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Neurology (Expert Forum)
Could I still have pseudotumor cerebri?
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Could I still have pseudotumor cerebri?
by heart2heart, May 22, 2006 12:00AM
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.
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.
Doctor's Answer
by CCF-Neuro-M.D.-PW, May 28, 2006 12:00AM
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
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
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
Good luck, Mel
Take care, Mel