Long story short. I started noticing a lump growing on the forward part of my head about 18 mos. ago. Like most men, I didn't think much of it till I started getting the good old headaches because of it. I went to my primary care physician who ordered an MRI. The results showed three lesions in my skull. I had the largest lesion exscised and biopsied in Sept. The lesion biopsied as hemangioma. I was relieved at the time but my headaches did not cease. I did a little research and found out that it was highly unlikely that the lesion could be a hemangioma due to the fact that they are congenital and do not manifest themselves in a man my age. This lesion just showed up when I was 44. When I look at the MRI, I can see that the other two lesions look nothing like the large one under contrast. I went to see a neurologist that my neurosurgeon referred me to because of the continuing headaches. All he wants to do is mask the pain with medication and PT on my neck. He thinks that this is all stress related and has nothing to do with the tumors. When I told him about the improbability of the hemangioma diagnosis, he got a puzzled look on his face and replied that he did not know that was the case with a true hemangioma. He and my neurosurgeon want to MRI again in Jan. to see if there is any change in the two exsisting tumors.
In the meantime the neurologist wants to try Depakote as the naproxen he had me on did no good. They both claim that the lesions aren't the cause of my headaches but I really wonder. The pain is getting progresively worse and is keeping me up at night. I am also having abdominal pain and am noticing the vision in my right eye is being affected somewhat. I was never sick or spent a day in the hospital prior to this and am not a complainer but I guess my question would be, how much more time do I give these guys a chance to figure out what is going on or do I take my concerns elsewhere. I believe they are good doctors, but I think my case is rare enough that they aren't quite sure as to what is happening. I just don't want to wait untill something comes along that might not be able to be corrected.

Thanks for any information and it is a relief just to find this site.
Bob

Bob,

Hello and Welcome to NeuroTalk.

I do not know anything at all about tumors of the skull or hemangiomas, so I am sorry that I can't help answer those questions for you.

I do have experience with doctors who seem clueless and don't know how to answer my questions and don't know what to do next. In my case, I decided to give up on the local doctors, and I made an appointment at a teaching hospital in a major city.

The doctors there immediately knew the right answers and were able to make a proper diagnosis and give proper treatment.

I don't know if you live in or near a major city, or if your health insurance would allow you to make an appointment at a teaching hospital without a referral - but it is something that is worth considering and worth looking into since the doctors you have seen so far are not able to answer your questions properly.

Take care,
Liz

so these tumors are on the outside of the brain? on the bone or in the tissue between the bone and skin?

nothing is showing inside the brain area correct?

sorry just trying to clarify for myself.

[The pain is getting progressively worse and is keeping me up at night. I am also having abdominal pain and am noticing the vision in my right eye is being affected somewhat.]

did they only MRI the head? or head and c spine?
maybe a more comprehensive MRI or CT? more area checked?

If no other spine, bone , tumor problems show on the testing -
possibly trying an expert chiropractor for the headaches - esp if you had any previous hard falls, sports injuries, head or shoulder hits , car wrecks etc??
if you decide to try that interview and check them out well
look for uppercervical treatment by DC also.
just a suggestion

I'll ad some links-
Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html

The tumors are in the the bone and and the MRI was done only on my head.
When I look at the MRI, the large tumor that was removed ( about the size and shape of a pecan ) did not get into the dura but was pressing against it. The largest of the remaining tumors looks to me as if it is involving the dura and may even be sub-dural, but I'm no expert at reading an MRI. I am a biologist though, so I'm no dummy. I live very near Wichita, KS and am seeing both my specialists there. I had considered chiropractic care but my neck did not start hurting till here recently. I am just confused and tired of dealing with the pain.
Thanks, Bob

all i can suggest is keep on it until you are satisfied with the answers the docs give you - if no answer look further.

I know it is a draining ordeal ...

I'd suggest visiting the headache forum and the epilepsy forum. While they may not apply directly to you, you will find the symptoms are similar with many conditions.

Few questions:

1) Have you had an EEG?

2) Could you explain the abdominal pain in detail? As in, is it an achy pain; a gassy pain, etc. (I swear, this actually has a reason behind it)

3) What are you taking Depakote for? I want to clarify they didn't give you this for a headache.

4) How long do your headaches/migraines last (from start to finish)?

5) Do you have any pre-warning signs (auras) to warn you they are coming? If yes, what are the signs?

6) Have they tried Butalbital (Fioricet) or Relpax?

Thanks!

PS: Welcome to NeuroTalk!

I'm trying to find out if Panhandle still happens to be checking in...
I know it's been a while. I have a similar story about skull hemangiomas
that I wished to discuss with him.
Please reply if possible so I can find out what happened, and share my story.