New member story...

[PeerQuaide]

Hi everyone,

I am a 36 year old guy, living in London who was recently diagnosed and operated on for a colloid cyst of the third ventricle. I wanted to share my story in hope that it inspires other people who may either have the same diagnosis or have friends or family that go through what I have been though.

At the start of the year I started to get very bad headaches along with some very bad visual disturbances and some co-ordination problems. I did see a doctor, who diagnosed me with tension headaches and told me to take a couple of Paracetamol and try not to get so stressed. A couple of months later, while I drinking in my local with Matthew and a friend, I started to show signs of temporary amnesia and couldn't remember what had happened a couple of minutes earlier. Alas this was the day before our trip to France so nothing could be done at the time. Our trip home from France was a little fraught and again the amnesia started on the four hour train journey home, ending up with me getting very distraught on the platform at waterloo station and the police coming to my assistance! The next day I saw another doctor who booked me in to see a neurologist a couple of weeks later.

On the 26th July I saw a neurologist who took a CT scan of my brain and talked through the problems I was having. An hour later, I was told that I had a 20mm colloid cyst of the third ventricle and severe hydrocephalus and that if they did not operate that very day then it was likely that it would kill me. From then on, I guess I was so shocked that I can't remember the 12 hours that I had to wait to go into surgery. I am glad to say that the operation was a complete success and what they removed showed no traces of cancer. As far as I know it's now sat in a jam jar somewhere in Fulham!!!

The first few days after the operation I showed all the usual signs of disorientation and confusion but my family and partner kept my spirits high while I lay puffed up and sore in intensive care but I was moved the following day into my own private room where I slept much better!! The surgeon would have released me a little earlier if I had chosen to eat the rather bland food that the served. In total I spent a week in the hospital before returning home.

I am glad to say that recovery is going well, I returned to work three weeks ago on a part time basis and did my first full week this week. Apart from getting tired very quickly and having problems with my short term memory, the has been no side effects from the operation apart from having a funky scar on my head!! Since I’ve been home I have been trying to keep my brain active by reading and using my Nintendo DS brain training software! Which has kinda helped in a way.... now looking forward to seeing the rest of my family at Christmas and a better year than 2007!

So that's it in a nutshell, those bits I can remember.... I guess I have been very very lucky!! My advice? Stay positive and stay healthy... keep going even when you feel you can’t (which I know is hard when you have colloid headaches!!)

Feel free to drop me a line if you want to chat or look me up on facebook where you will find a group for colloid cyst sufferers.

[Hopeful]

Thanks so much, PQ, for sharing your dramatic but very positive story! I hope you'll keep hanging around here for awhile to encourage those who are recently diagnosed. Take care, Hope

[chunky]

Hello UK and welcome to a great network of survivors and conguerors of Colloid cysts. It was a tough course for me, and today I am blessed to be alive to share my victory.
Donna

[Pearson]

Very Positive story. You recovered very fast. Good Luck and keep intouch this is a great network of ppl here.

[PeerQuaide]

Hi All,

Thank you for your kind messages and for your inspiration. Going to try and do a full week at work this week as I now feel its time for me to step back into my life again. There is something comforting about working 9-5 !

One small question... since the operation I have a small floating aura in my left eye, nothing to major and I only see if from time to time. Has anyone else had this following a Craniotomy?

Again, many thanks...

Peer. x

[Serenia_Saissa]

I too had surgery for a colloid cyst on July 26. 3 weeks later, my eyes went funny, and have only now been able to get an orthoptics appointment. However the neurosurgeon assured me that my eye problem (diplopia - double vision) had nothing to do with the surgery, because if it was, it would have started immediately after surgery - not 3 weeks after I was discharged.

I'd recommend that you try and see an opthamologist ASAP.

I have a second appointment with the orthoptic dept tomorrow, and hope to have plastic prisms attached to my reading glasses. I'm planning on going back to work in November - or at least start looking for a new job.

SS

[PeerQuaide]

Hey All,

Thank you for your warm welcome!!! Sorry that I have not been able to respond to replies for a while but I am in the middle of moving apartments and I have no internet connection at home (how will I cope!!).

Re the eye problem, I still have to get it checked out though the thought of spending more time in hospital or anywhere near a doctor freaks me out at the moment. I have been keeping an eye (no pun intended there!) on it for a while and I will see if it goes away. I just fear that getting it looked at might land me back in surgery if my last visit to hospital is anything to go by.

Apart from that minor problem, life has returnd back to normal now. Done a full week at work and feel like I have made a full recovery... even though my short term memory still feels a little rubbish at time!! DS brain check age of 36 now, instead of 80... so something has fallen into place.

Best wishes to you all... from a sunny London.

Peer. x

[snowangel12066]

Well I hope your moving has gone alright, we have missed you are you still doing well?? How is the head ?

Good I'm sure

SnowAngel:)

[snowangel12066]

So sorry sometimes i forget to type in Caps. I did not mean to send my reply without Capitalizing your name!! ooops!
:eek:

[PeerQuaide]

Hey SnowAngel.....

Yup move is done now and I am back in the land of the internet connected!! Been working away full time on the day job for the last two weeks and then working on my freelance work in the evenings... though I have to be honest and say that I am exhausted!!! Going to take the advice of my family and take a break next week out of London far from where work can get hold of me and where my mobile phone wont ring 24x7!! Maybe in hindsight I have take too much on this last month.....

Apart from that health is good... no headaches now and I feel back to normal once more. Short term memory is not so good but that is to be expected. I have seen it documented that it might take up to a year to sort itself out so I am resigned to it... just dont ask me to make anyone coffee as you never know what you might end up with!! Alas the work collegue who asked for a black coffee yesterday ended up with white coffee with two sugars, milk and honey!!! Brain was else where....

Peer. xx

[chunky]

wow Peer.xx congrats and my gosh take it easy. It was year before I felt comfortable to return to work; of course I was working in a critical care unit and people lives depended on my expert memory and skills.
Keep us posted on your progress and I will keep you in my prayers.
Donna

[PeerQuaide]

I'm glad to say that most of my work is design based computer work for the market research industry... so life isnt dependent on it... thankfully! Most of my working day is spent sat in the quiet working on my computer and thinking up new ideas for clients...

One question, I know it sounds stupid but does anyone have any problems with remembering the day of the week post op?? Not the date but the day. I can remind myself that its Wednesday today but five minutes later I will have forgotten... I now have a little widget on my computer to remind me but that only lasts as long as I am sat here!!!

Peer.

[chunky]

Yup I couldn't remember; in fact when the MD walked in the room I didn't neven know what hosptial I was in.
Donna

[Discododi]

Yes, Peer, I had that same problem for quite some time. It has gotten better though.

[PeerQuaide]

Thanks folks... thats put me at ease a little. I did go out and buy a watch last week to try and help me but typical me, I forgot to check that it showed the day of the week!!! Ah well it looks good ;)

[BambiVA]

I work shift work and do not have the same days off each week, sometimes my weekend (days off) are Tues, Wed and the next week they will change to Wed Thurs. Not only that my hours of work will change from 8-4 to 4-12 and then the Mid to 8 shift. Try keeping up with that...:eek: I have done it for years.

Donna, I can also remember the nurses asking daily what hospital I was in and I would alway tell them the wrong hospital until one day I started reading their badges they wore. One way to skin a cat..LOL

~Bambi~

[PeerQuaide]

The staff used to ask me what year it was... and even though I thought it was 2005, I could name the new prime minister.. I could tell them in every detail what had happened to me.. but could I remember the right date? Nope!!! During my move the other week I found the pad that my family kept by my bedside and I wrote notes in... quite shocking to be honest. That's gone in my 'evil blob' file that I keep to remind me how bad things had become this summer and to inspire me to put my best foot forwards!!

[dka_palmer]

For a long time I had a hard time remembering what day it was, I actually didn't know where I was when I came out of surgery (I thought that I was in a different state). For a couple of years I had a daytimer where I wrote everything down, and I would be checking it every hour. That worked for me most of the time.

[Hopeful]

Just to chime in, my problems were pre-op as opposed to post-op. I always knew when I answered a question wrong because everyone in the room kind of froze up as if creeped out. I would then think harder and try again, but apparently in those last hours I was pretty darn confused and then completely out of it. I'm told that after my first craniotomy I would doze off for ten minutes, ask what day it was, and when they told me I would say, "STILL Wednesday???" then fall back asleep for another ten minutes, wake up again, ask again, and so on and so on and so on. The patience of nurses is so amazing!

[BambiVA]

Once I was home from the hospital I would wake up every morning and ask my husband is it Thanksgiving yet?

Hopeful, Yes it takes a special type of nurse to work on neuro department in hospitals. I was down right rude to them. But they seemed to know it was not the real person but the brain surgery person talking. If that makes sense to anyone???

~Bambi~

[PeerQuaide]

I guess I was lucky that the two nurses who took me into surgery and looked after me in the early days had such dedication. Both had been seconded from the cancer unit. The pair of them managed to calm my fears down to the point where I was ready to go into surgery when the porters came a few hours later.

I did write to them a couple of weeks ago to tell them what an amazing job they had done and how they had managed to persuade someone who would normally have problems getting on a bus (i suffer from mild agoraphobia) to overcome their fears and have major brain surgery and how I had made such an amazing recovery thanks to their dedication and kindness.

Alas the health service in the UK is always under fire for its performance but in my case it did me proud.

[PeerQuaide]

"For a long time I had a hard time remembering what day it was, I actually didn't know where I was when I came out of surgery (I thought that I was in a different state). For a couple of years I had a daytimer where I wrote everything down, and I would be checking it every hour. That worked for me most of the time."

I am on the look out for a bed side clock that shows both the time and day now as a prompt for those unsure mornings!!!

[chunky]

Hi Peerqaide, I went thru a period when conversations I had seemed like it happened weeks ago. Most issues would get 'dumped" in my long term memory bank, because when I tried to remember what was said I couldn't remember and then a few days later the thought I was looking for would suddenly show up. Today it only happens when I am stressed with a conflict taking place. My 28 years as a crtical nurse what never affected. Today I also attribute it to "old" age...ha!

[Spinolio]

PeerQuaide, have you seen an opthamologist about that? 2 weeks after I came home hrom the hospital, I woke up one morning almost completely blind in one eye and partially blind in the other. Obviously, I panicked. My wife took me see my eye doc and he found that all the blood vessels in my left eye had hemorraged and some in the right eye as well. He said it was a result of the surgery, but consulting with my neurosurgeon proved useless since "it couldn't possibly have had anything to do with that". Yeah right, what a pile of crap. Neither me or my eye doc bought that line. Anyway, I wouldn't stress out about it too much unless it's been there a long time or is really bothersome. Mine healed, and aside from a couple small black spots in front of my left eye, my vision is clear now. The ones that are there I normally don't even notice as I focus past them. I really only notice them if I'm looking against a grey background, like a sidewalk. I don't know if this is what you've been experiencing, but I still think a trip to an opthamologist is in order. I hope all goes well for you.

[PeerQuaide]

Thanks Spinolio, I will make a trip to see my optician as soon as I return back to London at the end of next week. I had been meaning to see him post op as the reading glasses I have now may not be much use for me now that the hydrocephalus has gone. I am not too worried about it at as I only see it when I am looking closely at something.

[Serenia_Saissa]

One question, I know it sounds stupid but does anyone have any problems with remembering the day of the week post op?? Not the date but the day. I can remind myself that its Wednesday today but five minutes later I will have forgotten... I now have a little widget on my computer to remind me but that only lasts as long as I am sat here!!!
Peer.

Yes I had that problem, I was always getting the days of the week wrong. For the first 2 months at least.

[PeerQuaide]

For the first time since Feb... I managed to put on my running shoes and run around the local park... only 2km but it's a start. I hope that being able to get my stamina up will help me overcome the tireness that I have been feeling this last couple of weeks. Not long to go and it's the Christmas break for me... then the end of 2007. at 11:58pm on the 31st I will no doubt watch this year end with the friends who have shown me so much love and support and then throw open all the windows and doors to welcome in a better year.

[chunky]

good for you..I can't run like I used to so I walk brisk as often as I can or at least once a day sometimes 3 times.
I am 65 still working altho the new issue in my life may make me put my nursing cap away for good.
Have a great Christmas...remember He's Alive!!!
Donna

[PeerQuaide]

Hey Donna,

Thank you for your kind words on here.... I feel blessed to be part of this community and to have some great people to keep me sane! Hope you are doing something special for Christmas and New Year. This will be a family one for me.... after the year I have had then its the only option.

God bless and have a good Christmas...

Peer. x

[PeerQuaide]

OK had my first memory related accident last night at home... which isnt bad seeing how often I forget things and the amount of stuff that I do in the day.

Last night while cooking dinner, I decided that I would brown off the chilli sausages in the frying pan before putting them in the oven for half an hour. When it came round to dishing up the food, I took the pan out the oven and put in on the side. A few moments later guess who turned round and picked up the pan by the metal handle? My poor hand was burned quite bad.... and I spent the night sleeping on the sofa with my hand in a bucket to cool the thing off!!! That will teach me to let my mind wander while cooking....

[Hopeful]

OUCH! I hope your hand heals quickly! At least you're still typing ...

[3boysmom]

I hate to admit it, but I did the same thing too~ (actually several times!) but I was baking and took the pie out, put it on the cooling rack and turned around to get the topping and picked up the pie...yikes--nothing like a third degree burn! :eek: Anyway, my mother thinks I am going to burn the house down one of these days ( I was toasting a bagel for my son the other day and forgot about it..I really don't know how, particularly because the toaster oven ticks so loud...but nonetheless...smoke alarm goes off and at first can not realize why until I see the smoke coming from the kitchen!! Luckily it was just contained to the toaster oven. This memory thing is awful...:mad:
take care of that hand....cocoa butter works wonders!
~L

[Discododi]

I used to use a very loud timer in my kitchen to remind me to check the stove or oven when cooking. I did not trust my short term memory enough to rely on it!!!! Especially when I would cook my son's favorite pizza bagels in the oven.


Have you ever left out a very important ingredient in a recipe?...salt, sugar, etc?:D

[PeerQuaide]

"Have you ever left out a very important ingredient in a recipe?...salt, sugar, etc?"

I always leave out the salt!! Number of times friends have descreetly told me over the dinner table.

[Discododi]

Cakes without sugar are very interesting!!!!:D

[snowangel12066]

I am so sorry I have been absent I broke my ankle duh!!turning around with to much in my hands and trying to take out my big black lab for a walk He felt sorry for me. I did not!! So needless to say I have just got back to my computer. I am so sorry to hear about your injury. I tried to burn the house down a couple of months ago during my bad migraine months. I set the oil on to get hot and thought I'd make my son some french fries instead my head ached so bad I went and sat down on the couch and forgot all about it. Next thing I new there was pretty lights coming from the kitchen. I said hey who lt a candle in the kitchen. Nice huh.......:eek: I hope your hand is healing well. Try to cook with family around. It's much safer.

[PeerQuaide]

Glad to say that the hand is much better now.... just my ego thats hurting!!

[dka_palmer]

It does make me feel a little better knowing that there are others who are still experience some of the same problems/challenges that I have. Like I have said, I was treated in 1991 when I was 15 years old and I didn’t know of anybody else who was diagnosed or recovering from a Colloid Cyst.

I only found this support group last year, and it has been a comfort relating to everybody. Although I think that my memory has improved in the 15 years since my surgery, every once in a while I feel like I have a relapse.

I have set up so many routines in my life to help compensate for memory limitations, something that I started after my surgery. For example, I work in an office complex that has several parking lots with multiple levels in each lot. For three years now I have parked in the same spot, it is not the closest but I know that I can usually park there.
Well, the other day I had to leave for an appointment in the middle of the day, and when I came back my “Parking Spot” was taken, and I was forced to park somewhere else.

Well, at the end of the day I walked out to the parking lot and felt completely lost when my car was not in the usual spot. I remembered leaving for the appointment, but for the life of me I could not remember where I ended up parking.
After almost an hour of walking the parking lot I finally found my car and was able to head home.

Ok, it does not happen all of the time like it use to, but after 15 years I have learned to find some humor in my little lapses of memory. Better to laugh then to cry…

dka

[Levi]

Hi dka:

It sounds like you have a good atitude about it. That seems healthy.

I found the following article interesting. I don't remember if I read the whole thing or not but I do know that I could relate to many of the "What is not normal":

Thus, they have exceptional difficulties in relocating a parked car or in locating items around the house
...
they have no interest in reading novels, newspapers,
...
watching TV or films poses apparently insurmountable integration problems
... (http://cogprints.org/920/0/critchelyf.pdf)

Granted, our brains are just partially split and not completely. Perhaps, I'm improving after 8 years since I actually remembered a few dreams the past month. Before surgery, it was 2-3 a night though and now it's once in a blue moon despite using a technique that's suppose to aid in remembering dreams.

My family still gets laughs out of me and sometimes think that I'm not serious.

Regards,
Matthew

[chunky]

Wow very interesting I copied it to my documents thanks for the info
Donna

[Levi]

Hi all:

What was funny was not that I can't remember my dreams but my "memory problems".

I made some bread dough and put the water in twice. I had to throw it out since I didn't want to run to the store to get some more flour to double up on the other ingredients. I make this recipe often.

I was stressed out because I couldn't find the recipe book for a simple salad dressing recipe which you would think that I would have down pat by now because I make it often too.

My mother-in-law was visiting and we were watching a movie together ... About the third time that I asked a similar question to my wife about who a character was, she laughed and then asked my wife if I was "serious".

I left the bike rack on top of the car from a vacation because it helps me to scan my vehicle if I forget to find a landmark when parking. Sometimes when shopping, I'll start to go left out of the store and everyone else in my family is walking to the right. I just coolly follow them and try to act like it's what I was doing all along.

My wife pointed out to me that I had 4 or so books that I was actively reading. I just told her that I was using a staged approach when she asked how come I don't just finish one. So, I do have an interest in reading, but just can't seem to stay focus long enough to finish one.

I have been shopping for groceries a lot more. My wife recently organized the pantry and we had about 7-8 cans of similar items like condensed milk. I was buying but not using. I just told her that it was for a rainy day and that it can be substituted for many things.

I'm sure she could come up with many other instances.

Regards,
Matthew

[chunky]

Invariably when my husband and I go shopping to this day I walk out of the store and walk the direct opposite to where our car is...and if I don't make a mental note (good luck) of where I parked the car I spend a lot of time looking for it, also when we rent a video after the first scene I will remember seeing the movie...but not when I rented it!
Donna

[Hopeful]

Thank you, Matthew, Donna, et. al. for sharing your funny moments! I've been blessed never to have any short-term memory issues, but I'm very sympathetic to yours (we have several family members with age-related memory issues, some quite serious), and I commend you for keeping your sense of humor about it all!

[PeerQuaide]

On my first day out of hospital my mother tells me that I showered something like seven times in the space of three hours... she would have told me but she thought it might upset me that I couldn't remember. I must have been the cleanest boy on the block!!!

The other trick I had was going to the ATM to take money out and then forgetting that I had done it and then go out again and take more money out. I got quite a surprise when I went out one night and found fifty pounds (a hundred US dollars) that I had no idea how it had got there! Alas a quick check on my online bank statement showed that the money fairy had not paid me a visit, which was a shame!!!!:D

Yes, it's good that we can laugh at these things and it's makes it easier to know that I am not the only one who has these little moments...

And I managed to cook dinner tonight without burning anything.

[PeerQuaide]

Well I have hit that six month post-op milestone today and I am feeling great ... my eneregy levels have almost returned back to normal now (thanks to getting back on my mountain bike and cycling to work and back) and I am feeling on top of the short term memory problems and I have to face the fact that I do have problems for the time being but hey, I can live with them!!

Had loads of phone calls over Christmas and New Year from family and friends who have told me how proud they are that I got back on my feet and have not let the post-op depression get me down too much!! Still wanting to read my first book since the operation but I dont think this is something I can push right now. I've even been to the cinema and managed to watch a movie without getting lost in the plot!!! So things are looking up.

Alas bad news came just after Christmas when I found out that my boss had lost his fight to cancer after a brave five year fight and that I had lost someone who had given me so much love and support while I was seriously ill.... not every boss would call you daily to ask if you needed to be at work and would send you home at the earliest signs of tiredness.... such a great shame but I will never forget everything that he did for me in my moment of need. I now feel that the best thing I could do is honour his name by trying my hardest to get beyond the colloid cyst and work my *** off to bring new ventures into his company.

I've got an appointment to see the hospital on 14th Feb (there goes the romantic plans for the evening!!) to see my consultant who wants to use my case to educate other surgeons about the condition... and who am I to say no? After everything they did this year its the minimum I can do to repay them!!!

So roll on the next six months and we can have a real big party!!!!

[chunky]

Hi PeerQuaide, You sound like you are doing great...go for the grand rounds and let them know we are out here. I am a survivor who returned to critical care nursing for 17 more years post op.. , so they and you can give others hope. Best of luck keep us updated.
Donna

[Hopeful]

Dear Peer, I'm very sorry to hear about your boss. It's uncommon to find that level of compassion in a business environment.
And thank you for allowing study of your case to help educate surgeons on colloid cysts. That's a great way to recycle your trauma for good purpose.
Best, Hope

[PeerQuaide]

In a strange way I am looking foward to the 14th of Feb so I can go over one or two minor problems that I have at the moment and I hope that they can put my mind to rest....

I still have this little semi-transparent blip in my left eye... its a little bit like a floater but its a blob of colour rather than a strange of protein. Its not a major problem but I fear that it might be the start of something...

And my energy levels are back to zero again, even with the cycling and a good healthy diet. I can sleep for eight hours a night and wake up with no energy at all and its getting me down a little now. Still its only six months on as most my friends tell me!

All in all I guess I have been very lucky with my operationa and I agree with Hopeful that if my case can be used to educate more surgeons then that can only be a good thing!!!

[chunky]

Hi Peerquaide, Important to note that your body went thru a significant trauma, yes you healed fast.. also note that they were inside of your head.
The brain is the organ of our hard drive that governs, what we say, think, feel, and do...don't be surprised at your set back... You are hard on yourself and I want to encourage you that each of us heals differently and as nurse in critical care for 26 years and now a managed care as a case manager for the last 18..that has not changed. Best of luck at the grand rounds.. maybe they can shed some light on your setback.
Donna

[PeerQuaide]

Very good advice there... thank you.

I took a week off work this last week and stayed at home in front of the TV and the Wii and tried to remember that the depression was quite normal.... especialy with everything taken into account.

I did at one point find myself wondering why they had taken the thing out and left me in this in-between state where I dont have energy and have no mental strength to do the one thing I love.. design. However as soon as I found myself saying this out loud I could see how stupid an attitude it was.

Glad to say that a after a couple of full nights sleep and some good cycle rides around town I am feeling much more perky again.

I have a six month evaluation this week and I will talk to the NS about the minor problems I have been facing and maybe suggest that I have some form of counciling to help me come to terms with what happened. It still drives me crazy that I can not remember one of the most important weeks in my entire life... though I am resigned to the fact that maybe I never will.

I will let you know how it goes when I have seen the NS on Thursday.

Peer. x

[Hopeful]

Hi, Peer – I’m sorry to read that you’ve been feeling down. You went through a dramatic, life-and-death emergency, so it is going to take time to “process” it all. Good sleep, sunshine and exercise sound like great therapy, and I think it’s healthy that you’re also considering counseling to help accelerate the processing.

Don’t push yourself too hard. You mentioned wanting to work hard to honor your former boss’ memory, but remember he was the one who would send you home early to take care of your health.

I understand your frustration that you can’t remember that week in your life, but you will have to let that go. Try to consider it a gift – your brain shielding you – that you don’t remember the very worst. I mentally checked out on Sunday night and didn’t check back in until Wednesday morning. I couldn’t tell you a single thing about those days. Like you, I wish I could – especially to remember the amazing people who were helping us – but oh well! Some of them (like the anesthesiologist) re-introduced themselves as I went through my second surgery, so at least I had a chance to thank them, but there were others I never got a chance to thank because I have no idea who they were.

Every now and then I pray the famous serenity prayer – asking God for the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

And by the way, even though I feel completely healthy and don’t worry at all about the cyst in my head, when I have to tell the story of my emergency to someone new, my voice still cracks. So it takes time.

Hugs, Hope

[Jeanne]

I'm new to this forum and can't figure out how to post. But I do need the support of this forum. I underwent orthoscopic surgery with the goal of a removal (resection) of a colloid cyst in Dec. 2006. The resection was unsuccessful and the surgeon was able only to empty the cyst and do a decompression and the cyst walls. It has now "reconstituted" itself and is 4mm. Mayo clinic (in Phoenix) recommended monitoring it. Having heard the risks of a second brain surgery, I was mildly relieved and I was not sure I would have been willing to take the risks (more than double). I can't find any information (there may be none) on how rapidly these cysts grow and am waiting to receive the reports for Mayo (I just returned last Saturday). I'm wondering if anyone else has had this experience?

[chunky]

I'm new to this forum and can't figure out how to post. But I do need the support of this forum. I underwent orthoscopic surgery with the goal of a removal (resection) of a colloid cyst in Dec. 2006. The resection was unsuccessful and the surgeon was able only to empty the cyst and do a decompression and the cyst walls. It has now "reconstituted" itself and is 4mm. Mayo clinic (in Phoenix) recommended monitoring it. Having heard the risks of a second brain surgery, I was mildly relieved and I was not sure I would have been willing to take the risks (more than double). I can't find any information (there may be none) on how rapidly these cysts grow and am waiting to receive the reports for Mayo (I just returned last Saturday). I'm wondering if anyone else has had this experience?
The best way is go to the first page for colloid cysts and enter your question under "new thread" this way you can receive specific answers for your question only. and Welcome to the web site
Donna

[Serenia_Saissa]

I am so sorry I have been absent I broke my ankle duh!!turning around with to much in my hands and trying to take out my big black lab for a walk He felt sorry for me. I did not!!

You broke your ankle? Oh no, that is awful. My hubby did that a long time ago - and the bad news is that he has never been able to walk properly ever since. In fact he must use a cane when he is walking. He's had several surgeries for his ankle - to take out various metal rods that were put in - but he refuses to have the bones fused, because that will totally prevent him from walking. Good luck with the ankle healing.

SS

[Jeanne]

Thanks for your positive post! I know I needed it!
Jeanne

[PeerQuaide]

Well I saw the hospital today but to my slight surprise it was not the usual consultant I would have normally expected to have seen. Instead I was seen by one of the UK’s top headache and migraine specialists who had requested a consultation with me. At first he listened politely while my partner and I recalled the start of my illness, in particular the migraine like symptoms that I had at the time and how that slowly descended into 24 hour long headaches, transient global amnesia and eventually loosing the ability to walk. He was very interested in those early symptoms and how I was diagnosed. Alas his request for me to draw my visual disturbances drew a blank but I have promised him that I would sit down with Photoshop at some point and illustrate how they looked and what kind of patterns and colours I saw. I have now attached these to this post for others to see!

It was only at this point that he explained how lucky I was that I had got the diagnosis when I did as it sounded like I could have suffered from drop death at any point from then onwards and that it was only the hunch of my doctor and the first migraine specialist that saved me. From what he was telling us was that the symptoms I had been suffering where in no way typical for colloid cyst sufferers and that my diagnosis far from being three in a million, was almost globally unique!! With that in mind, did I mind if he took my case notes out to future conferences and documented it so that neurosurgeons can learn from it in the future. And who would I be to say no?

Alas a few of my questions didn’t have the forum to be asked but the biggest thing that had been plaguing my mind in the last six months, could it return... was swiftly answered by a resounding no!

So six months on from the surgery and I finally feel like I can take my life off pause and put my best feet forward... well until the brain scan in December.

Thank you Hopeful for the prayer (http://www.cptryon.org/prayer/special/serenity.html)... I didnt know this prayer and looked it up on the web and now it should be my new mantra! I will remember to print it up and keep it in my wallet.

Thanks again folks for all your love.... I couldnt have done it without you.

Peer. x

(and get well soon SnowAngel... we miss you!!!)

http://www.curiouspixels.co.uk/cs/early_stages.jpg
Early Stages

http://www.curiouspixels.co.uk/cs/later_stages.jpg
Later Stages

[Hopeful]

Wow! Your pictures are mind-blowing! I thought my visual disturbances were pretty crazy, but nope, you take the cake! (I describe mine as thin, intertwining ribbons of translucent light. They were kind of like thin ladders, with the space between each rung a different, very pale rainbow color.)

Well I am so glad to hear that your cyst is not coming back! What a tremendous relief, and I know we are all very, very happy for you. I’m glad you found the prayer helpful, and please keep us posted as you continue your recovery, both emotional and physical.

Take care, Hope

[Blue_line]

Who would have thought there would be an on-line group of colloid cyst survivors?

This past December 20th I had my second surgery to remove a colloid cyst. The first was about 16 years ago when it presented as a classical colloid cyst with headaches and tunnel vision resulting from changes in body position. In '92 they removed the cyst endoscopically to avoid the invasiveness of a craniotomy and hopefully minimize bad side effects.

Once the surgeons reached the cyst they found that it had hardened and they couldn't simply aspirate the contents of the cyst. They had to "blast" away at it with the laser until they were satisfied that most of the cyst was gone. Needless to say there was still some cyst left behind.

I recovered quickly from that procedure and returned to my engineering job without any noticeable effects from the surgery (other than paranoia every time I got a headache).

After 10 years of follow-up MRIs with no detectable change in the cyst the doctors said I could stop monitoring it.

Six years later (12/20/07) I found myself back in surgery having a re-formed cyst once again removed--this time via craniotomy. I was completely asymptomatic the second time around. Apparently the second cyst had been forming but not blocking the Foramen of Monro. Without a blockage I experienced no hydrocephalus.

On 12/15/07 I was playing hockey and took a spill on the ice. Later that night I started having severe, acute symptoms and my wife called an ambulance to take me to a hospital (luckily a nearby level 1 trauma center). They quickly identified the hydrocephalus and put in a shunt to remove the pressure. The doctors think my spill during hockey may have jarred the cyst into the position where it was nearly totally blocking the Forameni of Monro. Several days later I was in surgery to have this second cyst removed.

Unlike the endoscopy, the craniotomy knocked me on my butt for a little over a month. After that however I went back to work part-time. I'm now nearly full-time and feeling pretty good. I had my last post-op consultation with the neurosurgeon yesterday and he was very happy with my recovery so far. He cleared me to go back to most activities, including hockey which sort of amazes me

Time to wrap it up so I'll just wish everyone else on this site good luck with their personal battles.

Glenn

[chunky]

I remember one thing my neurosurgeon said to me in 1972, after I had my craniotomy that "all" brain tumors are "malignant".
I believe he did not mean cancerous, but that they can re-occur! With the removal by scope verses an open craniotomy and that appears to be the case.
Donna