My Leaky Brain Story

This started out as a log when I got out of the hospital and I have gone back and filled in the missing pieces, from talking to people and doing a CSI on my computer.

During the three months of this ‘adventure’, I do not remember much about it, just bits and pieces. I have learned a lot of the details from talking to friends and family after I got out of the hospital and recovered. I pieced this history together, talking to people after I was released from the hospital.
Monday - May 11th, 2009 – Showed 1st signs of being sick, as David, my roommate came home; but I was in no condition to give him a ride to his truck. He just thought I was sick.
Tuesday, Wednesday – May 12th, 2009 through May 13th – I do not remember what happened during this time. No memory of it. Using skills I learned from watching the CSI shows, I found out that during these two days, my e-mail program was closed, as no mail came in. Fed Ex delivered a computer that I signed for and Jim dropped by to deliver a computer, but refused to come in, as I looked very sick. He later said that he thought I had the swine flu, which was popular about that time. During this time, Charleen, my roommate’s wife, had two people check on me, including one nurse that works with the lady across the street, but I answered the door and answered questions for them. They knew I was sick, but I think the refusal of me to think anything being serious wrong with me was kicking in. Charleen was in Boston and was not scheduled to come home until the 14th of May. I was home alone during all this time, except for the cats.
Thursday, May 14th, 2009 – at 8:30am, I called Tommy, a friend of mine that lived an hour away and he said my speech was slurred and I was not making sense. I finally said, “I think I am dying” and he told me to call 911. I then made two calls to Mark, another friend that lived 10 minutes away, but got no answer. I then logged onto MSN chat and sent a message to Marsha, another friend that lives hours away, that I thought I was dying. At 9:30am, I called 911. I got this information from my phone records.
I remember being loaded into the ambulance, but remember nothing after that. No memories of being in Saint Cloud Hospital for the 2-3 hours I was there. I do not remember the ride to the Orlando hospital, but I told the nurse there was a goat in the ambulance with me. I have small memories of feeling alone with no visitors, while waiting for my mom to arrive. I know I drove them crazy waiting for my mom to show up. I do have a memory of seeing the doctor after the surgery. During the next two weeks when I was in intensive care, I was of course on the medication. I was not an easy patient¸ as I was constantly ripping the IVs out of my arms. Early on, they had to actually strap me down. I had a lot of crazy dreams during this time and I have many visitors and phone calls. I do not remember most of them. The medication that I was taking was affecting the way that I was thinking. I slept a lot, but most of the time I made sense in conversations.
The procedure was done on the 17th, a Saturday and this was a couple of days before my mom arrived. They said once my mother had arrived, I started to be on the road to recovery much faster. This taught me how important it is to support friends and loved ones that are sick and in the hospital. During the next week and a half; I was being monitored and given drugs to help me recover. There was one drug that I had to take every 4 hours and it made me not think very clear and sleepy. I had to take this medicine for 2 weeks after I was released from the hospital. During all of this, I maintained my sense of humor. One nurse had explained to me that vessels in my brain were leaking blood into my brain. I had told her that they were not seeing blood in my brain, but it tomato soup, as I had been eating a lot of tomato soup the last few months.
I had wonderful doctors and nurses that did a fabulous job in saving my life. I am of course very thankful for this. After two weeks, I was moved to another room, where the recovery was started. I remember being able to take a shower and getting my hair washed for the 1st time. I have long hair and it was just one big tangled lump. My mother did her best to comb it out. With my mom was my nephew’s mother, who went along for the ride from Texas to give my mother and I support. I did have enough wits about me to arrange a trip to Disney for them and also a comp at Planet Hollywood for them. My friend Tommy brought in his laptop for me to use while I was there. So I was able to put our radio station show online on Saturday night using it. I remember being frustrated with the laptop, as I did not have my mechanics in my hands back 100 percent. My mother and I were able to watch several Detroit Tiger games over the internet on the laptop.
I also kept losing the remote to the TV. I do not remember anything that I watched during this time, but I do not think I was really watching much TV, as I am not much of a TV watcher. I also remember a nurse taking me for a walk down the hallway. I had to use a walker to walk with, and she questioned why I was walking with it all hunched over. I remember responding that everyone I ever saw using one they walked that way. I told her that I felt that I did not need it and could walk without it. The next day I was able to prove to her that I could and I walked quite well. They expected me to be in recovery for 2-3 weeks, but I was able to go home after one week.
At this point, I feel I had my brain back and I can remember the ride home. I still had to take the medicine every 4 hours and Charleen helped me quite a bit by waking me up to take it. I also was losing a lot of hair; it was coming out in clumps. One of my medicines that I was taking had this side effect. Once I was off all the medicine, I went to my hair guy and he cut off a lot of hair that had died. Eventually, my hair started to grow back.
All of the medicine I was taking did not require refills, so once I was off all of them, things started to get normal again. I was able to return to my customers and to do some computer work for them.
One of the nurses estimated that this leak was probably going on in my brain for a year. That is something they cannot really tell, is say when it started or even what caused it to happen. Most of the time, it is just from a vessel that got weak and caused the leak; much like a radiator hose that is wore out. My research has told me that it can also happen from getting hit in the head. This could have happened many years ago. A family history of aneurysms can also increase the chances of it happening, but there was no history of it in my family. Something like this is very hard to prove exactly when it happened. A lot of people have told me that I was very lucky and I agree. I compare it to Real Estate, with LOCATION, LOCATION, LOCATION being the key. If the leak is happening in an open area of the brain, there are increased chances of it growing and eventually bursting. If this happens, the chances of not surviving increase quite a bit. Also, if it is located closer to the eyes, your vision can be affected. If it happens close to your ears, your hearing can be affected. This is what happened to me. I remember the day I went to the hospital, my hearing was changed. It was much like when you are on a plane and landing and your ears are popping. Other locations can cause you to have stroke symptoms and can cause you to lose the ability to use one side of your body. Some people have to learn to walk all over again. I was very lucky that I had NO after effects. They had told my mom that I may not be able to walk or I could have stroke after effects, but I basically had none. They were really astonished with my fast recovery.
After the fact, I can now see the symptoms that I had. Before the leak was fixed, I had been suffering short term memory loss and in general my memory was fading fast. I use to pride myself on how good of a memory I had, being able to remember details about customer’s computers that I had worked on six months earlier. Being 52 years old, I had written them off as getting old. It was never a big concern, as I thought it was part of the getting old process. I do remember that the month before, it was getting worse very fast. I do not think it was affecting the way I was thinking, as far as making me dumber than before, I still think my brain was working correct in that aspect. Also was affected was I was that I was fatigued quite easy. I had another medical problem the past year, where I was not able to eat solid food. My diet had been pretty much creamed soup most of the time. I dropped in weight from 210 to 188 over a years’ time. While I was in the hospital, they found this problem as acid reflex had caused my esophagus to almost completely close. They put a balloon in my throat and opened it back up. While it is not opened 100 percent, in my opinion, it is opened enough where I can resume normal eating habits, as long as I avoid eating too big of chunks of food. I have since then learned to control my acid reflux by eating a little healthier and not eating certain foods to close to bed time. I was taking acid reducers for a while to help control the acid reflux, but now I do not take this medicine and I have not had any problems in a while.
It has been one year and 3 months since this happened and I feel I have recovered 100 percent from it. I got my weight back up to an almost healthy 206 pounds. I always carried an extra 10-15 pounds on me that I could not get rid of. I tried everything to lose it, except for exercise and healthy eating, of course.
The follow up to the brain doctor went well. He did not remember me, and I had to explain how things went down. He was amazed, along with the nurses in the hospital, that I was the one that called 911.
I have done a lot of research on this after I was recovered and in the past year, there have been some remarkable discoveries that make it easier for the doctors to detect that you are having a brain aneurysm and also new ways to solve the problems. With me, they fed a thin platinum wire up the vessel from your thighs. They also feed in tools and a camera and they basically coil the wire into the bubble caused by the leak. This causes the blood to clot and the leak to stop. They now have glue they can put in the bubble to do the same effect. They still sometimes have to open your head up and work on it that way. It all depends on the patient and the location of the leak.
Of course, the earlier the detection of the leak, the better chances of correcting the problem. Knowing that you are suffering from an aneurysm is the hardest part, as the symptoms are often mistaken for other things, such as getting older. Groups such as The Joe Niekro Foundation are spreading the word to let the public know of this medical problem. It happens in 1 out of 11 Americans and a lot of people have not survived because of aneurysms. I now have a better awareness of it, but I was told that each year, the chances of having another one increase by 1 percent. So in 10 years, there is a 10 percent chance that it could happen again.

This is a wonderful story…:slight_smile:

Welcome…and thank you for all you shared…we all have so much to learn…Before responding here, I checked the impressive Joe Niekro site… of which I did not know.
You were blessed to have your friends and family and your treatment.
I had long delays similar … three emergencies in 29 days…sought testing / diagnosis of my black-out/syncope immediately following that first emergency. It has been a long long recovery for me…
I dramatically lost short-term and learning memory a/w/a hearing loss, vision loss and more… I have no memory of hospitalization…not even a face…except family/friends (long-term memory) I have what I call a visual flash memory (VFM)…a picture of family / friends…but no recording!
I had the neuropsych tests every two years to check the areas still not functioning; and, told which therapies to continue…
Again, thank you for all you shared…