Hello folks, I am new here so please bare with me.
I was around 9-12 weeks pregnant when I started having really bad headaches and I told my OB immediately, and every time I saw him after that. He always just told me to drink more water because my blood pressure was normal. When I was 32 weeks, it was a Saturday, (the night of my baby shower actually.) I woke up at around 3am and started getting uncontrollably sick (worse than the "morning" sickness I had all through my pregnancy.) I must have fallen asleep at some point and when I woke I had the worst headache ever. I tried eating and just kept getting sick. It was now Sunday and my OB office was closed, so I waited until Monday morning and went and saw him first thing. I told him the headaches were at (what I thought was,) their peak, and I was so sick and unable to keep ANYTHING down. I asked about seeing a neurologist and he assured me that wasn't necessary and it would take at least 3 months (a month beyond my due date.) but that he would have his receptionist try and contact one for me if I really wanted her to. I said yes, and he said she would contact me later that day. In the meantime, knowing I can't keep anything down, he prescribed Tylenol 3s and MORE WATER!!!! So, after an hour at home and a failed attempt with the water and tylenol, I called my OB back and got his receptionist and I told her I couldn't keep the Tylenol down, and asked if I should go to the hospital. So she went and asked my OB and comes back to tell me "Yea, you could do that." OH REALLY? I CAN?! I wasn't asking permission, I was asking guidance. (Thats what I thought, not what I said.) So I took myself to one of the hospitals here where I spent 12 hours being doped up on pain meds that I told them not to give me in replace of finding out what the heck was going on, and being pumped with saline. They told me once I was able to keep down crackers for 20 minutes I could go. Well, I kept them down for 10 minutes and I guess that was good enough for them to empty the bed I was taking up because they disposed of me after that. So I went home for about 4 hours before I called my dad crying and had him take me to the other local hospital. Well, someone was on my side that day because after about 8 hours of fighting to figure out what was going on, (by now I was certain this was something more serious,) a nice doctor talked his way into getting the "ok" to give me a CT scan, as long as I asked for it/volunteered for it (since I was pregnant.) The results came back showing a large mass in my brain which they told me was a tumor and that I needed to be rushed back to the other hospital to their NICU. Once I got there they took me in for an MRI where they discovered this crazy, giant, brain aneurysm. They doctors were pretty shocked and didn't even know what to do with it. Their neurosurgeon came in and told me that he would not operate on it and that I needed to choose between University of Michigan HS, or Henry Ford Hospital, and I needed to do it fast. So as soon as they got a bed open at UofM I was rushed there.
Okay, so thats most of the story, now the rest can be summed up... I had almost 8 yards of coils put in my annie and, to this day, every day, I have the worst, most painful, headaches that have now seemed to have "dripped" down my neck and into my shoulder and I am physically sick by evening time every day. I don't know who to see, as my neurosurgeon did his part, and now I feel that I'm on my own from here. No one understand how awful I feel every day, and I feel like I am missing out so much on my beautiful, healthy little girl's life. I am being completely serious when I say just about the only things I can do are walk straight, and sit down. I can't tip my head down or back because I just freeze up in pain. It has been almost 10 months since the coiling procedure, I had one follow-up angio 2 months post-coiling where everything looked almost normal, aside from some swelling. I just don't know what to do anymore. I feel like the only reason I am here is because of my daughter (which is a dang good reason,) but it makes me feel bad as a parent because I really am just here, as I am so limited to what I can do. I am a waitress in a bar and I am trying my hardest to stick it out each shift so I can provide for her but I really feel like I am just TOO SICK to do anything!
Oh gosh, sorry for the novel, this is just the first time I've ever written it all down. Like I said, bare with me. I promise all of my posts won't be this long...
I just want to know that I am not the only person in the world going through this. I am so glad to have come across this site as I am very much looking forward to connecting with other survivors and hopefully a lot of people who can relate. Thanks for listening/reading, guys! You are all so special! [:
Hi Brittney,
Thanks for sharing your story and no apology is needed for the length. It certainly helps me to understand what a trial that you have been through.
I’d like to suggest that you go back to the neurosurgeon who helped you to get your coiling done or to the one who did your coiling and talk with him about your pain. Please be sure to talk about the pain in your neck that comes from looking down or holding your head back, then ask him for a referral to someone who can help you get better, e.g., another specialist, a physical therapist or whoever the right person is. Please ask if he’d be willing to make a personal phone call to help you since you are “barely able” to function.
While waiting for your appointment, please keep a journal to track what causes your pain, e.g., simply looking down, lifting your baby, lifting cartons at work, reaming or cutting lemons / limes, moving too quickly. Please also be sure to chart where the pain moves and the type of pain. You can find a body image, by Googling it, that you can use to help you tell your story
May God bless you with his healing and provide you with pain relief.
Carole
Thank you, Carole. Although it seems "nothing" triggers the headaches, as I often wake up with them, I will try keeping a journal to see if I can pin-point any certain activities that may increase the pain level. I am hoping to hear from my neurosurgeon in the coming week, and will hopefully have some answers or guidance as to what to do next.
Ugh, I also forgot to add that I never heard from my OB or his office after I went to the hospital. My daughter's dad called and told them that I wouldn't be seeing them anymore and that I was in the hospital with a giant brain aneurysm. Their reply was "Oh yea, we heard about that." and that was it! Can you believe it?! Talk about ruining what is supposed to be a wonderful 9 month experience!
Hi Brittney,
They were so relieved that you were okay and that God had taken care of you since they obviously missed the call. I’m glad you got a new doctor and that your daughter is well.
Carole
Britteny,
Who was your surgeon at U of M? I ask because that is where I had my surgery. I am so sorry that you are going through everything that you are. I hope the future brings you the joy that you deserve to have with a new little one. Good Luck!
Kathy
Hi Brittney...I have much more to say on this subject...but have a bit of a busy day....so I will be back later to answer....I feel for you so much...~ Cyber~thoughts ~ Colleen
The amazing Dr. Thompson! Which I am so incredibly thankful for him, I wouldn't have wanted to be in anyone else's care through such a crazy time. Who was your surgeon?? And thank you very much for your response, Kathy! I sure hope my future starts looking a little brighter one of these days!
Thanks Colleen, looking forward to your response. [:
Hi Brittany...since being coiled...I have very similar problems as you...terrible neck pain on the right side...infact, if I turn too much to that side I get dizzy and nauseated...also, my headaches sorta start from the neck and go up over the head...I have a droopy right side of my face...and sometimes I have awful pain my right arm...all of this occurred since my coiling November 30, 2010...I try to just "move on" and accept as my new normal....but some days are difficult...I have just consulted with a new Neurologist ... he is in the process of getting my records... I wanted a second set of eyes...not to mention I needed a neurologist because I live in 2 different states...anyways...he seemed not to think this is all my "new normal"...so maybe he will be able to help and I can pass on to you...I don't take my feriocet often ... however, sometimes the headaches are so bad I have no choice....he told me to watch for the meds not causing a "rebound headache"... so much to learn...in this journey...
I love alot of the information Carole wrote to you...and I am going to start a journal...because it is harder to remember things as time goes by...
You are not alone with your pain Brittany...I am blessed to have a very supportive husband...but most others are not understanding in what I am going through...so I heal and/or suffer in silence...which isn't always so good...
You have my thoughts and prayers ... Hope today is one day without a very bad headache...God Bless you and that beautiful baby girl...~ cyber~hugs your way Colleen