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?

25th surgery here I come!

My 25th surgery is scheduled for the morning of April 3rd.  Now that surgery is scheduled, I can finally reveal what my plans for the 25th surgery are.  I needed to obtain some information from my surgeon before I could reveal the plans.  I had hoped to have a different outcome but here goes...

Several months ago I found a video online where a women was having a double mastectomy and she danced with her surgical team in the operating room before surgery started.  I immediately knew that I wanted to ask my surgeon if we could do that.  Not only did I want to dance in the operating room but I decided that I want to make a dance video with all my family and friends that have supported me through the years.

My surgeon was shocked to say the least when I told him about my idea.  Sadly he pretty much shot me down but I can still make my videos with everyone else when I am better. 

My other plan was to get a tattoo to represent the song that helped me get through so many surgeries and the last hospital stay.  That song is Make Everyone Happy/Mechanical Birds by Modest Mouse.  I got a beautiful mechanical bird on my right forearm about  six weeks ago.  I had the tattoo artist put the number 25 on its wing.  Now before I am put to sleep I can look at the bird and remind myself that I am strong and can do this again.  Plus he will keep me company in the O.R.

Besides being incredibly talented my tattoo artist is just, well, AWESOME!  He agreed to make a video with me which we did this morning at the tattoo parlor.  How amazing is that???  We danced to Modest Mouse naturally.  I haven't been able to stand up well since then but it was so worth it! So thank you Omar Kahn and Columbia Tattoo & Piercing in Vancouver, WA!  Also thank you my dear friend Shirley for taking me today!  Glad you could be a part of it.

I have lots of people I need to make dance videos with in California, good friends in Texas, and people in my area.  When I am better I will start contacting everyone so we can get our groove on.  Who knows we may all be YouTube sensations in the next year or so.

I think I will also walk into the operating room rather than being wheeled in.  I want to show Hydro that it can't keep me down.

Now if I can just get Isaac Brock from Modest Mouse to come to the hospital next week to make a dance video in my room that would make all this so worth it!  I'm just across the river from Portland. wink wink

Wish me luck readers.  Thank you from the bottom of my heart for taking the time to read this blog and for supporting me.

Getting the tattoo

The final result

The Invisible Medical Condition

Bear with me but this is going to be a long post.  But please take the take to read through it all.

Unless someone just had a shunt revision and has a large incision on their head and maybe neck, no one would be able to tell that they suffer from hydrocephalus.  Due to that, I think many people believe we are faking or they think it's all in our heads.  Well yes, yes it is.  My head hurts constantly.

I can't speak for all hydrocephalics, but these are some of the misconceptions I have encountered in my lifetime.

Trust me when I say I am not being lazy because I need lots of rest. I have a brain injury.  Both my mind and body need rest for my brain to heal properly.  I literally can not function when I don't get enough sleep, as anyone wouldn't be able to.  I get very confused and can't concentrate on anything.

I am not a flake.  I don't mean to cancel on plans at the last minute.  Sometimes I have no choice.  A shunt failure can happen at anytime.  This is why I often respond to invites with maybe or I will try to be there.  I do my best to do activities in pain but sometimes it is too much.  Just know that I don't enjoy missing out on the fun.  It's difficult knowing your friends are out having a great time while you are stuck at home.

Just because you may see me smile in a picture do not assume that I am feeling good.  I have always tried to not show others how truly bad I am feeling.  That smile is just me trying to make the best out of a bad situation. 

My problems are not stress related.  I actually adjust to stress fairly well.  My problems are due to a medical condition within my brain.  The brain is a pretty vital organ in the body.  If it's not working right, nothing works right.  Also when I say that I am having new side effects from this condition, please accept it as that.  It's not stress related or side effects of medication I'm on or any other excuse you can come up with.  There are only so many times a person can take brain pokes before damage starts being done.  Especially if you have a brain bleed, which I did.  I don't understand why some people in my life try to blame everything else instead of accepting the fact that I indeed have some brain damage.

People should be kind to everyone and try not to judge others.  You never know what someone is going through.  Just because they look fine does not mean that they are.  I also firmly believe that no one should tell you how to feel about a situation.  Everyone is entitled to have their own emotions and deal with those emotions in a way that works best for them.

When I first started working full time after high school, I used to be accused of faking constantly.  People, not just previous employees, have talked behind my back, have told me how I should feel, and said to just get over it.  Their tune always changed when I had a revision though.  Kind of hard to "fake" brain surgery.

But I have decided that I need an attitude adjustment.  I am going to try not to be offended or bothered by incredibly insensitive comments that are directed towards me.  Let me tell you there have been many over the years.  I have come to realize that some people just don't understand and I don't usually let on to how bad things really are. 

Besides hoping to help my fellow hydrocephalics and sharing my journey, I started this blog to educate others on this condition.  Also relate what it's like to live with a chronic condition as so many people in this world do.  This is something that I will have to face for the rest of my life.  A lifetime of brain surgeries!  I don't know how much time I have on this earth so I have realized that I have to make the best of it.

From now on I won't allow people to tell me how I should feel and I will let the insensitive comments slide off my shoulders.  Sometimes it is difficult to know what to say to someone in a crisis.  I know at times I was guilty of that.

I know that everyone goes through difficult times in their lives and I have empathy for others.  Ask anyone who truly knows me.  I am genuinely concerned for other people's well being.  I am deeply saddened when I hear about my family, friends, and even strangers going through a crisis.  At times I may not be there for you as much as you'd like but know that it's not intentional.  I want to be there but often I can't physically or mentally.  I live in a land of confusion most days.  It's difficult for me to even write this post.  I won't say how long I had to spend on it. 

For me, the best comfort I can receive is when someone acknowledges how hard the situation is and cries right along with me.  You don't need to remind me of all the things I should be thankful for.  Trust me I know better than most people.  I am incredibly grateful for everything I have in my life.  Including the bad times because they make me grow and teach me lessons.

This year of 25 and still alive I have a lot to work on.  First and foremost I need the pressure in my brain to be corrected so I can function.  Then I need to focus on repairing my relationship with my son (which is already in the works), write my children's book (being an author is all I ever want to do in life), keep up on the blog, and work harder on my photography.  The last thing I need to do is let go of bitterness and anger at life.  After all, we'll all float on, okay?-Thank you Modest Mouse for seriously being my saving grace over the years.

Slit Ventricle Syndrome

Slit ventricle syndrome or SVS is a condition where the ventricles of the brain become non-pliable and look like slits.  This condition usually occurs in children and life long shunt dependent people.  SVS is actually rare, difficult to diagnose and treat.


This condition can be extremely dangerous.  CSF is a cushion for the brain.  When there is not enough fluid supporting the brain, damage can be done.  Also when a person is over-draining their pressure runs in the negative.  The slit ventricles make it riskier for a physician to do brain surgery.


Just because scans reveal slit ventricles does not indicate that a person has SVS.  They have to be symptomatic.  Symptoms usually include chronic or intermittent positional headaches, lethargy, vomiting, vision changes and dizziness.


Slit ventricles also DOES NOT mean that a shunt is working properly.  The ventricular catheter could be blocked barely allowing fluid to flow through.  It is crucial that shunt malfunction is ruled out when a CT scan or MRI reveals slit ventricles. 


If a person is diagnosed with SVS, there are some treatment options.  An anti-siphoning device can be added to the shunt to avoid over-drainage whenever a person stands up. 


ETV or third ventriculostomy has been known to treat people with SVS so they are no longer shunt dependent.  ETV is a procedure in which a hole is opened in the brain.   Unfortunately the ventricles of the brain have to be enlarged to do this procedure.  A physician can temporarily block the flow of the shunt by externalizing a part of it to see if the ventricles will open up. 


Patients with programmable valves can have their setting changed to increase pressure.  Patients with fixed valves can have a higher pressure valve put in.


Migraine medications and subtemporal decompression are two other options for treatment.


Now that you know a little more about slit ventricle syndrome, I want to share my experience with it.  We first noticed my ventricles were slits when I was 20 years old but wasn't diagnosed with SVS until I was 25.  Back then my surgeons should have realized something was wrong and tried to treat it.  But I was constantly being sent home from the emergency room saying that my shunt was fine because my ventricles were so small.  That is not true at all.  Since they didn't get control of this seventeen years ago, it has taken over my life.  I am still struggling to find a treatment that will work and I have one collapsed ventricle in my brain.


I do have an anti-siphoning device on my shunt but I am not a candidate for a programmable valve.  We have tried migraine medications but that didn't work.  My current neurosurgeon has externalized my shunt twice and even though I had increased intracranial pressure during the externalization, my ventricles did not change at all since they are so rigid. 


Symptoms of over-drainage for me are increased headaches when I stand or sit up, sometimes lethargy, blurry vision, dizziness, and an eye twitch.  Don't ask me why my eye twitches but it does.


Whenever I am experiencing over-drainage symptoms, I have to lay flat and increase caffeine to open up the blood vessels in the brain.  But as I have mentioned in a previous post I had pancreatitis several months ago.  As I have been increasing caffeine, I noticed that my pancreatic pain was returning.  I have decreased caffeine dramatically in the last day and a half and the pain in my head is horrendous.  But I am trying to avoid getting chronic pancreatitis or pancreatic cancer so I will have to deal with it until I go back into surgery.


The next option is to put in a higher pressure valve.  This is the highest pressure available though so if this doesn't work I am not sure what they will do.  My doctor did briefly discuss subtemporal decompression with me but I am not to keen on having part of my skull removed.  That will be a last resort.


I've had seven brain surgeries in two years and most of them were due to issues with over-drainage.  One was due to an infection and several due to a faulty valve.  I am really hoping the higher pressure valve works and I can get a break from this madness.  I just want to be able to enjoy taking a walk again and not be in agonizing pain when I do it.  The moral of this post is if you start seeing smaller ventricles in your scans over time do not take it lightly.  You don't want to get SVS. 

Trauma

My doctors have traumatized me.  I now have a fear of staple guns.  That's right I said staple guns.


In a period of six months, I had to have my head stapled two times while being fully conscious.  One of those times was without anesthetics.  The second time I did receive numbing injections but they are also painful because the doctor has to move the needle around to distribute the medication.


The first head stapling was in the E.R..  The physician actually apologized for having to do that and said he would never want that done to him.  He was so upset that the on-call neurosurgeon instructed him to do that that he ran out of the room when it was done.  My mother was with me for this one and it traumatized her having to watch that being done to her daughter.


The second time was when I was hospitalized in December and the ventriculostomy was being removed.  My ICU nurse warned me that my neurosurgeon requested a staple gun just in case it was needed.  I started panicking when I saw it in the package.  It is just a miniature version of a regular staple gun. 


Ultimately I did have to be stapled 5 times.  The sound of the gun is so unnerving and the pain is, well, just shocking.  The first one is incredibly painful and after that you are in so much shock that everything goes numb.


I never want to see a staple gun again.


I don't want to have my head re-sewn up while fully conscious either.  I also had that done two times in a six month period.  The first time my regular surgeon talked to me the whole time and kept asking if I was okay.  I was really comforted by that because I was extremely nervous about it being done.


The second time was a little more traumatic.  It was at 1:30 am and my numbing injections didn't work.  I couldn't take the trauma anymore and literally had a breakdown.


During this same six month period I leaked CSF out of the incision on the right side of my head many times for various reasons.  You can't even imagine how horrible it is to have your own brain fluid leak out of your head and down your neck and shoulder. 


When my valve had a crack in it, the CSF was pouring out of my head like a faucet.  My husband saw it when we were in the E.R. waiting to have emergency surgery and he hasn't forgotten it.  Seeing your wife's brain fluid gushing out of her head is perturbing. 


It has been almost three months since my last surgery and I still feel like fluid is leaking out of the right side of my head.  But it's not.  I have been so traumatized by the events that occurred that I have what I call "phantom drippings".  It feels like I am leaking fluid, I panic, check the incision and find that it's dry. 


I really hope that I can recover from this trauma soon. Maybe I need to go back into therapy.  I just don't know.  But what I do know is sometimes having this condition is completely traumatizing for me and my family.

Programmable vs. Fixed Valves

In the late 90's, programmable or adjustable valves were invented to treat people with hydrocephalus.  This means that if more or less CSF needs to be drained, the valve can change to multiple settings by means of a magnet.  The magnet is placed on the outside of the body over the valve and is rotated to change the setting accordingly.  Each shunt manufacturer has different ranges for settings and each brand uses different materials for the magnet.

Reprogramming a valve is non-invasive and could prevent future surgeries.  If a person has a fixed valve meaning that CSF flows at low, medium or high pressure, he or she would need surgery to replace the valve if the brain changes how much CSF it needs in the ventricles.  This can be an on going problem.

Unfortunately not everyone is a candidate for adjustable valves.  In the last two years we have learned that I am one of those people. 

My first adjustable valve was placed in 2003.  Immediately upon it being inserted, I started having intense pain in my head above the valve and just didn't feel "right".  I felt that pain every single day.  My doctor at the time misdiagnosed me with nerve damage.  But when my valve was exchanged for a newer one in 2013 the pain became even more intense.  I felt that pain every day until that valve was removed four months later.  A fixed valve was put in.  Now remember a fixed valve has no metal components in it.  Once the fixed valve was put in, the pain went away.  We think that I have some sort of metal allergy. 

Another problem I had with programmable valves was that all my physicians always had trouble programming them.  They wouldn't move, would get stuck, or move to the wrong setting right in front of the physician's eyes.  The adjustable valves would also reset by themselves often.  For awhile they were reseting every two weeks.  Although it is a relatively simple procedure to reset a valve for most people, it is dangerous when the pressure in the brain is fluctuating that often.

I had one more problem with the programmable valves and this one is by far the strangest.  I used to get shocked.  All the time!  Just like when there is too much static electricity in the air.  Anytime I touched something, someone, or started my car I was shocked badly.  I would get a shooting pain that went straight to my valve and then I would get a headache.  One time I laid down on a metal slide to look up at the sky and when my head touched the metal I felt like I was being electrocuted.  My valve never worked the same after that and ultimately had to be replaced. 

My doctor, everyone at the doctor's office and even the shunt representatives had never heard of this happening.  It was maddening because they looked at me like I was crazy or just didn't believe me.  But just ask my husband.  He can tell you how much it drove him insane that I would shock him every time I kissed him.  We got to the point where I had to touch something else first before we kissed.  But once the fixed valve was put back in all that went away.  So either I have super hero powers or I have a metal allergy.  I am leaning more towards the metal allergy since I can't even wear jewelry because it irritates my skin so badly. I can't take iron or zinc either. My current physician has decided that programmable valves are no longer an option and I agree whole heartedly. 

My current fixed valve needs to be replaced because I am over-draining.  My surgeon had to move my shunt to the left side due to circumstances beyond his control.  It had been on the right side for 36 years.  The ventricle it was in is collapsed from being shunted so long.  Only the catheter was holding the ventricle open which made flow minimal.  The left ventricle is not collapsed and flows much better which is causing my over-drainage.  But now I need to have another surgery to remedy the situation.

The purpose of this post is not to criticize either types of valves.  I just want to educate people and share my experience.  Programmable valves are a fantastic invention and one of the only improvements in the treatment of hydrocephalus in my opinion.  Many people are able to function with them successfully.  The same can be said with a fixed valve.  As long as the brain does not change how much pressure it needs, chances are that the valve could work properly for years.   A patient and physician just need to determine what the best option is. 

I have also learned over the last couple of years that not all shunts work the same.  Each shunt manufacturer truly is different.  People in my life are always so quick to blame the doctors for everything but they don't take matters like this into consideration.  Treating hydrocephalus can truly be trial and error.  How could my physicians possibly know that I would have some sort of metal allergy when I didn't even have standard symptoms of one?  But we were able to determine without a doubt that the magnet was the culprit of my problems.   Also one would think that all shunts work the same but that isn't the case.

If you do have an adjustable valve be cautious and aware of magnets around you.  They are everywhere.  In your phones, speakers, lap tops, microwaves, etc.  If you are traveling carry a shunt card with you from your manufacturer that states you have an adjustable valve.  Then you can avoid going through scanners when going through security.  My valve almost always readjusted at airports.  There are strong magnetic fields all over airports.

Even though I may have to endure more surgeries than someone with an adjustable valve, I have piece of mind knowing that my setting is not going to change randomly when I may not be near a hospital and that the shocking and horrific pain is gone...for good.

Birthdays

Since I've had hydrocephalus my whole life and have been told by doctors that I could die, I have always cherished my birthdays.  The last three years I have been very sick with shunt problems during my birthday.  Rather than dwell on the fact that I have been continuously sick for three years, I thought I'd reflect on some previous birthday celebrations.

Hands down the best birthday celebration I ever had was when I turned 18.  A friend of mine was in a band and you all know by now how much I love music.  I asked his band to play in my mom's backyard because it was big enough to hold a large crowd.  Two other bands were going to play as well.  Several of my friends from high school came but it was mainly friends of the bands' that showed up.  And there was a lot of them!  Much more than my mom anticipated.  Oh and did I forget to mention that my friend in the band was a lot older than me?  Like several years past the legal drinking age?  And they brought alcohol.

We had made up flyers to let all the neighbors know about the noise and tell them that they could come if they liked.  There was a cover charge so I could pay the bands for their time.  Well the noise ended up being a little louder than the neighbors cared to hear. The cops showed up on our property.  I was 18 and would be responsible for anything that might happen.  Since I didn't want to be slapped with a fine I decided to shut the shindig down.  Two of the three bands got to perform.  When it ended the bands and their fans all left but my good friends stayed around.

Even though it got cut short and my mom was furious with me for the amount of people that were there and the destruction they left behind, it was an incredible night!  I had so much fun!  Just knowing that the bands were playing for me made me elated.  One of the bands even played happy birthday.  I did have to clean up all the bottles and trash that was left behind in the yards and neighborhood but it was still worth it.

Fast forward seventeen years to my 35th celebration.  This was also epic despite the fact that my shunt was acting up and I was in a lot of pain.  One night my husband and I went to a punk concert to see Pennywise and Lagwagon.  Both bands still rocked after all these years.  My head was pounding so bad and I had to sit down a lot but I enjoyed every minute of it.

The next night my friends, husband and I went to see a Neil Diamond tribute show.  (That's right I am not ashamed to admit that I like Neil Diamond and punk music.)  The tribute show is really a comedy routine.  And it's hilarious!  The club asks in advance if you are there for a special occasion so they knew that it was my birthday.  Because of that I got some extra special attention from "Neil".  We even sang together to Cracklin' Rose.  It was awesome!  My friend Tracy dedicated Rhinestone Cowboy to me and we danced together.  (Yes I know Rhinestone Cowboy is not a Neil Diamond Song.  That is another story in itself.)

So the next day on my actual birthday I was in so much pain from two days of festivities that I could not get off the couch.  But I had plenty to reminisce about while I was laying around.

Okay now we are backtracking just a few years to the funniest birthday celebration that I have ever encountered. We decided to go out to dinner to Red Robin.  My son was about three years old at the time.  We ordered, enjoyed our meal, and then my son announced that he needed to use the restroom.  My husband decided to take him.  That is when three or four of the staff came over to sing happy birthday while I was sitting there-ALONE.  I even asked," Do you have to do this right now?", and apparently they did.  I can't even imagine what the other guests were thinking or what color shade of red my face was.  My husband and son come back just as they were finishing up and leaving me a bowl of ice cream.  My son was ecstatic about the ice cream but my husband immediately cracked up.  I couldn't help but join in with the laughter and ice cream.  I mean come on.  Who gets sung to while they are sitting alone? 

This year since my health is so poor we are just planning on going out to dinner again.  I have my first occupational therapy session during the day for my walking issues. I really hope I can sit through our meal at the restaurant.  All I know for sure is that if my son has to use the restroom I will be taking him!

 

This is me and "Neil".  Such a great night!

                                              Lagwagon rocking out at the Roseland.

Does everything happen for a reason?

I've always believed that everything happens for a reason.  From October to December of 2014, I went through one obstacle after another.  I was really struggling with the reason behind it.  Was I being tested or was something good actually going to come out of all the pain?  I'm still not really certain of the answer but I do know that I learned some life lessons. 

In September my three month old programmable valve stopped programming.   Unfortunately it stopped working on a setting that was over-draining me.  In October it was removed.  The catheter in my ventricle was completely clogged and stuck.  I had a brain bleed when my doctor removed the catheter to put in a new one.  During the brain bleed my doctor noticed that the blood traveled through the ventricles and did not back up like someone with obstructive hydrocephalus would do.  I was put in ICU for observation.  The brain bleed gave me horrific pressure headaches for about a month and I've had trouble walking ever since.

When I got out of the hospital I got the flu after receiving a flu shot.  I recovered from that after about a week or so and then was diagnosed with an impacted colon from all the pain pills I was on.  That is when I had to stop taking the pain pills although I wasn't ready.  I had a huge incision that was the length of my entire head.  The colon felt better after a couple of weeks and then I started feeling sharp pains at the top of my incision.  I started leaking fluid, puss, and started spitting out stitches.  I was monitored weekly for about another month until it was determined that I had an incision infection. 

During the whole time I was dealing with my leaking, painful incision, I somehow acquired pancreatitis.  Let me tell you that is the most painful thing I have ever experienced in my entire life!  We had to cancel our thanksgiving because of it.  The only way to cure it is fasting to give your pancreas time to heal.  Thanksgiving is my husband's favorite holiday so you can imagine how terrible I felt about it.  Oh and I had viral bronchitis during all this as well.  Coughing causes your intracranial pressure to increase.  Every time I coughed, it made my headaches ten times worse.

I was taken back into the operating room to have the wound cleaned even though I hadn't healed from the pancreatitis yet.  The infection reached the shunt and had to be removed.  During a CT scan my surgeon realized that I had a natural pathway in my body from having a shunt for so long.  He thought maybe the CSF would travel down the natural pathway.  He removed the ventriculostomy that was in my brain to see if it would work. (A ventriculostomy works as a shunt temporarily.)  The suture my doctor gave me wasn't enough and I had to be stapled 5 times.  After the ventriculostomy was removed, I  felt pressure when lying down but not when sitting up.  Also we were able to see on the monitors that my brain was regulating the pressure on its own.  We were all so hopeful that it might work and I would go home shunt free.

That feeling of hope only lasted three days.  Because of the infection and all the surgeries I'd had, the skin on my head was extremely damaged.  I started leaking CSF out of my incision in the middle of the night.  The on-call doctor came in to re-sew the incision in my hospital room.  Since my skin was so damaged, the numbing injections didn't work and I felt everything!  At that point I couldn't handle all the pain and trauma anymore. I had a complete and total melt down at 1:30 in the morning with the on-call surgeon.  I couldn't stop screaming and crying.  He was able to talk me down.  He had recently been in a situation where he was a patient and he understood what I was going through. Unfortunately his attempt to fix me did not work. I started leaking again and they had to put a shunt back in on the left side of my brain instead of the right.

When I finally got released from the hospital I came home to a toxic environment due to family drama.  That delayed the healing process and brought on unnecessary stress.

So what did I learn from all this hell?  The most important thing that I learned is that I am a strong person.  People are always telling me that I am strong but I never believed it.  But after dealing with an impacted colon, pancreatitis, and an infected incision on my own while still taking care of my son and house, I think I can accomplish anything now. 

I also feel that being positive doesn't accomplish much of anything.  I was so certain that my shunt wasn't infected and that I would be going home that day but I was so wrong and had to stay in the hospital over a week.  Five days were in ICU so I wasn't able to see my son very often.  Also I was hopeful that the shunt was coming out permanently and was devastated when I found out it wasn't coming out.  If I had prepared myself for the worst, the disappointment wouldn't have been so incredibly painful.  I still think about those three days of being shunt free and cry.  I think it's perfectly acceptable to prepare for the worst but have the attitude that eventually the situation may get better.  I am still waiting for my situation to get better.

Not so sure there is such a thing as karma either.  That is all I have to say about that.

During those three months we learned who our true friends are.  Some people that I thought were good friends completely stopped talking to us.  I'm not sure if they just couldn't handle the situation or if it was something that we did.  At this point it doesn't matter anymore.  Now I know who we can count on.

The last thing I learned is that blood is not necessarily thicker than water.  No one deserves to be treated badly by someone just because they are family. 

I certainly have a completely different outlook on life from all the experiences I endured.  I am still hoping something good is going to come out of all this as I prepare for my 25th surgery.  All I know is that 25 surgeries is a big milestone and something that should be celebrated. 

This is my incision from the surgery in Oct. Imagine dealing with this without pain medication.

My husband took this picture of me right after the ventriculostomy was removed.  I had a lovely hole in my head.  This was taken prior to the stapling.

My Curse

As if having hydrocephalus wasn't enough, I had to be cursed with small, hidden veins.  Every single time I need an IV (which is very often), they can't find a vein.  It is maddening!  I've had them in my hands, feet, and crick of my elbow among other places.  Warming up my arms and drinking lots of liquids help bring them to the surface but you aren't allowed to drink anything before surgery.  Usually the hospital has to call IV therapy.

One of the worst experiences I had was when I was about twelve years old and I was going in for a shunt revision.  They were unable to find a vein in pre-op so the nurses decided to look for one in the operating room.  I was strapped down to the operating table with two nurses digging around in each arm trying to find anything they could use.  Initially they used a local injection to numb the areas but they were searching for so long that the medication wore off and it was painful.  My nerves were already shot from needing to have another revision.  Being strapped down to the table for so long while still conscious made matters much worse.  I just wanted them to knock me out!  I am extremely claustrophobic and being strapped down causes a lot of anxiety for me.

During my 8 day hospital stay in December I needed two IV's in at all times while I was in ICU because that is their standard policy.  Unfortunately my veins wouldn't hold up.  The nurses kept having to move them into different locations because they stopped working.  By the time I was about to have my second surgery in a week, I only had one spot left that worked in the crick of my elbow.  It was more than four days old but since I was going back in for surgery the nurses decided that they would move it to another location while I was already under anesthesia so I wouldn't feel it.  When I got out of surgery my arms were covered in bandages and the IV was still in the crick of my elbow.  They weren't able to find another vein.  I looked and felt like a pin cushion.

Another time I had to visit the emergency room for a different medical condition.  The treating physician ordered a blood test.  The phlebotomist had difficulty finding a vein.  When he was moving the needle around I felt a shot of agonizing pain go straight up my arm.  He apologized and said that he was afraid that might be a bad spot.  Turns out that he hit a nerve and I now have permanent nerve damage in my right arm.  I feel pins and needs or shooting pains up my right arm every day.  Sometimes even the wind brushing across my arm hurts.

On the rare occasion that a phlebotomist can find a vein on the first try I give them excessive praises.  Maybe I should write down their name for future visits.  At this point only one poke is a true miracle.   It really frustrates me that this happens but there is little I can do to change it.  I guess I need to listen to some music to keep me pushing on.

Quality of Life

Living with hydrocephalus can really alter your quality of life.  At this point in time, I feel like I have no quality of life.  Since I am over-draining and have negative pressure in my head I can only stand for short periods of time, I have blurry vision often, and dizziness.  I have to lay flat to even out the pressure.  I will be having my 25th surgery in the next couple of months.  (Since that is a huge milestone for me I have plans to celebrate the 25th surgery.  Stay turned for details later!)  My surgeon wants me to take some time to heal before we go back into the operating room again.  But I can't wait much longer.

Since my health has been an issue steadily for the past three years I feel like it has affected my relationship with my son.  We used to be so close and he was such a mama's boy.  But now I am physically unable to care for him the way that I used to.  We don't spend as much quality time together.  Lately I have been trying to do activities with him where I can still lay down like playing cards or drawing together, etc.  But it's just not the same because he and we used to be so active together.  Now he says that daddy takes care of him not me.  That just kills me to hear him say that because I have been a stay at home mom since he was born. 

Just this past weekend we decided to go somewhere on super bowl Sunday because we are not football fans.  We went to our state capital of Olympia.  We toured the capital building and then took our son to a children's museum.  I was in so much pain that I had to sit down the whole time.  My son kept coming over to tell me how amazing the museum was and he even filmed a few things on my camera so I could also see it.  It was so sweet that he wanted to include me in his joy but it made me sad that I couldn't physically participate in the activities with him.  Honestly I felt lonely just sitting there watching everyone else have fun.

I've always tried not to let hydrocephalus bring me down and still live my life.  Sometimes I force myself to still do things even though I am hurting.  But sometimes it's just too much and I have to decline.  We have had to cancel many activities in the past few years.  It breaks my heart that my husband often can't take a vacation because of me.  Whenever I bring that up he assures me that he loves me and that he knew what he was getting into before he married me.  But it still makes me feel horrible.

In the short time that I was in therapy, my neuropsychologist used to tell me that it was really important for me to do things that I enjoyed to help with the stress of brain surgery.  Everyone who truly knows me knows how much I love music.  So since I can't really do anything physically I listen to music constantly.  When Pandora is not playing on the television  I have one of my I-Pods playing.  My son and husband are getting a little tired of my station on Pandora so I try to limit playing that to when they aren't home.  But they understand that it is therapeutic for me.

I don't want to go through another surgery so soon but I am hopeful that maybe it will return my quality of life.  I want to be able to stand up so I can go hiking with the family, go dancing, and see some live music.  Somehow I have to work through the guilt I feel for having this condition and how it affects my family.  I didn't ask for it or cause it so it's not my fault but I can't help but feel terrible about it.  But first and foremost I want to be able to enjoy my life again.  So this is going to be my 25 and still alive year!  I just have to remind myself that I am strong enough to do this again but it's okay to acknowledge that it's still hard on all of us.  We never know what to expect after these surgeries anymore.  I just hope that this is the end for a long time.