pseudotumor cerebri??

[alexiwildchild]

hi everyone! well, i was wondering if anyone here has this condition, and if so, what are the main symptoms?  also....how do they test for this at places like TCI, etc???? is it just a lumbar puncture that can tell?  My latest MRI report--after being told yes from TCI and no from Dr.Oro if i have Chiari---states I have a 2mm tonsil ectopia (whereas the last thought 6mm).  Well, this is where i saw that I have "small ventricles" and I should be tested or something for pseudotumor cerebri.

I just don't know what to think?!? What if I have a lumbar puncture and it makes the possible "chiari zero" worse??? AHHH!!

[youngwife]

Hey there! :)

If you have conflicting opinions, I think the only thing you can do is to seek out a few more from trusted Chiari experts.  Then, you have to decide which one you can trust.

My daughter has symptoms of Pseudotumor Cerebri, but has not yet had a spinal tap show elevated ICP.

Rachael's symptoms are:

Pressure in her head that is worsened upon awakening, and with any type of straining such as sneezing, coughing, laughing, or crying.  Activity is limited for her because it raises the pressure in her head.

Vision disturbances

Dizziness

Nausea

Balance issues

PC is very common among Chiari patients.  Dr. Frim in Chicago has done a lot of research and studies showing the connection between the two.

According to Dr. Rosner in NC, if you do not have a significant herniation, a spinal tap will not likely cause you to herniate further.  It is usually more of a risk in patients that have tonsils herniated deep in the spinal canal.  The pull of spinal fluid is thought to cause a suction because of the blockage of CSF at the cervical junction.  So, a 2 or 6mm herniation would not be a reason to forgo a spinal tap.

Again, I would seriously consider trying to get in contact with Dr. Rosner, Dr. Heffez, or another trusted Chiari expert near by.

Blessings,

Rebecca

[selmaS]

Hi, as Rebecca said, see a chiari specialist they will know if doing the LP is ok or not and will know what to do in case the herniation does increase in size.

Sometimes the LP needs to be done and will cause no ill effects.

I also wonder if ur issues are a condition called P.O.T.S. a tilt table test is done for that...and like Rebecca said many chiarians do have both ICP and P.O.T.S.

Since u were planning to go to TCI, I am sure they can do all the needed tests.

If u r not happy with their assesment u may want to try Dr Rosner or ne of the fine drs Rebecca has suggested.

"selma"

[alexiwildchild]

Thank you both again for your info!!! Ya'll are great :D

It's so frustrating not knowing which now (or both), so I suppose tomorrow I will just go ahead and make an appointment at TCI.  I will also give Dr. Rosner's office a call, he isn't just a pediatric NS right?

My only problem is trying to schedule this. Between classes and work, it's gonna be very difficult to find the right time to fly out there if the testing takes 2 days.  But maybe with mine, it won't??? I'll have to ask when I call again I suppose.

Also, does anyone know how flying affects a pseudotumor cerebri?? IF that's even what I may have LOL!!!  i know i posted a thread about it affecting chiari symptoms, but i didn't know if this would be any different since the pressure... grrr!!!

[selmaS]

Hi...it is possible to ask for everything to be done in one day....if they want more testing, mayb u can get it done prior to going....ask, it can't hurt.....

Flying with either will depend on the day u r having...I flew b4 I had my dx and had issues on the return flight and I had increased symptoms after landing on the flight down.

Try using Angel Flights......we have a link to them and another member has used their services successfully.

"selma"

[tbissell]

when i first had all my symptoms they told me i had that, but they usually send you to an neuroopto to see if the pressure on your optic nerve before they do the spinal well i didnt so the neuro said i didnt have the fake tumor.

[youngwife]

I just wanted to state for the record that just because you do NOT have papilledema does NOT mean that you do not have Intracranial Hypotension.

Be very careful!  Your eyesight could still go if the elevated pressure in your head is not treated.

Please!  Make sure that you have your vision checked frequently, because once it's gone, it's gone!

[alexiwildchild]

hi there! i was going to ask about this particular thing--that tbissell mentioned.  i was wondering that too cuz i've been to a neuropthamologist and to opthamologists like a few times, and they've never seen anything "wrong".  so yeah, i was wondering if that would rule out the pseudotumor possibility.  Well either way, i'm going to follow-up about both. I am going to call TCI again to see about the testing time frames, etc.   My great aunt called to talk to them cuz she was concerned about all of this, and they told her that basically if you send in your stuff, they only contact you if you meet the criteria for the possible condition(s)--whether it be chiari zero or pseudotumor etc.  she did say that it didn't however say that they will be able to surgically help--but that of course is why i need more testing etc.  so that kinda calmed me down after the "NO" from dr.oro's office---who didn't even mention anything about the MRI report stating about the pseudotumor possibility...so whatever.

tiffany...i would suggest maybe pursuing this option further then...i will keep you posted on what happens with my junk lol!!! hope all is well!!

[tbissell]

youngwife I agree with you but with the symptoms mainly being visual problems that more than likely i did not increased spinal fluid in my brain because my optic nerve was ok. Visual problems is my main symptom very few headaches, so because of lack of any other symptoms he decided not to go for the spinal. Also on my mri it showed to back flow of spinal fluids to indicate more. However if it is increased spinal fluid by doing the spinal i would have had results because the would have taken some of the spinal fluid releasing pressure but if not i would more than likely have a spinal headache.

[tbissell]

they can not see if you have psuedo tumor  on an mri unless its severe enough to make you brain apear abnormal it is basically based on symptoms and elevated spinal fluids with doing the spinal. this was actually the first diagnoses i have ever recieved. so the doctors didnt think i was crazy then  and got looked into really good so i highly doubt that is my prob, who knows though it could be your though you never know and by letting do the spinal it would actually be quite helpful only if you have it though

[PTC_patient_sister]

My sister has both PTC and Chiari- the PTC became severe after being undiagnosed for over 7 years and she needed multiple surgeries (LP shunt and several revisions, then VP shunt).  The combination of both shunts draining too much fluid caused her Chiari-- comparing MRIs showed that she did not have it until after the shunts were placed.  I don't know of any way to diagnose PTC without a spinal tap (though there could be something I'm not aware of)- I can understand doctors wanting to be conservative so as not to worsen your Chiari, though it is important to stay on top of so that if you do have PTC it can be caught early and treated with meds (diuretics) rather than surgery (I have a friend who has PTC who was successfully treated with medication).  My sister ultimately had papilledema and lost most of her vision temporarily (but it returned to normal after the shunts relieved the high CSF pressure)-- earlier signs that were observed by an eye doctor but not recognized as PTC included a loss of peripheral vision (a blind spot when she looked upward) and chronic headaches.  Hopefully you can find a doctor who is skilled in both conditions- there seem to be some good doctors at Cleveland Clinic, and I know of another PTC patient who was happy with treatment at Johns Hopkins.  Good luck.