Difficult Post

Over the years since my ruptured brain aneurysm, it has been very easy for me to simply copy & paste links to other people’s aneurysm stories of hope, struggle and survival. However, this particular entry is one of the most difficult I have posted because it affects me and my family personally.

Two weeks ago, on Mother’s Day, my older sister Dori suffered a serious ruptured brain aneurysm. Damage was done to her brain stem and a secondary part of the rupture created another hemorhage deeper into her brain tissue. If her husband had not been home and close to where she collapsed, she may not have even made it to the hospital. But after a trip to a local hospital, then a helicopter flight to Buffalo General, she is hanging on, but barely. She’s been treated by some of the top Dr.’s in the country including Dr. Snyder and Dr. Sorkin.

They coiled the 6 mm aneurysm with 3 coils, but because the secondary hemorrhage created more blood, a clot had also formed and they had to remove part of her skull to remove the clot from her brain. She has been in a coma since the surgery, non-responsive, on a breathing ventilator and still suffering vasospams and seizures. The heavy sedation she has been under due to the seizures, has prevented them from getting a complete and thorough neurological exam to determine the amount of damage and her chances of any kind of a recovery.

It has been heartbreaking and frustrating. And at times I almost wish I were not as well versed in aneurysm issues as I am because I know the seriousness of the situation as a result. Injury to the brain stem is so severe because it is similar to the motherboard of a computer being disrupted or destroyed. The brain stem, controls consciousness, respiratory (breathing), heart rate, ocular (eye) movement, dilation and contracture of the pupils in response to light/darkness, swallowing and facial movement and all neurological signaling from the brain to various muscle groups. The brain stem literally controls all that we do and how we process the things that we do each day. Right now, Dori isn’t doing most of these things on her own.

She has also developed pneumonia and has been dealing with a fever although we’re hoping that has gone away now. How much can one person be dumped on? Lighten up God, would you?

Dori was with me from day one of my rupture in 2006. She immediately flew out to Maine to be with me and Dave during my surgery. As I have stated repeatedly, I’m one of those very lucky ones who survived her rupture with no further deficits. Dori was there after my surgery as I was wheeled out of the recovery room to ICU and was complaining about how thirsty I was and the tape residue on my mouth from the breathing tube. She comforted Dave through it all. They cried together and they laughed together when I started joking straight out of surgery.

She also flew into Maine to be with me last year when I had my recoiling of my larger aneurysm done. I now have 20 coils in that one aneurysm and another smaller aneurysm was discovered along the way that we’re watching. Dori was able to meet my new doctor, Dr. Ecker, who ironically trained at Buffalo General and most of the Dr’s and a lot of nurses we spoke to there remembered him.

I wasn’t able to greet Dori and be there for her when she went into surgery. Unfortunately, at the time, Dave and I were in England. My family struggled with telling me, but finally decided they had to. We cut our trip a week short and flew home from England as soon as we could and joined my family at Dori’s beside. Truly devastating to see her in the condition I was presented with. Her long, thick hair was gone, shaved to do the clot removal. Her head bandaged and wired, along with a drain. The breathing tube and ventilator doing the work for her. Every type of monitor attached to her that could be. Heartbreaking…..heartbreaking. Why couldn’t she have come through her rupture in the shape I did? Several reasons I believe.#1, God just had other plans I suppose, but #2, I firmly believe Dori was having symptoms of the aneurysm weeks (perhaps even a month) before her rupture. She’s been having back issues since last November and had back surgery scheduled. She was in horrible pain for months and was unable to work. During that time, however, she suffered what she thought was a migraine. My family is susceptible to migraines and both my sisters and I, as well as my mom and some cousins all have suffered them in some form or another. This time, however, Dori knew it was different. Then she had boughts of nausea that went on for a few more weeks. Her husband took her to the ER, then took her to an acute care center. The acute care center was more of a clinic without full medical facilities of an emergency room situation. They were there because they were offered quicker service. Frankly, I’d rather have more completed care, but that was their decision.

Apparently the last time she was taken to the acute care Ccnter, she DID ask to have a CT scan. Either they refused, or they didn’t have the facilities. And even after telling them her sister and cousin had had brain aneurysms….they didn’t even insist she go to an ER. Very, very, very frustrating to find that out because her rupture MAY have been prevented. More heartbreak. And her husband told me after her back surgery she told him she just didn’t feel right. God, she should have been looked at.

I’ve been trying to get both of my sisters to get scanned for aneurysms since my ruptured. They’re both at high risk simply by being smokers and having a 1st degree relative with aneurysms (I now have two) and two 1st cousins who have had aneurysms. If discovered, an aneurysm can be treated before it ruptures preventing rupture, stroke and death. I hate, HATE that it takes something like to this open people’s eyes, but I guess it has. We need to get my other sister scanned, and soon.

I am hoping and praying Dori will show signs of something soon. She has a beautiful 15-year old son and husband who need her and God knows I need her. She’s the caregiver for our family…she helps everyone get through tough times like this….we need her here to help us help her. If God has plans for her, I wish he’d let us know.

Christmas Memory

As I was finishing up wrapping Christmas gifts for Dave and I today, I was reminded of five years ago and how frustrating Christmas was for me. Yes, I was thankful I was alive, but I was frustrated because I couldn’t enjoy Christmas like I previously had.

Just wrapping gifts was exhausting and I most certainly wouldn’t have been able to wrap gifts all afternoon like I did today. A simple task for most, but at that time, two months after my rupture, it was daunting…and frustrating.

I look back now on my blog entry from that year (2006), and have to smile because I’ve come so far since that day and I am so lucky to be here wrapping gifts at all.

For those of you still struggling, don’t give up. It WILL get better. Baby steps. Just take it day by day and celebrate the small victories…like getting ONE gift wrapped. You’re doing great!

Fatigue

Even though what I went through almost two weeks ago wasn’t as traumatic as my rupture in 2006, it was still stressful on my brain. Coiling was attempted and then a stent was employed, so some things out of the norm still occurred.

Even though I know fatigue is a major after-effect of any brain issue, it can still be very frustrating and cause one to feel out of sorts and un-effective when all you want to do is sleep. Reading that it’s OK to feel fatigue and that it’s normal again has helped. It’s getting everyone else to understand that fatigue is a part of this that’s difficult some times.

People at work have been great and Dave is always understanding, but those who are outside of the realm may not get it and explaining it in depth just isn’t something I like to do with every person. Oh, well….it is what it is!!

And I’ll probably JUST get to feeling back to normal and I’ll get to do it all over again for the coiling at the end of April. Goody!

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!