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  #1  
Old 03-28-2007, 11:54 AM
softprofile softprofile is offline
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Default Compendium-Cyst

Hi All,

While browsing through the posts I realised that getting data on various parameter about the cyst for all those in the talk community was a Herculean task.So I have started this thread where we can post information about the cyst in a particular format.
This way this thread can act as a single reference point for all the newcomers

I am starting with my own experience

1. Diagnosed Date : 22 Feb-07
2. Cyst Size : 8mmx8mmx8mm (CT and MRI)
3. Hydrocephalus (Yes/no) : No.
4. Ventricular Dilation (Yes/no) : No.Small Ventricle size.
5. How I found the cyst/Symptoms: She fainted in the office.
6. Treatment : Mixed opinion of the Neurosurgeons currently opted for for observation for a period of 3 months.Also taking Homeopathic medication.
7. Surgery(if any) date: Not Applicable.
8. Any other information: Opted for observation due to following reasons
a. Small size of the cyst.
b. No CSF and Foramen of Munro obstruction in MRI
c. No Symptoms.
d. We think it is an incidental finding (more such cases are being found due to availability of advance imaging techniques) and the chance that the cyst might remain dormant for a considerable duration is pretty high)

Please let me know your thoughts on this thread.
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  #2  
Old 03-28-2007, 01:34 PM
missbbpepper missbbpepper is offline
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Location: PA USA
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Default

this looks great - is this something that we should all be doing?

like should we be writing all this down for ourselves in this post?

again, this looks great.

amber and quincy
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Spastic Dipligia Cerebral Palsy, Seizure Disorder, Complex Partial Epilepsy, Asthma, Spondylolisthesis, Spina Bifida Occulta, Scoliosis -11* curve, Enuresis, Gastroesophageal Reflux Disease, Neurogenic Bladder, Eustachian Tube Dysfunction, Arthritis, Ataxia, Inner Ear Disorder - Right Side, Headaches, Myoclonus/Clonus, Myclonic Jerks, Bowel Issues, Lesion on 3rd Brain Ventricle and somehow I keep moving on.
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  #3  
Old 03-29-2007, 12:20 AM
chunky chunky is offline
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Posts: 720
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Quote:
Originally Posted by softprofile View Post
Hi All,

While browsing through the posts I realised that getting data on various parameter about the cyst for all those in the talk community was a Herculean task.So I have started this thread where we can post information about the cyst in a particular format.
This way this thread can act as a single reference point for all the newcomers

I am starting with my own experience

1. Diagnosed Date : 22 Feb-07
2. Cyst Size : 8mmx8mmx8mm (CT and MRI)
3. Hydrocephalus (Yes/no) : No.
4. Ventricular Dilation (Yes/no) : No.Small Ventricle size.
5. How I found the cyst/Symptoms: She fainted in the office.
6. Treatment : Mixed opinion of the Neurosurgeons currently opted for for observation for a period of 3 months.Also taking Homeopathic medication.
7. Surgery(if any) date: Not Applicable.
8. Any other information: Opted for observation due to following reasons
a. Small size of the cyst.
b. No CSF and Foramen of Munro obstruction in MRI
c. No Symptoms.
d. We think it is an incidental finding (more such cases are being found due to availability of advance imaging techniques) and the chance that the cyst might remain dormant for a considerable duration is pretty high)

Please let me know your thoughts on this thread.
Great Idea as soon as I dig out my surgery report I will add my stats.
D
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Craniotomy 1972 1.0cm x 0.5 cm x 0.5 cm colloid cyst with 2.0 cm x 0.8 cm x 0.3 cm norm brn tissue remvd; bilateral papilledema with prfnd short term memory loss for 6-10 months; LP taps daily 3 weeks , bout of depression post-op; 4 children under 5, ret'd critical care nursng 1yr postop; In 08-09 I was treated for burning Numular Migraines pain worse than my brain tumor and unrelenting, test showed no new growth of cyst tho.. Retired in 2008 after 44 years of nursing.
Jeremiah 29:11 Donna
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  #4  
Old 03-29-2007, 09:38 AM
chunky chunky is offline
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Default Colloid cyst data

Diagnosed Date:5 -20-72
2. Cyst Size: 2cm mass lesion arising from the foramen of Monro and extending into the lateral ventricles. More prominent on the right than the left.
3. Hydrocephalus (Yes/no): Yes.5/26/72
4. Ventricular Dilation (Yes/no): Yes. Enlarged ventricle on the R (l Ventricle size.)With secondary aqueduct stenosis and obstruction
5. How I found the cyst/Symptoms: profound headache went for an eye exam and MD found bilateral papilledema and scintillating scotoma. My original internist said I was over worked put me on Valium sent me home and told me not to “Doctor hop.”
6. Treatment: Craniotomy and removed of Colloid Cyst of 3rd Ventricle..
7. Surgery (if any) date: 5/30/1972
8. Daily Lumbar Punctures to decrease brain pressure.
8. Any other information: With 3 years of taking Dilantin prophylactically for seizure prevention
a. Also removed 1cm x 0.5 x 0.5 cm of brain tissue

b. CSF and Foramen of Munro obstruction with Ventriculogram
c. Profound headaches, ringing in the ear and tunnel vision. Scintillating Scotoma (everything looked bumpy with tunnel vision.)
d. Postoperatively I did extremely well with daily lumbar punctures to decrease pressure on my brain.
Hope this gives someone information for prevention and cure!!
D
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Craniotomy 1972 1.0cm x 0.5 cm x 0.5 cm colloid cyst with 2.0 cm x 0.8 cm x 0.3 cm norm brn tissue remvd; bilateral papilledema with prfnd short term memory loss for 6-10 months; LP taps daily 3 weeks , bout of depression post-op; 4 children under 5, ret'd critical care nursng 1yr postop; In 08-09 I was treated for burning Numular Migraines pain worse than my brain tumor and unrelenting, test showed no new growth of cyst tho.. Retired in 2008 after 44 years of nursing.
Jeremiah 29:11 Donna
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  #5  
Old 03-30-2007, 10:37 AM
dka_palmer dka_palmer is offline
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Location: Atlanta, GA
Posts: 87
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Good Idea, here is my information:
1. Diagnosed Date : 15 Aug-1991
2. Cyst Size : 11mmx11mmx11mm (CT and MRI)
3. Hydrocephalus (Yes/No) : Yes, severe
4. Ventricular Dilation (Yes/No) : Yes, severe don’t know specifics
5. How I found the cyst/Symptoms: Headaches summer ’91, visited - Pediatrician, Ophthalmologist, Neurologist, had CT and MRI all within a 14 hour period
6. Treatment : Open Craniotomy next morning
7. Surgery(if any) date: 16 Aug-1991
8. Any other information:
- Anti-seizure (dilantin) medication 2 years
- Most difficult – losing memory and hair during the middle of High School
- Initial amnesia, did not recognize family, location, or self for a few weeks
- Profound short term memory loss for 1-2 years
- Returned to school next year, loss in GPA, Scholarship, but still graduated on schedule

Current status: 16 years post-op. Degree in Business & Degree in Computers, Married, 2 children

dka_palmer
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  #6  
Old 03-30-2007, 11:23 PM
ccyst
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Default GREAT IDEA!! - My information on my Colloid Cyst

I have not posted on this site for over a year. I am glad to get back on this board in this manner. This is such a good idea so we can all see our experiences with our colloid cysts in some orderly manner. Here's mine . . .

1. Diagnosed Date : January 12, 2004, surgery January 13, 2004
2. Cyst Size : 1.2 cm (CT and MRI)
3. Hydrocephalus (Yes/no) : Yes, severe.
4. Ventricular Dilation (Yes/no) : Yes, severe
5. How I found the cyst/Symptoms: headaches, dizziness
6. Treatment : Crainiotomy with complete removal of cyst
7. Surgery date: day after diagnosis - cyst was blocking CSF (cerebral spinal fluid) flow.
8. Any other information: Doctor said I was a walking time bomb - very lucky I didn't just fall over dead from a major stroke effect due to blockage of CSF.

After surgery I had severe short term memory loss for 1-2 years, gradually returns. Day at a time. I am now 3 years and 2 months out doing MUCH better. I have learned what the IMPORTANT things in life are all about and I am very blessed to be here today!

let's keep the thread going, ccyst
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  #7  
Old 03-31-2007, 09:31 AM
3boysmom 3boysmom is offline
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Posts: 140
Default This may be a stupid question...

But where do you find out all the information on your particluar cyst? Is that something the surgeon should of given us?
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  #8  
Old 03-31-2007, 05:24 PM
ccyst
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Default no question is ever stupid!

3boysmom-

I have a copy of my op report (report of operation); also typed reports summarizing the findings of the CT; and MRI done; you should be able to get these reports by asking for them from your doctor. This is your own personal information and you are allowed by law to have this. When you get the info - please let us know!

Take care, ccyst
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  #9  
Old 04-01-2007, 11:07 AM
sunflower47 sunflower47 is offline
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1. Diagnosed Date : November 5, 2002, Surgery Date: November 15, 2002
2. Cyst Size : 1.0 cm (MRI)
3. Hydrocephalus (Yes/no) : Yes
4. Ventricular Dilation (Yes/no) : Yes
5. How I found the cyst/Symptoms: Intermittent clogged head feeling and whooshing sound with positional change
6. Treatment : Craniotomy (transcollasal approach) with complete removal & cauterization of any remaining cyst so no regrowth is possible.
7. Diagnosis - cyst was blocking CSF (cerebral spinal fluid) flow causing symptoms of clogged head (like being underwater) and whooshing (like the sound of an ultrasound, very ryhthmic)
8. Any other information: I had a grand mal seizure almost 6 months after surgery. Doctors say scar tissue was the reason and the brains signals not getting thru to that area. There is a "slowing" the EEG shows in that area. Still on seizure med today and will be for at least 5 more years. Also, after surgery for 2 years I continued with the same symptom despite removal of the cyst and despite numerous tests & the doctors had no explanation. Finally a seizure med, Topamax, which I requested to be put on due to it's ability to cause weight loss (and not gain as the others had done) made the symptom go away. Doctors finally said the Topamax decreases spinal fluid production and the symptom has not returned since I have stayed on Topamax. Big mystery with that one.
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  #10  
Old 04-02-2007, 09:38 PM
Hopeful Hopeful is offline
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1. Diagnosed Date : May 14, 2006
2. Cyst Size : About 1cm
3. Hydrocephalus (Yes/no) : Yes
4. Ventricular Dilation (Yes/no) : Yes
5. How I found the cyst/Symptoms: Unreal headaches that did not respond to medication
6. Treatment : Surgery (open craniotomies)
7. Surgery(if any) date: May 16 and May 26, 2006
8. Any other information: In my first surgery, they popped, drained and cauterized the cyst. But MRIs after the surgery showed it was still of a significant size (6-7mm), and it even grew slightly when I was in the hospital. We opted for a second surgery in which they cut the cyst into quarters and removed just a few tiny pieces. That was the ticket! I was better and released from the hospital just a few days later. No problems whatsoever thereafter, and 100% back to work, home and life within six weeks.
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