Another “Head Case”… My 7mm Annie was found behind my right eye during an MRI for visual disturbances caused by a small vein occlusion inside my left eye next to the optic nerve combined with migraines being out of control. Neither conditions caused by the aneurysm according to all the doctors. My original CT scan was taken to my Neuro surgeon, Dr. Babu Welch at UT Southwestern in Dallas, TX. He recommended coiling and I was placed on his schedule for three weeks out. The day before, I arrived for my pre- op appointment which included a very high def CT with contrast. During the blood draws and visits with the anesthesiologist , my Neuro surgeon popped in. I knew that was not a good sign. He told me that he could not do the coiling after all based on my new CT, that in fact I needed a craniotomy to do the clipping. The better quality test, yes there are differences in the quality of CT equipment , showed a congenital defect in my arteries. I was missing one artery that feeds the back of the brain, that anomaly along with the shape of the Annie. Made it impossible to fix with coiling. Unfortunately , I had to wait another ten days because I had been on Plavix to prepare for coiling, now I needed to be off of all blood thinners in order to perform the craniotomy . Bummer! I was mentally prepared. Grateful that he did further testing and made a critical decision, I left for my hometown, a two hour drive away with orders to take Valium every 6 hours to relieve my high anxiety. The surgery was rescheduled and again I arrived the day before for another preop work up. Zale Lipshy Hospital is top notch and I was treated well in every department . The morning came, all went smoothly and 5 hours later , my right side craniotomy was completed and I was clipped with 2 clips. I was transferred to Neuro ICU and monitored constantly. I had blood pressure spikes during the night and the doctor ordered a med to lower it. This caused a “drift” which I had never heard of, but I couldn’t control my left leg or arm, I knew this was not good at all. Dr. Welch told me he would have to go back in by angiogram to determine if the blood flow in my artery was functioning , so in less than 24 hours from the craniotomy , I had the second procedure. Fortunately, this satisfied my Dr. And no further action was needed. Whew! Later that day, they had me walking and getting up to use the bathroom. Success! I spent 3 days in ICU and 3 more in the Neuro unit. A wonderful experience as far as being in the hospital goes. What I didn’t realize was what was to follow in my recovery. No one had warned us how debilitating this would be. I had to have 24/7 care as I could not even walk without a walker to the bathroom much less tend to my nutritional or other personal needs. Thank goodness my husband is self employed and works out of our house! Those first few weeks are somewhat of a blur, but I remember I had no idea how to use the TV remote nor could I read anything. My eyes simply would not focus and my brain couldn’t process much of anything. Like even watching some mindless movie. Everything that agitated me before was magnified now… Light, noise, smells, cross talk, temperature changes. Apparently my tailbone had suffered during my 5 hours surgery and the pain from that was worse than my head. The PT that came to the house had to teach me how to roll out of the bed and how to get up and down off of the potty… There’s nothing but time that can ease that type of injury… Oh well it kept my mind off of my head pain. My vision improved after the second week and my mobility improved some as well. I graduated to a cane from a walker. I felt lucky that my pain was fairly manageable with non narcotic meds. I slept many many hours a day and through the night as well. Sleep was my refuge! My PT reminded me that is the only time the brain rests and heals so I took advantage of blessed sleep! I had home health care 4 times a week for occupational and physical therapy. They were great and very encouraging as well. They reminded me of my progress although I felt like I wasn’t making much in the beginning. Oh yea, did I mention the crying jags? I cried at everything, happy, sad, angry, tired… Lots of tears that scared my family, but actually gave me much relief afterwards. I guess the endorphin release was a benefit. Exhaustion was the theme of everyday. Take a shower, take a nap ! Eat lunch, take a nap! Visit with a friend, take a nap. Do my therapy, take a nap! Answer a phone all , take a nap! I would lose track of the time of day on many days. My memory was shot as well. Fast forward to 4.5 months post surgery , I am still dealing with exhaustion however not as bad and can’t be upright / vertical for too long. Standing more than about 10 minutes is not doable. When pushed beyond my capabilities , I will definitely get a headache and weakness in my lower limbs. Going horizontal relieves that. Too much activity or external stimulation and the anxiety kicks in. My brain does not like chaos or overstimulation. Old aches and pains from my back and tailbone are much improved but still there. It seems as if I have any pain at all, then I have it everywhere. My vision gets blurry when on overload or when There’s too much fluorescent lighting/ grocery store or doctors office. So I wear my shades a lot. My memory is much better and I passed my cognitive test with flying colors. My tolerance for stress is diminished and that’s not all bad as I have an excuse to excuse myself from the drama. My actual migraines have gotten much better - only 4 in 4.5 months, but the pressure headaches and eye pain are common especially in the afternoons. Too much activity?? My jaw still aches from where they cut through the muscle and I have these queer stabbing lighting bolt pains in my head and behind my eyes. My scar healed nicely and the numbness there is 80% gone. I still have some tenderness near my temple and my right eye has a weird twitching pain in the lid, but no droop.
My physical therapy has been stopped because I have soft tissue pain in my hips and shoulders . I will be reevaluated in 2 weeks. I have not been released to drive although I think I would be fine. I decided to retire from my career as a Realtor as I’m not physically or mentally capable of the intense pace. I’m so happy to be alive and grateful for the incidental find. I had a maternal grandmother who died from an aneurysm , a paternal grandfather who also died from a cranial hemorrhage, and an uncle who died from an aneurysm in his abdomen . My father had a craniotomy for a brain tumor so you can see the entire family is full of head cases!! My husband gets the award for Prince of the year and I am living one day at a time, thanks to my Heavenly Father and answered prayer. I’m so glad to have this site to check in with others who have experienced this life challenge. God bless each of you. Please keep sharing your experiences both good and bad.
HI and Welcome to BAF ~
I am so glad you found our site...Your journey is so similar to many here at BAF. You are so early in the healing journey...and it takes time and rest until our body and brains heal and we know our new normal...Thank you for sharing ... You will find by your post and others some of your symptoms are similar and will improve with time ... some will now be a new part of you... Hang in there and Healing thoughts out to you ~ Colleen
Thank you for your encouragement and for being a moderator on this site. Yes, I continually remind myself that I’m early in my recovery and my husband reminds me of how far I’ve come whenever I feel frustrated or discouraged. It helps so much to hear how others have done with their procedures and during the recovery stages. There’s nothing like experience from the patient side… It takes one to know one! I appreciate what you are doing.
Ah Thank you Deborah...and don't be hard on you...continue taking care of YOU and the rest will come...
Wow, Deborah, you have had quite a journey. Recovery is such a long process and it sounds like you have come a long way. I am so glad that you shared your story, it is a story of inspiration and determination :) I worked with a lot of realtors with a business that I had (I also had to stop working) it sure is a fast paced career with a lot of hours. I think it was good for you to retire from it to allow your brain to heal. Keep taking those naps, they are the best thing for healing. Please write often and let us know how you are doing.
God Bless,
~ Carol
Deborah...a belated welcome...somehow I missed you back early in the year...too common for me to "miss"... so much so often...you've gone thru a lot...
I get so confused, when over and over, we are told symptoms are not related/caused by an aneurysm...
My worst 2nd ER I had none of the four "symptoms" ...the "worst headache of my life"...and, blanking on the other three...the BAF site lists more... 3rd ER CT noted "mild...SAH".. and it must have been as my third one of 29 days...and, I was alive and conversing w/the ER MD...
I have so many questions about the symptoms...so promoted.. and, not heard from us...
Yes, I attempted to return to real estate...and, realized I could barely return to my home w/o my GPS...
An MD signed the form for re-testing for my driver license....yes, I passed...and have a zillion questions on how an MD could note on the form "over 90 days since stroke"... when no stroke is noted on my med records...conversely, issues/events on med records were not on the form...
Happy to know that your numbness has declined...and that you have an coming f/up...
Pat
Deborah,
Thanks for the jog down memory lane as my wife went through the same issues only she spent three weeks in ICU 20 years ago. She to had to give up her career as a Human Resources Manager because she couldn't keep up the pace. I'm not sure she could do it five days a week now but atleast three days if it weren't for the migraines. Keep up the good work.
Ed
Carol, thank you for your encouraging reply and also for your part in keeping this website going. Hugs! Deb
Reading your story have me a glimpse of hope. I’ve had a lot if problems since the coiling of my 7mm aneurysm. It’s been a very hard, painful, and emotional roller coaster for me, and I’m sure all of us as well. God blessed us with another day and life to embrace, and I’m forever grateful, but the anxiety is literally killing me. I just hope I get better. It’s only been 3 months for me.
Jenny, I’m 5 mos post-op crannie. I so understand your frustration and many of us suffer from anxiety post-op. Fortunately, my doctor is treating me for the anxiety with meds. It’s worse for me when I have to go somewhere that I have no control over the environment . Lighting, temperature, smells, noises, TVs blaring and flickering, people cross talking, etc. so I try to avoid any such place. I wear sunglasses and sometimes a hat when I have to go into a store with fluorescent lighting. My husband, therapist, and friends have been such a support when I’m weary, as they remind me of how far I’ve come by telling me "remember when you couldn’t do…X? I never dreamed that the tiny things I’ve taken for granted for years, pre-cranie would be challenging. Water my plants, sort the laundry, rinse out the tub, prepare coffee, empty the trash, blow dry my hair, answer the phone, any one of these can be so overwhelming and exhausting!! It’s not just the physical actions, but engaging mentally on any level can be taxing as well. Listen to your body by all means, and respect your body by resting when u first begin to feel tired or weak, and try to figure out what you can do to avoid triggering your anxiety even if it means saying no to some people, places, or things. Protect yourself while your brain is healing. I found that pushing myself usually results in spending a day or so recuperating. Not fun… My daughter has encouraged me to journal my day as a tool to document my triumphs and disappointments and I’ve started that too. Hang in there, progress is slow. God Bless you, Deborah
Truly a wonderful and very Inspiring story Deborah and many thanks for taking the time to share with all of us...truly head cases too...and in some ways....proud and Blessed for it :))! And while you made the decision to retire from the realtor business; God has something else for you to do; once you accept this time He's Blessed you with to rest & heal. Please do keep sharing with us as your Journey thru your Healing and May God continue to shower His many Blessings upon you and your Life! /Michele
Hi Jenny,
It will be a year in Sept since the coiling of my nearly 8mm annie - I can identify with what you wrote as I really struggled for the first 3-4 mths. Can't say it is all roses since then but getting some meds from the doc has helped. The biggest thing I have come to realize and accept is that some of me just isn't the same and the part that is, is still undergoing change! I am grateful to be alive but somedays I wonder who it is I am living - if you know what I mean. Some part of me is learning about life all over again. I am here today and this is the day I am living and enjoying. If I am here tomorrow, I am going to do my best to enjoy that day too.
Chin up mate, you are not alone.
Blessings,
Madds