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?
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!!
Monday, May 18, 2015
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!!!
Tuesday, April 21, 2015
A Special Place in my Heart
No one enjoys being in the hospital, but having compassionate medical providers can honestly make the stay more pleasant. In my lifetime of being in and out of hospitals and doctor's offices, many medical professionals have made a lasting impression on me.
The first medical provider that touched my heart was my pediatric neurosurgeon. The man was by no means perfect but who is? Everyone makes mistakes, even medical professionals. But he comforted me in the scariest moments of my life. He always checked on me just before I went to sleep for surgery and assured me that everything was going to be all right.
He also educated me on my condition and gave me material to read about it. Whenever I got frustrated he sat me down in his office and reminded me that he had shunt patients with 90+ surgeries. Lastly, he told me that I could be whatever I wanted in life except a flight attendant because of the elevation and pressure. He even said I could be a neurosurgeon just like him. That kind man took care of me for 18 years.
I can honestly say that I felt the same way about my regular pediatrician. He was very caring and went above and beyond when treating me.
In 2003 I had a shunt revision due to over-drainage. I had just been transferred to a new neurosurgeon because mine left the practice. I was transferred to a surgeon who was pediatric and adult. I just loved him because he kind of treated me like a child. I had a really hard time transitioning from pediatric to adult neurosurgery. (I will be talking about that in a future post.) He made me feel so calm and took my concerns seriously. He trusted me immediately because I had been shunted all my life. Did I mention that he was easy on the eyes? Just ask my mom...
In October I was assigned to a man with the same name as my husband in the recovery room. He was so soft spoken and seemed to genuinely feel empathy for what I was going through. I was assigned to him again when I had a shunt infection in December. He remembered me and said that he was glad to be taking care of me again. When he told me that the shunt was infected and had to be removed completely I started bawling because that meant another surgery once the infection in my head cleared. That man stood by my gurney, told me how sorry he was and acknowledged how horrible the situation was. Then he held my hand while I cried. I may have short term memory loss but he is already stored in my long term. I will never forget him.
I could go on and on about all the wonderful people that have taken care of me over the years. SO MANY nurses, physician's assistants, X-ray technicians and let's not forget my current neurosurgeon. I hope these people know how grateful I am that they all crossed my path. Thank you all so much.
Not every medical professional will treat you kindly. I've had a fair share of that experience as well. But I try to keep in mind that they are people that have bad days just like you or me. As I said before no one is perfect.
If you find yourself at the doctor's office or in the hospital be respectful to the medical professionals taking care of you. They work so very hard and have to deal with so many obstacles on a daily basis. If you come across one that took great care of you, take the time to call the doctor's office and/or hospital to let their supervisor know what a good job they are doing. They deserve to be recognized for their exceptional care. Also it wouldn't hurt to bring them some baked goods to brighten up their busy, hectic day.
The first medical provider that touched my heart was my pediatric neurosurgeon. The man was by no means perfect but who is? Everyone makes mistakes, even medical professionals. But he comforted me in the scariest moments of my life. He always checked on me just before I went to sleep for surgery and assured me that everything was going to be all right.
He also educated me on my condition and gave me material to read about it. Whenever I got frustrated he sat me down in his office and reminded me that he had shunt patients with 90+ surgeries. Lastly, he told me that I could be whatever I wanted in life except a flight attendant because of the elevation and pressure. He even said I could be a neurosurgeon just like him. That kind man took care of me for 18 years.
I can honestly say that I felt the same way about my regular pediatrician. He was very caring and went above and beyond when treating me.
In 2003 I had a shunt revision due to over-drainage. I had just been transferred to a new neurosurgeon because mine left the practice. I was transferred to a surgeon who was pediatric and adult. I just loved him because he kind of treated me like a child. I had a really hard time transitioning from pediatric to adult neurosurgery. (I will be talking about that in a future post.) He made me feel so calm and took my concerns seriously. He trusted me immediately because I had been shunted all my life. Did I mention that he was easy on the eyes? Just ask my mom...
In October I was assigned to a man with the same name as my husband in the recovery room. He was so soft spoken and seemed to genuinely feel empathy for what I was going through. I was assigned to him again when I had a shunt infection in December. He remembered me and said that he was glad to be taking care of me again. When he told me that the shunt was infected and had to be removed completely I started bawling because that meant another surgery once the infection in my head cleared. That man stood by my gurney, told me how sorry he was and acknowledged how horrible the situation was. Then he held my hand while I cried. I may have short term memory loss but he is already stored in my long term. I will never forget him.
I could go on and on about all the wonderful people that have taken care of me over the years. SO MANY nurses, physician's assistants, X-ray technicians and let's not forget my current neurosurgeon. I hope these people know how grateful I am that they all crossed my path. Thank you all so much.
Not every medical professional will treat you kindly. I've had a fair share of that experience as well. But I try to keep in mind that they are people that have bad days just like you or me. As I said before no one is perfect.
If you find yourself at the doctor's office or in the hospital be respectful to the medical professionals taking care of you. They work so very hard and have to deal with so many obstacles on a daily basis. If you come across one that took great care of you, take the time to call the doctor's office and/or hospital to let their supervisor know what a good job they are doing. They deserve to be recognized for their exceptional care. Also it wouldn't hurt to bring them some baked goods to brighten up their busy, hectic day.
Sunday, April 12, 2015
Update to the 25th Surgery
For the first three days after surgery I was pretty much unconscious. I slept all day and all night. Once I started sleeping less and being upright more, I noticed that my low pressure headaches came back. Along with my annoying eye twitch. When the headaches are at a 10 on the pain scale, I have trouble walking. Basically I am back to laying down all day.
Initially, the returning symptoms devastated me. But then it dawned on me. Maybe this is a good thing. Maybe something good is finally going to come out of all this insanity.
Today I had my stitches removed. Although I wasn't scheduled to see my doctor, he came in to see how I was doing. I am going to have another CT scan within the next two weeks and then I will see him in about a month. We pretty much have a game plan set and this does include surgery again but if this works, this may be the last one for a very long time. I don't want to reveal too much until he and I can talk about it more but I am very hopeful that this is going to work.
I do need to clear something up. Recently people have been telling me that my husband told them I was fine after surgery and they seemed very shocked that the symptoms returned. The day of surgery I was so sick that I only got out of bed to use the restroom. I did walk the halls the next day before leaving the hospital but after that I was unconscious for three days. It wasn't until after I was up and around after being asleep for three days that I noticed the symptoms were back. So I am not convinced that the surgery ever really worked in the first place. Besides, sometimes it takes awhile for the anesthesia and pain medication to get out of your system. You may feel better than you really are. I think all of us, including myself, really kind of jumped the gun on this one because we were hopeful that it would work. I think it's best to wait a few days before giving updates and letting people know how I am doing.
Also it's hydrocephalus. Things can change at any time.
So stay tuned for updates in the future. Also I have plans to write more articles to talk about my journey thus far and spread more awareness. Thank you for reading.
Initially, the returning symptoms devastated me. But then it dawned on me. Maybe this is a good thing. Maybe something good is finally going to come out of all this insanity.
Today I had my stitches removed. Although I wasn't scheduled to see my doctor, he came in to see how I was doing. I am going to have another CT scan within the next two weeks and then I will see him in about a month. We pretty much have a game plan set and this does include surgery again but if this works, this may be the last one for a very long time. I don't want to reveal too much until he and I can talk about it more but I am very hopeful that this is going to work.
I do need to clear something up. Recently people have been telling me that my husband told them I was fine after surgery and they seemed very shocked that the symptoms returned. The day of surgery I was so sick that I only got out of bed to use the restroom. I did walk the halls the next day before leaving the hospital but after that I was unconscious for three days. It wasn't until after I was up and around after being asleep for three days that I noticed the symptoms were back. So I am not convinced that the surgery ever really worked in the first place. Besides, sometimes it takes awhile for the anesthesia and pain medication to get out of your system. You may feel better than you really are. I think all of us, including myself, really kind of jumped the gun on this one because we were hopeful that it would work. I think it's best to wait a few days before giving updates and letting people know how I am doing.
Also it's hydrocephalus. Things can change at any time.
So stay tuned for updates in the future. Also I have plans to write more articles to talk about my journey thus far and spread more awareness. Thank you for reading.
Tuesday, April 7, 2015
I survived 25
I thought that I was mentally prepared for my 25th surgery. But when I stepped into the pre-op area, the trauma of the past few years came at me like a 10 foot wave. I felt like I was slapped in the face and knocked to the floor.
My head was pounding that morning so I laid flat in pre-op and listened to music on the I-pod until it was time to take me back. I had two nurses that had taken care of me in October and they remembered me! They were both really sweet. I asked the hospital if I could walk into surgery but they said no because of chemicals they put on the floor.
When it was time for them to take me back, the tears started flowing and they didn't stop. It just broke my heart that I was having surgery again after having two less than four months ago. And I was in no better shape than I was in October when all this hell started so I basically went through all this for nothing.
The anesthesiologist met me at the operating room door to give me something for anxiety. It didn't really help though. He also let me take my I-pod into the operating room which was very nice. That didn't help much either. I literally cried myself to sleep on the operating table.
I spent about 45 minutes in recovery and then was taken back to my room. The first time I got up to use the restroom I realized that my low pressure headaches were gone. I no longer felt like my brain was constantly being squeezed. I also realized that I was no longer having trouble walking. Turns out that wasn't caused by the brain bleed at all. It was a side effect of being over-drained. That is really scary when you think about it. I was so close to having some serious damage to my body.
Shortly after I got to my room, I started feeling very nauseous. I pretty much sat up with my head over a bucket for the majority of my hospital stay. That nausea went on and off for about three days. It was so bad that I actually sent my husband and son home Friday night. I didn't want my son to see me like that.
My blood sugar level had to be checked regularly because it was high during a routine blood test recently and high at the hospital. I needed to have one injection of insulin. They did a blood test at the hospital where they could check my levels over a three month period. The levels were normal during the three month period and went back to normal during my stay so I don't have to worry about it anymore.
I had a great over-night nurse. She kept me company when I couldn't sleep and took good care of me.
The next morning my doctor came in to check on me and then I was released. I have been pretty much sleeping ever since. I feel like my mind and body are fatigued. My incision is really swollen so I am feeling a lot of pain. I did have some pressure headaches initially but they seem to be gone now.
I really wanted to dance with my surgical team but when I realized that wasn't happening, I thought I could dance with my doctor in my room. But I was so sick that I couldn't make my dance video with him or with my husband. We were also supposed to take a family photo in the hospital but that didn't happen either. My husband keeps reminding me that at least I am still alive. Yes that's true but 25 surgeries is a big deal. They are traumatizing in case people can't tell. I just wanted to celebrate that I have survived that many and do something that makes me happy. I'm sorry but it does make me sad that I couldn't do any of the things that I had planned. I still want to ask my doctor if we can make our video at a later date.
So now that it's all over, I have a lot of healing to do physically, mentally and emotionally. And I will be doing it on my terms, in my time. I will not be in a big hurry to recover just so I can get out and do things this summer. Rushing recovery could only cause a setback. I am going to take as long as my body needs. I have pretty much been laying down for three years so it is going to take a long time to get my stamina back. The only thing I am concerned about is getting to CA this summer to see my family, friends, and meet my niece. That is what matters right now.
Thank you every one for reading this and supporting me. Also a big thank you to all my friends that are taking my son different places during his spring break this week.
Trying to get my headache under control prior to surgery.
Feeling so sick after surgery. This is what these surgeries are really like.
My head was pounding that morning so I laid flat in pre-op and listened to music on the I-pod until it was time to take me back. I had two nurses that had taken care of me in October and they remembered me! They were both really sweet. I asked the hospital if I could walk into surgery but they said no because of chemicals they put on the floor.
When it was time for them to take me back, the tears started flowing and they didn't stop. It just broke my heart that I was having surgery again after having two less than four months ago. And I was in no better shape than I was in October when all this hell started so I basically went through all this for nothing.
The anesthesiologist met me at the operating room door to give me something for anxiety. It didn't really help though. He also let me take my I-pod into the operating room which was very nice. That didn't help much either. I literally cried myself to sleep on the operating table.
I spent about 45 minutes in recovery and then was taken back to my room. The first time I got up to use the restroom I realized that my low pressure headaches were gone. I no longer felt like my brain was constantly being squeezed. I also realized that I was no longer having trouble walking. Turns out that wasn't caused by the brain bleed at all. It was a side effect of being over-drained. That is really scary when you think about it. I was so close to having some serious damage to my body.
Shortly after I got to my room, I started feeling very nauseous. I pretty much sat up with my head over a bucket for the majority of my hospital stay. That nausea went on and off for about three days. It was so bad that I actually sent my husband and son home Friday night. I didn't want my son to see me like that.
My blood sugar level had to be checked regularly because it was high during a routine blood test recently and high at the hospital. I needed to have one injection of insulin. They did a blood test at the hospital where they could check my levels over a three month period. The levels were normal during the three month period and went back to normal during my stay so I don't have to worry about it anymore.
I had a great over-night nurse. She kept me company when I couldn't sleep and took good care of me.
The next morning my doctor came in to check on me and then I was released. I have been pretty much sleeping ever since. I feel like my mind and body are fatigued. My incision is really swollen so I am feeling a lot of pain. I did have some pressure headaches initially but they seem to be gone now.
I really wanted to dance with my surgical team but when I realized that wasn't happening, I thought I could dance with my doctor in my room. But I was so sick that I couldn't make my dance video with him or with my husband. We were also supposed to take a family photo in the hospital but that didn't happen either. My husband keeps reminding me that at least I am still alive. Yes that's true but 25 surgeries is a big deal. They are traumatizing in case people can't tell. I just wanted to celebrate that I have survived that many and do something that makes me happy. I'm sorry but it does make me sad that I couldn't do any of the things that I had planned. I still want to ask my doctor if we can make our video at a later date.
So now that it's all over, I have a lot of healing to do physically, mentally and emotionally. And I will be doing it on my terms, in my time. I will not be in a big hurry to recover just so I can get out and do things this summer. Rushing recovery could only cause a setback. I am going to take as long as my body needs. I have pretty much been laying down for three years so it is going to take a long time to get my stamina back. The only thing I am concerned about is getting to CA this summer to see my family, friends, and meet my niece. That is what matters right now.
Thank you every one for reading this and supporting me. Also a big thank you to all my friends that are taking my son different places during his spring break this week.
Feeling so sick after surgery. This is what these surgeries are really like.
Monday, March 30, 2015
Recovery
Since I am just four days away from my 25th surgery, I thought I would share some of the ways that I recover after surgery.
First and foremost I need to sleep! Resting is the best way for the brain to heal after brain surgery.
Although rest is essential, I make sure that I take a couple of walks a day. Walking is an important part of recovery.
Of course I love listening to music. I always take my I-Pod to the hospital so I can listen to a special play list before they take me into the operating room. Then I have the hospital give me the I-Pod so I can listen to it in the recovery room. Once I get home Pandora is usually playing on the television.
When I am not listening to music, sometimes I enjoy watching movies. Mainly comedies but sometimes the kid in me still likes to watch Disney movies. I have already told my son that we need to have a Disney marathon one of the days he is home on spring break.
I am an avid reader. Once I have given my brain enough time to heal so I can concentrate, I will read a book. I love mysteries, detective novels, and horror. Sometimes it takes me awhile to get through a book because my memory is so bad and I often have to re-read pages.
When I was a kid I always wanted banana Popsicles at the hospital. The hospital that I use now doesn't carry them. We often go on an odyssey to find banana Popsicles but when we do it's like heaven to me.
I enjoy doing word finds so I work on those when I don't have blurry vision.
I am a chocoholic and usually want some after surgery. Just a little of course because it is important to eat healthy after surgery and drink plenty of water.
I make sure to keep my incisions clean and dry. I clean anything that I lay my head on frequently.
That about covers it. What are some of the things you like to do or have after surgery?
First and foremost I need to sleep! Resting is the best way for the brain to heal after brain surgery.
Although rest is essential, I make sure that I take a couple of walks a day. Walking is an important part of recovery.
Of course I love listening to music. I always take my I-Pod to the hospital so I can listen to a special play list before they take me into the operating room. Then I have the hospital give me the I-Pod so I can listen to it in the recovery room. Once I get home Pandora is usually playing on the television.
When I am not listening to music, sometimes I enjoy watching movies. Mainly comedies but sometimes the kid in me still likes to watch Disney movies. I have already told my son that we need to have a Disney marathon one of the days he is home on spring break.
I am an avid reader. Once I have given my brain enough time to heal so I can concentrate, I will read a book. I love mysteries, detective novels, and horror. Sometimes it takes me awhile to get through a book because my memory is so bad and I often have to re-read pages.
When I was a kid I always wanted banana Popsicles at the hospital. The hospital that I use now doesn't carry them. We often go on an odyssey to find banana Popsicles but when we do it's like heaven to me.
I enjoy doing word finds so I work on those when I don't have blurry vision.
I am a chocoholic and usually want some after surgery. Just a little of course because it is important to eat healthy after surgery and drink plenty of water.
I make sure to keep my incisions clean and dry. I clean anything that I lay my head on frequently.
That about covers it. What are some of the things you like to do or have after surgery?
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