“You have no options, you need brain surgery, or you will be dead within 3 years.” I do not remember much of what he said after that. Thank God, my husband insisted on coming with me otherwise I would have been in real trouble. Right from his office to get blood work, chest x-ray, schedule cerebral angiogram. What? Did he really say brain surgery? Okay, that was six months ago and I can actually type this today. What happened in between then and today, or better yet, before that day is a journey.
I was having some ringing in my ears. It had been going on for a while and it really was an after-thought for me, until the vertigo started. I finally made an appointment with an ENT to figure out what little pill he could give me to make this go away. Well he told me there isn’t a little pill. You’re just getting old and need a hearing aid. WHAT!? Take a friggin hike, I’m only 53, and I’m not wearing a hearing aid. It’s bad enough my boobs and stomach have finally been introduced to each other after never having seen each other for 50 years, listen to me I AM NOT WEARING A HEARING AID.
Why is it that doctors think we don’t know our own bodies? Just because we didn’t go to medical school doesn’t mean we don’t know what doesn’t feel right. So I get up to walk out of his office, already thinking I’m going to have to live with this ringing and spinning, when I turned to him and said “I just want to make sure I understand correctly, you are not concerned at all.” After some rolling of the eyes, he said fine, he would send me for an MRI of my head just to “prove” there is nothing wrong.
Go home, make appointment, go for test. Three hours after my test the brilliant ENT calls me up stuttering. Well, there is nothing causing the ringing and spinning but if I were you, I’d call a neuro-surgeon. What did you say? (Do you get the impression that I am saying “What” quite often?) Oh, sorry, it seems you have a 9mm brain aneurysm. Okay, thanks for letting me know. Well I have to leave at seven the next morning for Manila, yes in the Philippines, so I didn’t call a neuro-surgeon at that point. I was still sure he was reading someone else’s test results.
I tiptoe around the Philippines for two weeks. Everyone I looked at I said “I have a brain aneurysm.” I think that if I say it often enough it will sound insignificant. It doesn’t. Yet I’m not really afraid yet, just confused. When I get home, I have another test done and that famously brilliant ENT calls me and tells me that it looks so much smaller on the new test so it is probably nothing but I should see a neuro-surgeon and get their confirmation.
I’m not really sure what to do so I go and talk to the nurse practitioner at work. She tells me when you need brain surgery you don’t open the phone book and look under N. You don’t? Well how do you find one? She did some research and made some calls and guess what, I had an appointment within 2 days with the best in NYC. My hero, Dr. E. Sander Connolly, Director of Neurosurgical ICU at New York Presbyterian – Columbia. Now here we are, “You have no options, you need brain surgery, or you will be dead within 3 years.” Guess I’m having brain surgery.
Okay shock is subsiding. Dr. Hero tells me that he wants me to get a cerebral angiogram done the next day. He wants to make sure he is right on what has to be done (nice, no God complex). Evidently, there are two types of procedures he can do. One (coiling) is much less invasive. He does not think that will work on me but this test will determine that. The nurse is writing up scripts for tests I have to have done. She is explaining the angiogram (I’ll be awake throughout!), and telling me the main causes for the aneurysm I have. She says “Blah, blah, blah and female sex”. “What?” “Female Sex”. I look at her as if she is crazy and say, “I’m not a Lesbian.” My husband is behind her on the floor laughing. She says “Being of the female sex!” “Well that’s not what you said”
Get the testing done, come in the next morning for the angiogram. I was awake and it was freaky cool. It was like seeing fireworks from inside your head instead of with your eyes. They cut at the femoral artery in your groin and insert a thin coil up the artery into your brain and then release these particles to bounce off your artery and take pictures to see what the situation is in there, how thick the wall of your artery is, and some other scientific stuff. I’m just lying there enjoying the fireworks.
After the test, they have to put pressure on the incision on your groin for 30 minutes (otherwise, you can bleed to death – that nurse was just a wealth of information). I’m in recovery and the surgeon himself is applying the pressure (another doctor not Dr. Hero). If anyone has any tips on how to make small talk while someone is doing this, please let me know, it may come in handy the next time. We’re talking, “So where do you work?”, ” White & Case”, “Really I know a partner there, do you know …” “Yes I know him well.” Not the small talk I had in mind while he has his hands where they are. He tells me the test went well and Dr. Hero was right, we have to do the more invasive procedure. That means a craniotomy and clipping.
They end up bringing me to a room. A very nice room I might add. I wasn’t sure why I was going to a room instead of just lying in recovery. You see, after they cut your femoral artery you have to lay flat for 6 hours. The nurse on the floor they brought me to tells me that I am in a room because I am having a “procedure” in the morning. “What procedure?”, “Brain surgery.” “No I’m not.” “Yes you are” Jeez, did you ever feel that nobody hears you? “Will you please call Dr. Hero’s office, I’m sure they checked and I’m not having any “procedure” tomorrow. “Oh yes you are” It took me 5 hours to convince them to talk to Dr. Hero. I was right, I am not having any “procedure” tomorrow.
Now my 6-hour wait is over and I can go home. As I’m leaving my husband’s cell phone rings and he hands it to me. It is my Internist returning my call. I told my husband to call him to tell him what is going on. “You’re kidding me, do you need a referral to a neurosurgeon.” “No, I found one. Dr. Hero at Columbia Presbyterian” “Well you couldn’t be in better hands. There really is nothing I can do for you but if you need a little something to take the edge off let me know.” Gotta love him!
The next day I talk to Dr. Hero and he confirms the procedure I need. He tells me the risks (stroke, heart attack, loss of brain function, blindness, death, really that’s all?). I guess it is worth it when the alternative is dying in a year. We make plans to meet again in the operating room in three weeks. Now sit and wait.
Helpful Hint Number 1: Do not look up the procedure on YouTube before having it done and if you do, DO NOT WATCH IT!
April 2, 2012 (I am writing this on October 2, my 6 month anniversary)
Okay up and ready to go, and I am still not afraid. We live over an hour away from the hospital and the surgery is schedule for 12:00 noon, I am supposed to be there at 10:00 am. Then the phone rings … Dr. Hero is in the emergency room with someone who was brought in overnight. He might have emergency surgery so stay home until we hear back. They will keep us updated. Okay. An hour later, phone rings again, still no update perhaps we should just cancel it and do it tomorrow. No, he will not be available tomorrow; you will have to wait a month. Well let me know what to do. Now my blood pressure is through the roof just waiting, not knowing. 11:00, phone rings, come on in he’s waiting for you. On our way to the hospital, I am wondering if the emergency made it, are they okay, did they die, am I taking Dr. Hero away from saving someone else?
This actually turned out pretty good considering all the anxiety. I arrive at the hospital, they take me right in because nobody else is there. Within 15 minutes I am sitting on a gurney talking to Dr. Hero. He is drawing on me and signing it, (I guess so they don’t cut where they shouldn’t). Okay it’s time; I am still not nervous or afraid. It hits me that the reason I am not afraid is total ignorance. I have no idea really of what to expect.
Do you know that they don’t wheel you into the OR anymore? I walk, with my lovely fashionista gown on, down the hall, take the elevator, and walk into the OR. I don’t know why I thought that was hysterical but it was. As I am walking away, I kiss Dennis and turn to leave wondering if I will remember what he looks like the next time I see him. Just in case, I turn and look at him again.
I hop on the table in the OR. I look around and I am the only woman in the room. They are all very busy. I am going to have four surgeons. Two in my head, one on my neck, and one on my groin. Wow, I am not asking what this is going to cost (ends up being $150,000! just in case you want to comparison shop for the going rate for brain surgery, hospital stay included.)
Hi Carol, are you okay, good, relax just a little poke. The next thing I knew it was 11:00 pm. Surgery took about 7 hours. I opened my eyes, I saw Dennis (I did not lose my eyesight), and I knew who he was (my husband and best friend). I asked him if everything went okay. He said it did. I told him to go home and get some sleep and I went back to sleep.
Well I am the proud owner of three titanium clips. Two behind my left eye on my ophthalmic artery and one on my left carotid artery in my neck. WOW!
At seven the next morning he was back at my side. It was perfect timing. Just as they were wheeling me (at least they did not make me walk this time) out of ICU, he walked back in. I am amazed at how good I feel considering what just happened. So I was right, there was nothing to be afraid of. Dr. Giganti (he is the neurosurgeon who assisted Dr. Hero) comes to see me and tells me how great everything went and they will probably be letting me go home the next day. Are you serious? Three days after brain surgery, amazing.
Wonderful friends come to see me, “you look great”, “can’t believe it”, “you look like a mummy”, all the praises and jokes. All the while I am smiling and joking, not telling anyone that my vision is getting worse with each minute.
Well I am home now. Considering everything, I am feeling pretty good. Oh, other than being afraid to go to sleep at night. It takes me so long to fall asleep. I am afraid that if I fall asleep I will die. I never said or typed that thought before. I AM AFRAID I WILL DIE. Wow that felt good to say. I think of my nephew Russell. When he was little, he was so afraid to walk over the subway grates on the sidewalk in the city. He would force himself to walk on them. He would tell me he had to “face his fear.” That is what I just did by simply typing those words. On week two, I send an email to Dr. Hero (for those who have lost track or forgotten, his name is DR. E. SANDER CONNOLLY, JR. or as my friend Jane calls him “Sander Claus”) It is about one in the morning and I tell him that there must be something wrong and go on to tell him everything I am feeling. In about 2 minutes, he replies to me, gives me his cell phone number, and tells me to call him. He says that he is out of the city at a convention but to call him and we can “talk.” Can you believe that? He is Director of Neurosurgical ICU at the best hospital in the city and he is giving me his cell phone number and telling me to call him at one in the morning. Amazing. Anyway, I tell him to go to sleep and not worry about me and if I still feel lousy tomorrow, I will call him. We have had an email relationship ever since. It is convenient when I have those silly questions. I email him all the time sometimes just to touch base with him. (I remember right before I was ready to go back to work I read some of the old email messages I had sent people and I wondered why they did not send an ambulance to my house. I made absolutely no sense at all.)
Some of the “issues” I have are strange but normal. I find that I lose time. I will be going to get up and the next thing I know I am still sitting there and 20 minutes have passed that I have no recollection of. I also know that I am repeating words. I will say something and double up some of the words. So instead of saying “Good Morning Dennis”, I say “Good Morning Morning Dennis”. I am also falling asleep for 10 minutes every 30 minutes. I get up in the morning, shower and take a nap. Have a cup of coffee, take a nap. All of this while sitting in a chair or at my desk. It just seems that if I sit still for a little while I will fall asleep.
Through all this, my eyesight is getting worse each day. Dennis notices that I keep leaving my glasses off or covering my left eye totally. So I tell him that it is getting worse and I find it is much worse when I have my glasses on because it seems to correct my right eye – as they always did – but the correction seems to emphasize how bad the vision is in my left eye.
I go in for my two-week check-up and to get the staples out of my skull (hysterical, sorry some of this is so surreal even to me who lived through it). The nurse practitioner (not the “female sex” nurse) is taking the staples out and talking to me about how I feel and she says, “So, do you hear the clicking.” Dear Lord I am not crazy! I would tell Dennis that I could hear the clips in my head clicking. He thought I was losing my mind. I am so relieved that I am not crazy. Yes it is true, the two titanium clips in my head, once in a while, knock into each other and you can hear them clicking.
Dr. Hero comes in, shows me the pictures post-surgery, and tells me how well everything went and reassures me that everything I am experiencing is perfectly normal. I have to hold the top of my head whenever I sneeze or cough. I cannot bend down at all. I cannot make any sudden changes in the position of my head. I cannot exercise at all. Try not to pull, push, lift, etc. Stay away from stairs for a while longer. He tells me I look great considering what I have been through and to take it easy. He says I cannot go back to work for 3 months. I thought you said 3 weeks during our first consult. Yes, that first consultation where I did not hear a word he said after “brain surgery.” Dennis just shakes his head. I think he likes seeing me out of control.
The good news is that I am now off the steroids!
About two weeks later, I still cannot see well. My vision is very blurry and I drive Dr. Hero crazy over this. He tells me to go to the Neuro-Ophthalmologist he recommended, Dr. Golnaz Moazami, even though he knows there is nothing she is going to do right now because it is still too soon (he is starting to get used to me). I call her and go in and she is wonderful. I cannot believe how lucky I am with the two doctors I have. I must have done something right in my life. (Do you ever wonder if your doctors compare notes on you?)
She runs a bunch of tests and looks behind my left eye and, looks again, and tells me “I cannot believe you have any vision at all with all the work they did there. You should be blind in your left eye.” I am a bit overwhelmed. She tells me I look great for someone who just had brain surgery. I start crying and ask, “Why don’t I feel great?” So she takes my hand and says, “They cut open your neck to access your left carotid, and then they cut open your skull and removed part of it. They moved your brain out of the way and had to put three clips in your head to keep you alive. Any other questions about why you don’t feel great yet?” “No, I’m good.” When I am leaving her office, she says to me “Go light a candle, you are truly blessed.”
I leave her office feeling as if it all makes sense now. I also realized that I did not get it before, because now, for the first time in the past two months, I am afraid. It hits me. I had felt such confidence in Dr. Hero I never fully realized how serious all this was and how strong the chance was that I could die.
She confirms what Dr. Hero says, that she is not doing a darn thing until at least another month because my vision is changing every single day. (It ends up being two more months.)
So, how do you make sure something never happens again if everything is “luck”?
I’m not sure where to start in writing the rest of this. It is a summer of sitting and waiting and being in awe of the healing process. I am surprised that it is taking me so long to feel back to my old self. Little did I know of the days ahead and the struggle. I was under the stupid impression that because my aneurysm did not rupture, the recovery would be a piece of cake. The brain is an amazingly complicated mechanism.
Dennis has a golf trip planned for Myrtle Beach. He is worried about leaving me home alone but I tell him to go he has been planning this trip for months. I am just sitting around doing nothing and it will actually be good for me to be on my own. So he goes. It is going well because there really is not much I can do. I am going to have “the ladies” over for lunch one day (they are bringing lunch :)) and that will be nice. The night before our luncheon I realize I need milk. Okay, what do I do… Did you ever drive a car with one hand over your bad eye? Kind of interesting.
I do get stronger every day and am totally off the meds. I even have a nice healthy sleep pattern so that is good. I walk every day for at least an hour. That is all Dr. Hero will let me do. He just tells me what I can and cannot do and I listen to him. I email him every two weeks or so to keep him updated.
My niece comes to stay with us for three weeks. Just to get her out and keep her active. I imagine she will be in the pool every day and playing with the neighbor’s daughter. Not. She basically sits in the spare bedroom on her laptop all day long. She is such a beautiful young lady. Although I do wonder when she changed. I remember the little girl I used to see all the time and the outgoing personality and energy she always had. I guess young girls grow into teenagers. I know it is more, I know she is not happy and somehow in pain emotionally, I just don’t know what to do about it. I feel helpless.
I see Dr. Hero again in July and he tells me he will sign me back to work as long as I promise not to overdo it. I promise and am thrilled to be going back to work. I have a purpose again! I go across the street from his office and see Dr. Moazami and she tells me I can go back to work also. That my vision is as good as it is going to get. She tells me that my distance vision is back to where it was post-surgery. It is my near vision that has suffered the most, now it is rare for me to read without reading glasses. I can live with that. I am ready to do this. I do a test run to the office for lunch one day, all by myself. Okay, I think I can do this, just going to move a bit slower than I usually do. The crowds bother me a bit and I am a little paranoid that someone is going to bump into me, so I will take the long way when walking to the Port Authority.
I am going to take my niece home to Connecticut and the night before she gets a call that my sister fell getting out of the shower and broke her leg and hip. Yvette and I take the long ride and go to see my sister in the hospital. The ride is difficult for me, 3 hours each way. I need to make sure I am off the road before it gets dark, that is the tough time for me to drive. Because of that I don’t get much time to see my sister, when I am leaving the hospital I look at Yvette and she is crying. I just want to scoop her up and bring her home with me again. I have this terrible habit of thinking I can make everything better for everyone else. If only I could make her smile again, if only I could make my sister better again, if only… Little did I know that she would be back the following week for the rest of the summer.
I return to work and felt great. It was nice to be back on a schedule and just not sitting at home. It was great to see everyone again and it feels good to know that they needed me. It took about 3 weeks for the stress to return. I was surprised it took that long. By the end of the summer, I was back to a terrible sleeping pattern and lay awake for hours before being able to fall asleep. I was also back to working 10-11 hour days, which probably added to the stress. Within those 3 weeks, the headaches returned with a vengeance. I was not listening to my body or brain and yet there was little I was doing about it. I so wanted to quit and get a nice little job. I wanted to open an Italian deli or a bakery. I just did not want the stress and under-appreciation any longer.
I continue to have a boss that wants to micro-manage every aspect of daily life. So I try to ignore him (very difficult). Imagine asking an Accountant to fly a plane. Yes, he is definitely smart, but knows nothing about flying a plane. For some reason he does not seem to trust me to continue to do my job even after an amazing 24-year success record of never allowing one of the largest law firms in the world to get sued. This is not something new it happened even before surgery but now, after surgery, I have no patience with him.
I am walking home in September when I hear sirens. I turn my head quickly to see which direction they are coming from, next thing I know I am laying in the middle of 42nd Street. Flat out and have no remembrance of how I got there. Luckily, two twenty-year-old young men help the 54-year-old off the street. My foot is aching and worse, my head hurts. Am I worried about either of those? No, I am embarrassed that I fell in the middle of 42nd Street and had to be helped up! My priorities are so messed up. I stay home the next day, keep my foot up, and iced.
When I go back to work, I am tired of people nagging me so I email Dr. Hero and tell him what happened. I tell him I am sure I am fine but the headaches were “different” the entire day after I fell and I just thought I should hear it from him that there is nothing to worry about. He replies within 10 minutes and tells me “Wishful thinking.” So, off I go for another brain scan. Now keep in mind it is not just getting a “brain scan” done. You have to go get blood tests for kidney function and coordinate that to have the results within 24 hours of the test, and you cannot get the test more than 2 weeks before the scan. I am juggling appointments and am nervous the day before the scan when I still do not have the blood test results (meaning I will have to start all over with the scheduling). I get the results at 3:00 in the afternoon the day before.
After the scan, I go see Dr. Hero, which ends up being just around my 6-month anniversary. I am relieved when he tells me the scan looks great. I ask him, should I still be getting headaches? Him – Normal. Me – I lose my balance when I turn my head quickly. Him – Normal, don’t turn you head quickly. Me – I still cannot exercise. Him – Good, I don’t want you to, you can walk moderately, and that’s it. Me – But I’m gaining weight because I quit smoking and am not exercising. Him – What are you eating? I tell him. Him – You are not eating enough. Husband – Do you think it is making things worse by her working 10-11 hour days? Him – Do you really have to? If you work after 3:00 in the afternoon, take a nap. Are you kidding me! I love this man. He is actually telling me not to exercise, to eat more, and to take naps at work.
I go back to work and make it a point to leave everyday at 3:30. That is still working a 9-hour day so I do not feel as if I am cheating or taking advantage at all. I just need to learn to put down the pen and walk out. Or, as my amazingly considerate boss likes to tell people, “Carol turns into a pumpkin after 3:00.” He makes it clear that he thinks I should work 11-hour days.
The headaches are still bad and the vertigo makes them worse. I start shopping for a neurologist. I had been avoiding this and only wanted to stay with Dr. Hero (why mess with perfection). A few people have convinced me that for long-term follow-up care, I need a neurologist (sigh). Funny, I feel as if I am cheating on him. I started looking at credentials and expertise in my neighborhood. I think if I have to cheat, I might as well make it convenient for me. I find a doctor and I call to arrange an appointment.
They seem very capable and understanding and are asking all the right questions. I send my medical records, etc. When they call back, they tell me that I do not need a vascular neurologist I need a neurosurgeon. I tell the dear woman, Janet, that I have a neurosurgeon. I just need a vascular neurologist for follow-up care. Janet tells me I do not need follow-up care I just need a neurosurgeon and that this was what their neurosurgeon told her. Well, I shouldn’t be so surprised that even after all I have been through, and the doctor never having met me or examined me, they still feel they know what I need better than I do. Goodbye, Dr. Hero you are stuck with me.
I think one of the most frustrating things is that I look fine. My hair totally covers the scar on my head that does not grow hair; there is no sign that says, “Be patient, I have cognitive issues,” there is no light that flashes “Constant Shooting Pain in Head.” Because of that, nobody thinks there is anything wrong with me. They do not understand the struggles. They do not know what it feels like when your brain and body shut down after working 12 hours. They think you are looking for sympathy or making excuses to go home or rest. Perhaps they are right and I am simply looking for sympathy. I don’t know. I just know that I want to feel normal again.
December 21, 2012
Not sure what is going on. I actually felt pretty good all week. The vertigo subsided. The head pain was not as bad this week. Hmmmm ….. a turning point? A Christmas gift early? I’ll take it.
April 2014 – Happy 4th Annie-versary
It is April 2nd and I am remembering Monday, April 2, 2012. What a special day. Four years ago today Dr. Sander Connolly saved my life. I remember meeting him for the first time. The first thing he said to me was “You have no other option you need brain surgery.” Then he went on to say if not, I would probably be dead in 2-3 years. So today is a celebration of life because I have passed my life expectancy.
The past 4 years have been a learning experience. Learning to love myself. Learning the order and volume of numbers. Learning what my limitations are and sometimes having to change my usual order to accommodate the new order. Learning and understanding what Brain Flooding is and what a large place in my life it plays. Learning to ask for help when I need it. Learning to do it myself as often as possible. Learning that at 57 years old (or 4 years old depending on how you look at it) life is just beginning and not ending.
I know I cannot take care of or please everyone else and that is okay. Sometimes you have to say “no” to people you love because it is not good for you. Sometimes it means you are not going to hang out with the gang or go to parties, bars, etc. because the overstimulation will put you in bed for a week. It is just something you deal with because nobody knows what it is like and they do not know that anything is wrong because you look fine on the outside. Sometimes it means letting them think whatever they want about you because, you really do not care what they think. It actually means feeling sorry for “small” people who have to talk about others or bring someone else down because it makes them feel better about themselves.
Yet still, after dealing with this I was asked to be a moderator for a global brain aneurysm group. Wow! My dear Sander Connolly is on the Board! It feels good to help others deal with their experiences. Sometimes that is by sharing experiences, or connecting them to resources or simply giving them a shoulder to lean on and an ear that will listen. Sometimes it means offering to sit in Tampa General Hospital while a total stranger gets her first angiogram for her newly diagnosed aneurysm. I remember 4 years ago when they helped me with my recovery. It feels good to pay it forward there, for others.
So on this 4th anniversary of my brain surgery, I am the luckiest person in the world and I remind myself of that every day. I do have to learn not to care about the extra 20 pounds. I have a husband who still takes care of me in those little ways that he thinks I do not notice; who loves me and loves exploring our new city with me. I work with great people who have become such dear friends. On this my 4th anni-versary Dennis and I will go out for a celebratory dinner. We realize we are both so extremely lucky and I AM ALIVE!