Chiari Malformation - One of Several Medical Issues I Live With

It's been a while since I've posted here ...and I do plan on getting back to regular postings.  I want to help others who are going through similar situations as I have been through, and possibly similar problems that I still deal with today. 

I not only live with a very large brain cyst; I live with a significant Chiari Malformation as well.  And, to add insult to injury, I also have brain sagging - my brain literally fell away from the cortex and sags downward.  While many people are born with their Chiari Malformation, known as congenital Chiari, mine was acquired - meaning that it developed later in life and due to another reason. 

My Chiari developed from the shunt that I have, over-draining and causing my brain to sag.  When the brain sagged, my brain stem herniated into the spine.  Mine is a significant Chiari of approximately 8mm, and is very symptomatic for me.

I have lived for over 5 years with my Chiari.  I was 38 years old when I developed my Chiari and I was diagnosed with an MRI.  There was no mistake in the diagnosis.  It is a significant herniation of approximately 8mm, and is very symptomatic for me.  The doctors told me that just by my symptoms alone, they knew I had a Chiari.  They didn't even need the MRI - but the MRI confirmed it.

I was told that I may need to have the Chiari surgery one day.  If my symptoms continued to stay bad for me or get worse, then surgery may be the route I would have to take.  As of yet, I haven't had it, and mainly due to the fact that my brain is sagging.  Most neurosurgeons I've seen have told me they are afraid to touch my case because they are afraid they'll make the sagging worse.  They have all recommended I go to the Chiari Institute in New York, claiming they would be the ones to know if I can be helped.  But I just haven't been able to muster the nerve, the strength, or the financial resources to go and to look into it.  So as of now, I am not a "Zipperhead."  Only a "Zipperhead" from the two brain surgeries I've already had, but not the Chiari surgery.

As far as treatment for my symptoms, I mostly try relaxation treatments.  Sometimes I may have to lie down, or do deep breathing in order to help control the pain, but I have not sought outside treatments for my pain and symptoms.  I do not take strong painkillers - I can't, due to all my neurological problems.  Basically all I can take for pain is Tylenol or Motrin, and sometimes, an occasional portion of an Ativan.  I have to be very careful with medications like Ativan, because my neurological system does not handle medicines well today.  Regular exercise does tend to help my particular condition most days, but even with that, I have to be careful not to overdo it, because that can cause my problems and symptoms to be worse.

My most odd symptom, that I still have bouts with today, is that I cannot sleep on my left side or back....only my right side.  I can lay on my back or left side, but to fall asleep on those sides is horrible.  After I'm asleep, while on those sides, I will usually wake up to the feeling that my brain is being wrung out.  I get extremely dizzy, feel nauseous, and can hardly stand or walk - I am very weak.  It is frightening.  There is talk that I may be having nocturnal seizures now, and my doctor is looking into getting a sleep study done, and I'm due for another MRI.  So I have no idea what it could be.  I have plenty of symptoms related to my Chiari, but that is, to date, my most annoying, frightening, and bizarre.
Living with Chiari is hard to explain to others.  Even family members don't understand.  If I could get friends and family members to understand Chiari and just one thing even, it would be that Chiari is very unpredictable.  People tend to think that because you seemed normal or good one day, that if you have a bad day the next, you are either making it up, exaggerating, or being a baby.  I'd like people to understand that you have no control over how things will be for you; day-to-day, hour-to-hour, minute-to-minute.  If they think your up's and down's are frustrating for them because they cannot plan something with you, or they see you as "fine" one day and the next, you are a wreck....how do they think you feel about it?

Attitude does play a big role in how I feel.  I have had a lot of ups and downs with my frame of mind and attitude.  One of the biggest things for me that helps keep me sane and in a pretty good frame of mind, is exercise, as I mentioned earlier.  The natural endorphins that flow with exercise can be like a drug.  They are a natural mood enhancer.  They not only help with keeping me in a good frame of mind, but help with pain as well....unless I overdo it.  When I feel better about my body physically, then I feel better all the way around.

There are days when I don't think the bad feelings will end.  Sure, I get discouraged and I will feel down.  On those days, something my mother always used to tell me when I was younger, comes to mind and today, I try to remember it and live by it....the quote is simple, but for me, powerful.  It is...."And this too will pass."  When I feel like the pain is awful, or I'm having a bad neurological symptom day, I say that quote over and over in my mind and remind myself, that tomorrow will be a better day...."And this too, will pass."

A couple of years ago I wrote my story.  I wanted to tell my story of what I went through and where I was today.  My book was published and just came out this past October - it is called, "It's all in Your Head."  It is now available through the publisher...Tate Publishing.com, on Amazon.com, through Barnes and Noble, and other places where books are sold.

If you or someone you know has ever dealt with a chronic medical condition, whether it be neurological, has had brain surgery, a Chiari Malformation, anything....it is a book that will inspire and help you to realize that you too, can get through what you are going through.  Even if you haven't lived with a chronic medical condition....it's a good read.  At least that is what I have been told, and keep hearing.
For anyone living with Chiari and you feel alone...know that you are not.  There are many others out there who totally understand what you live with, and are going through, and we will all band together and comfort each other.  If only through a blog.

Should I Have surgery, or Shouldn't I?

Ok, so it has been over five years since I was diagnosed with brain sagging and my Chiari.  I have been putting getting it corrected for so long, but now, I no longer feel that that is an option.  I am at the point where I feel like I "have" to get it done.  I just hope that I didn't wait too long.

This fall, I plan on making a trip to New York to the Chiari Institute to see if anyone there can help me.  I know there have been changes over the years; I see them, I feel them.  My balance, as I've mentioned before, has really gotten bad.  I have seen a difference in my vision, my dizziness and more.  And the "more", is annoying.

I know I have to do this soon....now, or there may be no chance at all of them fixing these or helping these issues.  I was told a long time ago, that the longer I wait, the less chance there is in making things better....making a difference for me.  I don't remember what that window of opportunity was, but I hope I haven't missed it.

I am going to start being better about posting on my blog.  Especially as I start back to seeing doctors for these issues.  With my very bitter divorce last year, I really didn't go to the doctor.  I was already so burnt out on the whole "doctor, MRI and everything that goes with it" scene, that adding a divorce to my life just seemed like too much.  So I avoided going.  I was simply unable to muster the energy to take care of things with "me" like I used to.

I am keeping my fingers crossed that they can help me.  I am also keeping my fingers crossed that if I go through surgery - this major surgery, that it will make a world of difference for me and it will not have been in vain.

Fingers crossed!

To Get Chiari Surgery or Not to Get Chiari Surgery

When I was diagnosed with a chiari malformation in October of '06 I was devastated. I knew exactly what that meant, that my brain stem had herniated into my spine. I was also aware of the symptoms that a chiari could bring and was already living with many. It was the reason I was almost falling down all the time, the reason I had such horrible nausea, and the reason my right eyelid was sagging. And I had excruciating pain on top of my head that felt like someone had taken a good shovel to my head. I was miserable. But at least I knew now. I now had a diagnosis, that for months I had to guess as to what was wrong with me.

My chiari was not one I was born with, a congenital chiari. It was an acquired chiari, meaning that it developed due to other reasons. And my reason was my shunt. For several months my shunt overdrained and caused me to lose precious cerebral spinal fluid. With that, my brain began to sag and the brain stem fell below the skull line and into the spinal column leaving me with unbearbale symptoms at times.

After living with this condition for nearly four years, I am done. My balance and dizziness drive me crazy. I am tired of feeling like I am on a boat all the time. So I am looking into corrective surgery to be done at the Chiari Institute in New York. I have been recommended the Institute by my neurosurgeon at Duke University. I will follow his recommendations and send the institute all my records and films and let them review my case to see if I am a candidate for the surgery. If not, I may just have to live like I have been and try to find a way to make peace with my body and my brain.