Category: Brain Aneurysm

What’s Next

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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.

It’s Strange

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It’s strange…16 months after my rupture, as I’m trying to get to sleep last night, for some reason, I started to think (or perhaps it was dream) of the morning it occurred again. Not a clue why it popped into my head. Perhaps it’s because of those nagging headaches I still get at night or first thing in the morning. Mostly of which, I’m sure are sinus.

Only this time, I wasn’t thinking about what happened here at home as I usually do, or at the hospital, but at work. I don’t recall hearing how Dave let someone know that morning. I think he called in, but don’t now what time, and I couldn’t remember who he called. I have to believe it must have been shocking that morning as people learned of the seriousness of what was happening to me and especially our catalog team as we were zeroing in on finishing up the catalog files to send to them to the printer. Luckily, I had just finished up with the main layout, but I don’t recall if everyone knew that.

It was almost like I was there wandering the halls at work that morning trying to find out what was going on…perhaps I was dreaming. If I wasn’t, I’m worried. LOL

Again, I’m not sure why those thoughts came to be. Perhaps it’s due to my being worried about this year’s catalog. A lot of changes…perhaps a much larger catalog, which means a lot more of my time. A new job title, with some new responsibilities….everything is still a big question mark and I don’t like that. I like to know what’s going on so I can plan and prepare. It’s just who I am. I don’t mind change, but it’s the impending stress that I’m worried about. Stressing about stress! LOL Not a good thing and also not having someone here in Maine to operate, should I need to have something done with my coiling down the road….wow, getting WAY ahead of myself.

Anyway…for those of you reading this, even months and years after your annie and operation, you’ll always think of it and at the strangest time.

Struggling

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I am hoping that other survivors will read this post and understand what I’m going through…no one else seems to know.

Last Friday I learned that Dr. Kwan, the man whose handy-work is in my brain, whose hands God guided to very likely save my life, who is the only Dr. who does what he does in the state of Maine….no longer practices medicine. I haven’t officially been informed, but a fellow patient of Dr. Kwan’s heard it from his office.

This is very scary and concerning. If something were to happen to my coiling…I’d have to go to Boston probably. Not that I don’t think they’re qualified, but it wouldn’t be the man I trusted and looked to to help me and guide me. He’s one of my “support team” as my therapist says. Also, since I don’t know WHY he isn’t practicing medicine, I’m a little concerned about the work he did on my brain! How could I not be?

Well, he’s the third of my “support team” to leave me in the last 3/4 of a year. My OBGYN and my neurologist left the state. So now, not only do I have to find two new people to trust, but probably one of the most important people, is gone. I’m very scared.

Add to all of that… I learn on Tuesday that my job is being changed at work.

So, is it any wonder I’m stressed? Is it any wonder I’m so freaking scared about my future, not only at work, but for my health? And now I can’t even get a note from my Dr. who did the coiling to say I need to take some breaks at work. Lovely.

I’m hoping someone out there will understand. My therapist is on vacation and others just don’t seem to get it. I’m really, really, struggling with all of this and there are no easy answers.

Dr. Kwan Be Gone

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I received a disturbing email from my friend, and fellow annie survivor, Julie, about the miracle man who performed our coiling procedures.

Apparently, he is no longer at Maine Med, or moved to Mass General, or was fired…..we don’t know yet. I dread finding another Dr. I’m so tired of having to go through my history with so many doctors and I trusted Dr. Kwan very much.

I asked Julie to let me know when she found out more.