In 2001 I began having double vision. When I made an appointment with the eye doctor in January of 2002, she sent me for an MRI to rule out any possible problems that could have developed from my Arnold Chiari Brain surgery in 1997. Midway through the test, I was rolled out and injected with nuclear contrast (odd, I thought). After the test, I was shocked to see how many people had crowded into that tiny room where the scans are read, when there were only 3 to begin with. After the “all clear” to get dressed, I was physically escorted out of the hospital by the nurse (believe me, this was not my 1st rodeo, so I KNEW something was up). I’m on my way home and had just turned on Pitts School Road headed to my house when my cell phone rings. It’s 7:30pm, so it has to be my husband calling to see where I am, right? WRONG! It’s my eye doctor telling me to quote: “Do NOT pass Go, Do NOT collect $200, I am to GO IMMEDIATELY to Carolinas Medical Center where they have a bed waiting for me in the intensive care unit”. I thought she was joking and laughed,so I said “Ok, I knew something fishy was going on, what did they find?” she said"They found a GIANT BASILAR TIP ANEURYSM that is 8cmX9cm". Well, I almost wrecked the car when she told me that. I’m not a doctor, but I know that aneurysms aren’t good. I’m not even sure how I made it home. And as luck would have it, I was also my mother’s care giver and she wound up having to be admitted to the hospital the same night at a different hospital (my husband was very busy for a while).So, I’m in intensive care, and scheduled for an arteriorgram to see just HOW big this thing is and what the best approach is going to be to get at it. They tape my head to the table so I cant move, but the monitor is low enough that I can strain my eyes down low enough to see this monster - it covered the entire base of the back of my brain! This is NOT your typical bulge on one side of an artery or vessel: it looked like the whole vessel bulged! Then I’m sent back to ICU to lay on my back for 8 hours (not comfortable after having 4 back surgeries). This was the end of January. Surgery is scheduled for March 4, and the aneurysm had grown to 9cmx10cm. It was clipped in 3 places as close as Dr. VanderVeer could get to it, but due to the proximity, nerves,etc., a small piece remained. But, I did suffer a major stroke during the surgery. Dr. VanderVeer came out of the operating room and told my husband to go down to the chapel and start praying, that he had done everything he could, that I was in God’s hands now. My husband told him he’d been praying every second since he took me down to the operating room.
Fast forward to 2012. The remaing piece of aneurysm grew under the clipin the shape of a wine glass, so January 6,2012, Dr. Joe Bernard placed EZ Neuroform Microdelivery Stents in the shape of a Y in my artery to try preventing blood getting to the aneurysm and causing regrowth (my lifelong deathsentence). Now I have a new set of issues. I have had all of the symptoms you can possibly have; I have had all the LEAST LIKELY TO OCCUR ADVERSE symptoms you could have, and now I have developed a new set of symptoms that ARE NOT EVEN LISTED. I have had 40 seizures since January 6; I stutter, keep a constant headache, etc. My life has been a living hell since these stents were put in. I need to be in a research facility that can explain what is causing these seizures and give me back my quality of life.
395-DIARY.doc (74 KB)
hi elizabeth! so sorry to hear of this but glad u found this website, you have way too much to deal with. So i'm praying now for your seizure control, many people on here do well with the stents so i'm also praying for things to improve. These are tough long roads we are on but i believe there is always hope-hang in there better days are coming.Bless you & yours!
Hello Judith, i'm sorry you're going through this, sometimes life isn't fair.
I to have a basillar tip annie which hasto be clipped later in the year.
I already had another clipping on my right cerebral artery Dec 2011. I needed 2 clips because it was an unusual
shape. They put me on anti seizure meds for 4 months, which made me sick and i grew hair in odd places, no kidding lol. Thanks for sharing your story Judith, may God Bless you. By the way the hair has stopped growing in the odd places.
Take care of your self
Nikki xx
Hi Elizabeth...I already answered you in your Welcome post...but I must say, this bothers me....having the basilar tip artery coiled too...I have thought about you so much since reading this post last night...I will continue to keep you in my prayers...~ Colleen
please don’t forget to read the attachment: Diary.doc listed above. It is a continuation in more detail of the seizures since my surgery in January.
So sorry you are going through all this. People like you make me realize how lucky I am. My aneurysem was found by accident and I had it clipped 10 yrs. ago at Emory. I live in Anderson, Sc. I lived in Concord, NC not far from you for 10 yrs. Have you tried to contact Emory. They are a teaching hospital and in my opinion the best. Here in Anderson they did not know if my annie was operable. Dr. Dan Barrow, the chief of neurology did my surgery. It was behind my right eye. I will be glad to give you phone numbers and names that I have. I will keep you in my prayers.
Elizabeth,
I am sorry to hear about the terrible time you're having. Can I just say never forget what Dr. Morris said; you're lucky to have gotten as far as you have - not to discount what you're going through now but to point out that you've beaten much tougher odds that those you're faced with now. Just never quit trying, never accept the status quo, and you'll find the answer.
My daughter went through 15 years of terrible pain in her stomach, had her appendix out and her gall bladder, both for nothing; both as wild guesses by doctors who didn't now the answers. Finally, searching the Internet, we found a clue that it might be her pancreas. We finally found a doctor who knew what to check but didn't have the skills to fix it. We found a doctor in St. Louis who did and went their for surgery. That and some specialized medications and she's been fine for 6 years now. The point is, never give up. It's amazing just how much medical knowledge exists that many, many so called highly trained specialists know absolutely nothing about.
Don't accept the answers from the doctors. Take ownership of your own treatment and even your diagnosis. Work the doctors to get what you want out of them. Don't trust them to know it all.
Be strong. And work together. For Deb and me we repeat every day, "You and me, just the two of us." That's how we solve every problem that comes our way - including this one. You and your husband sound like you're doing the same. Keep it up.
Holy wow, this is so wrong! Read your diary, and good for you for keeping one! Maybe it’ll be helpful to your doctors. You are still here for a reason, please keep fighting! I think you are making progress with your doctors, and I am so sad for you that it is taking so long and that the medical field is so incompetent. It is so frustrating to have doctors not believe you or be capable of helping you. You are not alone in your fight for a quality life! Prayers to you, big time.
You speak truth!