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.

Good!

Got a very good report at hospital. Dr. said things look good. I’ll still have a follow-up in his office on 4/23 but we’re cleared for the trip so I’m VERY relieved. I am sore and need to take it easy, but other than that, no complaints. What a fantastic staff in the Radiology Dept. at Maine Med. Thanks for the prayers and good wishes.

Knowledge is Power

I have developed gallstones in my gallbladder. Had my first attack a few weeks prior to the Christmas holiday. After watching my diet and making sure I didn’t over-do it with the fat content, I still had another attack. So, the decision to have my gallbladder removed was made and surgery is scheduled for the end of this month.

I had a meeting with my surgeon to discuss the particulars and give him my background. As we were sitting down with one of his associates, she informed us that her uncle had had a ruptured brain aneurysm. Luckily he survived but it gave quite a scare to them all.

He has 12 brothers and sisters and they ALL decided to have themselves checked out to see if they were at risk for aneurysms or possible HAD one. Luckily everyone was annie-free, but another brother found another medical issue that wouldn’t have been discovered had he not had the scan. Now, it’s something they can monitor and treat before it gets too bad that more serious medical procedures would be needed.

Dave and I were both THRILLED that her uncle’s entire family took it upon themselves to get checked. I’ve been unable to get my two older sisters to get scanned. Both are at high risk due to a sibling and two cousins having aneurysms and they’re also both smokers.

I know they’re scared and I know money is an issue as well. BUT the discovery of an unruptured aneurysm is much better than discovering it as it ruptures….I know….I have gone through both. The rupture did not allow me any options and could have not only caused death, but serious brain damage.

The discovery of another aneurysm DOES allow me to have the power to control it somewhat. I now know it’s there and I can work with my Dr. to monitor it and determine a course of action SHOULD it be needed. There’s alway the odds that nothing will have to be done, but at least I know it’s there and I know to get it looked at and monitor it. I don’t live my life in fear of a rupture because as we’re monitoring it, it hasn’t grown considerably and it may never grow, but at least I’M the one watching it and I’M the one who will determine, if the time comes, to have surgery to fix it.

Knowledge is power!! If you, or a loved one has had a ruptured brain aneurysm or has discovered an unruptured one, please get scanned. It could save your life.

Fear of Falling

Okay, so I haven’t been dizzy, I’m not unstable, and I’m not overly clumsy. There…that’s out of the way! No, I do not use a cane. I used to…when I was recovering from my ruptured brain aneurysm, but that was in 2006.

I’m sure any, if not all, of brain aneurysm survivors know what I’m talking about. Since my initial rupture in 2006 and with my additional procedures this past spring, I’ve always had this low-lying fear of falling and hitting my head and causing further damage to my coils, stents and unruptured aneurysm. I know it’s silly, but it’s there.

I have “caught” myself from falling on a number of occasions and even that slight catch will jar my head and I’ll feel it. I’m sure only those who are here, know what that means and feels like.

Well, last Friday morning I fell up the concrete stairs into our new office building. Not used to those stairs yet. No, I didn’t hit my head, thankfully, but this is the first time I think I’ve really fallen and didn’t have control. It DID jar my head and that scared me. I just had to sit there a bit and take stock and realize, that although I had some scrapes and had hit my shoulder badly, I was OK.

Thankfully, I fell UP the stairs because I fear going down them would have been worse. I suppose this fear will alway be there. Just another added “benefit” of the lovely aneurysms.

Oh, and thanks to being on Plavix after my stenting in March, the bruise on my arm is VERY colorful to say the least! LOL Ice is helping, buy it’s damn sore.

Still, it wasn’t my head, so I’m thankful.