The TBI Chatroom
To My Dear Friends:
First, I would like to thank all of you for all of your thoughts and prayers. The fact that I am able to send all of you this letter is proof that every bit helped! I am doing extremely well and the doctors expect me to fully recover. I'm supposed to take it easy for the next month and then after that, I'll have no restrictions on what I'm allowed to do.
I know I gave everyone a big scare there (and I promise not to do it again!!) The day that it happened it was pretty frightening. I was hanging out at my sister's house, watching Oprah, talking on the phone with a friend and munching on Doritos, when all of a sudden I had gotten this indescribable pain in my head. I've had really bad headaches before, but never one like this, so I knew right away that there was definitely something seriously wrong. So I called my sister at work and told her that I didn't feel "right," that I had a horrible pain in my head and that I was having trouble breathing-- so my sister said that she was coming home to get me. When I had gotten off the phone with her, the pain only worsened and that's when I started to get scared, because I didn't know what was wrong with me. All I said was, "God, please don't let me die this way and have my sister come in and find me."
My sister had called me again before she left work to see how I was doing. As the pain continued to worsen, something told me to put ice on my head, so I somehow made my way to the kitchen to get an ice pack. I put it on my head hoping it would relieve some of the pain. At this time I had also unlocked the door, so whoever was coming for me would be able to get in, just in case I had passed out from the pain. By this time I'm drenched in sweat and I was hyper-ventilating because the pain was so bad. I was about to call 911, when I heard sirens (I didn't know it at the time, but my sister had called 911 before she left work) and all I said was, "God please let that be for me." Then the next moment, the fire department was pounding on the door and as I'm yelling for them to come in, they're yelling back that the door was locked. So as I get up to open the door, my stomach begins to cramp and I start throwing up . . . what else?? DORITOS!! (yummy!!) Then I open the door, and as the paramedic asks me, "Are you okay Miss?" I throw up at his feet - I'm sure he loved me for that one!!
So they begin to check my vital signs as they're trying to get out of me what had happened. They kept trying to make me sit up straight, but I couldn't keep my head up because of the pain. They then whisked me away on a stretcher and in the ambulance they gave me oxygen, which helped me because I was concentrating on breathing in the oxygen, instead of the pain in my head. As soon as they begin to roll me into the emergency room, I tell the paramedic that I'm about to get "sick" again and she tells me "Don't worry, honey," as I throw up again. Thanks goodness they had covered me with a blanket, because I would have been wearing it instead, and I'm sure the doctors would have fought over which one was going to get to treat me!
Then while I was in the ER, they had some rude doctor checking me out - at this point they had given me absolutely nothing for the pain and then on top of it , I had this obnoxious doctor yelling at me, "It'd be a lot easier if you'd cooperate!", because I couldn't keep my eyes open while he was flashing a bright light in my eyes to check my pupils! Finally they gave me some good old Demerol for the pain. Then they had done an angiogram and a cat scan on me. The ER nurse, Nancy, was wonderful - she was a friend of my sister's friend, Jodi, and she took very good care of me. She also got rid of the obnoxious doctor and found another one to take care of me. She had stayed with me while they did the cat scan on me. I was so drowsy from the Demerol that when the doctor was doing the cat scan, I kept squirming around and all you'd hear was Nancy saying, "Lisa, don't move sweetie," or "Lisa, try to lie still, honey."
All I remember after that was the doctor coming up to me and whispering to me, "Lisa, we've found a bit of an aneurysm . . ." and I just remember just giving him a small sigh. Anyone that I had ever known to have an aneurysm had died, but since I had been given Demerol, a small sigh was the only reaction I could give the doctor. I didn't find out until later, what another idiot doctor had told my sister about my condition. I had been diagnosed with a "cerebral hemorrhage", meaning that bleeding and swelling had already started in my brain, even before I arrived at the hospital and that's when the idiot doctor told my sister and her friend Jodi, that I had subdural bleeding (which is the fastest bleeding that can occur) and that I wasn't going to make it through the night, and that my sister should call whoever she needed to call in the family. Thank goodness Jodi was with my sister, because my sister probably would have killed herself right on the spot.
When the doctor told her that, she was hysterical and anything that was said to her after that went in one ear and out the other. While Jodi was trying to find out from the idiot, whether or not I had any permanent damage done, everything out of his mouth was negative. He told them, "Your sister is lucky . . . only 50% make it to surgery, but only 25% make it out and all of them come out with some sort of brain damage, paralysis, memory loss, or a combination of the three." What a comforting doctor he was, huh?!
I remember my sister coming in to see me and I kept apologizing to her. She then had the horrible task of calling my parents and youngest sister in New York, to let them know what had happened and that I needed to have surgery. My sister told my Dad everything and told him to tell my Mom about everything except the surgery, because my sister knew that my Mom would absolutely freak. Then they told my youngest sister, because they wanted to prepare her for what she'd be walking into when she got to Florida. The poor girl was so upset that all she could say was, "Not my little Lisa . . . she's too tiny!
My family could not get a flight out until the next morning. On the flight down, my Mom said she had this strange feeling that my Dad wasn't telling her something. Then she said she had closed her eyes and she saw an image of me lying in an hospital bed with bandages wrapped around my head. That's when she knew what it was that my Dad wasn't telling her and she of course, freaked. I went into surgery at 10:00 am and my family did not arrive to the hospital until about 10:30 am. I was kind of glad that I went in before my Mom got there because she would have been hysterical and the doctors had already told my sister that if my Mom was going to upset me, that she would not be allowed to see me before I went into surgery, because they did not want my blood pressure to go up.
Oddly enough, I was extremely calm as I was being wheeled off to the operating room. So calm in fact, that the nurse kept asking me if I was okay. I think I was so calm mainly because I knew deep down inside that I was going to come out of it okay. The neurosurgeons had answered all of my questions about the surgery and the risks involved. They told me the biggest risk would be a stroke, but that the surgery was obviously necessary. I also found out later, that the reason they did not perform the surgery on me the night I came into the hospital was because the aneurysm was still "pulsating" and if they had tried to operate under this condition, it would have increased my chances of having a stroke during surgery. I also found out that I actually had two aneurysms, one right next to the other and that one had began to leak blood into my system, which caused the pain in my head and the vomiting.
The surgery lasted about 4 hours and the surgeons had told my family that I wouldn't be "aware or coherent" for at least three days . . . but I woke up only an hour after the surgery. My right eye had been swollen shut (because it was the right side of my brain they had operated on). My family had a really hard time seeing me like that . . . especially my youngest sister Robyn. My Mom had told me that when Robyn first came in to see me, the first thing she asked me was if I remembered when her birthday was (and yes, I did remember). I knew who she was and could talk to her, but then when she saw my right eye just begin to roll to the back of my head (because I had no control over it), she freaked out and was hysterical when she left my room. She had the hardest time with what happened to me- there were some days when she couldn't come to see me in the hospital and when she did, she would never stay alone with me. But she did stay strong for me and kept me in good spirits (she's the comedian in our family). Everyone in my family stayed strong for me - they would never cry in front of me, especially since the nurses wouldn't allow them in my room if they were crying, because I wasn't allowed to be upset by anyone or anything.
But I remember when my Dad had come into my hospital room, the first thing he asked me was, "Who was the 32nd President of the United States?" and when I asked him why he was asking me such a ridiculous question, he told me that when I awoke from surgery, the neurosurgeons began asking me a barrage of questions to see how coherent I was and that I was spitting answers out like nothing - and that was one of the questions they had asked me. I told my Dad that I didn't even remember anyone asking me ANY questions, let alone being able to tell them who the 32nd President of the United States was, so I have absolutely NO IDEA what I told them!! (By the way, I found out that the 32nd President was Franklin Delanor Roosevelt, from a presidential placemat I came across in Wal-Mart...(smile)).
Everyone in the hospital who had taken care of me at some point from the time I first arrived at the hospital, would come to visit me on a regular basis. No one could believe how coherent I was or how well I was doing so soon after my surgery. Everyone in the hospital knew who I was and would constantly ask me if I realized how lucky I was (and I do) and I was nicknamed "The Miracle Kid" by the hospital staff. Everyone in the hospital took such great care of me while I was there - it was amazing. I was probably also lucky that this happened to me while I was in Florida and not New York. In New York they would have asked, "Miss, is this injury a result of a gunshot wound or a stabbing? . . . No?. . . Okay, you're number 609 on the list . . . Please have a seat!" So I know I'm very lucky in that respect as well.
The same doctor who had told my sister, Desiree, that I would not make it through the night was also the same one who had told me that I would be spending anywhere from one to three months in the hospital-- and I actually spent only 18 days in the hospital. This was all attributed to the wonderful, caring and talented team of neurosurgeons: Matthew R. Moore, M.D, F. Gary Gieseke, M.D. - F.A.C.S., and John A. Coats, M.D., as well as the beloved nursing staff at Northwest Medical Center (now Columbia Medical Center) in Margate, Florida. And if, Heaven forbid, I ever had to have another operation, I would fly back to Florida to see Dr. Moore and his associates first, before I let any other surgerical team touch me-- that's how much faith I have in them.
After my surgery, my family and I constantly thanked Dr. Moore and his associates. My Mom told him, "May God always bless your hands..." but Dr. Moore refused to take any credit for my successful surgery. He told my mom, "The fact that you're daughter was so young and healthy were major factors-- but to tell you the truth, not only was someone upstairs was watching out for your daughter, but she must have had the strongest will to live, because in the condition she was in when she arrived to the hospital, she should not be here.
And though my hospital stay was a very short period of time considering what I went through, it took its toll on me mentally and obviously, physically. While in I.C.U, I was awaken anywhere from every 1/2 hour to an hour to take my medication (about 6 different kinds), to have my temperature and blood pressure taken and to have my IV checked or my blood taken. I had so many wires and tubes coming out of it me, you would have thought I was some kind of science experiment!! I would have a hard time falling asleep because all of the tubes and wires really limited my range of motion. So all of the nurses would feel so badly about waking me up and were always apologizing to me. They couldn't believe how I never complained about anything and I told them it was because I knew that they were only doing their jobs.
I was completely overwhelmed though, by all of the love and concern all of you have shown for me. My hospital room was COMPLETELY covered with cards on the wall and filled with flowers, stuffed animals and other gifts all of you had sent to me. Everyone who had walked into my hospital room commented on the fact that I must have a lot of people who really love and care for me (and that I would need a U-HAUL to move out when I was discharged from the hospital) and they were absolutely right. I even had nurses who wanted to kidnap my stuffed animals because they thought they were the cutest things they had ever seen!! But I am very lucky to have family and friends such as yourselves, because everything you have done for me definitely added to my unusually quick recovery and I cannot thank you all enough.
I have to follow up with the neurologist and neurosurgeons for the next few months and then they said that in a year, they will do another cat scan to see how the surgery is holding up. Before I was released from the hospital, the doctors thought they might have to put me on anti-seizure medication when I left the hospital, but since I did not have any seizures while in the hospital, they found it unnecessary to do so. I now have a total of 8 weeks of recovery (which includes the 3 weeks I was in the hospital). So it'll be about another 4 weeks or so before I can go back to my "normal routine" . . . but the doctors expect me to fully recover with no complications.
The doctors said I was smart for putting the ice on my head, because it ended up preventing the aneurysm from killing me right on the spot-- but my sister Desiree was the one who saved my life because she was smart enough to call 911 before she had left work. I'm just thankful to the Man Above that I was able to walk out of the hospital on my own, with no permanent reminder, such as brain damage or paralysis, to speak of, other than a scar which is about 2 inches back from my hairline and goes from about the middle of my head to my right ear. But my hair has already grown back about an inch and a half and is beginning to go through the scar which is healing quite nicely too!
I'm planning on going back to school to get a degree in Radio and TV Broadcasting. The program is usually a year and a half, but a lot of my credits from Manhattan College will be transferred, so it will only take me 9 months to get my degree. Then I'll decided whether or not I like Florida enough to stay here, or head back to New York. I was supposed to start classes on June 24th, 1996, but because of my "little setback" I will have to wait until September 1996.
I hope all is going well with all of you. Please keep in touch -- (and I hope the next time we hear from one another it is under BETTER circumstances!). Thank you again for all of your concern, well wishes and prayers and for thinking of me! Take care.
Update 12 Jun 1998
I just celebrated my "2nd birthday" on June 12, 1998. Though I was very lucky with regards to the fact that I was able to walk out of the hospital on my own, without any brain damage, paralysis, etc... It is still something that I deal with mentally.
At times I suffer from post-traumatic stress, but I am determined to work through it, and just thank God everyday for giving me another day of life ... and certain things that seemed "oh, so important" before my brush with death, are not even on my list of priorities anymore... and I make a conscious effort not to take anything nor anyone for granted.
When I was in the hospital, naturally I began thinking, "What if this happens again?" But it was at that moment that I knew whether I was going to let myself "live" or let the experience affect my life in a way, that I would "die" as a person. When my parents thanked the doctor after my surgery he told them three things: 1) Someone upstairs was watching your daughter, 2) Because of her age and she was "healthy" helped her get through the surgery and, 3) Your daughter must have had a strong will to live."
Before I went into surgery, my sister was the only family member there at the time, and when they were wheeling me into to surgery I told my sister that I wasn't going to "leave her." And I held true to my word... I would never break a promise to my sister :)
During my surgery, I did not see the "light at the end of the tunnel" or anything like that...everyone asked me after my surgery whether or not I had. But since I didn't, it would be safe to say that my number wasn't close to being "up"... and all of my family and friends are sure that I have a special purpose on this earth :)
But there are two things that did happen: The first: As my parents were driving me to the airport to visit my sister Desiree in Florida (where I ended up having my surgery 2 weeks later), I remembered (in hindsight), that while my mom was sitting in the passenger's seat, I was hugging her and playing with her hair the whole way to the airport, as I was sitting in the backseat behind her. After I was discharged from the hospital, I told my mom this, and we both believe that maybe subconsciously, I knew that something was going to happen to me-- maybe it was some sort of premonition, and that I was subconsciously saying, "good-bye" to her.
The second thing was that after my surgery, while I was lying in my hospital bed, my mom told me that my sister Desiree, was lying in bed with me, and as she was hugging me, she was crying hysterically, saying, "God, I want my sister back! Please let me have my sister back!" Desiree, later told my mom that after that, she saw three little angels flying over me while I was lying in my hospital bed (likened to the angels Hope, Faith and Charity)... which I would deem as a wonderful sign :)
And after reading some of the other narratives, I feel kind of guilty for having such a wonderful recovery from such a traumatic experience. I've read through some of the stories, and it's tough to respond to them... especially if someone is having a tough recovery, or have lost a loved one in this way. What do you say, when you have been so fortunate?
I have done some research on aneurysms myself, and it does unnerve me a bit to hear about those who have developed epilepsy, had multiple aneurysms, etc... But you know what? That's something I have NO control over, so why worry about it?
But being one of the more fortunate ones does come with a great deal of responsibility... I feel soooooooooooooooo guilty when I have bad days, because I always feel like I should be grateful for being given a second chance-- it could have turned out very differently... my family and friends could have been mourning the 2nd anniversary of my death, instead of my 2nd Birthday... but regardless, I am human still, and am allowed to have bad days just like everyone else... and I now know that it does not mean I am taking anything for granted :) I wouldn't change a thing :)
But despite all of the "responsibility" I would have wanted to survive, even knowing what I know now... my family and friends prayed to God not to take me away from them... they didn't care if they had to wipe my behind for the rest of our lives, as long as they were able to look at me and touch me, they didn't care... they just wanted to have their daughter, sister, niece, cousin, etc... with them.
I am just happy to still be here with my family and friends and to be able to make new friends. So, if you would like to correspond about a similar experience, I welcome any and all mail. Best wishes to all.
Update 5 Mar 1999
I had to go to the doctor because I was starting to have really bad headaches on a consistent basis for the last couple of weeks. I went to see a neurologist in Huntington, NY - who was recommended to me by my boyfriend's sister, (who is a doctor herself) -- only to get one of the biggest scares of my life.
After reading my surgery and update report from my first aneurysm surgery, the doctor became very concerned that the headaches I have been having were possibly "aneurysm warning bleeds," and the fact that the report mentioned an area on the left side of my brain (directly opposite/mirror-image from where they clipped my first aneurysm), that I should keep an eye on, because it could possibly turn into a new aneurysm down the line.
She ordered me to get an emergency cat-scan across the street at Huntington hospital. She said that since my last really bad headache was a bout 2 days before, (Wednesday night) that if the headache was an aneurysm bleed, that blood would show up on the cat-scan. She also wanted to check to see if the area on my left side had changed any. I had to wait about 45 minutes to get the cat-scan done, then they told me to come back in an hour or so for the results. Needless to say I was a bit terrified, but tried to remain positive. I was fortunate enough to have boyfriend Victor, with me for support.
So I went back for the results, and I received some of the best news of my life when the doctor told me that the cat-scan was normal. But she still urged me to get a follow-up angiogram done as soon as possible. So she gave me the name and number of a doctor at Mt. Sinai hospital in NYC, and I called to make an appointment for Monday, March 15th. And though my cat-scan came out clear, I was still worried the angiogram was going to come up with something that the cat-scan didn't.
Update 15 Mar 1999
My boyfriend and I got up at 4am on Monday, to catch a 5am train into NYC to get to the hospital at 7am. I didn't get into the operating room until about 9:30am. The angiogram procedure took a little over two hours -- and it was very unpleasant. I did not know what to expect, since I can't remember the angiogram doctors in Florida did on me three years ago.
First, they inserted a catheter tube in my groin area (now I have a tiny scar to match the one from my first angiogram 3 years ago). The insertion of the catheter tube was kind of painful at one point, but nothing too bad. I was only partially sedated, therefore, I was totally aware of what they were doing to me the whole time.
The doctors explained to me that they would be injecting dye into the 4 major arteries in my brain, and then proceeded to tell me the risks involved - damage to the arteries, stroke, and in rare cases, death. They explained that I would feel a "warm sensation" when the dye was being injected. And in the beginning, it did feel warm, but then the area felt like it burst into flames, and I saw tiny little yellow flashes of light. They did this about 8-9 times to me - extremely unpleasant and uncomfortable.
After the procedure was done, they were preparing me for recovery, and at this time, I got a chance to look at the monitor that displayed pictures of my brain. I was able to see where the neurosurgeon had clipped my aneurysm 3 years ago, as well as the clip itself-- it was pretty amazing. I asked the doctors tons of questions.
After everything was done, I had to stay in the hospital another 6 hours flat on my back, for observation. My sweetheart of a boyfriend stayed with me the entire time. I knew he was extremely worried, but he stayed strong for me, and comforted me. I was so hungry afterwards, I ate the hospital lunch they offered to me :) and then boyfriend went to get me more food.
I wasn't supposed to get the results of the angiogram back until Thursday, March 18th, during my follow-up visit with the neurosurgeon, but I told the recovery nurse that I needed to find out something before I left-just for peace of mind.
So I spoke with one of the doctors via phone, and she told me that from what they saw, there was no evidence of a new aneurysm. I was so happy, that I cried great big tears of relief :) I can't even begin to tell you how stressed I've been the last few weeks - wanting to hear anything BUT the fact that I would need to undergo surgery again! The doctor said that she believes that the headaches I am experiencing are probably migraines, and are not related to an aneurysm :) But I am going to the doctor on Thursday for a follow-up, so I'll find out then, where I go from here.
According to my last surgery report, I'm supposed to get annual angiograms. But I hope the doctor tells me differently, because all that dye they injected into my brain made me really sick. But I will keep you updated :)
Update 18 Mar 1999
I went to see a neurosurgeon at Mt. Sinai hospital for a follow-up visit to my angiogram procedure on Monday. The doctor said he had a chance to look over the angiogram results and that the aneurysm I had clipped is still well intact, and that everything that is supposed to "be there" is :)
He also mentioned that he did see the infundibulum on the left-side/mirror image to my first aneurysm, (which was also mentioned in the report from my 1996 surgery). He said what he's concerned with is that he does not have the pictures from the first angiogram to compare the size of the infundibulum in 1996, to the size of it now. So until he sees the 1996 angiogram pictures, he has no way of knowing whether or not it has changed any.
After I showed him the first report, which stated the infundibulum was 3 mm in length, he then replied, "That's about the size we viewed it at now..." "About?" that didn't sound to reassuring to me. He told me it would help him greatly if I could get the 1996 angiogram pictures for him to view -- the only problem is those are in Florida, because that's where my surgery was performed.
Before I moved back to NY six months ago, My sister and I attempted on numerous occasions, to obtain my files, and all of the films/pictures from anything and everything that was done while I was in the hospital from June 11 - June 30, 1996. The only thing I was able to get was the surgery and follow-up report from my neurosurgeon, Dr. Moore, who was considerate enough to take the time to send it to me, because he knew how important it was to me, God forbid anything was to happen to me while I was in New York. But the hospital is a whole other story.
I signed all the papers the hospital asked me to, so they could release the information to me, and they would take the papers and say "We'll call you, so you can come pick up your records..." and on other occasions they even asked for an address where they could send the information to me in New York, after I explained how vital the information was for me to have when I moved back to New York. But I never received a phone call, nor did I ever receive a copy of my records in New York.
So I am going to visit my sister next weekend in Florida for a mini (and well-deserved) vacation :) Now, I'll have to add a trip to the hospital to my agenda! But I know it's something that has to be done.
Despite all of this, the doctor from Mt. Sinai hospital, said he really sees nothing to worry about, and that I should get my next angiogram in 2 years (if we are unable to obtain the 1996 angiogram pictures), or in 5 years, (if we do get them).
Meanwhile, I asked him if he would be able to tell me what has been causing my headaches these last few weeks, and he replied, "I couldn't give you a satisfactory answer to that..." Thanks. So he suggested that I get an MRI done, because he said my Sugita clip was MRI-compatible (I feel like a piece of computer hardware :) So now that is my next step... so in my next update, hopefully I'll have some good news - that my headaches are GONE! :)
Update 30 Jun 1999
On June 12, 1999, I celebrated my third birthday! It was an extremely emotional few days, as I still remember everything so clearly. Because I do, it stirs up all of the many emotions I felt/went through while I was in the hospital, and the few years following it. But though it was emotional, it was extremely healing as well.
My mom is the only one that will mention my "birthday"... not that anyone forgot what has happened to me, but they rather "let it go" and focus on the fact that I am still here-- which is something my mom is finally able to do-- and I am very proud of her :)
Also, I was watching the Maury Povich show the other day, and the topic was "I am Too Ugly to Leave the House," and they had a guest on the show by the name of "Shari" who had been brutally attacked a few years ago, and had to undergo brain surgery. It was sad to watch this woman, as she told her traumatizing story, but it also angered me at the same time, because rather than be grateful, thankful, and feel blessed that she was still alive and able to be with her husband, and family, Shari was literally shaken to tears, because her "signature, beautiful, long, blonde hair" had to be shaved off during her surgery, and it is taking some time to grow back!
Now, I am far from heartless, and I could understand this woman's pain, because as she said on the show, she "did not choose this life" for herself. But, I know that before my incident, I took pride in the way my hair looked, and after realizing everything I had went through, I had told my family that if God had told me that I had to be bald the rest of my life, but that I would live, and be able to be with my family and friends, I would be happy, and that I would just wear a Yankees' cap :)
And with the good intentions of helping Shari, I am going to send a copy of my story to the Maury Povich show, asking that they forward a copy to her, in hopes that it may help her understand that she is not alone, and that there are others out there who are going through a similar experience-- and that there are wonderful people like everyone in our aneurysm/AVM group that are there to lend their wonderful hearts, and share their experiences to help others.
Update 18 Dec 1999
I had a little scare on Friday morning, December 17, 1999. I woke up to go to the bathroom at 4 a.m., and I had a headache, which felt just like a tension headache and nothing more. Then I woke up again at 5:30 am to feed my puppy, Jesci, and I still had the headache, but I figured I'd be able to sleep it off, and that it would be gone by the time I woke up and went to open up our business.
My boyfriend got up to shower at 8 am, and I had gotten up to feed the puppy again, and when I got out of bed the pain of the headache hit me hard. So after feeding the puppy, I got right back into bed -- hysterically crying at this point, because the pain was almost at the point of being unbearable.
My boyfriend came into the room after his shower, and saw me lying there hysterical, and he asked me what was wrong, and began to worry when I said, through the tears and pain "Vic, my head hurts . . . my head hurts . . . He began to panic a little, since he knows my previous medical history. So he asked if he should call an ambulance, but decided to call my Mom instead.
My Mom told him to take me to the emergency room at St. Luke's hospital (a local hospital in Newburgh, NY), and that she would meet us there. My wonderful boyfriend hurried around to get me ready, while I'm worried about the puppy not having enough to eat while we were gone.
We arrived at about 8:30 am. My Mom registered me, while my boyfriend parked the car. They asked me a few questions, and then put me in one of the ER beds until the doctor could see me.
When the doctor finally came to see me, she asked me questions about my 1996 surgery. I told her she should call my surgeon in Florida, and he would fax over or discuss any information she would need to know about my surgery. She said they would do a cat-scan first, and if anything looked abnormal, then they would contact Dr. Moore.
Two hours later, I had the cat-scan done (and the technician accidentally hit me in the jaw, while trying to place my head onto the cat-scan headrest . . . he felt awful about it, and kept apologizing, but I thought it was kind of funny - and it brought a little humor to the situation :)
The cat-scan turned out normal, but Dr. Santiago said she would still call Dr. Moore in Florida, to see if he felt there were any other tests they should run on me. Dr. Moore told her to give me some Demerol for the pain, and to perform a Lumbar Puncture (also known as a Spinal Tap). I was a little nervous, because I heard the test was pretty painful. They said Dr. Moore ordered it, to see if it would detect if I was bleeding somewhere else in my body, that the cat-scan did not pick up.
Originally, I didn't want to take the Demerol, because I wanted to try just plain Tylenol first, and then if my headache didn't subside, then I would take the Demerol. But I quickly changed my mind when my Mom told me that they wanted to do the Lumbar Puncture. I told the nurse, "I'll take the Demerol, thank you . . ."
Now it is 6 pm. and Dr. Jindal has not yet arrived to perform the LP on me. At this time, I was also informed that I was gong to be admitted into the hospital for overnight observation - to monitor my headache, as well as my reaction to the LP. I think Dr. Jindal finally arrived around 6:30 p.m., and performed the LP. He said I did very well, and that the fluid "came out clear . . . which is a very good sign."
At this point he said I had two choices: 1) He could send me home with some pain medication, or 2) I could stay overnight, so that they could monitor me. I chose option #2, since I still had a headache, and was told that one of the side effects of an LP was - yes, a headache . . . amazing, isn't it? You have to give a patient a headache, in order to find out why the patient had a headache in the first place? :)
So I waited another hour, until I was actually brought to my hospital room. My Mom, my youngest sister and my boyfriend were all with me. They called my sister in Florida, who was hysterical when she had found out from a secretary at my Dad's job, that "Your sister was admitted into the hospital . . . " But my Mom reassured her that I was going to be okay.
When I arrived at my hospital room, the first thing I did was call her, because I knew hearing my voice would make her feel better. She jokingly said, "What are you doing to me?? If you wanted more Christmas presents, all you had to do was ask, and I would have gotten them for you!" :) Then at around 9:30 p.m. the nurse gave me some more Demerol for the pain, right before my family left.
Then very early on Saturday morning, December 18, 1999, the nurses woke me up to take more blood, by temperature and blood pressure (everything turned out okay). But at this time, they had no information as to whether Dr. Jindal had looked over my LP test results, nor whether or not I would be released today. At this time I still had a headache, but this time I opted for the plain old Tylenol, rather than for the Demerol-- I think it was just causing more of a headache, on top of the one I already had. Well, I am happy to say the Tylenol made me feel much better :)
Then at around 3:15 p.m., the nurse informed me that Dr. Jindal said I could go home today. That I would have to call him on Monday to make an appointment to see him later in the week for a follow-up. And if my headache persists, to call him immediately. So now, I just have to wait to see Dr. Jindal next week, and hopefully he can give me some kind of answer as to why I had gotten such an awful headache - it was the worse one I had since my surgery in June of 1996.
I will be sure to update everyone, as soon as I talk to Dr. Jindal. But, until then, I have no plans of letting a little headache break my Christmas Spirit! I still have a heck of a lot more Christmas shopping to do, and only 6 days to do it in! :) I want to thank all of my new friends who have supported me through everything. Your friendship and support mean a great deal to me.
Update 28 Dec 1999
I guess I had opened my mouth too soon! I thought I was fine when I left the hospital on Saturday, December 18th. I had rested the whole day, and for most of the day on Sunday, the 19th, but later that afternoon I got a mild headache, but a power nap and some Tylenol took care of it.
Then on Monday, the 20th, I spent the day at our business and I felt fine until about 5:30 PM or so. Victor, my Mom and I decided earlier in the day that we would go Christmas shopping after we closed the business, so I took Tylenol before we headed out to the malls, because I felt a headache coming on.
I figured by the time we reached the mall, my headache would be gone, but the car ride to the mall made me feel even worse. I figured once I was up and walking around the mall and got some air, I would feel better -- but I became even worse. Well, to make a long story short, our Christmas shopping spree was cut relatively short, as Victor and my Mom rushed me back to the ER with a headache WORSE than the one I had been admitted into the hospital for!
As I sat in the ER waiting room, feeling as if my head was going to fall off and trying not to cry, because I didn't want to irritate my headache, my Mom was able to find a compassionate nurse, who had taken me right in after my Mom had explained to her my condition. She immediately made me feel as comfortable as I possibly could be.
About 40 minutes or so later, the doctor came in to examine me, and he quickly assessed that my headache was a "delayed reaction" to the Lumbar Puncture I had on Friday, the 17th. I was quite upset because not only did the Lumbar Puncture give me a worse headache than the one I had originally gone into the ER with, but I had felt that I had been misinformed.
When I had the Lumbar Puncture done, the doctor who did it, told me that I would get a "headache" but made me believe that it would be either that night or the day after the LP had been performed. So the night I stayed in the hospital, the nurse had given me Demerol to sleep, so I figured the "LP headache" had come and gone during the night -- and I just never felt it because of the Demerol, and also because I felt fine when I was discharged from the hospital on Saturday, the 18th.
So for my "LP headache" I was given Benadryl, Restoril, and Droperidol. I stayed in the ER for about 5 hours -- with an IV and a blood pressure cuff attached to me. I was pretty uncomfortable, and freezing -- as all they allow you to wear in the ER is a flimsy gown :) But the nurses there were wonderful, and took care of me as well as they possibly could. One nurse even gave me copies of everything from both of my ER visits. So I made sure to thank them before I was discharged.
I was discharged around midnight or so, with a prescription for two Ambien (sleeping pills), and I had to take one before I left the hospital, and one in the next day when I woke up. Needless to say, I was laid up for a solid 72 hours with a spinal tap headache, but to a smaller degree than the one that landed me in the ER for a second time.
Though I felt awful, all I could think about was getting my Christmas shopping done, can you believe that? :) But I wasn't well enough until Christmas Eve to get some of it done. And unfortunately, my headache had lingered all through Christmas.
The headache I felt was like a pressure headache, accompanied by nausea, and dizziness. I felt the best when I was lying flat on my back, but I took Tylenol every 6 hours, and listened to my body -- if I felt tired, or dizzy, then I would sit, or better yet go to bed -- and I tried to do as little as possible, and my wonderful family and boyfriend made that easy for me :)
My poor Mom, family and boyfriend have been BEYOND STRESSED -- especially my Mom, because she thought I feared that what I have been experiencing was an aneurysm headache. But as I tell others in our Aneurysm/AVM group, who write to me and tell me how they become scared every time they get a headache: You cannot let it take over your life, because then you will not HAVE a life . . . yes, it is always better to be safe, than sorry, but no one knows your body better than you do, and eventually you will be able to tell the difference between a "headache" and an "aneurysm headache." And this is what I live by :)
Sunday, the 26th, was the first day I didn't have a headache in the last 2 weeks. The only thing that is bothering me is my lower back from the LP, but at this point, I am feeling a HECK of a lot better than I have been in the last two weeks, and my appetite has returned to normal.
I am still taking it easy and taking good care of myself, because I am leaving for Florida early in the morning on the 29th, to spend New Year's with my family, and to celebrate my sister's wedding on January 2, 2000-- and I have NO PLANS of letting anything stop me from being there (that Tomboy Spirit in me just won't die! :)
I have an appointment scheduled for January 31, 2000, at Westchester Medical's Neurology Department -- hopefully they can tell me why I have been getting headaches. Everyone who has examined me thus far, only tells me what it ISN"T, but I need to know what IT IS. Even if they tell me they are just migraines, sinus infections, or allergies, at least I'll know, and then I can take care of them the right way. So I will keep everyone updated :)
I also want to thank everyone who has sent me e-mail, and for all of the wonderful support, thoughts and prayers from our support group. Everything is very much appreciated, and I promise that when I return from Florida on Jan. 5th, that I will respond to each e-mail personally :) I wish all of you Happy Holidays, and 2,000 dreams and good wishes filled with Love, Happiness, and Prosperity for you and your family in the New Millennium!