Could I still have pseudotumor cerebri?

[heart2heart]

Dear Doctor:

In 1994 I started getting visual problems, went to the opthalmologist and was dx'd with pappiledema. My internist sent me for further tests, MRI and evoked potentials, blood tests. All came out normal. I had the option of getting a lumbar puncture but refused (I was too scared). I went to the neuro with the findings and he dx'd me with Pseudoturmor Cerebri. I took Diamox for a few weeks and stopped. My vision cleared up, papilledema went away. However, I still have a wide array of strange symptoms...throbbing sensation in my head when I stand up from a sitting position, headaches (some which wake me up) constant high pitched bilateral tinnitus,episodic dizziness and now burning sensations in the back of my skull up to behind my ears. Another MRI, MRA and blood tests (B12, ESR, ANA, RF,CBC) were done this March, all normal. Eye exam is normal. Only thing thats abnormal is my c-spine has lots of bone spurs, thats it. Should I finally get that lumbar puncture? Do you think I still may have a low level PTC?  Any feedback is appreciated.

[Sassymama77]

I had the LP Shunt in Feb and a revision in March of this year. Greatest thing that I have ever done! I was diagnosed with PTC in March of 05. Now since the shunt, I have had maybe 3 headachaches!!!  And nothing like the ones I experienced before my shunt! Its amazing really...I never knew how much better I could feel!

[elib]

Um, are you my twin? This is exactly what I was feeling before I finally got the lumbar Puncture that confirmed it. Pseudotumor cerebri. Mine is actually pretty bad and I am thinking of having the shunt put in. Please go back to your neurologist and get it confirmed so you can start feeling better. Goodluck!

[CCF-Neuro-M.D.-PW]

I cannot give you a formal medical opinion over the internet as this site is purely educational

papilledema is an appearance suggestive of increased pressure in the cerebrospinal fluid. One must be careful as some normal variants of discs can look like papilledema. It can result from a brain abnormality so an MRI is always done. If normal and no brainabnormality is detected the suspicion is for pseudotumor but this cannot be conifrmed unless elevated spinal fluid pressure is measured.

There can be mild elevations of cerebrospinal fluid without papilledema. Headaches worse on getting up are more suggstive of low pressure headaches. Your symptoms may not necessarily be from pseudotumor but may have another cause. A spinal tap may tell the answer. Talk to your neurologist about this and other potential cuases.

Good luck

[just_duckie]

All of the research I have done on this, says that most have involvment with the eyes.... but it isn't a must.  I would think if you are having all of the other symptoms, you should get a LP done.  Do you have a good neurologist?  As for the remission, you know you are not in remission when your symptoms come back and they do a lp to confrim the elevated pressure.  There is a good PTC support group on msn, you might find some answers there too.
Take care, Mel

[sunflower garden]

I have normal eye exams with 20/15 vision in both eyes and visual field test is perfect and I get it checked every 3 months. I complained to my opthmoligist that I was still suffering headaches,visual wierdos,and neck pain and he told me that my eyes look great and that he didn't think that my pressure was up and 2 weeks after I got a LP and my pressure was up.Did you talk to your neuro about getting a tap? Ask if he does it or if he has the radioligist do it. I had it done several times both ways and I perfer the radioligist because they use an xray thing and I felt like it was more accurate and it didn't take as long either.

[sunflower garden]

pretty basically I agree with all that just duckie said.

[just_duckie]

PTC is never is cured... only goes into remission.  You really need a spinal tap to get the right diagnosis.  People have remission from this for all different time periods.  And some never get that break!  Ask to have your tap done with floro (special xray).  
Good luck, Mel

[heart2heart]

Good heavens! PTC is never cured?  If it just goes into remission how do I know when it's back?? Since my dx of PTC in 1994 I have seen at least a dozen different doctors that took down my medical history, and knew I had PTC. It's odd that no one even blinked an eye and suggested I have a LP done. Will they do an LP now even though I have a normal eye exam?

[Rosehips]

Hello,
I had it when I was 18. I was treated for it and it never came back. Not saying it cant. I had a spinal tap and then put on diamox for about a year then that was it. I havent had problems since then . I have been headache free for almost 10 years. So I hope that it works the same for you! I hated that pain. Man no other pain like it.But if it were me I would definetly have them check me out. Good luck!
I hope you get well soon.
Rosehips