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.

Friends Don't Let Friends be Constipated

I don't know about you but I have a love/hate relationship with pain pills.  Yes they help me sleep and take away pain temporarily but they can really slow down the digestive system.  Constipation can be a serious problem.  As all hydrocephalics know, we shouldn't be struggling to push because it can increase intracranial pressure.

When a friend of mine needed a shunt revision this past summer I did what any good friend would do.  I gave her laxatives in the care package I made for her because friends don't let friends be constipated.  After all we need both the brain and digestive tract flowing freely.

In October of 2014, I had another revision after having two revisions over the summer.  A couple of weeks after that surgery I started feeling intense pain right below my ribs.  My primary care physician determined that I had an impacted colon from all the pain pills I had been on.  He instructed me to stop the pain pills (which I was SO not ready for) and try over the counter products to release the blockage.  He also wanted me to increase fluids and exercise.  That is easier said than done after three brain surgeries in four months. 

Luckily the blockage did release after a couple more weeks of horrific pain.  I wanted to take pain pills so badly but that is what got me into that mess in the first place.  So I increased fiber, water, and started walking around the neighborhood while dealing with the pain of having a huge incision on my head.  The most amazing thing about this all this was that I had my friend calling me often, checking to see if I was staying on top of the laxatives.  Why you ask?  Because friends don't let friends be constipated!

If you have an impending surgery I strongly suggest increasing fiber, water, take laxatives, and walk as much as possible.  You don't want an impacted colon or ruptured intestine.  Also make sure you have a friend that loves you enough to help with your digestive health.

Thanks!

This post coincides with my post about support.  It took 35 years for me to really connect with anyone else that had hydrocephalus.  Now that I have formed some close relationships, I have come to realize how hard all this must have been for my family and friends to see me go through surgery after surgery after surgery.  My heart breaks every time I hear about someone needing a shunt revision. 

My good friend Stephanie has had her fair share of problems with her shunt recently.  She is a complete sweetheart and is always there for me when I am having problems with my shunt.  I can only hope she feels that I have been there for her as well.  Seeing her go through all this pain just kills me!  I wish that I could fix it for her.  I just keep praying that her doctor figures things out and gets her feeling better soon.  After all, when we are both feeling better we have champagne to drink and lots of dancing to do.

I realize that the aching pain I feel in my heart and the tears that I shed for Stephanie and my other friends with hydrocephalus are probably what my family and friends feel every time I call them and tell them that I am having yet another revision.  It took me meeting other people with this condition to come to this realization.  I am not proud to admit this but growing up I had the attitude that I was going through it not them.  It just couldn't possibly be hard on them right?  But that simply isn't true.  This condition is not easy to live with and it is hard on everyone around us.  I know how badly my husband and even my doctor just want to fix it.  Sadly that will never happen.

What gives me hope is that I do have family and friends who support me through this complete and total madness.  I want to thank all my family and friends who have stood by me through the years and have given me support.  It means more to me than you can possibly imagine.  Even if we don't talk often just letting me know that you are thinking about me means so much.  People are often so busy these days  that we don't reach out to one another anymore.  Just a text, a short message or phone call could really brighten a person's day.

So thank you again for listening and letting me cry when I needed to.  For anyone that may feel I haven't been there for them lately I truly am sorry.  Sometimes this condition takes so much out of me.  But I am going to make an attempt to reach out to others more.

My Diagnosis and Hydrocephalus Overview

At birth, I suffered a brain hemorrhage.  The bleeding was in the area of the brain that doctors could not get to safely.  Fortunately for me it clotted on its own.  I was told all my life that the blood clot was what caused hydrocephalus.  A couple years ago my current neurosurgeon told me that I have hydrocephalus due to aqueductal stenosis.  At the time I looked at him like he was crazy because my family had told me that a blood clot caused it and none of my other neurosurgeons ever told me different. 

Recently my husband and I were looking through my old medical records.  My pediatric neurosurgeon wrote on a report that I had a brain hemorrhage at two days of age. I did have a blood clot but that's not what caused the hydrocephalus.  Aqueductal stenosis did.  My pediatric neurosurgeon also noted that the blood clot would go away on it's own in a short amount of time.  My current neurosurgeon has been telling me that there hasn't been a blood clot in my brain for all the years he has known me. Since I don't know too much about acqueductal stenosis I can't get into that too much now, but I can explain what hydrocephalus is.

Hydrocephalus is the accumulation of cerebrospinal fluid (CSF) in the brain.  It is a life threatening medical condition, not a disease.  A mechanical device called a shunt is implanted into the ventricles of the brain or the lumbar spine to divert the CSF into another location of the body where it is reabsorbed.  The shunt consists of a valve and two catheters.  The valve either has a fixed setting or can be programmed with a magnet.

A shunt is a control for hydrocephalus, not a cure.  There is no cure as there are so many causes for it.  Shunts only have a 50% success rate.  They often need to be revised which could mean a lifetime of brain surgeries for the patient.

Signs of a shunt failure include but are not limited to severe headaches, nausea, vomiting, changes in vision, lethargy, confusion, dizziness, poor performance in school and/or work, and personality changes.  Symptoms are different for everyone. 


If there is a problem with the shunt, the symptoms will not go away until the problem is resolved.  The patient will not feel better until a revision is performed.


Many hydrocephalus patients have memory loss and cognitive issues.  Some may suffer from depression from dealing with a chronic condition.  Most have to deal with pain on a daily basis.

I had my first shunt implanted when I was almost two months old and I have documentation to prove it.  My doctor had to wait until I recovered from a cold that I came down with in the hospital. My doctor felt that a VP (Ventricularperitoneal ) shunt would be the best fit for me.  The distal catheter ends in the peritoneal cavity with a VP shunt.  The shunt was implanted with no complications.  Unfortunately the brain hemorrhage and pressure from the hydrocephalus damaged my eye muscles.  I was cross eyed until the age of one when they could perform my first eye surgery.  My eyes still wander to this day and I only see out of one eye at a time.  Since I was cross eyed for so long my brain focused on the stronger eye, which is the left, and shut the right one off.  I have no depth perception whatsoever.

Since implanting that first shunt I have had many revisions and have suffered many side effects from multiple brain surgeries.  I have anxiety about being in large groups, can't handle loud noises anymore, and have dealt with depression on and off.  I have short term memory loss, very little fine motor skills, balance issues and difficulty walking from a recent brain bleed.  I want to share my journey with hydrocephalus to educate people and maybe help someone who has it.  I will be very open about this crazy journey.  Hope you enjoy!

Support

Growing up with hydrocephalus often felt lonely.  I didn't know anyone else who had it and often wondered if people experienced the same things that I did.  At times I met other patients in the hospital with it but we never kept in contact.  There weren't many support groups established back then either.

In 2013 my entire world changed.  I started a team for the Hydrocephalus Association walk in Portland, OR and was invited to a meeting.  That was the first time I met other families with the same condition as me.  At the time I was the oldest patient with it but it still felt good to share my experiences with the parents and be an inspiration to them.  Because of that meeting I have formed some lifelong friendships and a new support system. 

Having a good support system when you have a chronic medical condition is vital.  When you can talk to someone else who has the same condition as you and can relate to experiences you've had it feels like a weight is lifted off your shoulders.  At least it has for me.  Also it validates that you are not alone. 

Besides going to the walk every year, I am part of a hydrocephalus support group and I was a member of several support groups online.  Meeting all these people who share my condition has been liberating.  I can't thank my Hydro family enough for all they have done.  We have shared stories, laughter, tears, and hospital visits.  Oh and chocolate...

If you have Hydrocephalus and need some support check out the Hydrocephalus Association website for a support group in your area.  Facebook has several support groups online.  Also try to attend a walk in your area.  That is a great way to connect with other people.  Feel free to reach out to me.  I am more than willing to listen to your story.  Just remember you are not alone!