Compendium-Cyst

[softprofile]

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.

[missbbpepper]

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

[chunky]

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

[chunky]

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

[dka_palmer]

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

[ccyst]

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

[3boysmom]

But where do you find out all the information on your particluar cyst? Is that something the surgeon should of given us?

[ccyst]

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

[sunflower47]

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.

[Hopeful]

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.

[Levi]

1. Diagnosed Date : Aug. 5, 1999
2. Cyst Size : 2.5 cm (CT and later MRI)
3. Hydrocephalus (Yes/no) : Yes. "severe"
4. Ventricular Dilation (Yes/no) : Yes
5. How I found the cyst/Symptoms: Intermittingly severe headaches over 1/2 year prior, intermittent tunnel vision, (an unsteady gait on some stairs finally led me to ER room late one night)
6. Treatment : Transcallosal resection.
7. Surgery (if any) date: Aug. 12, 1999.
8. Any other information:


Surgical complications:

Upon removing the dura mater, a "huge venous lake" (cortical veins?) was centered on the craniotomy. My Dr. abandoned the right side of the craniotomy flap and enlarged the flap to the left side and performed dissection along the left medial frontal hemisphere (my dominant side since I’m right handed).

Brain collapse after CSF had drained out making locating the cyst more difficult.
Third ventriculostomy was also performed in hopes of alleviating the need for a shunt. (shucks, too bad that didn't take;))

Post surgical complications:
transient mutism (~4 days)
hemiplegia (~6 days, paralyzed on right side)
continued hydrocephalus required a second surgery for a VP shunt several weeks later
diabetes insipidus (life?, “water” diabetes not “sugar” diabetes or just diabetes which is really diabetes mellitus. My pituitary doesn’t generate enough anti-diuretic hormone.)
hypertension (life? probably hereditary and not related)
residual memory and cognitive deficits (executive function disorder)


While I don't think it's wise for one to say "Go have the surgery, you will be fine", I think that at some point the risks of not doing the resection outweigh the risks of the surgery. I'm not sure that size is an indicator but I've read that at 1cm that such cysts should be resected because of the increased risks of sudden death. There are some possible benefits to having the partial split-brain surgery to remove this cyst such as an increase in creativity and flexibility. The downside might be the loss in stability.

[jgm]

1. Diagnosed: August 8th, 2006
2. Cyst size: 8mm prior to shunts, 6mm now
3. Hydrocephalus: Yes
4. Ventricular Dilation: Yes
5. Cyst was found on a cat scan. The most excruciating headache of my life combined with wierd visual disturbances prompted me to go to the ER.
6. Treatment: Bilateral VP shunts
7. Surgery: none other than shunts (cyst still present)
8. Any other information:

I did/do have some symptoms since the shunts were placed. I feel a very slight numbness behind my right knee (I was numb in both my right hand and foot after shunt placement--scared the #*&@ out of me--resolved within a week). I was able to return to work within one week. I never used to get headaches, now I do occasionally depending on the stress in my life and my position (i.e. lying down on my stomach to read to my boys). I am a cyclist who races competitively, and I find if I train too hard I get headaches. All in all, pretty minor though. I am no Lance Armstrong and never will be. I am here for my beautiful wife and darling boys and able to work and support them, and I thank God for that.:)

[juan58]

1. Diagnosed Date : March 06
2. Cyst Size : 7mm (CT and MRI)
3. Hydrocephalus (Yes/no) : No.
4. Ventricular Dilation (Yes/no) : No.Small Ventricle size.
5. How I found the cyst/Symptoms: Headache over 2 month period.
6. Treatment : opted for for observation for a period of 6 months.
7. Surgery(if any) date: Not Applicable.
8. Any other information:Heart attack last April

[tnoptimum]

Hi all,
I'm posting about my hubby, Terry.

1. Diagnosed Date : 11 April 07; age 60 yrs, 5 months.

2. Cyst Size : "small", detected by MRI

3. Hydrocephalus (Yes/no) : No.

4. Ventricular Dilation (Yes/no) : unknown at this time.

5. How I found the cyst/Symptoms:
Through a long-delayed MRI followup for AVM surgery of 08-17-06.

6. Treatment : Watch for now as husband is on coumadin post bypass surgery (and more surgery may not be wise??) Neurosurgeon wants to view a copy of the heart stress test report from today. Says call him to schedule another MRI if bad headache before July. Otherwise will do an MRI again then.

7. Surgery (if any) date: not scheduled.

8. Any other information: spouse had blackout with severe head pain in June 06, treated like aneurysm with 3 weeks in ICU and step down unit, then AVM surgery in August; rapid recovery from that except for localized skull pain; heart pass in Nov. when placing a stent was shown to be useless; hospitalized for pulmonary clots early Dec., on coumadin now, and regular physical therapy for heart health.

Extra note: husband has had ringing ears, pressurized-feeling headaches, slight hand tremors, chest pain, stumbling, and psychological mood issues for several years. We were treating him for mental illness when he had his blackout/collapse! He stills gets excitable and then very depressed so maybe the cyst pressure was affecting him all along.

Family connection??
See signature below for note about our daughter!
She has seen the same neuro group for almost 20 years so we feel pretty confident in their skills and care.

[Shellie]

1. Diagnosed Date : 6/2002

2. Cyst Size : 4.5mm at diagnoses 5 years ago now 1cm

3. Hydrocephalus (Yes/no) : No.

4. Ventricular Dilation (Yes/no) : Yes on right side

5. How I found the cyst/Symptoms:
Severe headache CT scan done and found it.....

6. Treatment : I had mine watched for 5 years before more symptoms and changes occurred. I now have Surgery scheduled 7/12/07 but headaches are very severe so severe that I was in ER last night and they did another CT & MRi still no hydrocephalus but definite enlarged ventricle on right side. I have the swooshing that another poster here described as well as dizziness sometimes, ringing in my ears and waking every morning with severe headache.
7. Surgery (if any) date: 7/12/07

[ccyst]

Good for you, Shellie!

I am glad you have recognized (along with your surgeon) that the surgery is the only thing to do to relieve these symptoms. Good for you for taking this step! It is a BIG step. And a Scarey, unknown, one at that. But, I have been there, and through it - and you will too. You will feel so much better!!

A few things to do before surgery (in case you have short term memory loss as I did) write down all of you passwords: banking, computer, ATM, anything you may have a "code" to. You may want to give it to your hubby, best friend or whoever (you may not remember where you put the list). Trust me, this happened to me! The reason for the short term memory loss - the colloid cyst in the third ventricle is in the memory center. You never know how the surgery is going to effect you. That said, my memory is much, much BETTER today - three years after surgery. So, it DOES get better, if it even happens to begin with!

Keep posting to this site and we'll see that you have all the support you need. This site is what got me through! There are great people here!

Take care and keep in touch,
Ccyst

[softprofile]

friends,

Its eleven profiles in the compendium.Need more profiles !!!!

This thread would act as an important place for others to get more information on cyst and compare their cyst with those of others.Who knows probably this might help in deciding a possible treatment.


Also we should take our discussion to next logical step.I am inviting ideas that we find out ways to draw attention of medical researchers in finding a non-surgical cure for this problem. I will create a new thread "Attention Researchers" for this purpose.

regds,
softprofile

[ang_e32]

1. Diagnosed Date : October 06
2. Cyst Size : 4x5x6mm
3. Hydrocephalus (Yes/no) : No
4. Ventricular Dilation (Yes/no) : No
5. How I found the cyst/Symptoms: Headaches over a years time, was treated for sinus problems and allergies before diagnosis was made.
6. Treatment : Cyst removed via craniotomy
7. Surgery(if any) date: 11-29-06
8. Any other information: my cyst ended up being larger that what was first thought. Pain management was hard for me, had to be readmitted after 2 days home to get relief.

[tnoptimum]

Hi all,
I couldn't edit my earlier post so am adding our new info about my hubby, Terry.

1. Diagnosed Date : 11 April 07; age 60 yrs.

2. Cyst Size : "6mm", detected by MRI

3. Hydrocephalus (Yes/no) : yes (diagnosed 15 May 07 with new MRI)

4. Ventricular Dilation (Yes/no) : yes

5. How hubby found the cyst/Symptoms:
Through a long-delayed MRI followup post Arteriovenous Malformation resection surgery of 08-17-06.
Symptoms: pressurized head pain; dizziness; nausea; mood swings.

6. Treatment : Hubby is on coumadin post pulmonary embolisms of Dec '06; hopes to be off this med within a week or so. A new MRI was performed on 15 May, with new discussion of increasing symptoms of dizziness, nausea, and confusion with neurosurgeon. He feels cyst is best left alone for now because of hubby's recent surgeries and less invasive procedure (shunt) will alleviate the hydrocephalus.

7. Surgery (if any) date: Shunt placement to be scheduled as soon as hubby can come off the coumadin and I can arrange a little extra time off from work to be with him and to care for our disabled daughter. Surgeon feels that hubby will be in hosp overnight and on home care for a few days. 25 year old daughter has had shunts since she was 14 days old. We know this routine pretty well.

8. Any other information: spouse had blackout with severe head pain in June 06, ambulanced to ER; treated like aneurysm with 3 weeks in ICU and step down unit, then AVM surgery in August; rapid recovery from that except for localized skull pain; heart bypass in Nov. when placing a stent was shown to be useless; hospitalized for pulmonary clots early Dec., on coumadin now, and regular physical therapy for heart health.

Extra note: husband has had ringing ears, pressurized-feeling headaches, slight hand tremors, chest pain, stumbling, and psychological mood issues for several years. We were treating him for mental illness when he had his blackout/collapse! He stills gets excitable and then very depressed so maybe the cyst pressure was affecting him all along.

Family connection??
See signature below for note about our daughter!
She has seen the same neuro group for almost 20 years so we feel pretty confident in their skills and care.

[softprofile]

All,

Please refer to my earlier post to get previous details of cyst of my wife.Basically we were asked to wait for a period of 3 months since the first diagnosis.We had a CT done on 05/15 ..following are the updates.

1. Diagnosed Date : 22 Feb-07
2. Cyst Size : 8mmx8mm ( CT) on 22 May-07
8mmx8mmx8mm (CT and MRI) on 22 Feb-07
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 : Visited our neurosurgeon and neurologist.The opinion of both of them is that we can wait for another year as the cyst has not grown and remains of the same size.Both doctors feel that surgery would be a inferior option and would cause more problems then the one it is intended to solve.They also think that as of now the risk for not treating is very low.We are continuing with homeopathic medicine as of now.
7. Surgery(if any) date: Not Applicable.
8. Any other information: No additional updates.

Please give me your views if this sounds familiar and also if it is a logical thing to do.

Regds,
softprofile

[tnoptimum]

Terry had a VP shunt implanted on May 23, sent home on May 24, back to ER for extreme pain on May 25, sent home after various scans and blood work but on different pain med and an antibiotic for UTI after 8 hours.
He's still having problems sitting up without wanting to cry from pain. Very confused. I'm having a rough time trying to get him to eat anything and to drink the fluids he needs. He does walk a little using walker from bed to couch a few times a day.
Doctor did not want to try to remove the cyst because of its location, so we are just treating the hydrocephalus at this point.

[Rono]

1) Diagnosed Date:5/17/07
2) Cyst Size: 2 cm plugging the foramen munro
3) Hydrocephalus (Yes/no): Yes
4) Ventricular Dilation (Yes/no):
Yes, larger on right side with acute infarction in the corpus callosum splenium due to hydrocephalus
5) How I found the cyst/Symptoms:
Severe headache with vomiting on 5/13 ER treated me for severe migraines and sent me home after C/T & MRI showed nothing?? The next two days I was home in a vegatative state and then things got bad again on 5/16, Back to ER. Given more tests and a spinal tap and then another C/T , this time on 5/17 they found the cyst. I was immediately transferred to another hospital for surgery the next morning.
6) Treatment: Craniotomy and removed Colloid Cyst of 3rd Ventricle.
7) Surgery date: Emergency 5/18/2007
8) Any other info: I had a TIA back on 3/18/2007 that rendered my left side useless for a couple hours. Started seeing flashing lights and had double vision then my left side went totally numb. A whole bunch of tests revealing no abnomalities and I was released to go home. Follow visit with neuro in 8 weeks (never made it).

[chunky]

Welcome Rono to a great support web site, Most of us have been thru similar instances; my cyst was removed in 1972 and it was quite an ordeal. Most people still have post op problems with memory issues amd most had open craniotomies verses done by a laparascope. Keep checking on a regular basis something, someone always comes in with an interesting question situation and most of us can relate to the circumstances. My story is under Colloid Cyst Survivior that I posted some time ago.
Best of luck to you and welcome.
Donna

[Serenia_Saissa]

1) Diagnosed Date:31 December 2005 8pm
2) Cyst Size: 1.5 by 1.2 mm
3) Hydrocephalus (Yes/no): No
4) Ventricular Dilation (Yes/no): ??
5) How I found the cyst/Symptoms:
Slipped in snow and hit my head, lost 10 minutes (amnesia) went to ER and had a CAT scan. They discovered it.
6) Treatment: Craniotomy of the Right Hemisphere
7) Surgery date: scheduled for July 26, 2007
8) Any other info: No symptoms except a few weeks of dizziness in March 2007. Sister died of Colloid cyst in 1993 after 3 weeks of headaches. Family history means I must have the surgery.

[Allpaw4]

1) Diagnosed Date: Early October 2003 (age 17 when diagnosed)
2) Cyst Size: approx 11mm cubed - CT and MRI
3) Hydrocephalus (Yes/no): Yes
4) Ventricular Dilation (Yes/no): Yes
5) How I found the cyst/Symptoms: 4 Major headaches at various times of day over 2 week period and 1 visit to the local hospital (and being sent home after a shot of pethadine) before being taken to major city's A&E dept the next day. Was not permitted to leave.
6) Treatment: Keyhole surgery, about 5 - 6 days after being admitted
7) Surgery date: Early Oct 2003 - cant remember much of being in hospital.
8) Any other info: Told that my skull indicates that there has been high pressures in my head for approx 12 - 15 years (so i was a time bomb basically)...
Was fine until 12 months ago - yearly scan showed new growth in the same place approx 4.5 mm cubed (MRI). new scan just a month ago showed increase to 6 x 7 x 4.5 mm (MRI).
Next scan scheduled for 5 months time.

Symptoms were major headaches that didnt respond to heavy medication, photophobia, and some minor gait issues.

Hopefully this helps and reinforces the fact to new-comers that while this is scary stuff, there is support around!
Ben

[chunky]

HI Ben welcome back we are always here and eventho my surgery was 35 years ago I still have a kinship with those who have and are going thru the same condition.
It helps us to support you with your concerns and hopefully point you in the right direction.
Donna

[Serenia_Saissa]

1) Diagnosed Date:31 December 2005 8pm
2) Cyst Size: 1.5 by 1.2 cm
3) Hydrocephalus (Yes/no): No
4) Ventricular Dilation (Yes/no): ??
5) How I found the cyst/Symptoms:
Slipped in snow and hit my head, lost 10 minutes (amnesia) went to ER and had a CAT scan. They discovered it.
6) Treatment: Craniotomy of the Right Hemisphere
7) Surgery date: scheduled for July 26, 2007
8) Any other info: No symptoms except a few weeks of dizziness in March 2007. Sister died of Colloid cyst in 1993 after 3 weeks of headaches. Family history means I must have the surgery.

Surgery successful - currently recuperating.

edited to change cyst size - should be cm not mm

[Levi]

Hi all:

I'm taking the liberty of "re-posting" this for Janis in this thread. She has posted it here (http://brain.hastypastry.net/forums/showthread.php?p=223889#post223889).

Regards and good health,
Matthew
============


1. Diagnosed Date : Still unsure
2. Cyst Size : 4mm
3. Hydrocephalus (Yes/no) : no
4. Ventricular Dilation (Yes/no) : no
5. How I found the cyst/Symptoms: I have never had headaches so when I got a really bad pounding one that lasted a few hours one night, I went to the hospital. I have had 2 CT scans and 2 MRI's in a year and a half. I haven't had a headache since.
6. Treatment : none
7. Surgery (if any) date: n/a

[Blue_line]

Ist Colloid Cyst

1) Diagnosed Date: 3/12/1992
2) Cyst Size: unknown
3) Hydrocephalus (Yes/no): Yes
4) Ventricular Dilation (Yes/no): Yes
5) How I found the cyst/Symptoms:
Severe intermittent headaches and tunnel vision related to body position.
6) Treatment: Endoscopy
7) Surgery date: 3/19/1992
8) Any other info: I'm leery of endoscopic procedures!

Colloid Cyst #2
1) Diagnosed Date: December 16 2007
2) Cyst Size: unknown
3) Hydrocephalus (Yes/no): yes
4) Ventricular Dilation (Yes/no): yes
5) How I found the cyst/Symptoms:
Developed headache and nausea after falling during an ice hockey game. Became unresponsive later the next day (early morning)
6) Treatment: Craniotomy
7) Surgery date: December 20, 2007
8) Any other info: Completely asymptomatic (I think) prior to falling during hockey. The second growth was non-typical in that it was flat as opposed to spherical. Craniotomy a much bigger deal than endoscopy but I hope there is less risk of recurrence.

[jpn9736]

1. Diagnosed Date: 10/6/2006
2. Cyst Size: ~4-6mm (CT and MRI)
3. Hydrocephalus: No.
4. Ventricular Dilation (Yes/no): No. Normal Ventricles.
5. How I found the cyst/Symptoms: CT scan for vision concerns.
6. Treatment: Serial imaging every 6-12 months (every 3 months immediately after diagnosis) based on opinions of three prominent neurosurgeons
7. Surgery(if any) date: Not yet **cros.ses fingers!**
8. Any other information:

[Allpaw4]

Hi all - its been a while since I have posted, but I have been on here quite a lot lately, just reading. New scans mentioned in previous post have pushed the size out to 6mm x 7mm x 6mm.
Had a chat with one of the main registrars at the Royal Adelaide, and they wont do anything until it reaches 8mm. Once at that limit, they will be asking me to set a surgery date.
I work underground at a mining site, so am unsure how long I will be off work for (They have some pretty stringent rules regarding broken bones, let alone removed parts of skulls!). Due for another scan in august. I will be opting for cranitomy over endoscopic just so that they can actually remove it rather than quarterising it. I dont want this for a third time.

Thanks for all the stories, I have just given mum and dad the address for this forum so that they can have a read as well.

Ben

[chunky]

Wow Ben, you are amazing. Having had an open craniotomy in 72' I am here to tell you it was worth it never had another symptom or question of new growth.
Donna

[Jeanne]

I like your format! Lots of good information. Thanks!
Jeanne

[avdr]

Here are my "stats":

1. Diagnosed Date: 13-Feb-08
2. Cyst Size: 10 mm x 8 mm x 6 mm (CT and MRI)
3. Hydrocephalus (Yes/no): No
4. Ventricular Dilation (Yes/no): Yes, dilated right lateral ventricle
5. How I found the cyst/Symptoms: Severe morning headaches
6. Treatment: Transventricular resection of cyst using a 12-mm retractor and microsurgery via a small craniotomy.
7. Surgery (if any) date: June 17, 2008
8. Any other information: Opted for surgery due to following reasons:
a. Intractable morning headaches which did not respond to medication.
b. Foramen of Monro might be partially obstructed from cyst on right side. I had right ventricular expansion/shape change between serial MRIs (2/13 vs. 4/19). The cyst had not grown appreciably.
c. I was advised to have the tumor removed by 2 neurosurgeons due to the size of the cyst (1 cm), ventricular dilation, and morning headaches.

All the best,

Aaron

[jdoolitt]

1) Diagnosed Date: April 4, 2008 (first diagnosis was in 1998 - see answer #8)
2) Cyst Size: 2cm x 2cm x 2 cm
3) Hydrocephalus (Yes/no): yes
4) Ventricular Dilation (Yes/no): yes
5) How I found the cyst/Symptoms:
Chronic headackes, gait problems followed by several falls, and CT Scan
6) Treatment: VP-Shunts April 23rd, Craniotomy / Removal of cyst May 12th
7) Surgery date: May 12, 2008
8) Any other info: Cyst initially appeared in CT Scan in 1998, symptoms began in early 2008.

[Jeanne]

First diagnosed date: December 2006
Cyst size: Not sure but I think about 11-13mm
Hydrocephalus: Yes
Ventricular Dilation: Yes
How I found the cyst: Extreme headaches, CT then MRI
Treatment: Endoscopic surgery
Other Information: Surgeon was unable to remove cyst without causing brain hemoragging. Unfortunately, this means the "grape" filled back up.
Second Diagnosis: January 2008
Size: 4mm
Treatement: None, my plan is to monitor it and have it checked every 6 months, hopefully only via CT.
Current status: Still have short-term memory problems. Easily fatigued.

[davep]

Diagnosed Date : 30th March 2007
2. Cyst Size : 55mm x 50mm x 50mm
3. Hydrocephalus (Yes/No) : Yes
4. Ventricular Dilation (Yes/No) : Not sure
5. How I found the cyst/Symptoms: Severe headaches and collapsed led to MRI which discovered cyst.
6. Treatment : Open Craniotomy a week after collapsing, a day after MRI
7. Surgery(if any) date: 31.3.2007
8. Any other information:
- Massive short term memory loss.
- Blood clot post surgery caused weakness on my left side and led to second operation to remove it.
- Operated on at Charing Cross Hospital, London.
- Had to postpone wedding for six months, and missed my Uni studies for six months.

[kafoster]

1. Diagnosed Date : Sept. 3, 2008
2. Cyst Size : 1.2 cm
3. Hydrocephalus (Yes/No) : NO
4. Ventricular Dilation (Yes/No) : NO
5. How I found the cyst/Symptoms: I woke up with a serve headache and over the course of a week lost use of right arm along with numbness on right side of face. An MRI was preformed on my brain.
6. Treatment : Currently I am just doing follow up MRI's every 3 months.
7. Surgery(if any) date: None Yet.
8. Any other information: I have headaches, dizziness, mood swings and forgetfulness but they Neurosurgeon says its not connected....I am getting a second opinion. I find it hard to believe that all these things are unrelated.

[softprofile]

Updates on cyst of my wife - 09-Mar-09: Two years under observation.

I last posted on 22nd May 2007,three months after the diagnosis of the cyst (8*7*7).Nine months later we did another MRI and the cyst remains in the same condition.Looking at the the results of the MRI neurosurgeon recommended further observation.

Its two years now since the diagnosis and touchwood the status remains the same.
Unfortunately homeopathic treatment did not remove it partially or completely.That was a bit of disappointment.Though the positive part is cyst remains in the same state and is not growing.

Hope more people put details of their diagnosis here for easy reference.Also are their any more under observation from more than 1 year ?

Regds,
softprofile

[SweMarten]

1. Diagnosed Date : Oct 31, 2008
2. Cyst Size : 10mmx14mmx9mm (CT and MRI)
3. Hydrocephalus (Yes/no) : Yes, severe.
4. Ventricular Dilation (Yes/no) : Yes.
5. How I found the cyst/Symptoms: Extreme headaches for 2-3 days, local GP thought it was Horton's headache (sort of migraine) but sent me to CT to be sure. Lucky me!
6. Treatment : Craniotomy.
7. Surgery date: Nov 2, 2008, at Karolinska University Hospital, Solna/Stockholm, Sweden.
8. Any other information: Quick physical recovery, mild problems with short-term memory and concentration. Medical rehabilitation for 6 weeks.
My fourth child was born two days after I completed rehabilitation, lucky me again!
Current status: Back to work, feeling well but easily fatigued.

[chunky]

Wow SweMarten, welcome to a supportive group of survivors. We all understand what you went thru and would be delighted to share our experiences and advice. keep us updated.
Donna

[mtman]

My wife's stats

1) Diagnosed Date: March 6, 2009
2) Cyst Size: 9mm x 12mm x 11mm
3) Hydrocephalus (Yes/no): yes, mild to moderate
4) Ventricular Dilation (Yes/no): yes
5) How I found the cyst/Symptoms: Chronic headaches for 6 weeks, was unsuccessfully treated for sinus infection when a CT and MRI showed the colloid cyst
6) Treatment: Endoscopic surgery-complete removal of cyst.
7) Surgery date: March 17, 2009
8) Any other info: Very quick recovery, no memory problems or side effects from the surgery.

[New]

1. Diagnosed Date : 28/02/09
2. Cyst Size : 8mmx3mm
3. Hydrocephalus (Yes/no) :Yes Slighly
4. Ventricular Dilation (Yes/no) : No.Small Ventricle size.
5. How I found the cyst/Symptoms: Headaches,Migraines,blackouts and memery loss.
6. Treatment : Craniotomy
7. Surgery(if any) date: 08/05/09
8. Any other information:

[Jodee]

1. Diagnosed Date : November 2000
2. Cyst Size : 1.5cm
3. Hydrocephalus (Yes/no) : Severe Hydro
4. Ventricular Dilation (Yes/no) : Yes
5. How I found the cyst/Symptoms: Headache that never went away, dizzy spells that made me sit on the floor and vomit, severe cranial pressure. I became altered with slurred speech and falling in and out of consciousness. That is what made the doctors finally do an MRI and diagnose me.
6. Treatment : Surgery - Right Frontal Craniotomy although the cyst was not removed, the shell was left behind.
7. Surgery(if any) date: February 19,2001
8. Any other information: First surgery went very smootly, I had surgery on Monday and I went home on Wednesday, two days later. No lasting problems, no memory problems.
9. Cyst Reocurrance - MRI's were not done after the first year. However, an unrelated specialist insisted on an MRI in April 2009 and the cyst is back, it is currently 9mm x 9mm x 8mm.
10. Additional Lesions - Another lesion was found in April 2009 in the region of the cribiform plate measuring 8mm x 7mm x 4mm
11. Second Surgery - yet to be determined, consultation with neurosurgeon is scheduled for May 1, 2009

Jodee

[softprofile]

For easy recall,my wife was diagnosed with a small colloid cyst around 3 years back
For easy reference please find her details below
__________________________________________________ ___
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)
__________________________________________________ ___

We had then decided to keep her cyst under observation.The last CT/MRI we had about a year and a half ago did not show any growth .We were then advised by the Neuro that this cyst doesnt require any regular CT/MRI scans.
Really very thankful to God that (touchwood) things have been same and we could lead normal lives since then.

Wanted to post my experience so that any one who his having jitters around opting for this line of treatment gain some confidence.

Waiting to hear from you all.

Cheers,
softprofile

[surrey]

Diagnosed Date: April 2009
Cyst Size: 6x6x7mm
Hydrocephalus:No
Ventricular Dilation:No
Symptoms: Headaches, memory loss, confusion when speaking (surgeon believes all unrelated - but they did find the cyst so....)
Treatment: Observation, initially every 6 months
Surgery: N/A