Sunday, February 28, 2010

Step two to weighing 338 pounds, develop a chronic illness (21-25 years old)...

Of all the things I hope to post in this blog, today’s post will most likely be the longest, the hardest to write and for many people in my life the hardest to read. And for many it will also be the most surprising, many that knew me growing up have no clue I went through this, and most that have known me since 2000 have never been told.

This part of my life has most defined who I have become physically and emotionally, but and at the same time is the part of my life I have worked the hardest to not let define me as a person. On any given day I have had varying degrees of success with that goal.

In 1991 I was about to turn 21 years old, I was a sophomore in college and was heading for a career in either medicine or biomedical research. My weight was around 200 pounds and I was starting to overcome some of the insecurities from growing up. I was starting to come into my own as my brain could now trump my body. That all changed in the blink of an eye.

A few weeks short of my 21st birthday I began having debilitating headaches and Vision problems. After a long and involved search for an answer I was finally diagnosed with Pseudotumor Cerebri (PTC) which is now known as Idiopathic Intracranial Hypertension (IIH). PTC is a rare disorder without a known origin. The short version of the disorder is that your body has too much of the fluid around your brain, spine and optic nerves (cerebrospinal fluid) and that excess fluid produces the same symptoms as a brain tumor (hence the name pseudotumor).

If you read the literature, most people who are diagnosed with PTC are women 20-40 who are overweight. But no one has ever figured out which is the cause and which is the effect. Also many children and men are diagnosed but these get less documentation. I personally believe I have battled this disorder since the year where I was taking antibiotics every other week. I have come to see that during that time something in my body changed drastically. I can look back now and see symptoms of the disease throughout my childhood and teen years.

My adult battle with PTC was a nightmare simply put. In the 6 years I was actively fighting it I had 5 shunts implanted, I had 5 optic nerve sheath surgeries, 80+ spinal taps, took every medication on the planet, fought meningitis twice and spent months at a time in the hospital. I lost my vision multiple times as well.

So how does all this fit into my weight loss journey? As I mentioned above, PTC has been reported to be linked to obesity and weight gain and with a disease that most doctors have never heard of and which is difficult to treat, it is very easy for the medical profession and those supporting someone going through the disorder to slip into a “blame the victim” mentality. It is even easier for the person going through it to find the disease their own fault. It is a disease that is unrelenting and for someone like myself who tries to control the world around them, being at the mercy of a disease you can’t control was overwhelming, and sent me multiple times in a life and death battle with depression. It also exacerbated every bad habit and misconception I had about food and eating and my body.

This is probably a great place for me to debunk one of my favorite myths. Anorexia does not only happen to people who weigh 80 lbs.!!! You can weigh 200 lbs, 500 lbs and still battle an eating disorder. The difference is when you weigh 200 lbs it is much harder to be taken seriously and to find treatment. I can say this from personal experience. I mentioned in my earlier post that I have a tendency towards not eating, well blaming myself for PTC sent me over the edge on that. For the better part of 2 years I struggled with not eating, with exercising to excess, with bulimic behavior. I would land in the hospital over and over when my bloodwork would bottom out, I would be patched up and sent back out to battle again. All the time people looking at me and seeing an obese woman and telling me if I would just eat less my PTC would get better. I can honestly say had my neurologist not stood by me, held me together and dragged me to treatment I probably wouldn’t be here today.

Most reading this are probably at a point of shock already, but please bear with me. As the journey was yet to take another turn, one that would change my life more than anything PTC could hand me.

As I mentioned, one of the treatments for PTC is shunting. Not the typical shunt most people think of, from the brain. But what is known as a lumboperitoneal shunt. A shunt which drains fluid from the spine to the abdomen. This kind of treatment never really worked well for me, shunts would fail after about a month, so when my neurosurgeon recommended a new type of shunt, with a value in the shoulder that could be used to flush it, I thought my prayers had been answered. I couldn’t have been more wrong.

I had the shunt implanted in January 1996. Fourteen years ago. The moment I closed my eyes in the OR was the last time my body would even resembled normal. I woke four hours later in the recovery room completely paralyzed on my right side (from head to toe). We would later learn that the shunt had dislodged between the operating room and me waking up. When they did an x-ray it was found wrapped around my shoulder like a bow. In the process of pulling out of my spine it damaged a significant number of nerves which controlled most of my right side. I spent the next few months learning a whole new life. I had to learn to use my hand again, I had to learn to walk again with drop foot and no sensation and I had to learn to live without feeling in half of my body. And I still live that way today!

Through a lot of research and some hard work my neurologist and I found an answer to PTC at least for me in 1996. Ironically after vowing to never have another shunt we looked in other directions and found my answer. The disorder appears to have a major link with the neurochemicals in the brain and an enzyme imbalance in the liver. And by avoiding many medications, artificial sweetners and certain foods I can now keep my PTC in check, although it is always there and sometimes rears its ugly head, but now I know how to fight it back.

But the enduring part of the journey has been the nerve damage. From that day in January forward exercise and walking became an ongoing challenge for me. I fell many times in the first few years, I broke bones and hid from the world for fear of falling in public. And every fear that I had about being looked at and laughed at was amplified. I was now not only that fat ugly girl, but I was also disabled. And everyone of those things lead to immense weight gain over the last 14 years. But I will save that part of the story for the next post.


  1. Pam - kol hakavod for sharing your story for that allows others to be there to support and cheer you on as you take steps forward.

    Sending { BIG HUGS }


  2. OMG Pam. What you've been through and you never got into any of this part of the saga yesterday!! I recently read about PTC. It's a pip. I fervently hope that when you arrive at your weight goal many of your difficult symptoms will be alleviated. How sad and difficult for you going through all of this without the support of your mom. You are really one strong cookie. Maria has relyed on me so much over her entire lifetime that I can't even begin to imagine how you dealt with such a serious illness without your mother. I will pray for you and for your lifetime success.