The ONLY definitive way to diagnose pseudotumor cerebri

You go gurl! Why can't some doctor's just admit that they aren't "up" on migraines and refer their patient to someone who is?? I've met doctors like that in my migraine journey, when I didn't have sense enough to believe in myself and find another doctor. I've said a prayer for this poor woman in hopes that she'll find what she needs.

I love your slapping graphic, Teri!

God do i love the way you say things as they are! It's refreshing. Weeniewifey, bim

Seriously!  I have a 12 yr old daughter that has had head pain for three months, with nausea, dizziness, light flashes, and is worse upon awakening.  Neuro-Idiot say she has a 1 in 10,000 chance of having PTC since she does not have papilledema!!*0*  Oh, and she has also had the swooshing sound in her ear!  I am so frustrated with arrogant doctors that won't listen!  Funny how two younger doctors asked the same exact question upon hearing her symptoms...."Has she had an LP yet?"  This neurosurgeon said he couldn't get an accurate pressure reading on her because she is 12.  He tried to intimidate me by telling me he would have to drill a hole in her skull, and insert an intracranial monitor!!!  Oh, please!!  I guess all of the othe million nuerosurgeons in the world that use LP's are nuts, Huh???

Thanks for the article!!

Rebecca,

Sorry you and your daughter had this problem. I've lost track of how many people have been told they can't have PTC because they don't have papilledema, but it happens over and over again. Doctors used to say that PTC is rare, but it seems to me it's not as rare as some people think. Maybe it seemed rare because it's not being diagnosed?

Hope things are better now!

Teri

Way to go, Teri!

Did anyone email a link to the Neuro Idiot? Maybe we should start doing that! En masse. And maybe we should start emailing such info (naming and shaming such NIs) to their licensing bodies.

Maybe these NIs also need intensive courses in Ego Management also!

As you say Teri, migraine disease is bad enough without these oiks chipping in their tuppence worth of ineffective speculation.

I need help and guidance.  My daughter is 11 and has had a "migraine" for 4 months.  Please note I said migraine in the singular because it hasn't let up for a minute.  We've done everything including hbot therapy.  She also has RSD.  I took her yesterday to a ped. neurologist who looked in her eyes and ruled out pseudotumor which I specifically asked about.  She said she hasn't taken the meds that cause it.  Any advice here?  Does anyone have a Dr anywhere that might take a pediatric case--- in case this Dr can't find the cause of the headache?  She said she'll go the psychiatric route if they can't find a cause which had me extremely upset.  Thanks for any advice!

 

Frustrated mom!

I was first thought to have PTC when I went to my optometrist because I had headaches for so long.  I had already had a CT scan and an MRI.  My GP said it must be sinuses so I was on steroids and antibiotics forever.  Finally I went to the eye doctor, thinking it was my last hope.  He was concerned because I told him I saw shadows.  He checked my optic nerve and said I had 2+ edema and I needed to see a neurologist right away.  His receptionist called one and they didn't call back with an appointment, just for my insurance info.  I told a friend of mine about the ordeal-she just happens to be a surgical nurse that works with a different neurosurgeon.  He blew up my phone, leaving message after message.  I didn't think it was that big of a deal because the other guy didn't call back and this was days later.  I left work and went straight to his office for an LP.  My opeing pressure was 45 cm/in3.  He said normal was between 12-20.  I was put on Diamox.  I had several LP in the next few months.  He said the only way to get rid of it was to lose weigh.  I did.  I lost 40 lbs, and the headaches went away.  My vision has changed, and I have to wear glasses now.  That was 18 months ago.  I recently have been having headaches again, but I haven't gained any weight back.  I have steadily lost weight.  I am concerned because he said our next step was a shunt.  The last thing I want is a drilled hole into my skull but it is affecting me at school and home.  What do you think??