Another Vitek Survivor

Vitek is a company that made implants for the replacement of the temporomandibular joint (TMJ) for patients with severe temporomandibular joint disorders (TMD). The company was started by Dr. Homsy and sold the implants between 1983 and 1988 until they were taken off the market. They were recalled by the FDA in 1991. The FDA states “Debris in the joint from the implants can contribute to progressive bone degeneration of the condyle … and to a foreign body response which could start in this area and be carried throughout the immune system.”

My journey with the Vitek implant began in 1984. I injured my jaw at work. We needed to move a 700 lb copy machine in our office. Unfortunately, I gritted my teeth when I lifted and completely dislocated the TMJ disk on my right side. I was in immediate pain at the base of my skull and went to the emergency room. I thought I had injured my spine. They thought I might have an aneurism and ordered an MRI. Nothing showed up so I went to my family physician. Fortunately, he had just been playing cards with a dentist who had been discussing TMD. My physician noticed when I opened my mouth that it had a severe deviation to the right and sent me to the dentist.

The dentist fitted me with a splint. I also began seeing a Physical Therapist who tried to get the right side to release. Not only did it not release, but because of the stress from my mouth pulling right, the left disk was mutilated. After three years of therapies and fighting Workman's Comp I finally was awarded a settlement with the stipulation that I must have surgery to correct the condition. This was suppose to "make me whole," but was just the beginning of my nightmare. Workman's Comp refused to continue coverage after the surgery since they "made me whole" and were not responsible for what the implants had done.

I went to an oral surgeon who was suppose to have been an expert on TMJ implants. In a four hour surgery he removed my disks, reshaped my skull to make room for the implant and replaced them with Vitek Proplast Teflon Temporomandibular Implants. He also anchored them with 8 Titanium screws in my skull. I was not informed they were going to use metal screws. They didn't ask if I was allergic to metal. I didn't even wear a wedding ring because of my metal allergy and they didn't even notice. I didn't know enough to ask.

Needless to say I had a severe reaction to the implants. Before I even recovered from the anesthesia I was in intense pain. My head swelled up like a monster. I was in extreme pain in my lungs, stomach, colon, and bladder. The surgeon who had preformed thousands of these surgeries said he had never seen anything like it. He sent me home the next day, not knowing what else to do. It was a very painful 90 mile drive home. I began vomiting and had diarrhea. I went to the emergency room dehydrated and spent several days in the hospital.

Within three months of the implant surgery my condyles had completely deteriorated. I returned several times to the hospital with vomiting and diarrhea. I continued to have severe adnominal pain and was diagnosed with chronic gastritis. My neck swelled up like I had the mumps and I went down to 100 lbs. At the time my physician thought it was just a reaction to the implants and not eating. Then I gained 50 lbs and was diagnosed with Autoimmune thyroiditis from a different physician. I spent five years trying to get relief from my constant pain and illness.

Finally in 1992 I heard about the recall of these implants. I did not receive a notice from the surgeon or the hospital. When I went back to the surgeon he said it was not his responsibility to send a notice. He claimed it was the hospital's responsibility. He reminded me that I signed a release of liability and again he was not responsible for what had happened to me. He also refused to remove the implants and basically wanted me to go away saying there was nothing that could be done.

The hospital who provided the implants claimed they sent a notice of the recall, but it must have gotten lost in the mail. Again reminding me that I had signed a release of liability. I went back to the dentist who was treating me from the beginning and he contacted the School of Dentistry. The head of the department of Oral Surgery agreed to remove the implants in 1992. He had been warning surgeons about these implants from the beginning. I had 30 students in the operating room, but at least I was getting them out!

I have read about the difficulty of some people getting their insurance to cover the surgery to have the implants remove. In the beginning my insurance company gave me the run around. At the time my husband was working with the CEO of the corporation and had been telling him about my condition and surgeries. When the insurance company tried to deny coverage he called the insurance company and told them to cover it. By this time I had gotten to know the claims agent. The CEO had called her supervisor. She said when the CEO says cover cover it.

In 1998, my husband left me shortly after it was suggested that I might have MS. It is difficult living with someone who has constant pain and illness. He said I was going to end up in a wheelchair and he didn't want to take care of me. Amazing how he claims not to remember saying that. He was offered a job out of state and left me and my children to deal with selling the house and moving.

It all worked out in the end. I didn't have enough work credits to get SSD while I was married and he made too much money for me to quality for SSI. After he left me in poverty I was able to qualify for SSI and medicaid. He went on to start a new business and has a new wife to help him. I live in a small subsidized apartment in a senior complex, which is all I need and can take care of.

I continued to have multiple medical problems after the implants were removed. I am in constant pain from head to toe. Just the pain alone would keep you from functioning, but I also have difficulty thinking, remembering, and staying focus. It takes me days to write one post. I have difficulty keeping my balance and have constant dizziness. When I do have the strength and energy to get things done the activity puts me in spasm and pain.

I have to lay down with a hot pack and take a break while I am preparing food, and must rest for hours before I can get the dishes done. The Chemical Sensitivities makes it impossible to leave my home without running into something. Typing and looking at the monitor is painful and puts me in spasm, yet I still need to do everything online since paper and ink brings on a more severe reaction.

I do not take pain medications since they cause more pain in my digestive system than they would help. I do take gabapentin which helps with nerve pain, in the beginning it made me groggy, but I have adjusted. I also take Methocarbamol and Baclofen for the muscle spasms. I have a TENS unit which helps with the pain and spasms in my lower body. If it gets near my head it sets off my Trimengial neuralgia. Here is a chronology of what I have been through:

1984 – Jaw injury, Trimengial neuralgia, chronic paresthesia, chronic tendonitis
1987 – Bilateral Vitek Proplast Teflon Temporomandibular Joint Implant
             severe gastritis, degenerative arthritis, severe rapid condylar degeneration
1988 – Autoimmune: thyroiditis, gastritis, ulcers (no H. pylori), slight hiatal hernia
1992 – Bilateral Vitek Proplast Teflon Temporomandibular Joint Implant removal
1994 – Severe Interstitial Cystitis - autoimmune
1998 – Fibromyalgia, chronic fatigue, spastic colon, IBS, asthma,
             multiple chemical sensitivities
2001 – Thyroid/Parathyroid Lobectomy
2005 – Toxic encephalopathy, immune deregulation,
             autonomic nervous system dysfunction
2006 – Cervical arthritis

If you are a Vitek TMJ Implant survivor please join us on Google Plus communities @ Vitek Survivors.

Bren's Day

Positive thinkers always affirm blessings on themselves and see themselves as legitimate heirs.

I am going to try and get back posting daily blessings on my Google+ profile Brenda Dawson

I had a bad flu in January that sent me to the ER. Throughout these years of illness it seems the flu can always give me a set back...with more than I already am suffering. It is painful to just run my fingers through my hair. It is already so painful to talk and it seems I get more and more isolated. I am going to try and post again to keep contact.

God Bless You...Sending lots of blessings, prayers & love ♥ Bren

A Blessing for the New Year

Heavenly Father, 
We pray that You would give us joy to fill our days, peace to fill our hearts, and love to fill our lives.
Thank You for the plans You have for us in this new year. We wait in anticipation to see all You will do!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

The first snow

Winter has been slow in coming this year; with the result that our surroundings have been brown, grey and dull instead of being blanketed in snow. Yesterday I woke up to snow on the ground and, as I stepped outside, was greeted with the sight of gently falling snow. It left a beautiful white blanket over my apartment complex. I love early mornings and undisturbed snow. By afternoon it had all melted, but I am still grateful for the peace and serenity that comes with a gentle snow. 

Another Rainy Day

When I was young I always enjoyed sleeping with my window open on rainy days. My window open onto a porch so the rain didn't come in. I remember loving the cool breeze and smell of the rain. It was like going to sleep with a gentle lullaby. I still enjoy the rain. It's been a long time since I would feel safe leaving a window open while I sleep. I currently don't have a window in my bedroom, just a door that leads to the balcony. I usually leave the door open when the weather is nice so I can watch the birds and look at my flowers.

Now in my senior years and living with chronic pain, rain also brings additional pain. Rain brings not only a change in the weather, but a drop in the barometric pressure, which is pressure against the Earth’s atmosphere. That means that the pressure against your body drops as well, and your joints and areas that are injured can begin to swell. This swelling causes increased inflammation, and we require hormones to deal with this increased activity in our bodies. Increased use of these hormones can cause depletion of them, too.

We have, nestled atop each kidney, a small gland that produces both adrenaline and cortisone. These two hormones help us with energy, mood, immune function, pain management and the famous “Flight or Fight” response. The steroid cortisone is fundamental in managing pain, immune function and energy. When cortisone levels drop, these can all become a problem. Adrenaline is famous for energy and strength. Did you ever notice how your pain gets worse at night? That’s because our bodies slow production of both adrenaline and cortisone in the evening so we can go to sleep. It’s part of our circadian rhythm. The downside is the fact that we don’t have these hormones that help us feel better.

Something similar happens when a storm is coming. Did you ever “smell” snow or rain before it came? That “smell” is a change in the electrical charge in the air. It’s been described as a “metallic” smell. All atoms have either a positive or negative charge so they can bind to form molecules. As the barometer falls, the positive charge, or “ions” increase which causes a depletion of cortisone in the body. Seniors and people who have chronic pain may experience weather changes more acutely, since their bodies don’t have the ability to overcome these changes as easily.

Even with the increased pain, I still enjoy a rainy day. The rain has stopped and I have the door open. It's a nice crisp fall afternoon. There is a strong breeze so I have a large rock holding the door open. I have learned that while we may experience storms, we have to have the rain if we are to ever witness the rainbow. Some people walk in the rain, others just get wet. Learn how to walk in the rain. Use it. Learn how to appreciate life's sometimes storms. Otherwise you'll never be grateful for all of the colors in that rainbow when it appears.

Senior Living

I live in subsidized senior apartments. I am grateful to have such a nice apartment living on SSI. The apartments vary from 40-70% subsidized and there was only one apartment at my level...very poor, one bedroom. Since I was the first resident to apply it went to me. I was so excited to get an apartment 4 years ago. The buildings were new with a dishwasher and laundry room! You never appreciate things like you do after you don't have them. That's the way I was with the washer and precious! No more dragging clothes to the Laundromat. Of course, I have been posting about the balcony.

Almost paradise...with the emphasis on almost. What you gain in nice accommodations, you give up in lack of privacy, quiet, and annoying neighbors. My latest porch mate and ALL her friends and family can't seem to go anywhere without a cigarette in their mouth. I am very sensitive to cigarette smoke. When she first moved in they all stood around on the porch smoking. It came right into my apartment. I walked into my kitchen and it was filled with smoke. The manager did ask her to smoke on the balcony where it is not directly into my apartment. I can still smell it if my door is opened and the wind catches the smoke.

The other down side of senior living is...well...your dealing with older people who are more likely to pass away suddenly. We have had several deaths since I moved in here. The latest death was a gentleman who would take his walker everyday to buy liquor. He had been dead 3 days before one of his children called the police...and none of us noticed he hadn't been walking. It got me to wondering how long would I be dead before anyone realized I was gone. I don't get out or communicate very often. I would hate for my body to lay here decomposing. So...I am going to try to make an effort to start blogging more to let people know I am still kicking :)

 It was so quiet before all the people moved in!

...and so empty before I moved in

That clock died and Roger gave me a really cool Jukebox one. 
My dishwasher is still running wonderfully!

My Balcony

Just got in from cleaning up after the storm last night. I took down what I thought might blow away. Either we didn't get the wind that was projected or everything was secure...nothing blew flowers are fine...just a little water logged from all this rain.

I am moving very slow this year. My sister came and potted most of the flowers. I was trying to plant one pot a day and didn't get very far. Most of the Pansies and Violas are hers. They were going on a long vacation and she brought them over for me to "babysit."

I really enjoy looking at my flowers and birds. My bed faces the door to the balcony, which I try to leave open when the weather is nice. Since I spend most of my time in bed with pillows and hot packs it is nice to be able to admire my flowers, watch the birds, use the laptop, and watch TV... all at the same time.

Thank God for such simple pleasures!

William Rea MD

When I lived in the Dallas area I had the privilege of seeing William Rea MD, FACS, FAAEM. He has diagnosed and treated many patients with TMJ implants, as well as, published in the Medical Journals about his treatment. The first implants were done in Texas so there was a large concentration of patients in the area. Of course, he has had patients come from around the states and the world for his diagnoses and treatments. I made an appointment after reading the research article written by him and Deborah N. Baird. After various tests he diagnosed me with "Toxic encephalopathy, immune deregulation, autonomic nervous system dysfunction, and multiple chemical sensitivities."

"Fourteen patients with temporomandibular joint (TMJ) alloplastic implants who exhibit chronic signs and symptoms of chemical sensitivity are discussed. These patients were well before their implantation. Memory loss, confusion, imbalance, dizziness, non-immune vasculitis, petechiae, spontaneous bruising, edema, Raynaud's phenomenon, pain and autoimmune dysfunction are some of the symptoms and signs seen. Laboratory data show immunological abnormalities, including positive autoantibodies and altered T and B lymphocyte function. Provocation skin testing shows reaction to their implant material. The symptoms of patients with jaw implants are similar to those patients who experience complications from their breast implants. Similar abnormalities are seen with SPECT brain scan, in the autonomic nervous system, as well as laboratory data. All patients were sensitive to a wide variety of substances including toxic and in some cases to non-toxic chemicals (foods, pollens and molds). These same parameters were also similar in the patient with a known toxic chemical exposure without implants. A comparative discussion of the different parameters in all three types of patient is presented. A successful therapeutic intervention was developed using a massive pollutant avoidance program, nutritional supplementation and injection therapy for biological inhalants, foods and some chemicals. When indicated, intravenous therapy with antioxidants and heat depuration was added to their treatment regimen." Baird, D.N., &Rea, W.J. (1999). The Temporomandibular Joint Implant Controversy. Part II: Its Clinical Implications. Journal of Nutritional and Environmental Medicine, Volume 9 (no.3), pp. 209-222.

I would like to note that the breast implants were never recalled by the FDA. The Vitek implant was recalled by the FDA because of "catastrophic devastation." The FDA Enforcement Report has stated "Debris in the joint from the implants can contribute to progressive bone degeneration of the condyle of the mandible and/or glenoid fossa and to foreign body responses which could start at this area and be carried throughout the immune system." [This page has been removed from the FDA website]

Autonomic Nervous System Dysfunction

The autonomic nervous system (ANS) affects blood pressure, heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, urination, and sexual arousal. You don’t have to consciously think about these systems in order for them to work. The ANS provides the connection between your brain and your internal organs.  Whereas most of its actions are involuntary, some, such as breathing, work in tandem with the conscious mind.

Autonomic nervous system dysfunction is simply a dysfunction in one or all of these systems. Some symptoms that may indicate the presence of an autonomic nerve disorder include:
  • dizziness and fainting upon standing up (orthostatic hypotension)
  • inability to alter heart rate with exercise (exercise intolerance)
  • sweating abnormalities, which could alternately be too much sweat or insufficient sweat
  • digestion difficulties due to slow digestion. Resulting symptoms could include loss of appetite, bloating, diarrhea or constipation, and difficulty swallowing.
  • urinary problems. These can include difficulty starting urination, incontinence, and incomplete emptying of the bladder
  • sexual problems. In men, this could be difficulty with ejaculation and/or maintaining an erection. In women, this could be vaginal dryness and/or difficulty with orgasm
  • vision problems. This could be blurry vision, or the failure of the pupils to react quickly enough to changes in light.
  • tremor and muscle weakness, may also result from certain forms of autonomic dysfunction.
Any or all of these symptoms may be present, and effects may be mild to severe. Autonomic dysfunction is treated by addressing the symptoms of whatever form of dysfunction you are experiencing. Orthostatic hypotension, for instance, can be treated with lifestyle changes and medication. Symptoms can respond to elevating the head of the bed you sleep in, drinking enough fluids, and compression stockings to prevent blood pooling in your legs.

Autonomic testing is designed to determine how well your body is regulating your blood pressure and heart rate, and sometimes other functions. During these tests, your heart rate is measured using an electrocardiogram and your blood pressure using a cuff around your arm or finger. The tests include asking you to breathe deeply for two minutes, breathing as fast and as hard as you can for 30 seconds, maintaining a handgrip for 3 minutes, breathing against pressure for 15 seconds and placing your hand in ice water for 1 minute. All these tests are meant to stimulate your autonomic nervous system to produce changes in blood pressure and heart rate of short duration that reflect how well your involuntary nervous system is working.

First Snow 2015

I am enjoying the falling snow, since I don't have to go out. I spend most of my days in bed facing the windowed door to the balcony. I have always enjoyed the view of my flowers when it is warm and snow in the winter. Most of all I enjoyed watching the birds. I have neglected them the past 8 months. It's been a bad spell since May. Not sure what happened. I remember there was "another snowfall" of some environmental toxin. Everything was covered in a yellow powdered. I heard there have been careless cropped dusters. Not sure what it was. It burned my skin so I wore gloves to clean up what I could...not thinking about breathing it in.

Anyway, I starting having difficulty breathing. Just added one more thing to all the pain and fatigue I was already dealing with. I am use to bad spells. Needless to say the little I was able to do got neglected. The flowers became overgrown with weeds...still enjoyed looked at the weeds...they were green anyway. I didn't fill my bird feeders, not only from fatigue, but my car died in June and wasn't able to get to the store very often to buy seed. It is all I can do to get food for myself. My car is still in the shop, trying to figure out what is wrong with my Nissan. I have heard they can be difficult to diagnose.

In November, I finally went to a new doctor. He sent me to a pulmonary doctor. She questioned Pulmonary Hypertension, with all the autoimmune issues I have. The ANA and Sed rate came back positive and she wants me to see a Rheumatologist. I am not interested in immune suppressants unless it seriously affects my lungs. So far I am on the border of acceptable. She did put me back on an inhaler. The problem is I can't open my mouth enough to get the medication to my lungs. 

I also had a sleep study. Apparently I have severe sleep apena with central sleep apena. Central sleep apnea occurs because your brain doesn't send proper signals to the muscles that control your breathing. This condition is different from obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction. It is part of the autonomic nervous system. I have been diagnosed with autonomic nervous system dysfunction so it is possible there is a connection. I have started using a Cpap. It does seem to be helping. Hopefully things can start turning for the better.

I really should get out and feed the birds. I just saw a Cardinal looking for seed.
They are so pretty against the white snow.
Times like this I don't mind not having a car. Wouldn't look forward to shoveling out my car.

The ResMed AirSense 10 AutoSet APAP is an auto Adjusting CPAP. An APAP is designed to deliver your ideal pressure, on a breath by breath basis, increasing pressure when it's too low and decreasing pressure when it's too high.

The AirSense 10 differentiates between obstructive and central apneas so that you are always receiving appropriate therapy and pressure. It features an integrated humidifier, built in wireless communications,  AutoRamp™ with sleep onset detection, quiet Easy-Breathe motor, and expiratory pressure relief.