Pseudotumor Cerebi

[momofthreegirls]

Does anyone know what it means when the doctor says atypical presentation pseudotumor cerebi?  Please help.  Thanks

[Sherrizim]

Pseudotumor cerebri is usually associated with increased intracranial pressure (without enlarged ventricles), papilledema (swelling of the optic nerve), and headache.  Atypical presentation, I believe, would mean that one of those was absent.  It's less common.  Perhaps there are other possibilities; I am going by memory.  The greatest risk of pseudotumor cerebri is loss of vision due to papilledema.

My son was diagnosed with pseudotumor cerebri when he was 7 months old.  We were told he was only the third child under the age of 1 to ever be given that diagnosis.  (Maybe that was an exaggeration.)  His claim to fame: all the residents were called in to look at his optic nerves and told they would never see it again.

Have you been diagnosed with pseudotumor cerebri?  It's one of the possibilities being considered for my headache.  I don't have papilledema, though, and I haven't yet had an LP (that's next week).

Again, I'm going by memory, I didn't take the time to look any of this up before writing.  When my son was sick, though (and he's 9 now), I read everything I could find about it.

S~

[momofthreegirls]

Well I actually have all but the papilledema as of now.  My eyes are constricted (like I have tunnel vision).  They haven't really gave me a straight answer.  I have had a headache since about the 8th of June that won't go away.  I don't know what else to do.  When I got put in the hospital my blood pressure was 199/118 and I had left side numbness and weakness.  I thought it may be a stroke but I have finally got my leg and arm back and speech.  But the headache ain't went away.  Thanks for ur help.

[Sherrizim]

I'm so sorry to hear about your headache.  I can relate, as I've had a headache for almost 10 weeks now.  You've had an LP that showed increased intracranial pressure?  If so, what are they doing for it?  What other tests have you had?  I don't recall reading anything about high blood pressure, numbness, and weakness when I read about pseudotumor cerebri, but maybe I just don't remember it.  Or maybe that's part of what your doctors would include as "atypical."  What is your headache like?

Maybe someone else on the forum has some knowledge about pseudotumor cerebri and can add to what I've said.  I'm definitely not an expert on the subject!  :-)

I hope you get relief from your headache soon.

S~

[momofthreegirls]

I am sorry was is an LP?  I am not familar with that term.  I have had MRI's, CT's, Renal and Caratoid Dopplers, Blood work, Spinal tap, and Mri's on my back(I have 5 disc hernaiations and just had surgery on another one that was herniated in May).  Thanks for ur help.  My headache is dull but sometimes just out of no where it gets really sharp and I feel my heart beat in my head.  
It is so strong...and the other day I blacked out or something and hit a pole....busted out my back glass and tore up my tailgate.   I got whiplash in my back.  Thanks again.

[Sherrizim]

Wow, you've gone through a lot of tests.  How frustrating to still not have an explanation for your headache.  LP stands for lumbar puncture, aka spinal tap.  Was your opening pressure high when the spinal tap was done?  If not, then I wouldn't think pseudotumor cerebri would apply since you also don't have papilledema.  But like I said before, I'm not an expert on the subject.  Anyway, I hope your doctors figure it out soon.

[momofthreegirls]

Thanks so much for your help.  I know they yelled out the spinal pressure but it took them about 6 tries to even get any fluid so I can't remember what they said.  

[momofthreegirls]

I got my other EEG back yesterday and they said it was normal..no seizure activity.  But they don't want me to drive for 6 months and they are changing my medications.  They seem to think they are just missing the pseudotumor.  They stilll won't let my spine doctor do a mylegram b/c my head still hurts when I think part of my headache is coming from my back with me have 5 disc herniations.  Thanks again for your help and I will let u know more.

[Sherrizim]

Do they think you had a seizure while driving (the time you said you blacked out or something)?  Do you have a seizure disorder?  You said they are changing your medication - from what to what?  I'm trying to understand the connection between possible pseudotumor cerebri and seizure (not to mention what your doctors mean by "just missing the pseudotumor."  Pseudotumor cerebri is not characterized by seizures.  However, I found a journal article where a person on Depakote for seizures developed pseudotumor cerebri that resolved when they changed her medication from Depakote to something else.  Is that the connection is your case?  If not, I'm completely lost!!!

Otherwise, have they treated you with Diamox?  I would think they would if they suspect pseudotumor cerebri and you have increased intracranial pressure (ICP).  If you don't have increased ICP, then without papilledema, I don't know why they'd be thinking pseudotumor cerebri.  Unless what they meant by "missing the pseudotumor" means that they think they missed getting an accurate opening pressure.

I don't know anything about herniated disks and such.

I will be interested to hear more as you find out more.  Take care.

S~

[momofthreegirls]

No, They are saying that I am not having seizures.  I am not really sure to be honest what they want to say...They are changing my medication from clonidine to verpamil or something like that.  I am completely lost too so don't feel bad.....they are sending me to a neuroopthalmogist in Winston....and no my family dr will not treat me with Diamox he says that it has way to many side effects.  Thanks again.  I will let you know more soon.

[Sherrizim]

Are they thinking that your blackout was a "transient visual obscuration," which is a seconds-long blackout of vision?  That can occur in pseudotumor cerebri.  I also read that both medications - clonidine and verpamil - are used to treat headache pain from pseudotumor cerebri (I think they also treat high blood pressure).  Here's the site where I found this information: http://www.findmemyhouse.com/ptc/index.htm.  It's in chapter 3.  Good luck with the neuroopthalmologist.  Hopefully he can determine if pseudotumor cerebri is the correct diagnosis for you.

S~

[miamiamia]

Interesting article

http://findarticles.com/p/articles/mi_m1200/is_v131/ai_4664211

[jlotus]

[jlotus]

hi i have pseudotumor cerebri and i have had it since august of 2006 first  thing i noticed was my vision was doing some three d stuff. then the horrable heabaches and then forgetting how to spell i got better in november but after i was on diamox 1,000mg and topamax100mg in march the headached are everday all day long and i also am a mother of 3 and my husband didnt like i couldnt stand the light because my optic nerves are so swollen he left me and my kids yes i do have black out but they only last like a few seconds smoky vision like your house is on fire blured vision double vision nausea dizzeness and felling like your head weighs like a 1,000 pounds and just tired ohh and neck and back pain and your eyes hurting  my pussure rises and falls and they dont know what caused my pseudo. if you have it maybe this well help you .

[jlotus]

oh by the way they have raised the topamax to 450mg to controll the headached that dont work neither

[NB Jeff]

My wife was diagnosed with pseudotumor cerebri in ealy 90's.  She had the nausea and headaches, and deteriating eye sight.  She ended up at Kellogg Eye center in Ann Arbor Michigan (Dr Trobe) and had optic nerve decompression surgery.