Thursday, March 31, 2011

The IH (PTC) Creed

The IH (PTC) Creed I promise to accept the fact that I have IH, a neurological disorder which will limit my abilities in my every day life.While I will always have IH, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind. I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner. I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it appears like it already has in my eyes. I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back. I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am in. I will not be sorry for what I don't have, but am thankful for what I do have. I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh. I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right direction. Lastly, I will not ask "Why me?" While IH has weakened my physical body, it has strengthened my heart, my soul, and my spirit.

Friday, March 25, 2011

Surgery # 12 ~ Just 9 days after #11...

Wednesday March 9 2011, I undergo yet another shunt revision.

Jeff drives Tiffany and myself to Rush in Chicago. If your counting this is surgery #12...

A programmable shunt is NORMALLY used as a Brain Shunt. Recently is has been approved to be placed in the abdomen. (So my Neurosurgeon says)  I think they need to go back to the drawing board on that decision. A programmable shunt cannot be secured deep into the fascia, it has to remain close to the skin for it to be programmed by a handheld magnetic device.  So basically it's free floating in the flank area.

I have thought that this shunt has been malfunctioning from the get go... BUT I do not have MD after my name! Maybe soon I'll have PhD after my name, LOL...

This programmable shunt WAS malfunctioning. After surgery Dr. Munoz tells my husband that the shunt was "flipped/turned over". Which I guess supports why it wasn't being programmed properly... I get that it can happen, being that it's not secured down. BUT if it was just flipped over, then the tubing would of closed off on both ends of the shunt.  To view this shunt click the link below.

So at each end of the shunt there is tubing. One side the tubing goes into my spine, the other side drains the fluid to my peritoneum. In my mind, if the shunt is flipped over, that means the tubing is now twisted, on both ends... Makes sense, right? Which means, if it's twisted, then I would be having High Pressure Headaches because it cannot drain any fluid, RIGHT? Apparently not the case, because whatever was happening with that shunt, (Which I KNEW all along was not working right) it was draining ALL of my CSF and causing me to have LOW (hypotension) pressure headaches. ~ I don't know... The whole things just makes me crazy ~

I was kept over night for observation, and discharged from the hospital the next day. It took a few days for me to even feel human again. Not to mention MORE staples, I hadn't even gotten the other staples out yet...

I do love my Neurosurgeon, but this concerns me, alot. When I had my post-op appointment, his explanation was it was flipped over, because it couldn't be anchored, and well... these things happen. I took it out and put in a regular Delta Valve 1.5 and that can be secured deep in the fascia. 
~ I still do not understand WHY it caused the low pressure...

But having a low pressure headache for 6 days has aggravated my Chiari. I have been miserable since the episode. Thank God I don't have the hypotension inside my skull, but if I'm standing up of sitting straight up for too long, my whole head kills, the back of my head where I had the decompression surgery is very painful. This is why it is taking my so long to get these blogs up. I can only sit at the computer for short periods at time, if at all on most days.

I feel I REALLY need to do some research regarding this last incident. It's just is not settling right with me...
After reading my MRI reports since May 2010 (when I came out of remission) I have found that the ventricles in my brain were collapsed then...

I have been trying to write this post for days, and here I am sitting at the computer AGAIN  "thinking too much" I may just have to leave this post, just the way it is.

It's been a long time coming, but I know a change is gonna come!

Monday, March 14, 2011

The house that a Chiarian lives in changes too...

This was written by a Chiarian friend of mine on Facebook, and I could have not said it better myself.  It really hit home for me, as I was in complete tears after reading it.  I felt I had to share this!

With us Chiarians our whole life changes and it is sometimes hard to see out side of ourselves to recognize that it effects the whole house and everyone that is around us. With that being said, I want to talk fist about us Chiarians and how ...much it effects us on a daily level.

Before, during the surgery, and after, we change... We become a shell of what we think people want us to be on the out side, because of course we “don’t look sick” so we must not be. On the inside our whole life has changed and we have to choose- “is this going to be for the better or the worse“? What I mean is are you going to embrace life and enjoy what you have or will you not. Knowing I have Chiari and going through the surgery has changed me. Our bodies are always changing specially after surgery to find the normality it needs for balance. This is the same for us mentally and emotionally.

I was a shell of how everyone else was, are they ok, how can I help them until I couldn’t any more.

My shell shattered, more like exploded after surgery and has never been the same. But I look the same, laugh the same, love the same things... But inside I have changed. I’ve grown and continue to grow but it comes with a price and that price is most of my friends and family don’t get me and understand me at all. I choose to have this as a lesson to work on myself and make “me” better. I don’t have the time to be or do the things others are. So I have a void or one of my friends called it a block in between everyone who has not taken the time to understand, truly understand. I can’t seem to move that block and when I do I’m sure it will be the correct time.

Chiari has not just effected my health but also my friends, my family, the way I was, is not what I am now, and some will never be willing to understand that, and that hurts. Chiari effects where or what I can do, and how long. I miss out on family and friends celebrations if they are to stressful for me or I’m not feeling up to it. It effects everything, and it makes me sad, but I have to be ok with it because I can’t change it. The problem is I feel others have not excepted it. I feel I bore them now, I’m not as fun and it is painful for me to go through.

The house that I live in, the loved ones around me, and the ones that support me are also effected by this. I realized after my surgery I didn’t just have this, but my whole family did... And they suffer too. I don’t know what it’s like to be them, because I’m the Chiarian, but it does push me to try more and seem more normal then I feel or what I really want to do. What I mean by that is most days I want to lay in my bed, but I don’t. I sit on the couch were my husband and daughter can see I’m ok. I apologize more then I ever have before and I wish I could keep up like I once did, but I can’t, so they get what they get, and they seem happy about that.

I know and understand it’s hard, and I wish I had the answer to make all of this easier on everyone. I’ve often thought about saying “you walk in my shoes”, but I would never wish this on anyone. The point in this whole story is we are all effected by Chiari. We all have to choose how we are going to live with it.  At this point the answer is we chiarians are not alone in this, we all go through this, and it is hard. We have to make the choice on what works best for you and your family.

Enjoy what you have, live life to the fullest and understand and except that we might just have to be more creative on our daily life. How do I get though this, how will this affect my children, how will it affect my other half, how will this affect my family and friends, how do I survive living with Chairi. We live everyday with these questions in our mind, we sleep and wake they are still there. We worry ourself’s over and over. How do I, How will it, How……..

How do I get through this-?
It is a very simple answer. One moment at a time, One day at a time. We are exactly where we are supposed to be. In our minds it may not seem fair but it’s what we got. “Now”, this moment, this day. I know you might be looking for a better way but there’s not one. This is what we have and it is accepting that we have Chiari and embracing the day. We can not change that we are who we are. We can’t change that we are Chiarians.

We can change how we get through it.
How will it affect my husband & daughter?
I have been together with my husband for 18 years. My daughter is 16 years old.
The year I was diagnosed and had surgery, were not as hard as after my surgery. 2011, has been the hardest year we have gone through yet, with the IH complications. I think I feel guilt for putting them through this and they are angered, frustrated, overwhelmed,  and they feel helpless. We should accept all of these things. They should too. But it is not that easy. So I go back too the first question and say, “take it one day at a time”. Love them cherish them and be there as much as possible.

How will this affect my family and friends-?
Some will leave and that hurts a lot. Some will stay and the love will grow stronger and it will overwhelm you. Some will still not understand and it will be hard. New/old friends will come into your life and will help in other ways.

After the surgery it was harder for me. For some reason after the surgery is when it set in I have Chiari and my symptoms are still lingering with the IH…  I worried about EVERTHING. Everything was taken from me, my friends, my social life, and my ability to work. Then one day after a very hard week, I stopped. What ever I could not help or fix that was negative; I pushed away because I can’t do it. I am too “sick”
Oh my god I’m sick. So I work on the positive. I fall sometimes, it is not easy but it is worth it. So if I can’t change it, fix it, help it, or correct it, I close my eyes and push it in my mind with my hands... what ever works... but push it away. Worrying turns into negativity, and that turns into someone I don't want to be because it is painful. I always write what ever it is down and when/if it can be fixed or taken care of it will be... but if I can’t today, then I push it away. It’s hard, scary, lonely and overwhelming and and and and and and………………. So just STOP, and push it away, not forever... just for now.
When you can deal with it you will.

Deal with what you can today.

I dedicate this to all my IH & Chiari friends who I know RELATE!!!  Because we are now FAMILY!


Saturday, March 12, 2011

Surgery #11 on RRD Feb.28 2011

We ~ Jeff, Tiffany and myself ~ arrive at Rush University Medical Center in Chicago, Il at 5am Monday Feb.28th for my 11th surgery.  Today is Rare Disease Day and I have an article in both of my local newspapers TODAY! And I'm having surgery again!

Today's surgery is to correct the tubing from my shunt into my peritoneum.  Apparently the surgeon didn't put in enough of a lead and it pulled out of the peritoneum, and is draining into my fatty tissue where it is just collecting. 
When I had my first post-op appt after the surgery I had mentioned that my abdomen felt "weird" especially after I ate. They sent me for an ultrasound that I had done a few days later on Feb 12th. Buy that time I had started to get a small lump around the incision. The ultrasound tech confirmed the fluid in there, but the radiologist could not confirm what it was, or why... So my Neurosurgeon sent me for an abdominal CT-Scan. I had that done on Feb 17th. By this time, I now have a huge sac of fluid 6x4x4 mass of CSF that is not being absorbed in the fatty tissue, it's just collecting there.

I get the results of the scan, the Neurosurgeon wants to SEE the scan because the radiologist again cannot confirm what it is, and WHERE the catheter tip is on the written report... Is it in the peritoneum and there is a leak? Or is it not even in the peritoneum? They ask me to overnight the scan with the results, so I do.
On Feb 23rd, they tell me I need surgery to correct the catheter, It is NOT in the peritoneum...

My surgery was scheduled for 7:15am. On Feb 28th. The surgery itself went well.  The catheter tip was indeed outside of the peritoneum, and he put in extra tubing so that wouldn't happen again! All went well, I was out of recovery and into my room around 1pm. Jeff and Tiffany stayed with me for a few hours, then headed home before the rush hour traffic started.

I was discharged from the hospital on March 1st. I felt pretty good, I was really sore, but overall felt good!


On Thursday morning I sat at the computer for about an hour, going thru about 4 days worth of e-mails, and catching up on Facebook, while having my breakfast & coffee. My head hurt, but not the usual hurt... I finished up on the computer and went downstairs to watch some TV and take it easy.

I didn't feel very well, and just figured my shunt was actually functioning now, so maybe I just needed time to adjust... Didn't really think it was anything other than that.

That evening, I didn't eat dinner until almost 7:30 or 8 o'clock.  I was so nauseous, i couldn't eat and my head was screaming so bad that I went to bed early. Thought I may have takin my pain meds without having enough food in my system, and it was making me sick. I went to bed with an ice pack, a cold washcloth, and a garbage can next to my bed!

The next day, Friday, I felt fine! I got up before Tiffany left for school, we talked a little before she left, I had my breakfast & coffee while checking my e-mails and Facebook... Then all of a sudden I started to get this weird pain up my spine, gripping pain in the back of my head, and I started throwing up.  What the heck just happened? I thought to myself... I didn't even shut the computer off... I grabbed another icepack, and went to lay down in bed.

After sleeping for about an hour, I felt better.  I went downstairs to watch some TV, and my head started to hurt again... So I just laid down on the couch, and I felt better.  Then I got up to heat up some soup from the night before (the dinner I couldn't eat) ate the soup, and had that same overwhelming feeling up my spine again, gripping pain in the back of my head, and I run to the bathroom to throw up! Then I go straight to my bed to lay down, and I am completely dumbfounded as to what the hell is going on. I laid there for a few minutes and it dawned on me that I was having LOW PRESSURE HEADACHES!!!

The Nurse Practitioner that works with Dr Munoz is off on Fridays, but I call up there anyway to make an appointment for Monday, March 7th. to get the shunt valve adjusted...

When my shunt was put in, the tubing pulled out of the peritoneum, and I had that shunt valve adjusted 2x's while it was not working properly... Now the shunt is draining where it is supposed to be, and it's draining too much fluid!!! FYI ~ A low pressure headache is 100x's worse than a high pressure headache!!! I realized that if I wasn't laying down, I was throwing up! So from Thursday night to Monday afternoon, I was on my back, or side, laying down on the couch or my bed.  It is very hard to remain laying down like that! ALL of my joints were killing me. Everything was sore and stiff... But there wasn't anything I could do about it!

Finally Monday comes, and we drive to Chicago. Now remind you I cannot sit up! Jeff drove, and I sat in the front seat, but with the seat laying all the way back.  Now let me also remind you how horrible of a passenger I am... I have horrible anxiety driving to Chicago... I had an icepack on my head, a pillow under my head, and on top of my abdomen because I still have staples from my surgery on Feb 28th, so I use a pillow for seat belt protection, and I have a cold washcloth over my eyes so I cannot see anything! I trust Jeff he's a really great driver, I just have anxiety! I was proud, I didn't freak out at all! And I made it the whole way without feeling like I had to sit up and "see" That's HUGE for me!!!

It's a very long walk from the parking garage to the Dr's office. A very long walk, one I was sure I could not make with this low pressure headache! After all my surgeries... this is the first time I had to use a wheelchair!

Robyn, Dr Munoz's nurse practitioner came in the room, and I explained what I thought was going on. She agreed and seeing me in so much pain hurried and got the magnetic device to change the setting on the valve. She has a hard time at first getting it to register. Then it does, but it's NOT set at the number it was last programmed to...??? We were kinda freaked out about that! When did it change, and how did it change? It took 3 people and 1.5 hours to program my shunt valve!!! CRAZY!!! I was completely miserable, not to mention confused by what the hell was going on with this shunt! The number it was set at, at my last appointment was 1.0. Today's appointment it was at 1.5. Even at 1.5 I should NOT have low pressure headaches! It took Robyn, another nurse & the help of my husband to program the shunt to 2.5... Which is a crazy high number for me, I'm comfortable around 1.0 to .5... Robyn tells me it's set at 2.5, and that's all she can do right now to get some fluid to build back up in my system, and that she will talk to Dr Munoz on Tuesday morning, and call me...


I've suspected it since my very first post-op appointment! Tuesday Robyn calls, I tell her that NOTHING has changed, it's been almost 24 hours, and I feel exactly the way i did over the weekend!

Tuesday afternoon, Robyn calls me back...
Dr Munoz wants me to have surgery the next day to have it replaced!