Hello everyone! I am SO glad I found this forum. The closest support group to me is like a 2hr drive so I was relieved to find this option.
I am a school counselor and jump rope enthusiast. I coach a competitive jump rope team (the Jumping Jax: http://jumprope.i8.com) and teach jump rope classes 3 days a week.
I had a crainotomy Nov 2 of 2010 to clip an aneurysm on my carotid artery at UIC in Chicago by Dr Charbel. Surgery went well and am blessed the aneurysm was found a fixed before it ruptured. My perseverance and diligence played a huge role as I was told for 2 months I was just having migraines despite having no history of headaches. Finally after insisting something was wrong in my brain a CTA was ordered and the aneurysm was found. My nuerologist here in town advised me "off the record" to not let anyone in our area touch my brain and after reading others stories I'm glad I followed his advice. I am fortunate to not have severe memory loss, vision loss or any major deficits following surgery.
About a month after surgery I resumed my career as a jump roper and caused leakage from my brain sack. I was rushed back up to Chicago as my symptoms indicated I had a stroke. Luckily, it was just from my brain fluid leaking and they said it would resolve itself if I "took it easy." My question was- and still to this day is- what exactly does that mean? lol I'm pretty sure my idea of that and theirs are two very different things!!! :) After not jumping for another couple weeks I began jumping and working (as a counselor 3 days a week). At this time I'm jumping 3 hrs a night Wed, Fri and Sundays... one hour a day Tues and Thurs on top of working 8hr days Tues, Wed, n Thurs....
I do have periodic headaches, random communication erros (saying or typing the wrong words n such) as well as random weird behaviors (putting ice in a candle instead of my drink lol). About a month ago (3 months following surgery) I started having occasional nighttime headaches. They wake me in the middle of the night 1-6am and are so awfully painful. I lay there thinking... "I need to get up to take something... but I can't move." Last night I searched the net and found that nighttime headaches could be caused my arteries enlarging or bleeding on the surface of the brain. Is anyone else suffering from these? I'm not sure if this is "normal" in the recovery process... or this is something caused by my level of activity and "over doing it." I emailed my surgeon and have not had a response back. My neurologist here in town said he's not a surgeon and cannot advise me. I haven't gone in to get a scan, CTA or angio as our deductible has reset and don't want to waste money for something that's really not a big deal.
What do you think? Hearing the headaches, fatigue, short-term memory and communications were experienced by many of you in the healing process really put me as ease.
Thanks all!
Kristin Creager (feel free to add me on FB!)
P.s. Does anyone hate Angios as much as me??!?!?! I'm not looking forward to my re-checks every 3-5yrs :(
I'm going to be very blunt. Just my personal opinion but I think you have and are over doing it. I had a craniotomy Feb 3rd and if my surgeon thought for a moment that I was doing what you were doing a month after surgery he would kick my butt! As a matter of fact, I think he would kick my butt now and it's been 9 weeks.
As for 'normal', I think we all have different normals lol but I use the wrong words at times in a sentence, cant remember where I've put things, will ask a few times what day is it today, things like that and even now, my balance can be a bit off at times.
I dont have the night time headaches but I do get the odd headache during the day. Fatigue is going to be with you for a long time. My surgeon just told me last week , it will take a good year to recover from this. Try to remember Kristin, (I'll repeat what he said to me last week) " Tina, you have been through major, major , MAJOR brain surgery and this is going to take time. Listen to your body, don't push it. We've come too far together to mess it up now".
Good luck but I would slow down a bit if it were me. :-) xxx
Haha I've heard that many times before. Unfortunately I can't just slow down. My surgeon told me I can do anything I want- even jump out of a plane! I've had random headaches during the day since surgery, but these nighttime headaches concern me. I try to listen to my body (took off today to lay around all day and my head still hurts and now my principal is upset with me.) I don't think others realize how slow recovery can be after this. My principal asked me 1.5months after surgery when I would start making up the days I missed by working 4 days a week. Right now it's all I can do to come in for 3 and this is months after her statement. :( Thanks for your reply!
Kristin...what you write here is the lack of knowledge of brain aneurysms / treatment / recovery.
I have concern for many who attmetpt to return to work too soon...and, they're not the ones jumping or in other physical work... it is jsut related to the mental exhaustion...and, the safety of commuting... to and from.
I find headaches like you were a warning to me...I had the worse headahce of my life and told the same, migraine and my persistence found a 9mm Basilar tip annie...so that being said...call your Doctors...and let them know what is happening to you...keep us posted...Gotcha in my Thoughts...Colleen
Thanks for your concern. I am really surprised you have not heard of Dr Charbel. He is the head of the neurosurgery team at UIC. He has won many awards such as Inventor of the Year, America's Top Surgeron by Consumers' Research Council of America, Best Doctor in America, President of the Neurological Society in 2006 as well as pioneering many medical devices and techniques for the treatment of aneurysms.
Anyways..... I am mentally fine. No mental exhaustion nor trouble driving walking or any kind of physical activity. I am actually jumping better (higher scores) than I was prior to surgery. I was told to "take it easy" and be off work for 6-8 weeks to which I did. At my check up everyone was astounded by my quick recovery and how "normal" I appear to be. lol The end statement there is slightly unsettling to me... it's like... really? how abnormal was I in the first place? lol :) I was told I am doing great and to keep taking it easy in addition to a year being about typical recovery time. I do have a couple things going for me.... I am young... active... and very much in shape. My determination got me out of the hospital in 3 days and back home.
I did call Dr Charbel and am waiting on a return call. I am REALLY praying I avoid an office visit or hospital stay. Our d educable has reset and we cannot afford another $6,000 out of pocket.
So I take it no-one else has ever had nighttime headaches?
Would you mind providing the type of clip that was used? I assume you had a crainitomy with a bone flap closure system using a titanium screw hinge or there are also ceramic hinges. Do you know which one was used? There are cases where these types of headaches are caused by local environmental conditions such as computer monitors and printers or electrical lines. I know it sounds weird but it does occur in some patients. Another cause of these early morning headaches can be caused by the adrenal system. Human adrenal glands begin a "wake-up" process around 4:00 am.
My wife feels for you as she has these same symptoms since her clipping in '94. We're all the wiser not since we know that 90% of her headaches are caused by electrical devices. Hope this information helps you.
Pat, oh how I know it. This man called me from his HOME after a full day at the hospital to touch base with me. I had had some concerning activitiy, turns out ITA’s. His nurse had already spoke to him and then spoke to me. He still insisted on calling me himself. Simply A M A Z I N G. The hug last week from him felt sooo goood! I love him and hold him in such high regard. Dr.Spears saved my life and he continues to be there for me always. When I left my 8 week follow up, he said “you have any problems, any questions, you know how to reach me”. I can’t tell you how I feel about this man.
He told you that you could jump out of a plane??? HOLY CRAMOLY. Is it possible he was just sort of joking around with you?
Kristin, you say "I can't just slow down". There's do and don't do but no can't. I just hope and pray that you wont have any serious set backs. Please reconsider what you are trying to do. You need a good medical support team and just my humble opinon, you dont have that. Your principal needs to receive a medical slip and maybe some education on just what went on.
Hi Kristen, I had an aneurysm coiled in 2003. I returned to work about 14 months later and had a light set of symptoms. Six months into my work I felt the urge to workout fully again being told that I can go back to doing anything. Long story short, I had two additional coilings in 2006. One in Jan, with 29 coils added to the original 18. And in Aug 2006 an additional 31 coils. My head is packed. I am adjusting to being able to do mild walks and taking each day graciously. I had a very well trained doctor off the record admit that the brain is very complex and that only I know how much can be tolerated. I don’t baby myself but with much reluctance and now patience have learned to enjoy life with a light workout and rest. I can only suggest that everybody is different in the way their brain reacts to the trauma it’s suffered. The real problem is having no visual sight of the damage. No one can see a brain aneurysm, now a cast, brace, or any other obvious sign, gives foundation to life changing adjustments. Everyday in my head is different. I can only describe it like weather. Some days it stormy all day, and other days it starts smooth, ends up stormy or vice verse. You may in time heal completely, I wish you the best.
It's great you can share this info...Were your added coils implanted into the initial aneurysm or did you have another aneurysm? Either way, you are a platinum man...
Thank you for sharing your calm and stormy days...variations of it seem so common to most all of us...
The one thing not readily available to us is which lobes/nerves are supplied by the artery which hosts our aneurysm(s)... which suggests it could help us to understand our symptoms...
Wow. Good for you!! That's great that you had such a quick recovery. Obviously yes, a coiling is a very different surgery versus a craniotomy. Good to know you didn't have any set backs from your treatment.
It begs the question though...why such different opinions from surgeons, the professionals? Again, I can see that statement coming out of a coiling if all went well but sorry not a craniotomy.
No sure of the type of clip off hand… have that tucked away in the filing cabinet at the time being. They did use a bone flap and I’m pretty sure they used titanium screws as I can feel the buggers when I touch my forehead!
Thanks :) I did get a call back. Was asked if I'm drinking enough fluids and was told to take it easy over the weekend and call back Monday to check in. Sunday had an awful headache and couldn't barely move. Haven't jumped since Wed of last week... so sad :( it kills me to go to teach class and just stand/sit there!
Anyways... Friday I was at a workshop on brains, bonds and trauma. Was in tears after 5 minutes because my short term memory was so bad I couldn't take adequate notes as I'm used to. I have my masters and school is my thing. Was SO frustrating to struggle in something I used to be good at. Then Sat morning I flipped out and threw a laundry basket. I was so mad about something so stupid- again not me. :( *sigh* I wish I could hit the fast forward button!
I do say "can't slow down." :) I have so many kids depending on me and I don't want to let them down.
What do you mean by serious setbacks? I actually do have a good medical support team if I actually chose to call them. I just don't because I don't want to end up back in the hospital or with a few more thousand dollars in medical bills for them to tell me "slow down."
Thanks for your concern Tina. I appreciate your replies
I did call and am waiting for my surgeon to call me back. Praying they say it’s nothing to be concerned about!