Devastating Couple of Weeks

A few days after Christmas, we received news that Dave’s niece, Kim, had died of a massive ruptured brain aneurysm. It was bad enough we lost her at the all-too young age of 32, but once we found out the cause of death, it threw a level of other issues at me because I too, had suffered a ruptured aneurysm.

Why did mine rupture the way it did and why didn’t I die? Why? Why? Why? All questions one can’t answer. I have my own “whys”, her mother has her own “whys” as do many other people. Like most undetected annies, Kim didn’t know she had it and as far as everyone knew, she was very healthy and living an active, if not stressful, life at the time of her death.

There are so many people who survive ruptures, so many who do not and even the consistent threads that DO link some of these people together such as smokers, hereditary, age, women….aren’t consistent enough for people to instantly know they have an annie. Some smokers who have a history of annies in their families, never get aneurysms, while other families have multiple deaths and ruptures in their families.

It was just the irony of Kim having one when she was not a blood relative of mine and didn’t display any of the so-called “symptoms” that may, or may not, occur from an annie. She did suffer from migraines, but so do millions of other people and they do not have aneurysms, so one can’t say that was a “sign” for sure. My mother had migraines, both my sisters do, my aunt and myself. I’ve had two first cousins with annies and myself.  I wish my sisters and niece would get CTA’s. At least if you KNOW you have one, you have a fighting chance of surviving. If you don’t know you have one, and it ruptures, chances of survival decrease the older you get and obviously, the severity of the rupture, location and size of the aneurysm. So many factors
come in to play and it’s different for every person.

I started to look at it like suffering with an annie was something special and because the brain is effected, it’s just that much more serious than anyone else’s maladies, but truthfully, it’s no different than suffering a catastrophic heart attack or stroke, or being hit by a car. You may, or may not survive. Many are lucky, many are not and trying to figure out the “whys” can eat you alive.

As Dave says…”It is what it is.” and often times we just have to accept what “is” and move on no matter how terribly difficult it can be without those we love beside us.

Also today, I get news that my cousin Jennifer, who had been fighting a brain tumor since 1999 is close to death’s door. How painful it has been to read her brother’s posts on The Caring Bridge website about her battle and how terrible is must be for them to watch her deteriorate and not be able to help her in anyway. I know how helpless one can feel after watching my own father fade away from us for months. Jennifer has been so strong with her battle and always gave others strength. I pray God gives her entire family strength and comfort now as we wait for news.

2-Year Angiogram Results

I had my 2-year angiogram following procedure yesterday. I have to admit I was nervous because Dr. Kwan wasn’t doing the procedure, but I was soon put at ease when I found out the Dr. that WAS doing my angio, Dr. Thomas Dykes, was the Dr. who did my first angio back on Oct. 5th, 2006 to confirm it was an annie and a rupture prior to my coiling. I felt better after I found that out.

After what occurred during my last angiogram I made sure they did not attempt to use the angio seal/plug this time. They all concurred they would not do the seal. I was glad! So what if I had to lay around for four hours, I wouldn’t have to endure the pain again.

I was exceptionally dopey after this angio though. Perhaps it was just because I was just so tired after a long, long week getting final files to the printer for the catalog. Regardless, all I wanted to do was close my eyes.

Dave, as usual, was my angel and was by my side almost the entire time. I wasn’t nearly as peppy this time, but he helped feed me again, which is tough to do when you have to lay almost flat and he took me out for an M&M McFlurry at McDonalds afterwards, which hit the spot.

The great news is that about two hours after the procedure, Dr. Dykes came and informed me the nothing had changes since the last angiogram and everything looked good!! Just what I wanted to hear. So, now I know all those little annoying headaches I continue to get are just that….annoying headaches due to not eating well, not drinking enough fluids and just overworking my poor little brain.

Even two years later, I know I’m still healing. I’m the only one who knows what I’m still having difficulty with and what I’ve gotten back to full-strength. And, yes, there are still some things.

But this was great news and I’m thrilled. And, as usual, the staff at Maine Medical Center in Portland were fantastic.

I’m still pretty sore in the groin area today, but I knew it was going to be that way and I’m taking care of myself. Taking care of myself…that’s what it’s all about now.

What’s Next

I’ve been too busy and tired to post again, but better late than never if anyone out there is still reading this.

I had my appointment with Dr. D’Angelo a couple of weeks ago. I had all my questions ready to go and written down and I even tasked Dave with taking notes because my hand writing is so horrible, I didn’t want to miss anything.

We no sooner go into the appointment, when the Dr. got a phone call and cut our appointment very short. He was on-call and there was an emergency, so I certainly don’t expect him to drop everything for me and I completely understand that, but after driving all the way down there, I did feel a tad slighted. Not his fault, but still very disappointing. I wasn’t able to ask any of my questions.

He did shed a little light on where Dr. Kwan is and that they’re searching for a replacement, but that going to Boston to have any serious procedure isn’t a bad thing. He claimed he DID remember me, but I doubt it. LOL He’s seen so many people since then I highly doubt he’d remember little ‘ol me.

I took all of my Angiogram, MRI and CT scans on disk with me, but he said he needed to see more recent images, so I was told he wanted to me to have an MRA. Which is an MRI, but with contrast. His office called a week later and this coming Tuesday I’ll be going down to Maine Med for my MRA.

However, when pre-registration and radiology called tonight, they said it was for an MRI, so I need to call the Dr’s office back tomorrow to make sure everyone is on the same page on what it supposed to be done.

I’m obviously hoping everything looks good, but I’m hoping I get another opportunity to speak to Dr. D’Angelo and ask those questions I’ve been wanting answers to. With no one treating me locally anymore for my neuro issues, I’m feeling a tad lost and abandoned. I had high hopes for this one appointment with him, only to be in his office less than 10 minutes. Again…I know that wasn’t his fault.

As the 2nd anniversary of my annie creeps up, again, I’m recalling this time of year in 2006 still. I wonder how many years this will go on? It’s odd.

I’m feeling relatively good, so I’m having good thoughts about the MRA/MRI. And I’m hoping they’ll let me know the results sooner rather than later so I don’t have to wait it out.

Follow Up

Well, obviously, since I haven’t posted in awhile, that either means I’m really ill and can’t do it, or I’m feeling pretty darn good and don’t have much to report. I’m happy to say, it’s the latter. Until now.

I have finally started to make some arrangements for my 2-year follow-up. Since Dr. Kwan has left the area, and I’ve only heard rumors about a recent hiring in MA, I contacted his old office and was told he had referred me to Dr. D’Angelo, the neurosurgeon who attended to me first at Maine Medical in Portland. In fact, I saw Dr. D’Angelo more than I did Dr. Kwan…he was also the one who gave me my “walking papers” when I was finally released. He sure made me smile THAT day!

Anyway, I have just an appointment to see Dr. D’Angelo in Scarborough, Maine on Sept. 8th where he will then determine the next course of action. Either an MRI or an angiogram and then to determine WHERE all this will be done. I’m hoping it can all be done here in Maine, but we’ll see.

Neurosurgery and Spine Associates

Of course the last couple of weeks I’ve been having headaches, but I think it’s more due to starting to work harder on the catalog and the natural stress that puts on my brain. It’s hard work to think! LOL I find my eyes are very tired at the end of the day…but I have to drive that 30 miles home, so no resting until then. I need to make myself get up from my desk and rest my eyes and brain for 15 minutes in the morning and afternoon. I remember I did that a lot last year….I guess I still need to do it.

I’m already nervous about ANY testing being done, but it probably won’t come for a couple of months yet. I’m glad I’m going to meet with Dr. D’Angelo though. He’s highly regarded in the area and I have great trust in him. He was brutally honest to me in the hospital, and I appreciated that. He didn’t sugar coat the seriousness of my situation and how he really didn’t want to operate on that area of the brain and was very hopeful that Dr. Kwan would come in and do the coiling….I am too.

Things are moving ahead, so I’m glad something has been taken care of. I’m still not happy about no interventional radiologist in Maine though.