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Avatar universal

Colloid Cyst of Third ventricle - how small can they be removed safely?

Been waiting 4 months to post, so here is all my data:
- 33 y/o female, avg. health up to July however reoccuring headaches (not migraines) for past 4 years
- July had what ER called TIA (mini-stroke) out of blue (thinkinig misdiagosis, ad was actual intermittent hydrocephalus), symptoms being numbness in face and arm, excruciating headache underneath left eye, nausea, dizziness etc.
- After this point, same symptoms cotinued to occur, on and off, inclding falling down, black outs, migraines (never had these before!), nausea, general unwelless, loss of feeling in toes, tingles in face and arms, joint stiffness, jaw soreness, blurry vision, mood swings, memory loss, mental changes
- CT-scan in August revealed colloid cyst between third and fourth vetricle
- MRI confirmed cyst; cyst is 7mm, intermittent hydrocephalus I believe although MRI doesn't show any hydrocephalus.  Cyst located right in centre apparently of anatomy
- Consulted with neurologist, sent to neurosurgeon, neurosurgeon wants it to grow 3mm more before he takes it out (wants it to be 10mm), symptoms have increaseed but he wants me to wait 6 months longer before doing anything

QUESTION?

IS this normal practice?  Safe?  I realize my cyst is located in a sensitive area but 6 months more of these symptoms when sudden death could occur?  I can barely work or function due to the icredible pain. He's recommended until then for progressive MRIs...

Currently taking:
Relpax 40mg
Imitrex 100mg
Propranolol
Toradol
Naprosyn
Amitriptyline

I am in Canada where we have universal healthcare.  

Thx!
4 Responses
Avatar universal
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The management of colloid cysts is related to symptoms of intermittent hydrocephalus and/or dilated ventricles on MRI (a sign of hydrocephalus).  In a patient with No symptoms (or symptoms unrelated to the cyst) and a MRI that shows no evidence of hydrocephalus the correct therapy is serial MRIs.  In your case, I believe that you do have symptoms of intermittent hydrocephalus form the symptoms that you have described.  Headache is the most common symptoms, but dizziness/vertigo, blurry vision, leg weakness/falling, memory problems can all occur.  In a patient with symptoms, then the cyst should be dealt with surgically.  That being said, the surgery is not without risks, and depending on the surgeon, the approach and your particular cyst, the results may vary.  Memory loss and seizures(mostly with the cortical approach) have been reported as a complication in some surgeries.  I would suggest that you be seen by an ophthamologist to look for papilledema (swelling of the optic nerve heads as a response to increased intracranial pressure), have formal neuropsych testing (to document any memory loss and have a MRI scan with a CINE flow study (this shows the flow pattern of CSF).  These tests will help build your case to have surgery.  I do not think that waiting for the cyst to reach a "number" such as 10mm is a reasonable, but should respond to your symptoms.  The symptoms that you describe are all possible with a colloid cyst, but it is up to your doctor to determine if they are related.
I hope this has been helpful.
Avatar universal
Dear 33 y/o female,

First of all I am sorry to hear about your situation, I feel that I can truly empathize with what you are going through.  I am a survivor of a Colloid Cyst.  At the age of 15, I was enduring similar symptoms; migraine headaches, passing out, nausea, and pain all over especially behind my eyes.  There were days that I could not even get out of bed or stand up.  These symptoms were off and on throughout the summer of 1991, but became increasingly worse later in the year.  I finally went to the doctor to have it checked out, and after a CT scan and an MRI, I was also diagnosed with a Cyst in the Third Ventricle.

My doctor had recommended the CT scan after looking in my eyes and seeing that my optic nerve was swollen from some type of pressure behind my eyes.  The CT scan showed severe hydrocephalus, and they said that it is the hydrocephalus which causes the sudden death.

I did not have much time to think about it, I was informed that the pressure had to be removed due to the threat of sudden death, the choice was either a inserting shunt to drain the fluid, or Brain surgery to remove the Cyst.
We opted for removal of the Cyst via surgery, and I spent most of the next day on the operating table.  

I guess my situation was a little different, From the MRI they could see that my Cyst was already 11mm in size, and I had severe hydrocephalus, my ventricle was swollen to several times the normal size.  You stated that your MRI doesn't show any hydrocephalus, and this may be the reason they have recommended waiting in your situation.  That could be the reason they have recommended waiting and monitoring it.

After the surgery I suffered from temporary amnesia and then memory problems (mostly short term-memory) for several years.  It has been a struggle at times, but I am now 30 years old with a wife and two children.  Although I have small memory lapses at times, for the most part everything is functioning normally.  

I don't know if this helps, but I wanted you to know that there are people who have been there, and know what you are going through.  My thoughts and prayers will be with you.
Avatar universal
A related discussion, colloid cyst was started.
Avatar universal
A related discussion, multiple opinions was started.
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