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.