up and remember what the SKULL is.  The skull is a bone.  If anyone has been diagnosed with what the original poster said, "bone tumor in the left supraorbital region of my skull," this is someone who has a tumor in the bone of his skull just above his eye.

Go to this government website provided by the National Institutes of Health:
http://www.nlm.nih.gov/medlineplus/bonecancer.html#cat3

About a third of the way down on the left, under the heading "Overviews," click on the link for "Bone Cancer," which will give you a Mayo Clinic article about bone cancer.  Go down again about a third of the way, and you will see clearly that an ORTHOPEDIC SURGEON operates on bone cancer, in concert with oncologists, which both are the type of docs I told the original poster 16 months ago to seek out for getting a biopsy and any treatment.

You might argue with ME, but you cannot argue with that respected online stuff.  I might also mention that I gave two examples of people I am personally familiar with that had cancer problems, one with a brain tumor and one with bone cancer.  I watched the whole thing unfold from beginning to end with those people, and therefore I answered the poster's question.  And since this was personal, I gave him a serious warning reply, to go to an orthopedist AND to be sure to get a biopsy, so he wouldn't make a mistake by letting an ear nose throat ENT doc become involved in his treatment, and also so he would not hesitate in getting the biopsy.

And by the way, an ear nose throat guy treats otolaryngeal problems, not the EYE or skull BONE above his eye, and as for reconstructive surgery of the face itself, any physician would always turn that part of the case over to a facial plastic surgeon for reconstruction.  You see, this poster's tumor was not located in his sinuses, throat, or ear or anything connected thereto.  It was located in the bone above his EYE.  It just so happened that he ran across an ENT in the middle of all this, just re-read what he posted.  And this poster said nothing that would indicate the tumor was spreading to his brain or pushing on the brain.  I cannot know why he posted in neurology.  But I DO know something about bone cancer, and cancers that are not biopsied, so I replied.

But I only say all this to make sure that anyone who reads this has a proper clarification of the information YOU just put out there.  
GG

[neuroguru]

Orthopedic surgeons have absolutely no training or expertise on diseases of the face/skull/brain so your advice in that regard is way off the mark.  ENT surgeons, on the other hand, do facial reconstructions after trauma or tumor or infection.  Alternatively neurosurgeons have some degree of training in treatment of some skull tumors especially if they invade downwards into the brain or the dura.

I realize ggreg's post was 2 years ago but I wanted to make sure no one followed this particular part of his suggestion :)

[ggreg]

Dear Rob,
Well, I can't comment on whether the therapy being recommended will help you, but I CAN say this.  Even though doing a biopsy of your particular skull bone tumor may be somewhat problematic, there is no question in my mind that you should have that biopsy.  In addition, if anybody treats it, it's going to have to be an orthopedist, not an ENT.  

The reason I say you should have a biopsy is because I had a friend who had a tumor, it was in his brain, and even the very best doctors took a wait-and-see approach, on account of it hadn't changed and brain surgery can be dangerous.  Well, within six months, that tumor went into his lungs, and so his heart failed, and I don't have that friend anymore.

And the reason I say an orthopedist should be doing the treatment for you is because you have a bone tumor.  While they've thrown a likely diagnosis out there, I can tell you that a close relative of mine had bone cancer, and he wound up having his femur removed and replaced with titanium, the cancer kept going and went into his lungs, he had a dozen or so operations, plus a year in the hospital with chemotherapy, and we almost lost him.  And even in the beginning, with three experts looking at the bone tumor slides, one hesitated about whether or not it was cancer!  Luckily my family took charge and said treat him as though it was cancer, and thank goodness they did, or he'd be dead by now.

I'm sorry to be so dramatic, and I do have many possibly irrelevant but amazing stories to tell from all my life experiences, but it just bothered me so much that an ENT is going to treat a skull tumor that you report is giving you "intense pressure behind my forehead."  Son, if you're in pain and you have a tumor in your skull, I would be mighty careful about this situation, and only let an orthopedist fool with it.  Now, if that's who diagnosed you, then go to an oncologist or cancer specialist, or go to a university hospital orthopedist, but please get the biopsy done at the very least.  And could be the diagnosis and treatment and person doing all this is fine, but I'd be dang sure if it was me.
GG