When I was growing up, I often didn't tell my friends that I have hydrocephalus. Now as an adult I pretty much shout if from the rooftops. But as a kid I was so worried about what my peers would think of me. Maybe they would think I was strange or start treating me different.
The only time I told people was when I was hospitalized with a revision and would miss weeks of school. When I was in elementary school the kids couldn't understand the condition very well. Even my 7 year old son who deals with it on a daily basis doesn't understand the extent of it. I had two revisions in kindergarten and my teacher had the entire class make me huge get well cards. In case anyone from my kindergarten class is reading this I still have those cards and still appreciate them to this day.
By the time I got to junior high, the kids had a little more understanding and compassion for what I was going through. Some of them even started asking me questions about it. Luckily I never did need a revision in high school. Just one in the short amount of time that I went to college but no one in my classes even noticed my absence. I have been having surgery pretty regularly ever since.
Besides having a fear of talking about my condition, I did struggle a little in school. I was only a C average student. I often had trouble remembering subject matter and did poorly on tests because of it. Of course when I was having a shunt failure my grades dropped even more but I always had an opportunity to make up the work. Also I really struggled with learning how to write in cursive and it's still horrible to this day. School made me realize I am not a visual learner because I can't remember what I read. I learn by doing. I used to make a lot of mistakes and it got worse when I started working. I didn't really tell anyone about my struggles with learning because I thought I was dumb and was embarrassed. It wasn't until I got older that I realized that I am not dumb. I just have a brain injury.
My pediatric neurosurgeon always told me not to play contact sports and I was always taken out of physical education for months after a surgery. So I never joined any sports or anything like that. I was also so shy that I didn't really join any clubs either. I never enjoyed being a student so I basically just did what I needed to do to get by.
As a child I did play with all the neighborhood kids like a normal child would. I just had some limitations, suffered bad headaches, and spent more time in hospitals then most of my peers. But it was hard growing up feeling like I was the only person with this condition. I wish they had support groups and hydrocephalus walks back then..
I used to have horrific nightmares growing up. The nightmares were so bad and vivid that sometimes I dreaded going to sleep. They got a little better as I became an adult. I think the nightmares started because I was afraid to stay over-night at the hospital and multiple brain surgeries for a child is traumatic.
I survived childhood and had no idea that becoming an adult would be worse than I ever imagined...
This blog is about living my life with Hydrocephalus. I acquired it shortly after birth so I have many experiences to share. I will be very open about my journey. Feel free to comment, ask questions, suggest a topic for me to write about and share the posts. Please keep in mind that I am just one person out of millions. We may not all share the same symptoms and experiences but we can certainly be there for one another. Thanks for reading!!
Tuesday, July 14, 2015
Sunday, June 28, 2015
Another Update to the 26th Surgery
Today has been a month since my shunt has been clamped off. I should be more excited about this but I'm not because I am still not completely feeling better or living a normal life. I am grateful not to be over-draining anymore though.
Father's Day weekend things went pretty sour. I had incredibly high pressure in my head and started vomiting. I called the on-call surgeon and he suggested that I wait until Monday so my doctor could get me in for a lumbar puncture. I did call the following Monday but they decided to do an emergency CT scan instead. I never did find out the results of that scan like I was told I would, but they did schedule the lumbar puncture for later that week.
My doctor's office told me I would have to lay flat for forty-five minutes after the procedure and when I get to the hospital they told me that it was actually two hours. I was at the hospital for five and a half hours total. (I was less than thrilled about the situation considering that the hospital has become my second home lately.) My mom was still in town and was able to take me to and from the hospital and take care of my son while this was happening.
Surprisingly enough that was my first lumbar puncture. The procedure took longer than anticipated because they were having a hard time getting the CSF out. That didn't surprise me at all because they have had trouble getting CSF out since I was diagnosed with slit ventricle syndrome many years ago. So after hitting two nerves, they finally got the right spot.
I started feeling better almost immediately. Unfortunately that only lasted about 24 hours. I am back to not being able to lay flat, having mild pressure headaches all day that get worse about an hour before my medication is due and I am in terrible pain at night.
The day after the lumbar puncture, I had my first physical therapy session since being released from the hospital. My walking had been improving. In fact I am no longer using the walker but am back to using the cane again. The physical therapist determined that I only have trouble walking when my pressure is either too high or too low. When I had to lay flat during a portion of the exam, my left leg kept giving out like it normally does. Unfortunately there is nothing they can do for that. The pressure has to be corrected since my walking problems are not a muscle issue. At this point, I don't have to return to physical therapy anymore.
I have another CT scan in July and see my doctor a few days later. I am still not convinced this is going to be a permanent solution. Until then I am taking things literally hour by hour. This morning I wasn't feeling too bad but my headaches and walking got worse as the day went on. For now, it's just a waiting game.
Father's Day weekend things went pretty sour. I had incredibly high pressure in my head and started vomiting. I called the on-call surgeon and he suggested that I wait until Monday so my doctor could get me in for a lumbar puncture. I did call the following Monday but they decided to do an emergency CT scan instead. I never did find out the results of that scan like I was told I would, but they did schedule the lumbar puncture for later that week.
My doctor's office told me I would have to lay flat for forty-five minutes after the procedure and when I get to the hospital they told me that it was actually two hours. I was at the hospital for five and a half hours total. (I was less than thrilled about the situation considering that the hospital has become my second home lately.) My mom was still in town and was able to take me to and from the hospital and take care of my son while this was happening.
Surprisingly enough that was my first lumbar puncture. The procedure took longer than anticipated because they were having a hard time getting the CSF out. That didn't surprise me at all because they have had trouble getting CSF out since I was diagnosed with slit ventricle syndrome many years ago. So after hitting two nerves, they finally got the right spot.
I started feeling better almost immediately. Unfortunately that only lasted about 24 hours. I am back to not being able to lay flat, having mild pressure headaches all day that get worse about an hour before my medication is due and I am in terrible pain at night.
The day after the lumbar puncture, I had my first physical therapy session since being released from the hospital. My walking had been improving. In fact I am no longer using the walker but am back to using the cane again. The physical therapist determined that I only have trouble walking when my pressure is either too high or too low. When I had to lay flat during a portion of the exam, my left leg kept giving out like it normally does. Unfortunately there is nothing they can do for that. The pressure has to be corrected since my walking problems are not a muscle issue. At this point, I don't have to return to physical therapy anymore.
I have another CT scan in July and see my doctor a few days later. I am still not convinced this is going to be a permanent solution. Until then I am taking things literally hour by hour. This morning I wasn't feeling too bad but my headaches and walking got worse as the day went on. For now, it's just a waiting game.
Friday, June 5, 2015
Surgery 26-Part 2
Obviously I survived that night. With no sleep. The next morning, my doctor came in to see me and we had a long conversation. He is not convinced that that this is a permanent solution. He is still hoping that the ventricles will grow and he can do a third ventriculostomy or put in a cistern shunt which is not commonly used. Since I was still having "contractions" in my brain Monday morning he decided to put me on a medication that reduces pressure in the brain. Among other medications.
Once I started taking that medication, I did notice an improvement. They decided to release me on Tuesday afternoon. They will be monitoring me closely, doing many CT scans and I will be starting physical therapy soon. I still can't get up or walk around by myself. Also I have to use a walker at all times.
I am still having pressure headaches all day long and they get worse about an hour before it's time to take that medication. Last night the "contractions" started again but luckily they went away during the middle of the night. I am not convinced that this will last forever, but only time will tell. I literally have to take things one day at a time and need to be careful because I am basically a walking time bomb with a shunt shut off.
Although I don't feel better, it is amazing to be sitting here writing this blog with a clamped off shunt. You can only imagine how incredible it was for me to leave the hospital with it turned off. That is all I wanted. It may not last forever but I will enjoy the days that I have without it.
But please don't get in your minds that this is it because it really may not be. My doctor doesn't even think so and he's been my biggest advocate. Everyone keeps saying, "I thought this would be the surgery to work" and that's just not how any of this works. Also I would appreciate if people didn't tell me to remain positive because that has only caused me nothing but depression. This is the 3rd time that they have attempted to remove my shunt so you can imaging how devastating it was when it didn't work the last two times. Besides I would never tell people how they should feel about something yet some people seem to think they need to govern my feelings.
On that note I want to share the video of me leaving the hospital. I wanted so badly to walk out on my own and luckily they allowed it with some conditions. This is THE MOST IMPORTANT moment of my life and I want to share it with all of you. Enjoy and grab the tissues.
Once I started taking that medication, I did notice an improvement. They decided to release me on Tuesday afternoon. They will be monitoring me closely, doing many CT scans and I will be starting physical therapy soon. I still can't get up or walk around by myself. Also I have to use a walker at all times.
I am still having pressure headaches all day long and they get worse about an hour before it's time to take that medication. Last night the "contractions" started again but luckily they went away during the middle of the night. I am not convinced that this will last forever, but only time will tell. I literally have to take things one day at a time and need to be careful because I am basically a walking time bomb with a shunt shut off.
Although I don't feel better, it is amazing to be sitting here writing this blog with a clamped off shunt. You can only imagine how incredible it was for me to leave the hospital with it turned off. That is all I wanted. It may not last forever but I will enjoy the days that I have without it.
But please don't get in your minds that this is it because it really may not be. My doctor doesn't even think so and he's been my biggest advocate. Everyone keeps saying, "I thought this would be the surgery to work" and that's just not how any of this works. Also I would appreciate if people didn't tell me to remain positive because that has only caused me nothing but depression. This is the 3rd time that they have attempted to remove my shunt so you can imaging how devastating it was when it didn't work the last two times. Besides I would never tell people how they should feel about something yet some people seem to think they need to govern my feelings.
On that note I want to share the video of me leaving the hospital. I wanted so badly to walk out on my own and luckily they allowed it with some conditions. This is THE MOST IMPORTANT moment of my life and I want to share it with all of you. Enjoy and grab the tissues.
Thursday, June 4, 2015
26th Surgery-Part One
On May 27th, I was admitted to the hospital to have my shunt clamped to see if I could live without it or get the ventricles of my brain to open up large enough to do the 3rd ventriculostomy surgery. My surgeon chose to tie off my shunt in my abdomen because opening up my head would just cause a headache and we didn't want to confuse the situation. It was expected that I would be in the hospital for about three days. That didn't happen.
For my own personal reasons, I chose not to tell anyone except family members and a few close friends in my area. I have very important reasons for this and I stand by them. I hope that everyone will understand and respect my decision.
So when they took me back to the pre-op area all the trauma over my lifetime came back to me AGAIN. I couldn't stop crying. My husband had to pretty much drop me off and leave because he had to get our son from school. I laid on the gurney listening to music in the dark and cried. When my surgeon came in, he asked how I was doing. I wasn't able to respond. He seemed to understand and turned away. Then he asked if I was having a bad headache that day. I managed to say yes and that I didn't want to be there again. He said, "I know Shelley" and left to go scrub in for surgery.
The actual surgery only took about thirty minutes. They didn't even give me general anesthesia, just local. Luckily I don't remember anything that happened in the operating room since technically I wasn't fully asleep.
When I woke up in recovery, I immediately had a headache and nausea. I tried not to be discouraged but I couldn't help it. After recovery I was taken to ICU for close monitoring. I stayed there just over night until they felt that I was stable enough to go to a regular room.
Thursday afternoon I went to a regular room. I had a constant headache but everything else seemed stable. They encouraged me to walk about the floor and even go outside. Then Friday arrived. The headache increased, my walking got worse and I started vomiting all over the hospital when I was walking around. They paged my doctor. He decided that they would make me as comfortable as possible that evening and he would see me in the morning.
Saturday I had a horrible experience with a nurse who took the situation I was going through as a migraine although it was not a migraine. She pretty much kicked my husband and son out and also my follow hydrocephalus friend who was visiting. She wouldn't let me get up, didn't check in on me to give me pain meds, made my sit in the dark without the television or music on. As soon as shift change occurred I went out into the hallway and cried. I ran into the charge nurse, explained the situation to her and informed her that I felt no one was taking me seriously this hospital stay. My pain was not being managed.
I felt better after talking to her, getting some pain meds, and my husband brought my son for a quick visit before visiting hours ended. Then Sunday came around.
My friend came back for a short visit and then my husband and son came by with a friend of my husband's. When they were leaving, I thought I would walk them to the elevators. Well I didn't make it because my leg kept giving out. My husband had to help me back to my room. Things only got worse from there.
My walking was so bad the rest of the day that the nurses understandably wouldn't allow me to get up anymore on my own. I had to use the restroom during a neurological check at midnight. When I was walking back to the bed I passed out on the floor. Luckily I landed on my knees in slow motion and didn't hurt anything. I couldn't speak or get up for several minutes. The nurse paged the charge nurse, they got me back into bed, and called the emergency response team. They took my blood pressure and found that it was dangerously high. Your blood pressure is correlated to your brain pressure. I was devastated.
The on-call doctor was paged and he ordered a CT scan. Although my ventricles did open a little bit for the first time in 17 years earlier in the week, they didn't open anymore. So the on-call doctor assumed that my pressure wasn't high because of the ventricle size. That is not true. I've had high pressure often with tiny ventricles. It's called Slit Ventricle Syndrome. I had the most head pain and nausea that I've experience in my life. The pain was beyond the pain scale. It literally felt like I was having contractions in my brain.
The nurses taking care of me that night were fantastic! They were there for me both physically and emotionally. I was terrified to fall asleep that night because the pressure was so incredibly high and I felt certain that if I fell asleep I wouldn't be waking up. They encouraged me to try and sleep, stayed with me whenever they could, and kept giving me my koala bear that has been with me for every surgery since I was two. They also kept encouraging me to go to a happy place. My happiest place ended up being in the hospital room having Isaac Brock singing to me with an acoustic guitar. (Hey a girl can dream right?) That thought was what brought my pressure down the most.
To the ladies that took care of me that night, I thank you from the bottom of my heart. How could I ever forget the support that you gave me that awful night? I literally thought it was going to be my last night one earth and you helped pull me through.
The story does not end here. But it ends for me now. It's difficult typing with blurry vision and a headache. So stay turned for part two tomorrow.
For my own personal reasons, I chose not to tell anyone except family members and a few close friends in my area. I have very important reasons for this and I stand by them. I hope that everyone will understand and respect my decision.
So when they took me back to the pre-op area all the trauma over my lifetime came back to me AGAIN. I couldn't stop crying. My husband had to pretty much drop me off and leave because he had to get our son from school. I laid on the gurney listening to music in the dark and cried. When my surgeon came in, he asked how I was doing. I wasn't able to respond. He seemed to understand and turned away. Then he asked if I was having a bad headache that day. I managed to say yes and that I didn't want to be there again. He said, "I know Shelley" and left to go scrub in for surgery.
The actual surgery only took about thirty minutes. They didn't even give me general anesthesia, just local. Luckily I don't remember anything that happened in the operating room since technically I wasn't fully asleep.
When I woke up in recovery, I immediately had a headache and nausea. I tried not to be discouraged but I couldn't help it. After recovery I was taken to ICU for close monitoring. I stayed there just over night until they felt that I was stable enough to go to a regular room.
Thursday afternoon I went to a regular room. I had a constant headache but everything else seemed stable. They encouraged me to walk about the floor and even go outside. Then Friday arrived. The headache increased, my walking got worse and I started vomiting all over the hospital when I was walking around. They paged my doctor. He decided that they would make me as comfortable as possible that evening and he would see me in the morning.
Saturday I had a horrible experience with a nurse who took the situation I was going through as a migraine although it was not a migraine. She pretty much kicked my husband and son out and also my follow hydrocephalus friend who was visiting. She wouldn't let me get up, didn't check in on me to give me pain meds, made my sit in the dark without the television or music on. As soon as shift change occurred I went out into the hallway and cried. I ran into the charge nurse, explained the situation to her and informed her that I felt no one was taking me seriously this hospital stay. My pain was not being managed.
I felt better after talking to her, getting some pain meds, and my husband brought my son for a quick visit before visiting hours ended. Then Sunday came around.
My friend came back for a short visit and then my husband and son came by with a friend of my husband's. When they were leaving, I thought I would walk them to the elevators. Well I didn't make it because my leg kept giving out. My husband had to help me back to my room. Things only got worse from there.
My walking was so bad the rest of the day that the nurses understandably wouldn't allow me to get up anymore on my own. I had to use the restroom during a neurological check at midnight. When I was walking back to the bed I passed out on the floor. Luckily I landed on my knees in slow motion and didn't hurt anything. I couldn't speak or get up for several minutes. The nurse paged the charge nurse, they got me back into bed, and called the emergency response team. They took my blood pressure and found that it was dangerously high. Your blood pressure is correlated to your brain pressure. I was devastated.
The on-call doctor was paged and he ordered a CT scan. Although my ventricles did open a little bit for the first time in 17 years earlier in the week, they didn't open anymore. So the on-call doctor assumed that my pressure wasn't high because of the ventricle size. That is not true. I've had high pressure often with tiny ventricles. It's called Slit Ventricle Syndrome. I had the most head pain and nausea that I've experience in my life. The pain was beyond the pain scale. It literally felt like I was having contractions in my brain.
The nurses taking care of me that night were fantastic! They were there for me both physically and emotionally. I was terrified to fall asleep that night because the pressure was so incredibly high and I felt certain that if I fell asleep I wouldn't be waking up. They encouraged me to try and sleep, stayed with me whenever they could, and kept giving me my koala bear that has been with me for every surgery since I was two. They also kept encouraging me to go to a happy place. My happiest place ended up being in the hospital room having Isaac Brock singing to me with an acoustic guitar. (Hey a girl can dream right?) That thought was what brought my pressure down the most.
To the ladies that took care of me that night, I thank you from the bottom of my heart. How could I ever forget the support that you gave me that awful night? I literally thought it was going to be my last night one earth and you helped pull me through.
The story does not end here. But it ends for me now. It's difficult typing with blurry vision and a headache. So stay turned for part two tomorrow.
Monday, May 18, 2015
Funny Moments with Hydro
I warned everyone in the blog description that I was going to be very real with my posts. Things are going to get pretty real with this one, so if you are the faint of heart don't read any further. Just kidding-it's not that bad.
Having hydrocephalus has caused an abundance of tears for me, my family, and close friends. But it has also caused some humorous moments. I can't believe that I am going to share some of these for the world to see but hey, it happens to the best of us. We are all human.
It's no secret that many people with hydrocephalus have memory problems. I have always had issues with short term memory and it has got increasingly worse in the last two years. One time a fellow hydrocephalic (and good friend) and I went out to lunch. When we were leaving the establishment, neither one of us could remember where I parked my car. Luckily it was a small parking lot and we were able to locate it after a few minutes. But after that incident, my husband decided that maybe it was best if we didn't go out in public alone anymore.
Going in for surgery is very nerve wracking. One of the surgeries that I had in 2013, I was particularly nervous for some reason. My stomach was in knots! I was feeling kind of gassy if you know what I mean. To my horror, I woke up from surgery actively tooting. I had absolutely no control over it! I tried to stop it but it wasn't happening. And guess who was standing at the end of my gurney in the recovery room? My anesthesiologist. I don't know if he heard them or not. At the time it seemed like I was blowing a trumpet but I don't think it was really that bad. Luckily there was no odor that I know of anyway.
Let's fast forward to last year. As I discussed before, I had pancreatitis in November and December. I didn't eat for about three weeks except for bananas and dry toast occasionally. I needed emergency surgery the beginning of December. The hospital food was the only thing that I had eaten in weeks and apparently my stomach and bowels weren't too happy about it. If I recall correctly, I was waiting for my husband to bring our son for a visit and I had fallen asleep listing to music. Suddenly I woke up in a panic wondering where I was and I started having severe stomach cramps. I grabbed my body spray out of my bag because I knew it was going to be a doozy and ran into the bathroom in my room. As I was having explosive diarrhea, I was literally hoping and praying that the other patients near my room couldn't hear what was happening in that bathroom.
So I finished up my business, washed my hands and sprayed the good smelling body spray. I walked out of the bathroom feeling better but was surprised to see my doctor right by the bathroom door waiting for me. I was mortified! I literally screamed when I saw him and of course that gave him a chuckle. I clutched the body spray against my chest like it was my life preserver. I kept wondering how long was he standing there and why couldn't he have come back later to check on me when he saw the bathroom door closed?!? To this day I don't know if he heard anything or not but it was hard for me to look him in the eye the next time I saw him. Yes I know doctors are used to this kind of thing but still... MORTIFIED!
Lastly my fellow hydrocephalic friend called me the night before my surgery on April 3rd. I thought she was calling to wish me luck. She asked what I was doing and I mentioned that I just got done with my antibacterial shower. She asked why I was doing that and I explained that as she knows, we have to do an antibacterial shower the night before and morning of surgery. She was confused and said that my surgery was the next week. I said no, it's tomorrow. Then she asked if I was sure and we both cracked up. I'm starting to think that having a good friend with a memory just as bad as mine will be quite fun over the years.
Well I hope this post gave you a chuckle. At the time some of this occurred, laughter was the last thing on my mind but it's funny now. If you can't laugh at the embarrassing things your bowels do to you, what can you laugh at?
Having hydrocephalus has caused an abundance of tears for me, my family, and close friends. But it has also caused some humorous moments. I can't believe that I am going to share some of these for the world to see but hey, it happens to the best of us. We are all human.
It's no secret that many people with hydrocephalus have memory problems. I have always had issues with short term memory and it has got increasingly worse in the last two years. One time a fellow hydrocephalic (and good friend) and I went out to lunch. When we were leaving the establishment, neither one of us could remember where I parked my car. Luckily it was a small parking lot and we were able to locate it after a few minutes. But after that incident, my husband decided that maybe it was best if we didn't go out in public alone anymore.
Going in for surgery is very nerve wracking. One of the surgeries that I had in 2013, I was particularly nervous for some reason. My stomach was in knots! I was feeling kind of gassy if you know what I mean. To my horror, I woke up from surgery actively tooting. I had absolutely no control over it! I tried to stop it but it wasn't happening. And guess who was standing at the end of my gurney in the recovery room? My anesthesiologist. I don't know if he heard them or not. At the time it seemed like I was blowing a trumpet but I don't think it was really that bad. Luckily there was no odor that I know of anyway.
Let's fast forward to last year. As I discussed before, I had pancreatitis in November and December. I didn't eat for about three weeks except for bananas and dry toast occasionally. I needed emergency surgery the beginning of December. The hospital food was the only thing that I had eaten in weeks and apparently my stomach and bowels weren't too happy about it. If I recall correctly, I was waiting for my husband to bring our son for a visit and I had fallen asleep listing to music. Suddenly I woke up in a panic wondering where I was and I started having severe stomach cramps. I grabbed my body spray out of my bag because I knew it was going to be a doozy and ran into the bathroom in my room. As I was having explosive diarrhea, I was literally hoping and praying that the other patients near my room couldn't hear what was happening in that bathroom.
So I finished up my business, washed my hands and sprayed the good smelling body spray. I walked out of the bathroom feeling better but was surprised to see my doctor right by the bathroom door waiting for me. I was mortified! I literally screamed when I saw him and of course that gave him a chuckle. I clutched the body spray against my chest like it was my life preserver. I kept wondering how long was he standing there and why couldn't he have come back later to check on me when he saw the bathroom door closed?!? To this day I don't know if he heard anything or not but it was hard for me to look him in the eye the next time I saw him. Yes I know doctors are used to this kind of thing but still... MORTIFIED!
Lastly my fellow hydrocephalic friend called me the night before my surgery on April 3rd. I thought she was calling to wish me luck. She asked what I was doing and I mentioned that I just got done with my antibacterial shower. She asked why I was doing that and I explained that as she knows, we have to do an antibacterial shower the night before and morning of surgery. She was confused and said that my surgery was the next week. I said no, it's tomorrow. Then she asked if I was sure and we both cracked up. I'm starting to think that having a good friend with a memory just as bad as mine will be quite fun over the years.
Well I hope this post gave you a chuckle. At the time some of this occurred, laughter was the last thing on my mind but it's funny now. If you can't laugh at the embarrassing things your bowels do to you, what can you laugh at?
Friday, May 8, 2015
Transitioning from a pediatric to an adult neurosurgeon
I don't know about other neurological patients, but I really struggled and still do struggle with transitioning from a pediatric to an adult neurosurgeon. There is a difference in care.
When I was growing up, my pediatric neurosurgeon always told my parents to take me to the emergency room if I had signs of a shunt malfunction. Then he would meet us there. Now if I go to the emergency room and they aren't certain what is wrong, they tell me to follow up with my neurosurgeon. So I stopped going to E.R. unless I am bleeding or leaking CSF out of my head which has happened many times in the past year. One of those times when I was gushing CSF out my head, the on-call surgeon decided that the E.R. physician should staple my head and then send me home to follow up with my doctor. What they should have done was do exploratory surgery that night.
Since I don't go to E.R. as often I have to make an appointment with the office. I can't always see my surgeon though. A lot of the time I see a physician's assistant. When I was growing up I never saw one. If my surgeon wasn't available I saw one of his colleagues. I know physician's assistants can be very helpful but in my case sometimes they give me the wrong information or have made me wait longer than I should have which made matters worse.
When you become an adult they don't seem to have such an urgency to treat you. I've actually had to wait a month or longer for surgery and sometimes months to even get in to see someone. Treating hydrocephalus is very common among pediatric neurosurgeons. Adult neurosurgeons treat people with neck injuries, do back surgery, remove brain tumors, etc. Hydrocephalus doesn't seem to be high on their list of ailments to treat.
Brain surgery is scary for anyone at any age. As I stated before, my pediatric neurosurgeon was very comforting. Since I've had this condition my entire life, people act like I should just be "used" to it. No. You never get used to this. In fact when you find out you need yet another revision, all the pain and trauma from all the other surgeries come back. You know what to expect and you don't want to do it again and again and AGAIN. Seems like there is a lack of compassion when you become an adult. But adults need compassion and comfort as well.
Also when you have that emergency in the middle of the night or on the weekend, you get whoever is on call. As a child you see your surgeon unless he or she is out of town. That is probably the most difficult aspect for me to deal with. It is extremely hard to trust someone you don't know to operate on your brain. Especially in my case because I have slit ventricles.
But I have to say I am blessed to have my current neurosurgeon. He has come in on the weekends several times, is scheduling the next surgery when he is on call and is very comforting.
Not everybody may share the same experiences as me. I am just one in millions but I still wanted to share my experience in case any parents with young children were having questions about it. If you have any more questions feel free to ask me. I will admit that I am a sensitive person so I may take these experiences harder than someone else would.
Also a warning to all you young neurological patients out there-the first time you sign your consent for surgery may be very unnerving. My mom was always the one who signed the consent when I was growing up. The first time I had to sign it, I cried. I kept thinking what if I don't make it and I just signed my life away?! To be honest I still cry when I have to sign them just because I don't want another revision.
The important thing to remember as a patient is that you know your body better than anyone else. If you know something is wrong and you aren't getting the help that you need, get a second opinion. Make yourself heard until they do something about it. You will have to be an advocate for yourself. If you are lucky you will get a surgeon who trusts that you know what you are talking about if you've had the condition your entire life. Just know that you are not alone.
When I was growing up, my pediatric neurosurgeon always told my parents to take me to the emergency room if I had signs of a shunt malfunction. Then he would meet us there. Now if I go to the emergency room and they aren't certain what is wrong, they tell me to follow up with my neurosurgeon. So I stopped going to E.R. unless I am bleeding or leaking CSF out of my head which has happened many times in the past year. One of those times when I was gushing CSF out my head, the on-call surgeon decided that the E.R. physician should staple my head and then send me home to follow up with my doctor. What they should have done was do exploratory surgery that night.
Since I don't go to E.R. as often I have to make an appointment with the office. I can't always see my surgeon though. A lot of the time I see a physician's assistant. When I was growing up I never saw one. If my surgeon wasn't available I saw one of his colleagues. I know physician's assistants can be very helpful but in my case sometimes they give me the wrong information or have made me wait longer than I should have which made matters worse.
When you become an adult they don't seem to have such an urgency to treat you. I've actually had to wait a month or longer for surgery and sometimes months to even get in to see someone. Treating hydrocephalus is very common among pediatric neurosurgeons. Adult neurosurgeons treat people with neck injuries, do back surgery, remove brain tumors, etc. Hydrocephalus doesn't seem to be high on their list of ailments to treat.
Brain surgery is scary for anyone at any age. As I stated before, my pediatric neurosurgeon was very comforting. Since I've had this condition my entire life, people act like I should just be "used" to it. No. You never get used to this. In fact when you find out you need yet another revision, all the pain and trauma from all the other surgeries come back. You know what to expect and you don't want to do it again and again and AGAIN. Seems like there is a lack of compassion when you become an adult. But adults need compassion and comfort as well.
Also when you have that emergency in the middle of the night or on the weekend, you get whoever is on call. As a child you see your surgeon unless he or she is out of town. That is probably the most difficult aspect for me to deal with. It is extremely hard to trust someone you don't know to operate on your brain. Especially in my case because I have slit ventricles.
But I have to say I am blessed to have my current neurosurgeon. He has come in on the weekends several times, is scheduling the next surgery when he is on call and is very comforting.
Not everybody may share the same experiences as me. I am just one in millions but I still wanted to share my experience in case any parents with young children were having questions about it. If you have any more questions feel free to ask me. I will admit that I am a sensitive person so I may take these experiences harder than someone else would.
Also a warning to all you young neurological patients out there-the first time you sign your consent for surgery may be very unnerving. My mom was always the one who signed the consent when I was growing up. The first time I had to sign it, I cried. I kept thinking what if I don't make it and I just signed my life away?! To be honest I still cry when I have to sign them just because I don't want another revision.
The important thing to remember as a patient is that you know your body better than anyone else. If you know something is wrong and you aren't getting the help that you need, get a second opinion. Make yourself heard until they do something about it. You will have to be an advocate for yourself. If you are lucky you will get a surgeon who trusts that you know what you are talking about if you've had the condition your entire life. Just know that you are not alone.
Thursday, April 30, 2015
What hydrocephalus has taught me
Hydrocephalus has taught me and my family physical, emotional, and financial hardships, disappointment, and heartache. Lots of heartache. But it has taught us so much more than that.
Sometimes I look at my son and wonder if he will resent me because he had to grow up a little faster and has had a harder life than most kids his age. But then I realized that having a mother with a chronic medical condition has been a blessing to him. He is one of the most caring, empathetic kids I have ever met. Also he is very accepting of everyone. He is not afraid of other kids that may look or act different than him. Instead he wants to know how he can help them. Every time he finds money on the ground or around the house he hands it to me and says to give it to hydrocephalus research because he wants everyone to be cured of it. He tells me all the time that he wants me and all my hydro friends to never have surgery again.
Because I often can barely take care of myself, I had to teach my son early on how to take care of himself. He can prepare his own breakfast and lunch and knows how to do many chores around the house. He truly is a great help to me sometimes. Although it saddens me that he needs to have so much responsibility at his age, but I know it is good for him. I think this will make him a great husband someday.
Also I think a lot of people try to shelter their kids from disappointment. Why? Life is full of disappointments. My son has learned that from having me as a mother. I can't even begin to tell you how many plans we had to change or just completely cancel because of my illness. Sometimes my son gets very frustrated as any child would but most of the time he is understanding. He is learning that life does not always work out the way we want or plan.
I have seen a significant change in my husband from when we first met. He now has empathy for others. (I truly mean EMPATHY not SYMPATHY. There is a big difference and I firmly believe we need more empathy in this world.) Whenever my husband hears about a colleague or friend being in the hospital he is one of the first people to visit and offering to help. Honestly I think he worries about my good friend Stephanie who also has hydro just as much as he worries about me and that pleases me. Also he has never said "but at least" to me when it comes to this condition. Instead he acknowledges how difficult the situation is and wants to know how he can help.
Hydrocephalus has taught me so much as well. Often I think why me and get very frustrated with life and other times I see it as a blessing. Having it has taught me to be very grateful for everything including the little things in life. People are constantly telling me what I should be thankful for and they really shouldn't. I am probably more thankful than the average person. I cherish each birthday probably more than the average person as well. I see each new year as an accomplishment for me and it should be celebrated. Also I don't take anything for granted.
Having this condition has also taught me empathy, kindness, forgiveness and has made me a strong person. All I ever wanted to do in life was be a writer. All the trauma that I have been going through since the beginning of 2014 finally gave me the courage to write. Now I have this blog that is hopefully still helping others and has been therapeutic to me. Whenever I get better, I hope to finish that children's book and then write a novel. I'm not sure if I would have had the courage to do this a year ago.
Although I don't enjoy having this condition whatsoever, I am not convinced that I would be the same person that I am today if I didn't acquire it at birth. I may not have met some of the wonderful people that share this affliction with me. Additionally I may not have seen true caring human nature if it wasn't for some of the medical providers that have crossed my path through the years.
So readers I hope hydrocephalus has now taught you something. Be kind to others, have empathy, and if you are blessed enough to be healthy then live every day like it's your last. Life goes by so quickly and is too short. You all know what I'd be doing if I could-I'd be dancing! Get out there and dance like no one is watching you.
If this blog has helped you in some way, please share that with me in the comment section. I would love to hear from you. Helping others with this blog means so much to me and I want to know if it is working. Thank you for reading!!!
Sometimes I look at my son and wonder if he will resent me because he had to grow up a little faster and has had a harder life than most kids his age. But then I realized that having a mother with a chronic medical condition has been a blessing to him. He is one of the most caring, empathetic kids I have ever met. Also he is very accepting of everyone. He is not afraid of other kids that may look or act different than him. Instead he wants to know how he can help them. Every time he finds money on the ground or around the house he hands it to me and says to give it to hydrocephalus research because he wants everyone to be cured of it. He tells me all the time that he wants me and all my hydro friends to never have surgery again.
Because I often can barely take care of myself, I had to teach my son early on how to take care of himself. He can prepare his own breakfast and lunch and knows how to do many chores around the house. He truly is a great help to me sometimes. Although it saddens me that he needs to have so much responsibility at his age, but I know it is good for him. I think this will make him a great husband someday.
Also I think a lot of people try to shelter their kids from disappointment. Why? Life is full of disappointments. My son has learned that from having me as a mother. I can't even begin to tell you how many plans we had to change or just completely cancel because of my illness. Sometimes my son gets very frustrated as any child would but most of the time he is understanding. He is learning that life does not always work out the way we want or plan.
I have seen a significant change in my husband from when we first met. He now has empathy for others. (I truly mean EMPATHY not SYMPATHY. There is a big difference and I firmly believe we need more empathy in this world.) Whenever my husband hears about a colleague or friend being in the hospital he is one of the first people to visit and offering to help. Honestly I think he worries about my good friend Stephanie who also has hydro just as much as he worries about me and that pleases me. Also he has never said "but at least" to me when it comes to this condition. Instead he acknowledges how difficult the situation is and wants to know how he can help.
Hydrocephalus has taught me so much as well. Often I think why me and get very frustrated with life and other times I see it as a blessing. Having it has taught me to be very grateful for everything including the little things in life. People are constantly telling me what I should be thankful for and they really shouldn't. I am probably more thankful than the average person. I cherish each birthday probably more than the average person as well. I see each new year as an accomplishment for me and it should be celebrated. Also I don't take anything for granted.
Having this condition has also taught me empathy, kindness, forgiveness and has made me a strong person. All I ever wanted to do in life was be a writer. All the trauma that I have been going through since the beginning of 2014 finally gave me the courage to write. Now I have this blog that is hopefully still helping others and has been therapeutic to me. Whenever I get better, I hope to finish that children's book and then write a novel. I'm not sure if I would have had the courage to do this a year ago.
Although I don't enjoy having this condition whatsoever, I am not convinced that I would be the same person that I am today if I didn't acquire it at birth. I may not have met some of the wonderful people that share this affliction with me. Additionally I may not have seen true caring human nature if it wasn't for some of the medical providers that have crossed my path through the years.
So readers I hope hydrocephalus has now taught you something. Be kind to others, have empathy, and if you are blessed enough to be healthy then live every day like it's your last. Life goes by so quickly and is too short. You all know what I'd be doing if I could-I'd be dancing! Get out there and dance like no one is watching you.
If this blog has helped you in some way, please share that with me in the comment section. I would love to hear from you. Helping others with this blog means so much to me and I want to know if it is working. Thank you for reading!!!
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