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.

Aneurysms Be Damned….

Aneurysms be damned…we’re taking that trip to the UK finally!

Although Dave and I had planned on waiting a year after our wedding to take our official honeymoon to the UK, we hadn’t planned on my large aneurysm raising it’s ugly head, the discovery or a new aneurysm and the addition of more coils and a stent to my brain. Those little item resulted in a longer delay for the honeymoon and we had to put it off for another year.

Well, the “one-of-those-days” moments is about to arrive and we’re really going to do it. Tickets, hotels, guides and flights are all booked and ready to go. We’re as ready as two people can possibly be for an overseas trip. Hell, we’ve had long enough to plan for the darn thing!

And even though I know it won’t happen, I can’t help but think all of that metal in my head will set off the metal detectors going through airport security. LOL I know it won’t, but I’ll still think about it for sure.

I love that we’re taking this trip with so much love, support, blessings and prayers from our families, friends, and co-workers. I am truly thankful for it all and for the Dr’s who have provided their expertise and skill to prolong my life and give me another chance to LIVE! So many aneurysm survivors are not able to enjoy living their lives to the fullest, but the majority of us DO try and this is a big step for me. I haven’t flown since 2005 when I flew to visit my friend Gwen in Canada. Little did I know during that trip that I had a 1/2″ diameter aneurysm waiting to blow.

Now I DO know what’s going on and I’ve been given the “Green Light” to travel by my Dr. So…LETS GO TO LONDON BABY!