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31 October 2006
I came upon this page while searching for info on ruptured aneurysyms and seizures. I have been reading through stories all morning and crying. These are all amazing stories and I'm so happy to have found this. Thank you all for sharing.
My mom had 2 aneurysms rupture in Aug of 2005. She made an amazing recovery, especially considering that doctors first thought she would not survive and then thought she would never walk again. She is doing both of those and doing them quite well!
For the first time ever, she has started having seizures. Yesterday she had 3 and is still in the hospital today, waiting on them to try and figure out what's going on. THey have done a CT scan and now a MRI and say they see nothing unusual. I think they are leaning toward sending her home with anti-seizure meds. I can't possibly imagine how they could do this without figuring out what caused them. She has been recovering without seizures for over a year now and in one day she has 3 and they're just going to send her home!? I am beyond frustrated, but feel helpless as I am in CA and she is in Ohio.
I thought I would share some of our (my mom and I) story: Somehow, we both managed to have aneurysms rupture/leak on the same exact day. On Aug 19 of 2005 I got a call that my mom had a stroke and things looked very bad. My uncle said "get on the first plane here" (I live in CA and my mom in Ohio). I was at home alone with my 2 year old son (he was napping) and I was 34 weeks pregnant. I called my husband at work and said get here now. I made more calls to try and gather more information on the situation, all the time sitting in my chair in the living room.
I got up to try and calm down and get some water. I knew as soon as I tried to stand that I was going to faint and I did. I woke up what must have been anywhere from 1 to 10 mins later (we can't quite figure it out.) I couldn't stand and had a raging headache and I knew something was wrong. I crawled to the phone and called 911. I was dizzy, feeling sick and could not stand. I was so worried that my son would wake up, start calling for me (he sleeps on our second story) and I wouldn't be able to go to him. I crawled to the front door to unlock it for the paramedics, I somehow got our dog (who is very wary of strangers) to go upstairs and locked the baby gate at the bottom of the stairs so she couldn't get out and then laid in a lump on the floor until they arrived.
My husband called right before the paradmedics arrived and I told him what happend to me. Luckily he was on already on his way home after I called him about my mom. THe paramedics showed up, the dog started barking, my son started screaming for me, but the men couldn't go get him because I had put the dog upstairs and she was definietly guarding the house! Luckily my husband (Matt) showed up only a few minutes after this happened. He came in to me, I sent him to get our son and contain the dog.
The paramedics checked me out (as I was puking all over the place) and said my vitals were all normal and that they weren't required to take me to the hospital, unless I wanted to go. I said yes - take me now. Things got fuzzy after that. He kept asking me my name, birthday, address - things like that. I answered them perfectly the first time, but 5 mins later he asked me and I couldn't answer. I knew that I knew them, but coulnd't come up with the info. That's when they loaded me up and off we went to the hospital.
After confusion and tests and them trying to send me home once (until I tried to stand and threw up everywhere) they finally did a spinal tap and discovered blood. Then they did an MRI. The next morning my OB came to see me and they thought they saw a spot on the MRI that could be a rupture. My OB started calling the few doctors in our area (I live in Fresno CA - small town) to try and get someone to take a look at the MRI. No doctor would help. Once doctor even told her not to put his name anywhere on my chart. THankfully, she kept going and finally got University of CA at San Francisco to take it. Next thing I know I'm on a helicopter to UCSF.
They told us it was just precationary since I was 34 weeks pregnant. They really had us conviced it was no big deal. No one had confirmed the aneurysm, although we knew it was a possibility. I think neither one of us believed it because while all of this was going on with me, we had found out my mom had 2 ruptured aneurysms. There was no way in the world I could have the same thing happen - and on the same day no less. We just didn't believe it. Matt and I joked that maybe we'd stay an extra day or two in SF to shop. Matt literally packed about 2 changes of clothing for that purpose.
After arriving at UCSF, it was discovered that I had two aneurysms that were leaking - luckily they had not burst. It was decided that clipping was the way to go with me, since I was only 33. After many more tests and procedures and getting bumped from the surgery list multiple times, I finally had my surgery. With a team of surgeons standing by, ready to perform a C-section if needed, they went in and fixed me all up. I came out of it just fine and with a baby still in my belly.
I went home about 2 weeks later and had my baby about 3 weeks after that. She was small, but in perfect health and still is to this day. Things were hard on my son too, but we worked through that and he seems to be fine with things. Although we still talk about it sometimes to see if he has any new thoughts on the subject.
My mom had a much longer, harder recovery than I. She was doing great until yesterday until the seizures. I hope we can get this figured out for her. She has had a long hard road, with more to go.
Thank you for reading my "novel". I've never typed it all out before in such detail. And still, over a year after it happened, the tears are flowing and I'm not quite sure why. Things turned out so great for all of us, I know it could have been much, much worse.
Update: 17 November 2006
First, I wanted to thank everyone for all of the wonderful emails I got after our story was posted. Everyone is so nice and so supportive. I'm trying to read everyone's story and reply back, but it will take a while to get done. I'm so glad I found this group!
My mom's seizures seem to be under control. They have her on some anti seizure med, but I can't recall the name. She seems to have some pretty significant memory loss, but the neurologist says this is normal and she should gain back what she's lost rather quickly. I think mostly, it's frustrating to her because it's like she's gone back to where she was about 6 months ago. I worry mostly about her state of mind - it has to be so hard on her. The dr. said he thinks the seizures are due to scar tissue. I called my neurosurgeon's office because no one ever said anythig to me about seizures. THey said although it's possible, it's not likely in my case. I guess mine was not as traumatic since they just leaked and didn't burst. But, I wasn't real clear on if the scar tissue that they say causes seizures is due to the rupture or due to the "head surgery" (vs. coiling).
Mom has an EEG (I think this is right) hooked up to her all day last week and she should get the results (by phone) in about 3 weeks, although the neurologist can't meet with her about it until Jan 2007! I'm not sure exactly what they were looking for, but maybe it will tell them something. They did MRIs and CT scans when she was in the hospital and the dr. says there isn't another aneurysm, so that's very good news. I'm hoping my mom will check out this site and post her story soon, so I will keep from posting all of the details of her amazing story, even though many of you have asked about it. Maybe soon, she will feel like sharing.
Seems like this last thing with my mom pushed some buttons for me. All I could do was cry the week this happened with my mom. Just at the drop of a hat I would cry. I would cry at work, in the shower . . . you get the picture. Then I realized things hadn't seemed very normal for me lately. I was aggravated all the time - I would snap at my kids, at my husband, at work. It just wasn't me. Whatever I was doing at the moment couldn't keep my attention. If I was with the kids, I was thinking about all of the stuff we have to do around the house. If I was at work, all I could think is that I should be with the kids. Then when I was with the kids, I was aggravated with them because I couldn't get work done around the house!
I finally went to see my dr. and said, somethings not right. We talked and she thinks I've been barely operating since all the commotion last year. The head surgery (as we call it), the Csection, the new baby, the 2 year old, going back to work, the issues I had at work when I returned (another long story). She thinks this last thing with my mom just pushed me over the edge a bit - even though - as things go, what my mom went through last week was not at all devastating news, more of just a set back.
She immediately told me to start taking SAMe. It's some natually occuring substance that we all make in our bodies, and it's supposed to help with everything from depression to arthritis. I was wondering if anyone else has experience with this. I'd love to hear about it if you did. I've read it can be taken alone or in combination with an anti-depressant. So, for now, I'm taking that and going to see a counselor to get some things off my chest and see if we can get me back on even ground. I'm tired of being cranky!
Thank you all so much for your thoughts and best wishes to you all!
Update 23 September 2008
It has been so long since my last update - I don't know where the time has gone. In some ways it seems like all of this happened a few weeks ago and in some cases it seems like decades.
In my last update, we were just beginning to deal with my mom's development of seizures. To this day, we don't know exactly why she began having them, but she is on meds that seem to be controlling them. She's on dilantin and another anti-seizure med that escapes me right now. As far as I know, she hasn't had a seizure in a while, but I know she hates taking all of her meds because of the side effects - which I can't say that I blame her for. Since I am in CA and she is in Ohio, I can't be sure she's taking her meds all of the time, but she says she is.
I think I will have to post her story for her one day soon. I was hoping she might want to tackle it herself, but I don't think she is interested in writing/typing that much. On average she is doing OK. She's left with a completely different life to live now. She does live on her own and can pretty much take care of herself. She can't drive due to no peripheral vision on either side, but she has gotten very good at using the public transit system that she gets for a discounted rate since she's considered disabled (there have to be some positives - yes?) and they will even drive her out of town for doctor appointments for a very small fee.
She is in the process of using a local agency that is trying to help her find a job she can actually perform. She has deficits as a result of the aneurysm bursting, but she (and her family as well) is anxious to get out of the house and if she can earn a little money in the process, then even better. She visits with friends and family when she can, but that still leaves her with a LOT of time to kill and she ends up mostly running errands and watching TV. I really think getting her out of the house would do a world of good, but we just want to get her in the right job. Not one where she'll end up frustrated and unhappy. It's taking time, but it seems like this group is really trying to help her the right way. They are sending her to doctors for evaluations (eyes, hearing, physical, thinking) before they will try to place her in any job. They are also very mindful that whatever job she may get cannot be at all similar to what she did pre-aneurysm or she would lose benefits. So, I will cross my fingers and hope it works out.
On my side of things - life is moving on - quickly! My daughter that I was pregnant with when my 2 aneurysms leaked just turned 3 years old. My son, who was 2 years old and stuck in his crib upstairs when I fainted in my living room, is now 5 and in Kindergarten. The love of my life - yes, my husband :) and I are competing in our first sprint (read beginner) triathlon in 2 weeks. We are excited and have been training for a while now, but since I'm not a very good swimmer, my main focus is not to become a shark snack. The bike and run seem quite do-able after that.
In my last update I was having some emotional issues and had begun to take SAMe. I did this for a while and it did help to get me back to an even keel - although it was hard on my stomach and expensive since insurance does not cover it. I was on it for a few months and then slowly stopped taking it over about a month.
To be honest, I still have good and bad days, but I don't know that it's anything abnormal or necessarily due to the aneurysm experience. It may just be due to life in general - too much to do and too little time/rest. I seem to get stressed and anxious easily, but am really working to address that. To some extent, I think it's just habit - it was just the way things were when I was growing up and a response that I learned. Now I have to learn some better responses to the normal daily grind & stresses of life.
I don't know that what I feel is any different than any family with 2 working parents, 2 young children, money worries, dealing with extended family and also trying to find time to actually have a conversation with my husband. I've been tempted to talk to my dr. again, but I don't even want to go down the route of medication if I don't have to. There are so many side effects to them. I think I just need to get better at rolling with the punches and slow down a bit. Pre-kids and hubby, I was very much a get things done, check them off the list kind of girl and that's not so easy to do these days. I'm still learning not to work myself into a frenzy if everything on the list doesn't get checked off in one week. I am also working on making smaller lists! And I'm thinking I should check into meditation - one more thing to add to my to do list :) Ah - it's a vicious circle!
I do try to keep in mind how lucky I am. We all know there are many heart breaking stories on this site and I cry almost every time I read them. I was so lucky and feel like I SHOULD be the happiest-go lucky person on the face of the earth. I escaped 2 aneurysm's leaking when I was very pregnant with only some emotional ups and downs. My story and my mom's story could have turned out so much worse. Although all of that is very true, it doesn't seem to offset the daily stresses of life somehow.
I was back in the hospital a couple of weeks ago and was amazed at the response I had to it. I was there for a planned, outpatient procedure called laparoscopy. My OB just needed to go in and look around at some of my inside parts and with this surgery they just put 3 tiny slits in your abdomen and the dr. can fit in a camera (so she can see what's in there) and also some tools if she needs to do anything. It's pretty standard stuff and I was in and back home in about 6 hours. But when they walked me from the waiting room, to the "prep" area or whatever they called it, it's like I was transported back in time. I started crying and they took my blood pressure and it was very high. My husband was doing his best to calm me, but it just brought out this reaction that I couldn't contain and I didn't understand where it came from. It wasn't good, but I was able to calm down after a short time and it was all OK after that.
Since I was going under for the procedure, there were about 5 different people that had to ask about my surgery history. Let's just say I now know what surgery can really raise eyebrows! The term craniotomy really gets you some attention in small town Clovis Community Hospital. It actually ended up helping I think, to be able to talk about it some and these people were interested. Not like someone off the street who has no idea what you went through - these people understood.
On a lighter note - send good thoughts our way on October 5. My husband and I and 7 other of our friends/family are participating in our first sprint triathlon. We all decided we don't get nearly enough exercise and needed a serious goal to inspire us a bit. It also helps that we're all hovering above and below 40 years and feel the need to fend off some aging. So, we will be swimming (hopefully faster than the sharks!), biking and running as fast as our old legs will take us!
Wow - sorry for the book. I'll try to update more than every 2 years from now on. I have to try and find a picture to send in. It's amazing how many pictures we have, but none of them have all 4 of us together, since one of us is always working the camera. I should be able to at least find one of me and the kids, so you all can see my adorable rugrats (no - I'm not biased at all!)
out to you all. What a great family we have!My warmest thoughts and well wishes go
Discussion, comments, or questions: Stephanie Mastriano
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