The Next Step...

My neurosurgeon had a very difficult time trying to find someone to treat me.  He called all over the Portland area and everyone turned me down.  Finally another provider in his office that hadn't met me yet agreed to see me.

Upon meeting him, he said that he didn't think he could help me or anyone else for that matter.  He said that they are seeing this kind of situation in patients that have been shunted for life.  Their ventricles basically shrink up and become non-pliable because the CSF is being taken out unnaturally.  He also noted that because of the condition my ventricles are in now, I will feel any bit of difference in pressure within my brain and the environment.  I need something called a smart shunt but they haven't been invented yet and may not be ready for patients for many, many years.

He did run some tests but didn't see anything new.  He suggested that I move back to CA because I had so many less problems there and the barometric pressure is different than where I live now. He thinks I am very sensitive to barometric pressure changes. The weather is much more constant and stable where I grew up. Then he basically wished me luck and sent me on my way.

I immediately spoke to my ex-husband about this.  He has agreed to let my son and I stay in CA for most of the summer to see if I feel better there.  I have to stay in Washington long enough to see my neurologist and get my optic nerves checked again at the beginning of July and then we will be on our way.

Since that neurosurgeon brought this to my attention, I have been checking the barometric pressure daily on my phone and have been keeping track of the headaches.  In just a month and a half I have determined that I am in horrific pain and have more vomiting when the pressure is above 30 hg (whatever that means).  Also when my son and I were visiting in CA over Christmas break we were in an earthquake and I knew something was about to happen before it started.  I got extremely dizzy and the headache intensified.  So I think the surgeon is on to something.

This past mother's day I went to CA.  Although my headaches weren't better in the 3 short days I was there, I did notice some other changes.  I didn't have any vomiting.  Also on my shunt side, my left ear has been making a whooshing sound and ringing noise in it for about a month.  That stopped while I was in CA and my first night back in Washington it started back up again and continues to this day.

I am counting down the days until we leave. The thought of being around my family, my support system, for 44 days just brings a smile to me and my son's face. I am pretty sure our family is counting down the days as well.

I am also very, VERY excited about the possibility of feeling better.  I want to really start living life again.  Right now I am just going through the motions.  So my California family and friends let's finish some dance videos, do some book parties, go on some outings and spend some quality time together. Oh and to my nephew-I will read many, many books to you because I will have plenty of time.  How fantastic is that?!?!  So get ready California!

Update to the 28th Surgery

The last surgery that I had on January 22nd didn't work.  I felt decent for ten days and then my health began to decrease steadily.  On Friday evening I saw my neurosurgeon and he ordered a CT Scan.  It came as a shock to both of us to see that all the ventricles in my brain are collapsed.  At this point he is out of options and is referring me to a surgeon that specializes in shunts.  This is being done STAT as this is a dangerous situation.

This news makes me sad because my surgeon has been a big support system to me for 7 years and well, very angry.  I am beyond frustrated that so many of my friends with hydrocephalus are also suffering and going through endless surgeries.  I am tired of feeling horrible day in and day out and going through surgeries with little to no relief.  I am also tired of having to put my life on hold and watching everyone around me living their lives.  I WILL NOT allow hydrocephalus to take things from me anymore!  I am going to use this anger as a driving force to restart my life.  I have an incredibly wonderful boy to raise and a sweet little girl to take care of during the week (just think she likes to dance just as much as I do).  I also need to start my new career path as a consultant for Usborne Books and More.  For now on I am just going to do more while being sick.  I know some days I won't physically be able to do that but I want to try harder.

So friends and family please continue to be patient with me if I have to rest when we are out or if I become very quiet because I am in excruciating pain.  Thank you for all the support you have all given me and for being willing to make the dance videos with me.  I have had a blast making them so far.  When I am homesick, which honestly is daily, I watch some of the videos that I made during my visit to California over Christmas.

Also I will not stop fundraising and spreading awareness about hydrocephalus.  There has been little advancement in treatment since the 50's.  This is just not acceptable to me or any of my fellow warriors.  Stay tuned for more updates about the health situation and hopefully more positive changes in my personal life.  Truthfully I am a bit frightened but I have to stay hopeful that things will change for all of us.

Loosing my vision

As most of my readers know, when my shunt was tied off for three months over the summer I almost lost my vision.  That was an extremely terrifying time in my life.  I think it's time that I wrote about it in case it may help someone else.

I first noticed that something was wrong with my vision when I would see squiggly lines along the outside of both eyes.  Then I started seeing spots and flashes of light.   But it didn't stop there.

One night I was getting ready for bed and suddenly a rather large black bird appeared in the corner of my room and was fluttering towards the ceiling.  I nearly fell out of bed in shock.  The only other person in the house with me was my 8 year old son.  I remember thinking how in the world am I going to get this huge bird out of the house by myself and how did it get in there in the first place? Just as I was about to spring into action, it disappeared.  This went on nightly for several weeks.

Those black birds scared me each time they appeared.  They seemed to be taunting me as they flapped their wings in the corner of the room.  At first I thought I was loosing my mind from the stress of an impending divorce and being incredibly sick.  Then it was determined that I had pressure on my optic nerve and seeing imaginary birds was just a side effect of that.

It got to the point that I was loosing vision so rapidly that I had to stop driving temporarily.  This was unfortunate because this took place over the summer and my son and I were stuck in the house all day.  Walking wasn't any safer either.  At that time I was switching between having to use a cane and a walker.  We couldn't even walk to the park that is just up the road.

At times I would see strange things out of my peripheral vision.  Almost like someone was approaching me or something was being thrown at me.  It started to feel like I was living one of the many horror films that I have watched over the years  I was seeing things that weren't there!

Sometimes at night the only thing I could see was white light.  I couldn't even see my hand in front of my face.  I had such a difficult time maneuvering through my house.  At times I would just go to my room shortly after putting my son to bed because I figured it was safer that way.

I almost can't put into words how frightened I was over this whole ordeal.  All I could think of was that I literally wouldn't see my son grow up, I would never see the moon again, or a beautiful sunset.  Instead I would be engulfed in darkness or possibly just white light.  Thankfully surgery was scheduled on a rush basis and we were able to reverse most of the affects of the swollen optic nerve.  I did loose part of my vision in my right eye.  They think I lost it permanently but we won't know for certain until I go back for more diagnostic testing in March.

When I had increased pressure just over the past few months, I started seeing the spots again and towards the very end the birds.  I never saw the squiggly lines so hopefully no more damage has been done.

I am very fortunate that I had such a favorable outcome.  I can still see that adorable smile on my son's face and I got to see the gorgeous full moon over Christmas.   I feel very blessed that I never seriously hurt myself when I was fumbling around the house either.

When you have a neurological condition vision changes are not something that you should take lightly.  If anything out of the ordinary is happening be sure to be checked out immediately.

How Nurses Can Help Their Patients

When I was hospitalized for over a week back in May of 2015, one of my wonderful nurses asked me to write a blog post about how nurses can help their patients better.  I wrote this idea down in my book of notes I keep for this blog but have had such a hard time coming up with ideas.  Honestly most of my experiences with nurses in 37 years of being in and out of hospitals have been amazing.  But I have had a few occasions that were not so pleasant.  Some of the aspects I am going to write about in this post pertain to people with hydrocephalus solely and other aspects can pertain to anyone.

During the hospital stay that I just referenced to, I had a nurse treat me like I was dealing with a migraine and not a shunt malfunction.  She refused to let me have visitors, I couldn't listen to music, or watch TV and she turned off all the lights in my room.  Some people with hydrocephalus do suffer from migraines  but I am not one of those people. Besides that a shunt malfunction is not like a migraine.  You don't typically have a sensitivity to light and sound.  So if I tell you that I am not dealing with a migraine please believe me.

During a hospital stay I had in October of 2014, a nurse in ICU would not let me get out of bed at all.  I had to use the facilities at bedside.  I pleaded with her to just let me get up and walk to the bathroom which was literally a few feet from my bed to see if I even could walk because I just had a brain bleed during surgery.  I knew my doctor would not let me go home unless he knew I could walk.  The nurse kept telling me that the patient in the room across from mine got anxiety every time she came to check on me so she didn't have time to get me out of bed.  Luckily my surgeon came to my rescue and demanded that she let me walk the halls or else I wouldn't be able to go home.  Kids can't visit patients in ICU so the sooner I was out of there the better.

I don't think what that nurse told me was very professional.  She should have asked for additional assistance because she knew that the criteria for going home after a shunt revision is being able to use the restroom, keep food down, and being able to walk.

One thing I really like is when a nurse seems very caring and will ask me personal questions about my life when he or she can tell that I am feeling overwhelmed.  I find that it just shows so much compassion when they really take an interest in what you are going through.  For instance, when I had my latest shunt revision on January 22nd, I had many of the same nurses in the pre-op area.  Every single one of them remembered me, told me that they had been thinking about me and could even remember what my favorite band is.  I thought that was incredibly sweet and kind of amazing considering all the people that they treat day in and day out.

Basically I think patients just desire to be treated like a human beings and not just a number.  At least I do.  Being in the hospital is terrifying and painful, and well, sad.  It helps knowing that your health care professionals truly care about you.

Keep asking us what you can do to make our stay more pleasant, have patience with us, take our concerns seriously, be our personal cheerleaders by encourage us to get out of that bed, and please don't detour visitors from coming if they are allowed.  Sometimes nothing brightens a patients' day more than a visit from that special someone.

To all you hardworking nurses out there-please know that you are very much appreciated!  Thank you for your exceptional care throughout the years!  I can only imagine how difficult your job is and I have the utmost respect for you all.

28th Surgery

After my last surgery at the end of August, I only felt good for about a month.  At the beginning of October, my pressure headaches returned along with vomiting, blurry vision, and seeing spots.  I sometimes have trouble walking again and now I am having dizzy spells.

My surgeon reached out to me at the beginning of December and said that he wanted me to come in but he was booked until the first week of January.  That actually pleased me because it meant my son and I could still visit our family in California over his winter break.  I knew traveling would be difficult on me but I also knew that it would be well worth it.  We would be cared for.

We didn't get to do as much as we would have liked, but honestly it didn't matter.  We really enjoyed being around our family.  We were there for two weeks and it was like time stopped.  I FINALLY met my nine month old niece/goddaughter and we got to spend quality time with my nephew.  I was even blessed to have spent time with my friend and my godson.  And I made several dance videos.  It couldn't have been more perfect!

Then it was time to leave.  We enjoyed our time so much with everyone that it was harder than normal to say see you later. I may have caused a bit of a scene outside of an IHOP saying bye to my brother.  Oops.

The flight from Southern CA to my house is two hours and fifteen minutes and I cried the whole time.  I cried until 2 am that morning on my hands and knees on the floor while my son was with his dad overnight.  Of course that made the pressure incredibly worse.  I couldn't even function the next day.  I kept thinking about how much I already missed my family and how I was missing out on so much of their lives and they are missing out on ours.  I won't see my niece take her first steps and let me tell you she is really close.   My nephew seems to have grown up over night and so has my godson.  My son is missing out on quality time with his cousins, aunts, uncle, grandparents, and great-grandparents. I understand that families move apart but it's been ten years since I left and it has not gotten any easier.  Especially while dealing with hydrocephalus on top of everything.

A few days after we returned, I had my appointment to see my neurosurgeon.  He has decided to change the abdominal valve for a lower pressure one.  Also it will be moved to my chest or neck.  This is an outpatient procedure that will be done on January 22nd.  I am dreading going back into the operating room for what will be my 28th surgery, but I am really hoping this does the trick for longer than a month because my son and I have lots of traveling to do even if it's just short weekend trips.  We want to be more present in the lives of our family and friends.

I still have dance videos to make with people around the country and I am determined to make that happen one way or another.  I don't know what my future holds for me.  What I do know is that after I have recovered from this next surgery, I am going to work on accomplishing some goals and do some soul searching.

So a big hug and thank you to all our family and friends in Southern CA.  We loved the time we spent with you all and we appreciate you taking such good care of the two of us.  Hoping to see you sooner rather than later!

Preggo Hydro

Since I can remember, I have wanted to be an author and a mother.  Eight years ago I was blessed with a son.

Getting pregnant wasn't easy but not for the reason you would expect.  I have Polycystic Ovary Syndrome.  Since this causes irregular cycles and sometimes a lack of ovulation, I had a difficult time getting pregnant.

When I was trying to conceive for six years, I started researching how pregnancy could affect my hydrocephalus and vice versa.  Unfortunately I found little to no information on the subject.  Today I would like to share my experience and what I learned in hopes of helping someone else who may be facing this issue.

My neurosurgeon at the time felt that I could deliver vaginally but my primary care physician wasn't convinced.  I was referred to a high risk pregnancy specialist and he said I needed a C-section or would need to go through labor and use the vacuum when it came time to push.  He said I couldn't push through the contractions because pushing changes the pressure in your brain.

Ultimately I was scheduled for a C-section two weeks early to avoid labor.  I later found out that I could have delivered vaginally safely.  If someone tells you that a C-section is necessary only because you have hydrocephalus, consider getting a second opinion.

While I was pregnant, I was terrified that something could happen to my shunt, I would need surgery and I would lose the baby.  If you are experiencing shunt malfunction symptoms during pregnancy be sure to be seen by your neurosurgeon.  You can still have x-rays etc.  There are ways to protect the baby.  Also nowadays physicians can perform surgery while a woman is carrying a child and still keep mama and baby safe.

If this is a planned pregnancy, I do suggest seeing your neurosurgeon and primary care physician for a routine exam.  It wouldn't hurt to make sure everything is running smoothly before you start trying.  Also don't forget those prenatal vitamins!

My pregnancy was fairly uneventful in regards to the shunt but I was in excruciating pain from four to nine months.  We never did figure out the cause of it.  It could have been the baby moving against the catheter or scar tissue.  During the C-section, my OBGYN said my abdominal cavity was so full of scar tissue that he couldn't locate the baby initially.  But I knew he was in there because he constantly kicked my bladder and kept me up all night with the hiccups!

One negative aspect of being pregnant with hydrocephalus is that you can't take your regular medications for headaches or even pain pills.  You might want to do relaxation techniques to help deal with the pain of a malfunction headache.  Do things that make you happy and help you feel relaxed.

One of the other things that concerned me with getting pregnant was how could I care for my child when I am sick with a malfunction?  How could I rest when I have another person to take care of?  The answer is simple: You will find a way.  You will find a strength that you never realized you had.  This new person will be your reason for living and your motivation to pull you through.

When you do need help and you will sometimes, do what a good friend of mine said, "Line up your village".  Ask your family and close friends to help with you and your child.  The people that truly care about you will step up to help. 

I was blessed with just one child.  Sadly I had two miscarriages after him.  I can't imagine my life without him nor could I imagine my life with more than one.  My heart is still broken over the two babies that were not meant for this world but having hydrocephalus and being a mom is extremely hard.  Having said that, I wouldn't change it for the world.  He brings so much joy to my life!  I am so proud of the sweet, caring, and empathetic young man he is becoming.  Seeing me go through thirteen surgeries in his eight years of life has made him who he is today.

So I put my son first, do my best every day, and ask for help when needed.  Some would argue that I don't ask for help enough, but only I truly know what my limitations are.

If you find yourself pregnant with hydrocephalus and have concerns you can reach out to me, talk to your physicians, or find a support group in your area through the Hydrocephalus Association.  Even social media, such as Facebook, has support groups.

Just know you are not alone.   Like I said before, we may not all share the same story but we can be there for one another.

Struggling with the unknown

This morning I came across a picture that made my heart stop.  This picture was taken in May when I was in the hospital for a week.  My ex and my son were next to me on the hospital bed.  We were planning on using this as our Christmas card photo this year because we had all spent so much time in the hospital over the past three years.  Little did I know that less than two months later, I would be separated.

My partner and best friend and my dream of being shunt free were taken away from me all at the same time.  I thought I was coping well with this until a couple of days ago.  I don't really know what changed, but my heart is full of sadness.  I miss my best friend terribly and it's hard letting my son go off to another home every other weekend.

It doesn't help that I haven't been feeling very good the last couple of weeks.  I have to pump my shunt often to relieve pressure.  I am not sure yet if there is something wrong or if my brain is just getting used to this amount of pressure. I am hoping it's the latter of the two.

On top of all this, I have financial concerns.  My ex is taking good care of me financially but there are no guarantees in life.  What if something happens to him?  People tell me not to worry about things like that but I can't help it.  I need to know that I can support myself on my own.  I haven't worked in 10 years outside the home and so far it's proving very hard trying to gain employment.  Besides I need to have enough extra money for emergencies and for traveling to see our family and friends that live in California.  None of the side projects that I mentioned in my last post are panning out.  Finding secure employment is becoming a lot harder than I realized.  My next step is to go to a temp agency.  Hopefully then I can start work right away.  My confidence is shot though because I am worried that my short term memory loss will be a problem like it has been in past employment.  Now the memory loss is even worse than before.

Even though my office is organized and ready for me to write my children's book and/or novel, my anxieties are keeping me from thinking clearly.  Also I am starting to doubt if I am even good enough to accomplish these tasks.  Part of me tells me to just give up on the dream of ever being a published author.  I am an avid reader and I just don't believe that I am good enough.  I guess I will never know if I don't try.

Readers please keep me in your thoughts and prayers.  I don't feel like I am in a good place mentally right now.  In the back of my mind I feel that something BIG is coming my way.  Could be a new relationship or a new job.  I just don't know but having patience and getting to that point is very difficult.  I am trying to go back to doing the things I enjoyed before I became so sick three years ago and I have been surrounding myself with supportive friends.  You know who you are and from the bottom of my heart thank you!  I am literally counting down the days (72!) until my son and I see our family and friends in California again.  I can't even express into words how much I miss all of you and can't wait to hug, cry, and dance with you all!

Update to the 27th Surgery

I had emergency surgery on 8/27/2015 because I was losing my vision due to the increased pressure in my brain.  Although I knew we had no other choice but to turn the shunt back on, I was still devastated.  Since I had been over-draining on and off for twelve years, I truly thought that I wasn't going to be shunt dependent anymore.  I couldn't help but dream about a life with no more brain surgeries.

During this procedure my neurosurgeon added a second high pressure valve in my abdomen.  Now I have two high pressure valves on this shunt.  The goal was to drain enough CSF out of the brain to reduce the swelling on the optic nerves while leaving enough pressure in the brain to avoid over-drainage.

It's been almost a month since surgery and I am happy to say I am feeling very good.  I rarely have headaches anymore.  I am just exhausted physically from having so many surgeries in a row.  The swelling on my optic nerves are gone.  I still see flashes of light every day but my ophthalmologist assured me that I don't need to worry about it.  He said it takes awhile for neurological changes to go away or it could be a result of needing to have higher pressure in my brain.  As long as the swelling is gone we don't need to worry about it.  I did lose some vision permanently in my right eye but that is my weaker eye so I am not concerned about it.

Now that I am feeling so much better physically, I can enjoy life again.  My son and I have been getting out of the house and spending time with friends whenever we can.  I must say that it has felt amazing to do that. I was in so much  pain and home bound for so long!  My friends are telling me that they see life in my eyes again and they see a huge change in me.  It just melts my heart to hear them say that.

I don't want to take on too much on too quickly but I am searching for a job.  I have also been rearranging my home and getting rid of clutter.  Dealing with a broken heart and brain, I've had no desire to write lately.  But now that I am in less pain physically, I am getting that desire back.  My new office is almost finished and I think it will be a very comfortable place for me focus on writing.

My goals for this next year are to find a job, keep up on the blog, take and sell more pictures, visit with family and friends more, and just genuinely enjoy life with my son.  I see many adventures in our future just like we used to have.  I also see a big hug coming to my neurosurgeon next week.  I can't thank him enough for giving me my life back and for NEVER giving up on me.  I am truly grateful for everything he has done for me.  I know this won't be my last surgery, but I hope it's the last for awhile and I will enjoy every minute of having good health.

27th Surgery

Friday afternoon I found out that I have pressure on my optic nerve from the increasing pressure in my brain.  I am actively loosing vision in my left eye.  In order for me not to go permanently blind, I need to have the pressure released ASAP.

This morning my neurosurgeon's office called and told me that I needed to be seen today.  He has decided to turn the shunt back on.  This concerned me greatly because I was over-draining so badly with a VP shunt.  But he is going to add a second high pressure valve to the shunt to keep the pressure high enough in my brain that I shouldn't have low pressure headaches BUT it should drain enough to keep me from going blind.  Hopefully vision will be restored on its own in my left eye and no permanent damage has been done.

So back to the operating room I go.  I don't know the date yet, I just know that it has to be done in a big hurry.  This surgery will be outpatient but that doesn't give me any sort of comfort whatsoever.  It's going to be my 27th surgery.  I mean how much can one person take?  Besides I am dealing with this during the middle of a separation/divorce.  I was told just over a month ago that my husband is divorcing me.  Our family dynamic has changed dramatically and I already feel like a single mom because he has moved on and it's been extremely difficult on me.  Please keep me in your thoughts and prayers because I am in a very bad place mentally.  All I can do is pray that this is the last surgery for awhile and that something much better is in store for me.

How Hydro Affected my Childhood

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...

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.

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.

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. 

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?

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.

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!!!

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.

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.

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.

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?