Anybody? Everybody...

[jadiee-x]

Ive noticed that this thread isnt used much atall.
yet there is usually someone viewing it...therefore i think we should get talking as people with arachnoid cysts are coming onto this thread expecting to find people with the same condition, but fear there is noone to talk to, therefore turn away and go elsewhere.

How about we all share some information??
like:

Name:
Age:
Age diagosed:
Position of cyst:
Hospital attended:
Diagnosis:
Symptoms:
Treatment:
Prognosis:
Medication used:
Other info:

[jadiee-x]

Name:Jade
Age: 17
Age diagosed: 8 months
Position of cyst: Right fronto-temporal cyst.
Hospital attended: Great Ormond Street Hospital
Diagnosis: CT scan (intially diagnosed through CT scan) Xray, shunt series, Intercranial pressure monitoring bolt.
Symptoms:Intercranial pressure, severe headache, vomiting, cough, irritability, photophobia, comatose.
Treatment: CystoPeritoneal shunt inserted at 13 months, fully revised at 4 years, fully revised again at 16 years, revised distally a week later and then the day after. Converted to a CystoAtrial shunt at 17 years.
Prognosis: Life dependent on the shunt.
Medication used:Ibuprofen, paracetemol, aspirin.
Other info: Since surgery at 16 years, ive had nothing but problems regarding headaches, nausea and vision problems, also chest pain since the VA conversion, im suspecting overdrainage from the shunt as the pressure valve was changed from high to low in my last full revision.

[susan1234]

Hi Jade, My daughter had an arachnoid cyst at about 6 months of age. She is now 10. She had surgery and had it removed. So far Thank god it hasn't come back. She is a VP Shunt. Her surgery was performed at NYU in New York City.
Susan

[Rowna40]

I was diagnosed 6 years ago (at 38) with a large midline cyst located between the lateral ventricles. It had completely blocked the 4th ventricle and elevated the corpus callosum and suppressing on the brain stem. it was 3.8 x 4.5 x 3 cm and was under a great deal of pressure. I was given the standard run around that the tremors in my left hand and vision problems were not caused by this and that I should see a psychologist because they thought I was depressed. (I presented with symptoms 5 years prior at the birth of my son and they progressively got worse. Of course it was diagnosed as post partum, thyroiditis, graves diesese and finally depression when none of it panned out.) The MRI I got finally showed a big "black hole" in the middle of my brain. I found a Dr. in Portland OR who took it seriously and took the time to actually talk to me and scheduled surgery. I took in a list of odd symptoms that I had been having and he said that he didn't know which ones were being caused by the cyst, but after surgery if they go away you will know for sure. (which most all of them disappeared right away) I now have a double periventricular shunt and doing much better!! My advice to anyone who has symptoms with this. Do your research. You don't have to listen to just one Dr. Chances are you will have to see several before you find someone who actually knows what it is and what to do about it. I read everything I could get my hands on. One Dr. told me that I sounded angry and I said that it was my brain. You can't get a replacement part for that if you screw up, so it is up to me to make sure I understand what you are doing....

[arachnoidcystmom]

I know that you posted a couple of months ago but hopefully you will check in and see this. My 6 year old daughter was recently diagnosed with a cyst just slightly smaller than the one you describe. Hers is in the left front of her brain. She is miserable. She's exhausted all the time, in constant discomfort, has recently out of nowhere started having major anxiety attacks and mood swings that go from happy as can be to raging at the snap of a finger. We are in the Portland area and met with Dr.Guilliume (sp?) a neurosurgeon at OHSU this past week. I was curious who your dr was. Do you know if they have experience with children. My husband and I are confident after meeting with the dr that she would feel better if she could just have this thing in her head drained. Dr Guilliume has not yet said he's against surgery but is consulting with the neurologist to see if we should simply treat the headaches with migraine meds instead of surgery. I do not feel this is a solution. Any info you could share with me about treatment for this in the Portland area would be very appreciated.