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I have Pheo as do my daughter and my Sister, two neices and a nephew. My two neices and my nephew have developed von hipple . my yougest daugher just started having migraines periodically around six months ago, now it has been 4 days in arow with a migraine. Did you have migraines, and did your family physicain just pass them off?
Hi Jeanne.
If your daughter has been developing an increasing number of headaches, as well as an increase in intensity, I think it would be wise for you to have this looked into by another doctor if your family physician is blowing them off.
It may or may not be pheo-related. The only way to know for sure is to have her tested with the preferred plasma free metaneprine test, or the 24 hour urine test. Is she followed regularly with a doctor who is familiar with VHL? Does she have any other symptoms? Has her blood pressure been checked?
With your clear family history of pheos, I think this needs to be ruled out fairly quickly.
God Bless~
Alison
The two most common cause of intense headaches associated with VHL are:
(1) Brain tumor
(2) Pheo
Since your family gets more pheos than brain tumors, I would check for that first. But don't forget the other in case it turns out not to be a pheo. Depending on the symptoms, you could check both at the same time. If there is pressure building in her brain, they can usually see that in her eyes or with some neurological testing. But often people can touch their nose and walk a straight line and still have fluid building in the brain.
If you have told your family doctor about this strong family history, and he is still blowing it off, it sounds like you might consider changing primary care doctor. He doesn't sound very cooperative. You certainly need to rule out VHL involvement before you start looking at it as "normal teenage stuff". Both VHL possibilities are potentially very damaging, and deserve careful consideration first.
Some doctors feel that pheos are so rare, it can't possibly be that. But they forget to look at the family history, and the prevalence of rare tumors in families that carry genetic alterations like VHL. Yours in a family where this suspicion rightfully sits top-of-mind. You are doing the right thing, asking the right questions, to protect your child.
You are not being a panicky mother, you are absolutely justified in your suspicions -- even if they turn out to be wrong. Increasing frequency or intensity indicates a need for swift action. Go for it! We're behind you, and will be happy to coach you and encourage you as needed.
See the Handbook for guidelines on testing for pheo. There is additional informaiton at http://www.vhl.org/pheo, and the lastest newsletter has some good information as well.
All best wishes,
Joyce
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