The Next Step...

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

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

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

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

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

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

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

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

Update to the 28th Surgery

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

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

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

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

Loosing my vision

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

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

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

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

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

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

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

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

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

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

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

How Nurses Can Help Their Patients

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

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

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

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

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

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

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

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

28th Surgery

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

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

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

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

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

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

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

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