Hi I am new here, but not new to headaches
 

Let me introduce myself. My name is Tracey, I am a nurse up here in Canada, and am 18 months post-op of an endoscopic colloid cyst removal, :) and 17 months from finding out that I have a reoccurring colloid cyst in the same location. :eek:

I am here to say to all of you that are going through this, that I am an example of how life can go on and although I have a constant headache (which is well treated with a medication I take nightly), and some memory deficit (I have gotten pretty good at covering that!), I have been able to get back to the life that I left pre-surgery.

I did not know that I was walking around with this marble in my head, growing and causing the headaches that I was getting used to and somehow ignoring, until finally I decided that I must be coming down with something that was causing a migraine that I had never experienced before, and I laid down to rest and fell unconscious, only to be found TWO days later in my home by paramedics, still unconscious with obstructive hydrocephalus. I awoke with a shunt that had been placed to drain the fluid but the cyst was missed. A month later when the headaches persisted, the culprit was found and later removed in a procedure, though higher risk, but agreed upon to clamp the shunt to create a larger space again to endoscopically remove the cyst once and for all. A month after that, a reocurring cyst was found in the same location.

I returned to work after each surgery, but have modified my responsibilities. I no longer feel comfortable to make patient care decisions, and feel much more efficient in the nursing management position that I am in now. I have had to learn that I am changed, and although I look and sound the same, I am not the same, and my friends and family can never understand that when I tell them I forgot something, it is not the same as the regular aging memory deficit. I get the distinct feeling sometime that I may know what it is like to have early-onset dementia. I have days where I am easily agitated, have a short fuse, and am irritable. I simply attribute these things to my ongoing headaches, that for the most part are manageable, but sometimes are not.

BUT, most days are great. I am thankful to be alive, grateful that I was found before I had severe brain damage, though having obstructive hydrocephalus for as long as I had it, unconscious for 2 days, shows that miracles do happen, I truly believe. I am grateful to be able to share my story with people who 'get it' like all of you, and maybe even with people who don't. I find comfort knowing that I am not alone, and also a sense that I need to share my story, that someone out there may be needing to know that THEY are not alone either. :hug:

Tracey

Great to have you with us, Tracey!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hello....this is my first post. I wanted to wish you the best...I too have had a colloid cyst removed (via craniotomy) and am 2 months post op. I am sorry to hear that your cyst has reoccurred--what are the odds of THAT?? Seriously....I thought the tumor itself was like a 1 percent thing--and then to have it reoccur??? My thoughts are with you and I hope you do not have to go through another surgery, BUT-- if you do, know that you have people praying for you...
This has been a VERY challenging time. I still feel like I forget SO much and I feel confused a lot...I feel like a different person....do others feel the same way or is it just me?

Best wishes

hi tracey and welcome,

what an inspiring story. i'm glad you're still able to work, tho in another capacity. i have MS. i worked NICU for 35 yrs. i had to retire because i couldn't all that my job required, including the 12 hr days.

i'll be looking forward to more posts.

I am now healing from my 3rd surgery
 

Hi everyone,

It has been a VERY long time since I posted, I have a lot of catching up to do and will be checking out the colloid cyst forum specifically. I had my 3rd surgery to remove a recurring colloid cyst three weeks ago. Apparently it is very rare to reoccur, my neurosurgeon said I'm "special". well I'd rather not be special in this case quite frankly!! Anyone else out there have to redo the surgery? I would love to hear from you. It seems that each time my brain has the trauma of surgery I come out a bit worse for ear. I am still taking Amitryptilline for headache managament but now have been presecribed Gabapentin as well. I am not so sure I want to add Gabapentin to my daily regime. Thoughts anyone?

I have short term memory loss, hoping that its just too soon for a full recovery as its only 3 weeks post-op tomorrow, but I feel far from being able to return to work. I feel "wonky" in the head, hard to explain, confused and faking it a lot of the time, very fatigued sometimes, grumpy, very emotional and easily overwhelmed. Not at all my bubbly self. I miss my old self.

Tracey