Chiari and Pseudotumor? What's the connection?

[Guest guest]

Sorry for the cross-post for those that are bugged by that. I know

people on both groups that have great insight and info which is why I

did this. I haven't really shared my whole story before, but here is

the quick and dirty version. I am still working full-time and driving

all over the Dallas/Fort Worth metroplex which is why these new

things are scaring me!

Ok, I was diagnosed with ACM in 2005 but really had no symptoms.

Began having symptoms last spring and new MRI showed that the Chiari

had doubled in size and subsequent CINE MRI showed no CSF flow to the

cerebellum and occipital lobe. I had decompression in June of '07.

At first, I had a significant decrease in symptoms and began working

again in August. Then in December I started having symptoms again.

More neuro type symptoms. Numbness/tingling/pain in arms and legs,

olfactory hallucinations (smelling cigarette smoke when there was

none around), and very oddly carbonation started tasting flat and

warm like it did when I was taking Topamax.But I haven't taken

Topamax since August.

My NS did repeat MRI including CINE in February to make sure that

there wasn't any blockage or cerebellar slumping. The MRIs looked

perfect.

His next step was to do a lumbar puncture/spinal tap to make sure

there was no weird infection at the graft site. Also to look for any

other weird viruses or indications of MS, etc. After the lumbar

puncture, I did have the lovely spinal headache and had to go get a

blood patch. It still took 4 days for the headache to go away after

the patch! Since the LP was done, I have started having a lot more

problems with pressure. Hurts when I lean over (which I do all the

time since I have 3 kids who obviously think things dropped on the

floor are stuck there and cannot be picked up!!). Also constant ear

crackling and intense pressure if I cough.

All the results of that were good or normal except the opening

pressure. It was high but not extremely high. My NS said that the

high opening pressure is an indication of pseudotumor and we need to

do more tests. I go next week to see a neuro opthamologist for visual

field testing. NS says that visual problems are almost always

associated with pseudotumor.

Interestingly to me, he also said that pseudotumor and Chiari are not

related. Looking at past posts, a lot of people seem to have both.

Has anyone been told the exact relationship between the two OR how

common is it to have both?

He did also tell me that I will need another LP in 3-4 months so we

can start monitoring the trend of opening pressure.

OK, that is all my late night rambling. Sorry it is so

long.....anyone who read all this, I really appreciate it! Any

answers or comments are so very welcome!!

Alice in Texas