I finally got the results of biopsies done earlier this month. Though only 45 years old, my primary care doctor pushed that I have a colonoscopy done. The tests results were this: A precancerous polyp was removed and all other tests came back negative.As a result of being caught early, the doctor reassured me that I would have no problems. I can not begin to tell you how blessed I am to know this!!!
I had my annual Mammogram done this past Monday. Should have the results in two weeks.
As the leader of the Cascades LiveStrong Army I have picked as our groups focus the need to have cancer screenings done and done on time. The motto I have picked is this:
Early detection = greater chance of cure.
So, I ask you this. Have you had your cancer screenings done? I am living proof that early detection is so important.
Life is good,
Sarah
I spoke today to the Neurosurgeon’s physician’s assistant today. He was just as much involved in my care as the surgeons. After updating him on my progress I told him about a question I was asked over the weekend. I was asked why, after a horrific 3 1/2 years would I be willing to stay involved in leading a on line support group for people with Trigeminal Neuralgia, now that I was better. I looked at the person and said, ” Two people who had successful treatment for their Trigeminal Neuralgia came to support group when I was so sick. They gave me hope that there was a answer out there. It was just a matter of where. It is my time to do for others what was done for me.”
The group is called livingwithtn. The group is just as much for family and friends as it is for patients.
Please check out the site. While there you will meet 150 of the world’s bravest people.
Life is good,
Sarah
I spoke to my father today. The conversation went well. I sense he is not wild about the thought of me possibly go through another surgery, but understood I would not be thinking about it if there were other options.
Life is good,
Sarah
I am sitting here with my gut in HUGE knots. I have sent a e-mail to my father asking him to call me, as I do not have his new phone number on me. I have not told anyone in my family about the fact I am meeting with the Neurosurgeon again in two weeks. This time to ask that he consider referring me for the necessary testing that is required before one is considered a candidate for Deep Brain Stimulation Surgery (DBS). In short DBS is a pacemaker for the brain. It is not a cure for Essential Tremor, but blocks the misfiring signals from getting through In addition to having Trigeminal Neuralgia, I also have Juvenile Onset Inherited Essential Tremor (ET.) . ET is the most common of all movement disorders. 10 million people in the United States have it, where only 1.9 million people have Parkinson’s tremor. ET is a progressive disorder which means it only gets worse with time. I have been dealing with it now for the past 38 years.It affects the person’s dominate side, which in my case is my right side. It has gotten to the point my right hand is shaking like a leaf in a hurricane force wind. I have few clothes that are not stained due to my having food fall in my lap. I seldom wear clothes with buttons as most days I am shaking so badly I could not get the buttons buttoned. I keep telling myself not to let people’s staring bother me but that is sometimes easier said, then done. Week before last, I went to get something to drink at the cafeteria where I work. I was shaking badly. Lost my grip on the cup and ended up with the large part of a 32 oz coke going down the front of me and the rest hitting the counter and floor. Would have not been so bad, except this happened during the lunch hour rush. Thank God a coworker had seen I was in trouble and helped me. Fact is everyone was great, but I wanted to crawl under a rock and die, I was so embarrassed. After 38 years, this was the straw that broke the camels back. Dr Eller specializes in DBS for ET. More than that he is doing research to try to learn what causes the disorder to start in the first place. While I am really discouraged right now, I am hopeful that as research like Dr. Eller’s is being done more than a treatment will be available, a cure can be found. Sarah
It is official. I have become a Twitter addict. If I do not get my daily dose of Twitter postings known as Tweets I go through withdrawals. ;o) Just kidding with that last comment,but I must say the people I follow are amazing. My favorites on the professional bicycling tour, men and women making a difference in the battle on cancer. Just in time for St. Patrick’s day I started following RTE which is the Irish equal to our PBS here in the United States. I also get tweets from the New York Times and the New Yorker Magazine. When I recently saw a Twitter Tweet posted by the CEO of the Lance Armstrong Foundation, stating that he had posted one of Lance’s post-op xrays to Lance’s Face book page, I went to Face book to check it out. I did not think one collarbone was big enough to hold one plate and 12 screws. While at Face book, I got my own account. For the first time since I graduated high school in, (Never mind. Not going there. ;o) ) I have been in contact with fellow classmates. It has been fun catching up. Seeing where life has taken us over the years. I would have never gone to Face book if it weren’t for that one Twitter Tweet. Off to Twitter, Tweet, Tweet, Life is good, Sarah
I just signed on to facebook. I also linked my blog here to my facebook page. Thought I better explain about the Trigeminal Neuralgia and the surgery I had to correct the problem so friends reading this for the first time would understand what I was talking about.
The Trigeminal Nerve is also known as the Fifth Cranial nerve. It is the largest of the Cranial nerves. It goes from the middle of your scalp, straight down to the tip of your chin. It is the nerve the dentist numbs before he/she goes to drill on your teeth.
In the winter of 2000 I felt like I had been hit in the left side of my face with 10 tasers. The doctor diagnosed me with Trigeminal Neuralgia (Tn). As I was already on one of the common medications to treat the disorder, the doctor upped the dose and for 3 months I suffered through the worst pain I had ever known in my life. This is saying a lot when you consider I had given birth to both my boys with no painkillers.I quit my job as all the talking and up and down movement of my jaw would trigger the pain. With time the pain went away.
I did well for the following 5 years. To my horror, though my Tn relapsed June 1,2005 and for the following 3 1/2 years did not let up. I researched different treatment options. As medications were no longer working I came to believe a Neurosurgery procedure called Micro Vascular Decompression Surgery would be the best next step. This would entail the Neurosurgeon going in behind my left ear and drilling a hole the size of a quarter into my skull. It was believed that either a vein or artery was hitting the nerve at the point where the nerve exited the brain stem, causing it to misfire.
I had the surgery January 14 of this year. Sure enough, what the neurosurgeons thought was happening was indeed happening. The main artery to the brain has looped it’s self around the nerve. The surgeons used medical Teflon to cushion the artery off the nerve. All good and dandy EXCEPT due to a rare bone deformity in my skull the surgeons had to drill deeper than normal and this resulted in a Cerebral Spinal Fluid (CSF) leak that proceeded to leak out my left nostril for ten days. Yes, you read that right.
All total I spent 16 days in the hospital. If the leak had not happened I would have only spent 3 days in the hospital. I ended up in ICU with a lumbar drain in my back for 5 days. The ideal was if the CSF pressure was lowered it would give scar tissue a chance to start to form around the dura and a chance for it to start healing, thus stopping the CSF leak. It worked ,but it meant five days, with me flat on my back, not being able to lift my head off the pillow for 23 1/2 hours a day. As active as I am I found this to be the hardest thing to deal with. Even more so than the actual surgery it’s self. Plus, I do not do well in really noisy environments and the ICU was extremely noisy with all the monitoring alarms that would go off constantly.
I am now 9 weeks post-op. To no longer have to deal with the horrible pain of the TN has made the surgery and all the post-op issues worth it. What makes it even more exciting is the surgeons say I will feel even better with time.
Life is good and getting even better,
Sarah
Life is good. For the first time since my MVD surgery I have had no pain. YEAH.
I am counting my blessings,
Life is good,
Sarah
I called the electric company today. I was not protesting my bill but was asking that I get a one week extension so I could work to wards getting the money they were asking for. Every step of the way, the person I was talking to just kept saying, Sorry, if you do not have the $50.00 in our office by today at 4pm we will be shutting you electricity off tomorrow at 12am. I had brain surgery, and a lot of complications and the doctor did not clear me to go back to work until 3 weeks ago and I am looking for work I told her. Sorry, not our problem was the response. Now by this time I was so angry I was coming unglued. Finally after my blood pressure going up to the point I was starting to get a headache, I asked to speak to a supervisor. I was placed on hold for a couple of minutes. No problem. The customer service rep came back on the line to tell me the supervisor granted my request this one time but, I would have stay current with the bill in the future. I had no problem with being told I would have to stay current with the bill. The problem I had was with the in your face we do not care attitude of the Customer service rep. I have taken training to learn how to deal with stressed customers. Had the person on the other end of the phone just acknowledged my positron and then told me she could not help me that would have been different. Instead it came across like a fuck you, just give us our money.
I did take a customer service survey and when asked for my verbal input I said,” In these times when many people are out of worked and stressed out at to how they are going to pay their electric bill, you may want to train your workers on how to speak to them when they contact your company to make payment plans. A in your face attitude on the part of your consumer service reps will not help your company’s public relations.”
I am still calming down. Speaking up has gone far to help.
Life is good, even if the phone call to the electric company left a lot to be desired.
Sarah
I have been sitting here talking to a neighbor. I was telling her about things I was doing to keep my sanity when I was in ICU for five days in February, with a lumbar drain in my back, not being able to lift my head off the pillow for 23 1/2 hours a day. I watched so much Public Broadcasting, I have not watched it since I have been home. Lost count, when I counted 300 holes in the tiles of my ICU room ceiling. Thought I would escape out the back door of the ICU until I realized the door was right across the hall from the Hospital Director’s office. The man is a Critical Care doctor, who I speak to often. He saw me pushing my IV pole around the ICU and asked me what had happened. It would have been my luck, I would be going out the door, when the director would be coming out of his office door and I would have been busted. Shoot, could not even get out of the bathroom, without the Attending Neurosurgeon waiting to speak to me. I was thinking if they wanted to find me, I would be found and escape would be futile.
The hardest things to deal with were not always physical. Once a good plan was in place to deal with the horrific spinal headaches I was okay. What was a on going battle the whole five days were the mental battles. For one as active as I am to be told I had to be flat on my back for 23 1/2 hours a day was devastating. I was really unhappy with the situation I found myself in. I thought though, “Sarah, you can do one of two things here. One, complain and make yourself and everyone helping you miserable or, two, realize this is for the best and deal with it.” I always tried to keep my sense of humor. That and my lipstick on. Hey, just because I had to wear a cruddy looking hospital gown did not mean I had to look like crud now did it?? :O)
One day as I was looking up at the ceiling and praying, I thought God, there has to be lessons to be learned here. What did l learn? Escape would have been futile and to stay put. Two, yes sometimes the biggest battle is 99.9 % mental.
Sarah
My first bike ride in almost four years was on a madsen cargo bike. Can tell you they are sweet bikes. Check them out at www.madsencycles.com. If you speak to Jared, tell him Sarah, the bell ringer from Portland sent you.
Life is good,
Sarah