Brain Tumour, Brain Cyst and Simple Partial Seizures

[nia1234]

Hi, Not sure where to start!  I'm a 35yr old female and 6 years ago diagnosed with a diffuse low grade glioma although the biopsy was inconclusive.  Up until 2 years ago I lived a 'normal' life taking tegretol 400mg twice a day to control seizures with no problems.  In that time I got married, had a baby, worked full time etc.  I then tried for another baby and around the same time as falling pregnant I started having strange deja vu feeling, pressure build up in my head followed by a pain in my right hand and feeling sick.  Each time it lasts approx 2mins then I felt a bit drained afterwards.  I then miscarried and about two months later fell pregnant again.  The pattern of these symptoms was always the same and this happened approx every 3 weeks and it still continues up until today.  Last March I started having panic attacks.  I still have the strange episodes but the de javu seems to have been replaced with a feeling of dread or panic then the usual build up of pressure in my head etc.  I have spoken with my Consultant about these symptoms and he told me a cyst developed in my brain and it's borderline whether it's simple partial seizures and the cyst first showed up on the MRI around the time of miscarrying.  I have asked him if my hormones could be causing these strange sensations but he didn't really answer the question.  I have been breastfeeding my daughter and due to stop so am wondering when I do will these symptoms stop too.  Maybe it's wishful thinking but the timing of the cyst and the symptoms all fit in with when I was pregnant, miscarried, pregnant again and breastfeeding and I'm hoping once my hormones settle down could this stop.  It's a horrible feeling, I've given up work, worried about driving and I've been offered surgery to have an Omaya Reservoir put in so it can be drained but I've read that the cyst usually fills up quickly unless it is completely removed.  
Any replies would be gratefully appreciated.
Many thanks!

[rumpled]

Well, the location explains the attacks - so there you go. I can understand to some point avoiding meds and operations - but I would honestly get more of your records, come to more terms with it (heck, at first, I was scared!) because well, the status quo is not being good to you and is not giving you a good quality of life.

I avoid pain meds by using acupuncture - but I had to use surgery for my lesions - I got mine through my nose though which is not an option for you. But sometimes, learning more - while at first may be scary as  you learn all the bad things, can also help, because you learn that things can be ok - if treated well.

In the meantime, find a neuro-endo and get hormone testing - see if they will take you on. Often they will only take a pituitary patient, but they may take you with the cyst.

[nia1234]

Many thanks for your reply.  I really don't want medication or an operation so I'm trying to control the panic myself.  The lesion is in the right temporal lobe and the cyst is over that area.  I was told it was approx the size of an egg and has shrunk in size but only by mm over the past 2 years.  When I told the Consultant about the panic attacks he wasn't surprised and said the right temporal lobe controls fear.  Unfortunately I haven't got the exact details of the cyst location it's only what I've been told by the Consultant.

[rumpled]

Where is the cyst - is it near the pituitary, pineal cyst hypothalamus, or around there -pressing on hormone areas? Is it large enough to have mass effect?

Unfortunately, neuros are not people that know hormones - I would take the anxiety and the miscarrages as hints, see an endo. But if you see the wrong person, you will get tossed the prozac and ignored, so be careful.

Cysts in some locations may be too deep for removal as it would disturb too much of the surrounding matter. What does your report say as to location?