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.