My new normal

In June of 2004, at the age of 34, my life was never truly the same. This is my story...I was driving home one day from work, with my son (who at the time was 5), and suddenly experienced a strange numbness on the entire left side of my body (a feeling like when you sit on your leg for a while and it starts to tingle and get numb), and it was heavy. I couldn't for the life of me pick up or move my left arm. Right after that happened (mind you I'm still driving and was almost home), I started to get a little dizzy, and I just started shaking my head saying to myself "wow, I need to shake this exhaustion off", but didn't know there was much more going on inside of my body. Well luckily I made it home, dragged myself into my home, laid down, but could call my mother to let her know how I was feeling so strange and that I started getting one of the worst headaches ever in my life. This headache lasted for two days, and it was blinding pain, where I could barely open my eyes to see. My husband took me to the hospital where they did an MRI of my head and gave me some meds for my head pain. Well, the neurologist called me the same night and told me they found something. I couldn't imagine what they could find in my head, and when he told me I had a large aneurysm behind my left eye, and it had a slow bleed, I dropped the phone and started to cry heaviy!!! I listed to him and was told I needed emergency surgery, open brain surgery, immediately to clip it because enough blood was leaking out into the rest of my brain. Well for the next month or so, I lived in the hospital, tests upon tests, and more IV's with contrast, MRI's, vomiting from pain meds, just a nightmare. Well I had my craniotomy in July of 2004, then the nightmare really started from that day forward. I was never so scared of an operating table until that moment, where I again cried heavy while the OR staff tried to comfort me that everything would be okay. Long story short, I had the craniotomy, lost all my hair, have the worst scar from the top of my head to my ear, scar slit in my throat, a dent on my left side of my head, oh I also lost my sight in the left eye. On top of everything, I went blind! I had to learn how to stand, walk, look down, all over again. That part of my brain was damaged and I have a lot of deficits from the aneurysms. The following year's checkup they found another one larger than the first. I was a candidate for the endovascular surgery through my thigh, in other words coiling. I went through two surgeries of the coiling as they ran out of them the first time around, and they caused me to have a little stroke while under anesthesia and had a hard time getting me to come to and was shaking. I don't remember any of this but that's what my husband told me afterward. I was told I couldn't have any more children, but that all changed after I had my daughter London in 2007 with a very high risk pregnancy. I have struggled so very hard with trying to be that normal I was before my diagnosis, and it hasn't happened yet. I have lost friends and some family, because they were unable to cope or deal with me being in this medical crisis. I have battled depression, post-traumatic stress disorder, alcoholism and just feeling awful about myself. Fortunately, I have a strong mom, husband and my children and plenty of other friends, family and people who care about me to pray for me, and for that I am truly grateful to still be here at 41 yrs. old. Support goes a long way, and after reading some of these stories, I am filled with joy and sorrow, eyes filled with tears, about the survivors and the family of the ones that passed away. We need more awareness, yes, especially in the Philadelphia and surrounding counties area. I know I am not by myself anymore. :) One more note, now I am back in school after all of these years pursuing my dream of becoming a lawyer. I take classes online at Penn State University Pre-Law Major. :)

I read your story with tears in my eyes...pat yourself on the back sweetie...You are a true survivor...

Thank~you for my dear are an inspiration...Colleen, another survivor...!

Wow…Thank you soo much Colleen. This support is so therapeutic for me right now. I am so grateful to be a part of it.

Wow. What an amazing story. We are neighbors. I am from Havertown. I also had coiling and clipping.

Double wow. you are right near me. That’s great. You had the same thing as me. I always felt completely alone, as if no one else could imagine what the nightmare was like I was going through. We definitely have to exchange numbers so that we could meet, if that is okay with you. Thanks so much for reaching out Donna. Talk with you soon.

You are definitely not alone. That would be great!

my eyes are welling up also from reading your inspirational story that is still being continued,,you are the awesome example of perseverance..i can only shake my head in awe of your determination to not let anything or anyone determine your destiny..i pray and wish only progress and contnued recovery in this new place we call are awesome and are blessed to have your family to support you,,unconditional love is awesome,,dont know where i wouldve been w/o mine,,not too many friends anymore, they seemed to be scared their gonna catch anny that is,,but my true and new life friends are great,,life is good and God is great..sending you prayers and love from michelle-n-texas...take care

Thanks for the love Michelle!

Hi Becky. Yes it does sound like a movie, and I feel like I’ve lived it. :slight_smile: Thank you for your kind words and no, it has been a strugle to stay positive seriously. I still battle depression and that is something I never was until after this crisis. I just try to encourage others and that in turn helps me to feel better about just being plain ole me! :slight_smile:

If you would like to share. You refer to yourself as “the new normal.” If I may ask, have you been left with any deficits?

Yes. More than anything, my emotional state as far as how I react to things, and my understanding of things is much slower. I suffer with post-traumatic disorder as a result of the reliving the nightmare over and over again. I was tested by a neuropsychologist and was told that I am not balanced on how I look at things, literally, like my view of objects or whatever she gave to me to test on, was one-sided, which is strange in itself. I noticed a lot of things that I do or have now, that I didn’t have before diagnosis. They told me the part of the brain behind my left eye that is damaged was the part that controls emotional reaction or something along the lines of now its like I snap, and get angry very fast or become inpatient quickly and takes a while to calm me down. Also, I don’t like loud noises, as it makes me irritated easily. My husband once said, you never used to snap or get angry like you do now, which really hurt, but it was true. At least I know what its from and somehow they don’t exactly tell you straight up how your emotional state will do a complete 360 degree and that you have to deal with that, and worse is that everyone around you has to learn to live with how you are now compared to how you were. This is a struggle for me everyday.

what is your name? i see the most important job God appointed you with as being a wonderful mommy…hehe its very frustrating because the drs seem to hear us talking about whats going on but are they really listening…im referring to my nuerologist i followed up with after the anny…kinda but really didnt seem to have a clue about what i was experiencing,i think because its all individual on how we recover and at what pace…the good thing is we survived !!! i do hope n know things will get better for you,youve gotten this far,were all walking miracles!! thank you Lord

Thanks for sharing your story. I would love to chat. You are an inspiration to all survivors.

Welcome...and, without a doubt you are an inspiration.

You posted this at the perfect moment!! I joined this group yesterday with hopes of connecting with people whose experiences are similar to mine. When I was 40 I had excriating headaches for over a week. I've been told that when I got up one morning my pain was so bad I was lucky to make it to the phone and dial zero. I cried so they traced my number, sent an ambulance, police, etc. They found me delerious on my living room rug bleeding from my left ear--and my 20 month old son exploring the house! Unfortunatley my 15 year old daughter got off her school bus at 11 AM that day, saw the chaos and me lying there with my pajama shirt wide open. It was so traumatizing her recollection might not be quite accurate but she remembers the police handing her the baby, telling her to take him up the street to be cared for and to call her father at work. She then washed the blood out of the rug. She said it was hours before anyone called to tell her how I was and many more hours before one of my siblings came to our house. Meanwhile my local hospital flew me by helicoptered to a specialty in Boston. Immediate surgery and good recovery until I had what I guess is called rebleeding two days later. My memory is significanlty impaired...but I've learned how to fake most of the time in my professional job. That's been primarily manageable--most of the time--and I know I'm fortunate--but I'm now facing the fact that I need to try to get my daugher, who's now 32, to finally realize, understand and accept my limitations. I'd appreciate any advice you folks can give!

Hi, I read your story and its truly amazing. Mine started out with a pain over my right eye which brought me to my primary care with alot of help from co-workers, cause I would have kept putting it off! My primary doc was out that day so I saw the next in line who took a look at my eye and saw that it was swollen and that the vein was bulging and discolored. She suggested that I go down to the E.R and have a cat scan, I hesitantly thought about it and tried to convince her that I would be fine. Well my co-worker was not so convinced as I was leaving the doc office and heading towards the front door to go home my co-worker showed up and escorted me directly to the E.R for the scan!!! I waited for the results and was making a few jokes about the whole ordeal when the E.R doc came in and asked me if I had any family with me…those words still echo …I looked at her and said should I?? she replied I think it would be a good idea right now as we found two aneurysms and have an ambulance out side waiting to take you into Boston, I looked at her and said how the F### did that happen…I called my son immediately and his dad and asked them to come to the hospital…the rest of my family came in soon after. I cried when I told my son I tried to be strong but lost it the moment I saw his face (he’s 21) next thing I knew I was heading into Boston via ambulance I arrived at MGH Hospital and they did there own testing which is when they discovered the third aneurysm. sizes were 2mm 8mm and 10mm. I had a visit from the surgeon Dr. Christopher Ogilvy (my superman!) we talked for a bit about everything except the aneurysms, he is the most gentle, kind, soft spoken down to earth doctor. We decided the best fix would be the clippings, however I could not have them all clipped at the same time as it was to risky. First they had to clear up the infection that I had in my blood spent a few days in the hospital went home and was cleared from that in about 10 days. This all began on 10-26-10, so I had my first surgery on 11-22-10 and spent a week in hospital ICU and progressive care, I have problems with anesthesia and became very sick and had alot of problems I went home to recover for approx 9 weeks and had the 2nd surgery on 2-2-11, spent another week in hosp, again had same issues with the recovery and had no feeling on the right side for awhile I had a great nurse assigned to me and he worked really had to get the feeling going, it was very scary for a bit I was released and came home for recovery, had speech problems and balance issues, I still go to speech/Ot/Pt therapies and have recently returned to work part time until I am able to transision over to full time. The road has been long, and friends, family and co-workers are supportive …it took alot of explaining that I am not the same person I was and they would have to get to know the new me as would I… I am struggling with alot as you know how it goes…the brain is not what it used to be and memory is an issue… I educate people every day in hopes that they will understand the importance of brain aneurysms , I miss the old me but look forward to getting to know the new me… Someone had asked me why you? and I simply stated why not me, I would never want this for my son, sisters/brothers/Dad/friends, God has given this to me and I will find a way to get through it and I did with the miracle hands of Dr. Ogilvy and his team of many, my son, my siblings, friends and strangers through the prayers of many. I commend you for pursuing your dream of becoming a lawyer, thats inspiring to all of us who are struggling with our ordeals. thanks for sharing your story which inspired me to share mine.

Hi Teresa, I can relate to the faking it.. I do it everyday when someone inquires on how I am doing! I had 2 surgeries clippings for 3 aneurysms within 4 months, spent a week each time in hospital and had side effects. I go to speech/ot/pt therapies and struggle with memory issues as well as stammering words and making up words that are not part of my conversation. I am told this will all pass maybe not the memory but the speech should and has improved I have great therapist working with me who specialize in only brain issues so they can focus alot better. I struggled alot with trying to make others understand that I am not the same person I was prior to this and they would have to get to know the new me the same way I will. I have a great support system, my family/friends have been there through the whole ordeal and have accepted that I have limitations and will struggle with remembering things, we sometimes make jokes about it to help ease the tension for me. It will take time and work to find some normalcy but with support it makes it possible. This has been a great place to check in to as everyone here is experiencing same/similar things and you realize you are not alone. so check in from time to time... I do when I think my friends/family don't understand what I am trying to say!!! take it easy and keep educating people it really does help.. I never understood anything about aneurysms and neither did my friends but now we all talk about it and they do alot of reading up on it so it helps, I read a book called I'll Carry the Fork, its great true story of a womens ordeal. you should check it out, read only a chapter at a time and try to recall it. I do it in a group and then have to answer questions and talk about it with the helps.. Go forward one step at a time.