Surgery Scheduled

I'm finally going in for surgery. I will have my coiling on March 22nd.
So far I don't know anything about the side afffects or what I can expect following the surgery but I thought I'd send an update into cyberspace nonetheless!
Wish me luck!

The end of 2010

Well it's been another year of waiting. Since being diagnosed in December 2008 with a 6mm brain aneurysm I'm still waiting for surgery. Although I was supposed to be having surgery in the "fall." I never recieved a call with a specified date. In fact I had to call the Neurologist office to find out what was going on. My reply was, "You got bumped, what more can we say?" Perhaps a phone call in the early fall, mid fall or late fall would have at least eased my tension or provided me with some respect.

We're now moving into 2011 and I have no idea what this year will hold for me. I have not had any updated tests since 2009.

I've recently turned 36 and we're starting to try to have a family. We decided that since I have to continuously wait for surgery what's another 9 months? I don't want a Steel Magnolia's type of moment but it's not too far from my mind.

I can only say that since being diagnosed with PKD (Polycystic Kidney Disease) in September 2008 and a brain aneurysm as a result of PKD in December 2008 my life has been put on hold. In fact I haven't had a single check up with regards to my PKD with my Nephrologist since 2008. At that time he mentioned to me that I would have to have regular check ups becuase they need to watch a spot on my liver. I called after a year...than 2 years...but was never given a return call or follow up appointment.

With the Fertility clinic I'm monitored every day. I'm carfeully poked, prodded and interviewed.

You know what the difference is? Where the money is coming from and how fast it reaches my Dr.'s pockets.

That's all for now

Still waiting for the call

I'm still waiting for the phone call that will give me my date for surgery. It's now October and I was expecting the call by the end of August. This is the story of my life for two years and likely for the remainder of my life. I get to wait for someone to tell me something...anything...
I have a time bomb in my head.
I'll say one thing, it puts life into perspective. It's made me sort out what's important and what's not. I've also had plenty of time to create a vision of my idealistic future with children. I'm turning 36 and I've put having children on hold for this. I didn't want to put any risk onto myself and I only wanted to handle one thing at a time...but for what? I've waited since 2008 to have a family for what? I could have started years ago and still not had the surgery on my brain. I waited for nothing and I'm hoping to God that it's not too late.
I'd like an answer.

I've waited patiently

I know that I’m writing these blogs as a diary for myself. I hope that at some point I will look back on my entries and be thankful that my surgery was a success. I’m even more hopeful that my life will begin again at age 36 and open up new doors and possibilities. More specifically, I want to have a child. Since my diagnosis in 2008 I put my life on hold.

Since then, I have spent many hours thinking about pregnancy and starting a family but know that nothing can progress until after I have taken care of the time bomb in my head. I hate this. I hate that I’ve sat here waiting for two years while others outside of the GTA or Ontario can get treatment within weeks of diagnosis. I hate that I live in a populated area that doesn’t have enough surgeons. I hate that I haven’t received my promised phone call by the end of August. I hate that I haven’t picked up the phone to call them. But I’m tired of being the one to call. I’m tired of the sighs on the other end saying, “Haven’t you received your letter in the mail? You have to wait for the letter?” All the while I think what freaking letter? Who delivers surgery dates by snail mail?

My surgery is supposed to be scheduled for this fall. I loosely say fall because I wasn’t given a definitive timeline. “We’ll call you at the end of the summer, Dr. so and so takes the summer off.” I can picture him golfing still. “How about you finish your game Doctor, take your time. I’ll be here…waiting. No biggy, it’s just my brain.”
I think I’m just angry today. Today is one of those days when I can honestly say I’m fed up. I’m tired of being tired. I’m tired of worrying myself and the worry that I’ve placed on my family members saddens me. I’m tired of waiting…

Grinding the night away

I'm not sure if this will happen to anyone or everyone who has a brain aneurysm soon after I was diagnosed my partner noticed that I started grinding my teeth at night. It has been really infrequent so I forget to mention it. However, this past weekend was horrible. I don't really know if there's a connection with the aneurysm but as I've said before, everyone's symptoms are different.
For me, the pain keeps me up at night. My teeth grind and I wake up with a sore jaw and aching teeth. I almost feel as though teeth are growing on the side of my jaw...hard to explain.
I just wanted to post a little bit of an update just in case anyone reads this.
Cheers,
Sarah

35 and alive with an aneurysm, no sob story here

Congratulations to myself for finally taking the time to blog. I think my main hesitation is I did not know what to talk about and if my life is read worthy. Let’s be honest, does anyone really care what I’m doing on a day to day basis? The fact of the matter is I have something in common with many Canadians and Americans in that I’m living with PKD (Polycystic Kidney Disease) as well as a 6mm untreated brain aneurysm.

Since being diagnosed officially with a brain aneurysm in 2008 I searched relentlessly for answers. My immediate thoughts on December 22nd when I was given the not-so-great news is that I was going to die. Who doesn’t think that? I know that I ‘m not alone. For months I struggled with sleep at night wondering if I’ll be a cold slab lying next to my partner in the morning.

I searched the web for answers but found basic examples of what ‘might be symptoms’ or what ‘might happen’ if my aneurysm ruptures. I waited for my newly assigned neurologist to contact me and give me the answers. I wanted relief. I was 33 years old and felt that I deserved some solid answers. I wasn’t told anything I didn’t already know. I have mostly waited in the system for two years, anticipating surgery. Now I’m waiting again to be called in.

Now, at 35 I feel like I have aged 30 years. My unsettled sleeps combined with my frequent headaches has sucked some life from me. Slowly but surely I’m bouncing back, perhaps due to the promise of surgery.

I know that there are people out there that are in the same boat as me, floating along waiting for someone to give us answers. There are so many websites that address ‘after it ruptures’ but very little about living with a brain aneurysm.

Here are some things that I have learned since being diagnosed that you might find helpful remember everyone’s symptoms are different:

1. Sex is okay and your head won’t pop off, even if you think it might.
2. Gag reflex. It doesn’t happen to everyone but it can be embarrassing. It’s one of my favourite symptoms gagging at inopportune moments. (I’ll let you think that one out)
3. You can get on a plane and fly. That was nice to learn AFTER I had already taken over 10 flights
4. Sports even hockey and ball hockey are okay. (My first Neurologist said that I could die in my sleep so why not play sports)…ummm…Jury is out whether or not this is actually okay but my Neurosurgeon said it was.
5. Swimming….apparently ok.
6. The shakes…sometimes you might get shaky after playing sports
7. Headaches …as if I have to write this one down but you might get frequent headaches. Sunny destinations or lying about needing to go to a sunny destination helps!
8. Irritating yourself and others – try to wallow in self-pity even though I’m demonstrating a bit of this by saying I’ve aged. The great news is, you’re alive, make sure to be thankful and look forward your future.
9. You may get really irritated when people refer to an aneurysm as "annie" like it's your friend.
10. Pain behind the eye...in my case this is a frequent symptom and I often feel a sharp pain behind my right eye (my aneurysm is behind my left eye closer to the left side of my head)
11. Sleepy...THIS IS A DAILY occurance for me. I feel tired at around 2pm every day. This might happen to you. I found that getting up from my desk and walking to well lit areas really helps. Taking a walk outside is especially helpful.
12. Drink lots of water just because