Response from Dr. Whiting

Dear Ms. Mancini,

Thank you for your interest in the Deep Brain Stimulation for Refractory Obesity Clinical Trial currently underway. This is a very limited trial in that the FDA approved only three subjects to be enrolled. We have closed the study to enrollment at this time.

We have been encouraged by the response of people who understand what our goals are in the study. It will be several years before we have any firm data to report publicly.

Thank you for your encouragement.

Sincerely,

Donald Whiting, M.D.

I am happy/surprised that my letter was acknowledged. Honestly, I thought that I would not have heard a response at all. I recognize that Dr. Whiting can't really give any advise, but I had hoped for more insight into preventing binge eating while waiting for the results from his study. So I weight (pun intended)

A Letter to Dr. Whiting re:Deep Brain Stimulation

Dr. Donald Whiting MD

420 East North Ave., Suite 302

Pittsburgh, PA

15212-4746

USA

May 10, 2009

Dear Dr. Whiting;

You don’t know how ecstatic I was to read of the recent success you and Carol Poe have had with your research in deep brain stimulation as a means of treating obesity.

I, myself, have been on a life long struggle with my weight, and recently underwent gastric by-pass surgery. In an attempt to increase my chances of success, prior to the surgery I sought and completed 2 years of out-patient therapy to help me deal with my “eating disorder” of bingeing. My gastric by-pass surgery was a success and in the last two years I have managed to loose and keep off 147 pounds. So why, you much be wondering, is this woman writing me?

Quite simply, I am losing control. Over the last 6 months, I have been documenting on my blog (Food & Thought ~ Adventures in Gastric By-Pass Surgery www.letitia666.blogspot.com) my losing battle with my brain. How I seem to be hard-wired to eat; that the impulse to eat outstrips my cognitive abilities to not eat.

I am at a loss as to how to successfully move forward and even more, terrified, at the prospect of ending up back where I started or worse.

Thus, I come to the second reason why I am writing you. I recognize that your research is still in its early stages and will not likely be available to the public for some time. With this in mind I appeal to you, hoping for some measure of insight into the condition which deep brain stimulation is designed to combat and from which I obviously suffer. Have you, in the course of your research, uncovered any process or tactic which would provide me with the level of control necessary to allow me to successfully wait for your promising new treatment to become available? I would be every so thankful for some guidance.

And finally, Dr. Whiting, I am writing to say thank you. Thank you for taking that leap of faith and recognizing that weight loss cannot be as simple as calories in vs. calories out. (If it was, we would all be thin!) Thank you for providing the evidence that I am not crazy and the problem just may be “all in my head”.

Again, congratulations! Keep up the fantastic work and I look forwarding to reading more about your research.

Sincerely,

Letitia Mancini

Knitting for me

Though I have been knitting for the last 6 years, I have never knit anything for myself - out side of a few pairs of socks.  The main reasons were 1) patterns for large women are few and far between 2) patterns for large women usually look like crap and 3) the cost of the yarn was outrageous and I really didn't want to spend that kind of money on myself.  Well I am proud to announce my first sweater for me.  

Since I have lost most of my excess weight, I feel like I deserve nice clothes and making something beautiful for myself really makes me feel proud of my accomplishments.  On top of that, I look good :) 

Me and My Brain

I have been talking a lot about how I feel that my brain is not wired correctly for survival in the Twentieth Century.  Now it looks like there is research being done out there that  proves my point.  

Carol Poe always had believed her weight issues were controlled by the brain, so in spite of the risks she enthusiastically agreed to participate in  Dr. Don Whiting's study of deep brain stimulation.  This is a surgery that is commonly used to treat Parkinson's.

On February 3, 2009, Dr.  Whiting, associate professor of neurosurgery and co-director of neuromodulation, did brain surgery on Carol to study the procedure's effects on obesity.  Although the prospect of brain surgery scares people, Whiting said the procedure is not as dangerous as it seems.  "Deep brain stimulation like we've been using for Parkinson's disease has a 1 to 1.5 percent chance of a serious complication such as bleeding, stroke, coma or death," he said. "Compare that to gastric bypass surgery, which has a 4 to 5 percent chance of a serious complication happening."

Not to mention the fact that gastric bypass surgery has no effect on hunger or the metabolism, both of which are addressed by deep brain stimulation, Whiting said.

The doctors of Ruby Memorial Hospital hope the procedure eventually will be widely available for obese patients like Poe who have made every other effort to lose weight.

See, I am not crazy.  I think I feel another surgery coming on!

Feed Me! I'm Hungry

Okay.  This may be in bad taste, but as somebody recovering from a food addiction, it just really made me laugh!  Just click on this and enjoy!

Feed Me!  I'm Hungry!

Hard Wired to Eat

I may have discussed this before, but it has become such an issue for me as of late, that I am blogging about it again.    Over the last few months I have stared to put weight back on.  This is to be expected.  All gastric by-pass patients begin to increase their weight after the first 1 1/2 years.  It has to due with the fact that the pouch has stretched out. thus accommodating more food, combined with the fact that most people begin to feel sensations of hunger again.  In my case, it has to do with the fact that I have also developed a "grazing" style of eating.  Basically I eat really small portions and I eat all day long.  The end result of this behaviour it that I am consuming way to many calories.

I began to do some research into the proper amounts of food intake.  My research reminded me, yet again, of how ridiculous the Canadian Food Guide is.  It asks people to consume way to much food in a day.  My research also lead me to understand the importance of creating muscle when exercising.  So, with this information in hand, I have tried to reduce the number of times I graze in my fridge and  increase the number to times I go to the gym with my modified routine which now incorporates weight training.  "So what is the problem?" you may ask.

The problem is that, in spite of the gastric by-pass, my increased knowledge and my desire to maintain my weight loss, I just can't stop eating!  I am not saying that I am binge eating again, rather I am just eating really small amounts of food every couple of hours and the accumulation of all that food results in my overeating!  I am so frustrated!  

I recognize that my  brain is not set up for our 20 century constant access to food.  (I would thrive as a Neanderthal!) I understand that I am hard wired to eat.  But even armed with this knowledge, I just can't seem to control my food intake.  I cannot believe how angry, frustrated and scared I am right now. I idea of gaining my weight back is terrifying.

So, yet another day goes by, where I resolve to do better, acknowledge each small success and try not to beat myself up with each failure.

Remnants

BEFORE


AFTER

Freaked me out the first time I realized that half of my tattoo was missing, though it does give you an idea of exactly how much tissue was removed from my back.

Now there are a couple of things that I must point out. First, don't get overly concerned about the brown spot on the left side of my back. That is a mole. The mole itself was never inked over for medical reasons and is actually in the original picture, though very difficult to see.

As for the scar, well it has only been 7 weeks since the surgery and the scar is still a vibrant red. I expect the colour to subside to a pale pink or possibly white within the next year.

As for the tattoo it self, I actually planning to have a tattoo artist design a new tattoo and have them reink it over the old one. I really don't know what it will look like yet, but I want the feeling of "flowing" or "organic movement" to be part of the design. I will post a picture when it is done. But that won't happen for at least a year or two.

Home Again, Home Again, Jigity Jig

I am home!  I arrived back in Toronto on December 26, but didn't get home until December 27.  Since we arrived in Toronto at 11:30pm (and were utterly exhausted and in much pain), Brenda and I crashed at the Sheraton Hotel at Pearson International Airport.  The following morning Eric, Brenda's husband, picked us up and took me home.  Brenda and Eric then proceeded to their home in Peterborough.  My friend Mary has been staying with me and helping me out for the last week.  (Did I mention that I have fabulous friends?)

I must confess that I have been doing nothing much but sleeping (and healing).   I find myself tiring quickly.  I have much more to blog about , but I just thought that you would like to know that I am home and well on the road to mending.