Dealing With a Chronic Medical Condition, and Difficult People

After I was diagnosed with a rare brain cyst, I was just sure I would be getting the best treatment. I just knew that my case would be viewed as urgent and critical. Boy was I wrong! Instead, what I got was the big blow-off. I got the run around, condescending looks, and told to go home and stop worrying - my problem wasn't really a problem at all (so-to-speak).

I tried, Lord knows I tried to believe in the doctors that were "taking care" of me. I wanted to believe that the cyst wasn't "the" problem that was causing all the odd symptoms I was living with, but turns out it was. How wrong they were. Two brain surgeries later, including inserting a shunt into my cyst, and now, a whole new set of problems were developing. I had a boatload of new problems and was, in a sense, back to square one in trying to find a doctor to take care of me - to believe me and want to help me. But once again, that would prove to be a difficult task. What I got was more doctors to give me more sideways looks, and more of the brush-off that I had become accustomed to.

Turns out that my shunt had been over-draining for too long, and this over drainage caused my brain to sag and for me to develop what is known as a Chiari Malformation, where the brainstem herniates into the spine. I was in trouble. In the end, my shunt pressure had to be adjusted over and over again to get more fluid in my head, around the brain to help float the brain back up. In the end, it would help a little, but not enough. It never did float up, back to its normal position, and not all of my symptoms were resolved.

It was one thing that doctors didn't believe me and wouldn't listen to me. It was one thing to have them ignore me and my problems, and for them not take me seriously- that was all bad enough. But when certain family members, even close friends began to belittle my situation and try to make me feel as if I needed to just "get over it," and "move on," that was almost harder to take. That was almost too much to bear. You expect that the people closest to you in your life will be supportive. You expect that they will always be there for you. But for me, their denial of support and their disbelief, although it didn't affect me in the way the doctors' disbelief did, but it was almost as devastating. I needed those closest to me to be supportive, and I needed their care and support. When I didn't get it, I realized I had a decision to make - to keep them in my life? Or to cut them loose? So, I decided to cut them loose. I decided to "clean house" and only keep those that were supportive and those that were kind and understanding, in my life.

It was hard. It was a tough thing to do, but their negativity, their condescending remarks and even looks, were only making my health issues worse. I decided to surround myself with only positive, supportive people. I, nor my health, could afford the stress of worrying about whether people in my life were on my side. Whether they were going to support me, or doubt me. I found myself feeling sicker, both physically and mentally, with always worrying about whether or not certain people would listen, believe and support me. I couldn't stand the worry with what I should share with them about my condition, and the worry of not being able to talk to them about what I was going through and dealing with for fear that they would tell me I need to "Get over it," or "You've already had your surgery....move on." No, I couldn't do it anymore; not if I was going to heal; physically, emotionally, and mentally.

I have missed some of my old friends that I no longer have contact with, but it has also been a relief. I feel relieved that I don't have to make sure I say the right thing to them so that I don't get a sermon about "getting over things" or "why do I want to stay in the negative?"

I do understand that those who have never lived through what I have, cannot truly understand or appreciate what I've been through and what it is like. But I also don't think that they should try, or judge. To be preachy and bossy about a situation that they have no experience in, does no good. If anything, it is damaging and can make you feel worse - physically, mentally and emotionally. It can destroy relationships, and apparently so, because it destroyed several of my relationships.

One reason I wrote my story, "It's all in Your Head," was to help others better understand what all I went through and continue to go through. I want to help doctors and medical staff understand what patients go through, as well to help others who are living with a long term, chronic medical condition. I want them to see what a patient goes through, especially when they do not listen. I have heard that it is doing all that I have mentioned. It is out there and reaching all kinds of people. It is a human interest story that many people can identify with - whether it's a brain cyst they live with or some other medical condition. And I hope to reach many more as time goes on.

"It's all in Your Head" can be found on Amazon, through Barnes and Noble, on Tate Publishing's website and ordered through any bookstore.  It is under Maria McCutchen and will make a nice gift for someone you know who lives with a chroinc medical condition, or for yourself.

To Decompress, or Not to Decompress?

When you live with a Chiari Malformation, there isn't a whole lot, medically, that can be done for treatment. The most common form of treatment for a Chiari is, decompression surgery. It is an in-depth surgery that, like any other surgery, is not without risks. As a matter-of-fact, there are quite a few risks involved with a decompression surgery.

Because the tonsils of the brain are herniating into the spine, below the base of the skull, they must be made to be kept within the skull so that they no longer "dangle" below the skull. It is when they get too low, or fall beneath the skull line that you can have horrific symptoms. It does not matter whether they have herniated just a couple of millimeters, or several, each individual will experience different degrees of symptoms.

Symptoms that are common amongst those with a Chiari are:

• Pain
• Headaches
• Numbness
• Balance issues
• Problems swallowing
• Nausea/Vomiting
• Muscle weakness/Tingling

I experience and/or, have experienced all of these symptoms at one time or another, and more. Some symptoms are regular, nearly daily symptoms, while others bother me sporadically.

Other problems I deal with are:

• Vision disturbances
• Audio disturbances
• Sleep disturbances
• Restless leg syndrome
• Sleepiness at odd times
• Muscle twitching

If I just had the Chiari to deal with, I think I would have already had my decompression surgery. But.....because I also have a significant sagging to my brain, this makes my Chiari different than many cases. It makes it "tricky" and with many more risks. It has been thought, and explained to me by my neurosurgeon who follows my case now, that although he does perform the Chiari surgery, he does not want to attempt to repair mine, for fear that he will make my sagging worse. He has recommended that I travel to New York, to the Chiari Institute, to see if they could help me. He says that they see and have seen just about every type of Chiari case, and if anyone could help me.....they could. But I've yet to go. After all I have been through with my past two brain surgeries, complications from my shunt, and the symptoms I currently live with, I am afraid to rock the boat. I'm afraid to go through a major surgery, only to come out at the other end with more problems and complications.

Maybe one day I will decide I've grown tired enough of living the way I do, to where I want to have the surgery. Maybe one day I won't have a choice, but to have the surgery. I do not know what my future holds, but whatever it holds, I just hope that I will at least be able to live life with some sort of quality. I hope that I live well enough that I am able to enjoy my two boys, watch them finish growing up, and am well enough to be able to be an active part of their lives.

So, until then, it is a question of, "To Decompress, or Not to Decompress?" Everyone has to make the best decision for themself at the time, and as of yet, I have no decision. I do not know what is best for me, and until there are substantial guarantees that I would walk away from such a major surgery feeling better and doing better than before I went in....I will probably stay just as I am.