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.
Now, it is no secret to those who know me, that my handwriting never was pristine, but after my annie rupturing and coiling, it is worse. Taking a quick note requires a team of archeological scientists to come in and make sense of it. I have to be very deliberate if I expect anyone else to read it. However, it WAS even worse at one point!
Dave’s sister had given me a note pad in the hospital, along with some other goodies, and while cleaning up some papers around my desk today, I just discovered some notes I had taken while in the hospital. Wow, was my handwriting REALLY bad at that time. I’m amazed I can even read them.
I obviously had intentions of recording the events in a blog or journal of some sorts in the future as I discovered one notation entitled:
”You know you’re in the hospital when…:”
There were also other scribblings. I think I started to write some things down after seeing the Dr’s because they’d always come in so early in the morning, I’d never remember what they said by the end of the day. I was also writing down terms to look up online later to make sure I knew what people were talking about.
And I recall the occupational therapist coming in and asking me to write some things and that was rough to remember how to write that first time. I had to write my address…I think. I can’t quite recall.
Anyway..my handwriting still isn’t good, but at least it’s better than it was when I was in the hospital. LOL
I was doing a search last night on platinum coils and ran across this graphic on the BBCNews.com website from 2005.
I wish I had found this graphic a year ago when I felt like an idiot for asking Dr. Kwan how he got to the left side of my brain from my right groin. LOL A pretty amazing procedure and this is a very simple explanation.
Then it made me think of just how lucky I was that this massive annie didn’t rupture more than it did. How it didn’t rupture during some of the most strenuous and stressed other periods of my life prior to last Oct. is beyond me.
I had my six-month angiogram checkup of my aneurysm yesterday. It was an early morning, having to leave at 5:15 to be there at 7:00 in the morning.
I didn’t sleep a wink the night before. Partly due to being nervous, the noisy wind outside, and possibly eating that orange and power bar at 10! I couldn’t eat anything after midnight, so I tried to eat something later that night.
It was odd being back at Maine Medical again. Some memories were brought back. Some pleasant, some not so much, but at least I was arriving under my own power this time!
Around 7:45 or so, I was wheeled into the operating room. I have been here before, but didn’t really remember it. I was barely awake when I had arrived back in Oct, so I asked a bunch of questions and watched as the team was getting ready to perform the procedure. Fascinating.
They went into the same artery in the groin where my previous angio-gram and the coiling was done. It was quite painful when the initial shots and insertions were made, but after that I never felt the catheter only the inks being injected and the heat and other sensations they created.
One time they had informed me I might see lightening over my left eye. Sure enough…there is was!! A small sprinkling of brightly colored lightening in my left eyeball! Odd and strangely neat all at the same time. I kept my eyes closed the entire time. I was under mild sedation and pain killers so I could respond to them to hold my breath, etc.
Everything went fine until they tried to insert an angioseal into the puncture wound. It didn’t work, but by God, Dr. Kwan TRIED! As a result, he had to pull it back out and put a regular plug in which meant more pain and more pushing. It was not pleasant. He said next time he would NOT use the angioseal. Thank you!! LOL
Dr. Kwan was able to read the xrays during the procedure and tell me right there on the table that everything looked great. The fear I had was that the aneurysm would have enlarged in some fashion or the coils would start to pack down leaving a space between the coils and the outside of the annie OR that he’d find another annie or something else of interest. He found none of that thank God. And it was great to finally hear
that and to know that my sinus issues were just that…sinus and not brain related.
I have read on some occasions that people had head and pain issues misdiagnosed as sinus when they were really annies, so I was really, really nervous a new annie had popped up somewhere. Nope, just my blasted sinus.
Because Dr. Kwan could not use the angioseal, I had to spend four hours in recovery after the operation. The seal would have cut it down to two.
The main issues were to keep my leg straight and flat and do not lift my head. They only raised it about 30º and that was it. My sinus were bothering me too, so I had pain from the puncture and pain from my head. I took the opportunity to lay there and rest….like I had a choice anyway!
Dave stayed with me and cut up a sandwich for me to eat and helped me drink some liquids so I wouldn’t choke on them which would have been bad. He has been so fantastic the past six months. I’m very lucky and I know it.
Once the four hours were up, the nurse got me right up on my feet to test the vertical waters. I was quite wobbly, but not too bad. Sitting down was painful. Anytime I creased that area of the groin was painful. Sitting and moving my leg was pretty painful. Still is today, but not as bad.
I got dressed and we were home by 3:00. I called my family back in NY to give them the good news, but couldn’t sleep yet. I hopped on the computer, ate something then started to fade around 8:30 after putting ice on my puncture site and taking a vicadin. I slept like a baby.
The last six months have been a a kind of uneasy anticipation of this six-month test. It was so hard to know if every headache, numb finger, eye ache, neck ache, and onset of fatigue was still related to the original annie, or if something new had popped up. This was a huge relief and now I feel I can get on with my life again. A huge, huge relief.
It still doesn’t mean something down the road could potentially develop, because I AM at risk, but for this annie, at this moment…it’s good.
As my friend Julie from the message boards reminded me in a poem she and I both posted separately:
“…I am no longer waiting for
The other shoe to drop;
It already did, and I survived…”
Thanks to reasons I don’t know or understand, and God guiding Dr. Kwan’s careful hand, I survived.
Heidi's Brain Blog 