October, Shocktober

October has always been a bitter-sweet month for me and my family.

The Sweet:

  • my nephew Ian was born (he’s now a handsome 19-year old!)
  • my step-nephew Adam was born
  • my sister Dori was born

The Bitter:

  • my Dad was diagnosed with cancer in October (lost him in 1994 – 6-months after diagnosis)
  • my Mom passed away in October last year (2014)
  • my brother-in-law Fred was killed in October
  • I suffered a ruptured brain aneurysm in October in 2006.

And I’m sure I’m leaving something out, but those are the biggies. I think that’s enough, don’t you?

October 25th is a bitter-sweet day for me as well. It was Dori’s birthday, but it was also the day I was released from the hospital after a three week stay nine years ago next week. I remember speaking to Dori on the phone after I got home and she told me my coming home was the best birthday present I could have given her. We were both crying.

How awful that six year’s later, I was crying in a London hotel room after findiing out Dori had suffered a ruptured brain aneurysm too and I never got a chance to say good-bye and let her know how much I loved, and adored her.

Brain aneurysms simply suck. They take the lives of young, old, healthy, joyful people, and devestate the lives of those they love. Granted, they don’t always kill, but they certainly can cause distruption and change the lives of all those around you forever.

October is also a stressful month for me at work. With my rupture happening in the critical last weeks of catalog production, it was left to our small crew and a poor graphic artist brought in to pick up the pieces to finish the book. They did the best they could. Three months later I returned to work part-time to find my office with calendar’s still set on October and reminders on my computer for jobs that needed to be completed…in October. A surreal experience for sure.

I am one of the lucky ones who #1, worked at a great company that allowed me the time to heal and recover and #2, I was physically able to perform my job full time after a 6-month recovery period. Soooo many are not so fortunate and the needs of survivors and their issues after a rupture are so varied, it’s difficult for employers and co-workers to truly understand the depth of recovery needed.

I suppose that’s one of the reasons I speak out about brian aneurysms and try to educate others. Although this blog as been theraputic for me personally, I have received a few comments from other survivors and those who have lost loved ones who tell me it has helped. That means more to me than any amount of money I could raise. Support is what we all need. I have survived a rupture, a coiling, a re-coiling and a stent, then a craniotomy on a 2nd un-ruptured brain aneurysm. And that first large brain aneurysm is STILL giving me issues. Look for updates on more potential “brain bling” in the New Year!

Every October I remember the day of my rupture. Every October I remember my mother’s death now. I remember my father’s diagnosis with cancer and I remember my sister’s birthday on October 25th. I still hate October, but I’m here. For whatever reason, I. AM. HERE.

 

Kick The Can

Well, after meeting with my neurosurgeon this morning we have decided to kick the can for another year on the blood remnant in my large brain aneurysm. Yes, it’s there, but it doesn’t pose any immediate risk at the moment – they think.

Options currently presented are:

  1. Do nothing and observe with periodic angiograms/MRA’s.
  2. Insert more coils (I have 20 already) into the aneurysm in hopes no more blood gets in.
  3. Block off the affected artery and see if the blood flow reverses.
  4. Place the relatively new Pipeline™ Embolization Device INSIDE the existing stent that was place in the artery in 2011.

Here is how we’re addressing each option:

Watch & Wait: Simply monitor the remnant with periodic angiograms and/or MRA’s. Then if it appears it IS growing and more blood is getting back into the aneurysm, THEN we act. It could do nothing for 10 years, or it could double in size by next year.

More Coils: I already have 20 coils and a stent that is supposed to be blocking blood getting into the brain aneurysm. Obviously, they’re not doing their job as hoped and expected.

Sacrifice the artery where the aneurysm is & reverse blood flow: This procedure will require doing a balloon occlusion test first to determine if my vascular system can handle the blood flow being shut off. IF the balloon test is successful, then I would be a candidate for having that “diseased” part of my artery completely filled with coils and the blood flow would reverse. I’m still trying to understand how it all works.

The Pipeline inserted inside existing stent: The doctor had done some research and this specific procedure has only been done ONCE, at least in the U.S. that he is aware of. Not exactly a glowing recommendation. Even one of the most renowned neurosurgeon’s in the country has shied away from doing it.

It’s pretty safe to say we have ruled out options 2 and 4. Adding more coils doesn’t seem like a more durable option at this point and even though the Pipeline has been used VERY successfully throughout the entire country, including here in Maine by my doctor, the lack of data and positive feedback on inserting one into an existing stent doesn’t bode well for its use in my specific situation. I’d rather not be a test subject unless all other options have been exhausted.

So, we’re going to do a combo of 1 and 3. Well…at least #1 at this point.

Blood Supply To The Brain

I’ll have an angiogram next Spring AND have the balloon occlusion test done at the same time. There are four main arteries supplying blood to your brain. In most people, there are links between these four arteries that allow for one of the arteries to be blocked without significantly affecting the amount of blood reaching the brain. The balloon occlusion test is usually done if there is an abnormality (in my case, an aneurysm) in one of the four main arteries. It is a way to see whether one artery can be temporarily or permanently blocked without significantly affecting the level of blood in your brain. An X-ray and a special dye are used to create images of your arteries and a small balloon, which when inflated will temporarily block your artery. Sounds scary, but if you’re on the table in the hospital already, they simply deflate the balloon if you’re unable to handle it.

The angiogram will allow us to see if the remnant has grown in a year and we’ll have the balloon test done and that will determine, should I NEED to treat the remnant, that blocking the artery and reversing the blood flow is a good option. If I’m unable to handle the test, then that’s another option off the table.

There is another potential, more invasive option, but I’m not even going to go there yet. We’ll wait a year, see if the remnant has gotten any bigger, and DOES need treatment, before we address it further.

So, I’ll continue to eat better, try to get more exercise, and reduce stress……the last one will be the hardest I think. Kick the can….

 

 

Pre-Operative Appointment

Because my original coiling was an emergency situation due to my brain aneurysm rupturing, I didn’t get to “experience” Maine Medical Center’s Pre-operative department. They may not have been that extensive back in 2006 either. But, I have to say it’s a terrific group. I didn’t really know what to expect.

I knew they were taking blood, but beyond that, I didn’t know if my Doc had ordered other tests or procedures to be run. They did draw some blood and took my vitals, the nurses gave me instructions and directions, and we had an extensive anesthesia interview. I met with four different ladies during the visit which lasted almost two hours.

Pat Richards, one of the Dr’s/nurse, even went above and beyond the call of duty and tried to get to the bottom of a lingering medication issue I haven’t been able to get straight answers on. She realized it was stressing me out and took it upon herself to find the answers for me. I really, really appreciated her doing that. She didn’t have to, but I knew she’d have the proper authority and medical explanation and terminology that I didn’t.

They were all very well-informed and presented us with several more brochures on what to expect, where to go and what to do before, during and after any surgery. In 2006, we weren’t given any such information before, during or after, so I think they’ve come a long way in educating the patients and their caregivers. There still was no info on aneurysms though, so we’re hoping down the road, we can help change that.

Even though it meant a separate trip down to Portland for us (an hour or so away), Dave and I both felt going through all of this on a day different from the surgery day was very nice. I didn’t have to deal with answering a ton of questions, giving blood and signing forms an hour before the surgery. I’ll get there, meet with the anesthesiologist and the Dr. and I’m on my way. I’ll be drugged…Dave will have the tough part of waiting.

I was very pleased with the level of care by Maine Med when I was there for 20 days back in 2006 and I continue to be impressed with their improvement and care for their patients.  Let’s hope I feel the same way on March 17th!