On Sunday 11/3/96, I bumped my head on the door frame while exiting from my car. It stung a bit for a few moments and I thought nothing else about it.
On Wednesday of that same week I started to get headaches, and a huge lump called a hematoma (blood clot) formed on the back of my skull so I starting taking Advil for the pain. I called my doctor and was told that it would be very painful for at least a month until the blood reabsorbs back into my system.
On 11/23 I called the doctor because by this time the pain was getting worse not better like he said it would. I was referred to an after hours doctor who confirmed that I had a blood clot and sent me home.
On 12/9 I saw the doctor again and by this time the blood clot had grown to a size of 6 x 2-1/2 inches and could be seen from across the room. The doctor ordered a CAT scan to check for a skull fracture. The blood clot did not show up on the scan because the contrast medium was not ordered and there was no fracture.
For the next month I went to the emergency room twice and was sent home both times with no results. I had x-rays, saw a neurologist, went to a pain clinic, saw a neurosurgeon and visited my own doctor several times with no relief in sight.
I was given every pain killer known to man: Fiorinal, Daypro, Amitriptyline, Tylenol 3 with Codeine, Ambien, Demerol, Clonazepam, Darvoset and finally Roxicet (Morphine) — none of which helped at all. I was taking a regimen of 3 extra strength or 1 prescription Advil and alternating with 2 extra strength Tylenol every 2 hours for over a month. Even this did not help me.
I even tried alternative medicine: feverfew which is normally taken for migraines which I have never had, and a topical herbal mixture of St. John's Wort oil, Arnica oil and Aloe Vera Gel which had a salad dressing consistency. I would plaster this greasy mixture onto my head every day, which made my long hair a nightmare to look at and had a nasty smell to it.
During this period I only missed one day of work and worked 45 hours a week even though I was not getting any sleep at all. I have never been a fan of suicide but Dr. Kevorkian was looking real good at this point. I could truly understand for the first time why someone would not want to live if that was how the rest of his or her life was going to be. I would get down on my knees literally crying and praying to God to take my life so I would not have to suffer that horrible pain anymore. It really felt like something was eating my brain!
On Sunday 1/12/97, I was at my boyfriend Arnold's house and I was having a very difficult time walking. The pain was extremely excruciating and I had to lie down on the bed. After that I lapsed into a coma.
The following scenario is what he told me happened, while I was in the coma since I remember nothing of the next three days. Sunday, after Arnold realized I was in trouble, he called the doctor and he told him to let me sleep it off and call him in the morning.
Next day Arnold called them back and insisted that the doctor see me. He had to drag me into the office since I could not walk on my own. The doctor then told him that I probably was suffering from a drug overdose and sent me home.
By Tuesday morning when I still did not wake up, Arnold was furious and called the doctor's office back and told them he was going to call an ambulance and get me to the hospital. When I arrived at the hospital Arnold talked with the neurologist that I had seen previously about what was happening and they ordered another CAT scan for me, and this time they put the contrast medium in.
To the doctor's horror they saw a white mass in my cerebellum, which they could not identify. At this point a neurosurgeon was called in. He checked out the pictures and said that he would need to perform brain surgery on me the next day when he could get his team together. Thank God I was in the coma because I would have said no way! He said he was going to get his people together and be back in the morning.
After a few minutes he came back and said that after assessing the situation further, he felt that he must do emergency surgery on me that night instead of waiting because he felt I would not live until the next day. Here comes the gory part.
My brain was so swollen with fluid, he had to put a hole in the top left side of my skull the size of a quarter and insert a drainage tube in. He then made an incision from the base all the way to the top of my skull. All the neck muscles were then stripped from the back of my head. When he opened me up he saw that the skull bone was full of holes and soft at the base due to an infection (Osteomyelitis) that had eaten it away. He had to cut it all away to keep it from spreading further. He then had to remove a tablespoon of pus from the cerebellum area, which ended up being the white area that had shown up in the CAT scan.
The hematoma that was originally the source of my pain had become infected with two forms of strep and a staph infection, which had eaten it's way through my skull and formed an abscess in my cerebellum. If the doctors had only ordered a blood test when I was having so much pain, they would have seen that my white count was in triple digits and could have given me antibiotics, which may have killed the infection and I never would have had to have this horrible surgery. Instead they just kept taking my temperature, which was never elevated during this whole time. I usually don't get a temperature when I am sick, and the all Advil and Tylenol they had me on probably kept my temperature down as well.
The next thing I personally remember was waking up in the ICU with all kinds of tubes hanging out of me, and a reverse Mohawk hair cut. They closed the huge incision with metal staples so I felt like I had a zipper up the back of my head. They had me on a mixture of three different very strong antibiotics for the first week because they had to make sure they killed all three forms of the infections. These were very strong and caused very nasty side effects.
After spending two weeks in the hospital they sent me home with an IV Pic line implanted in my arm and I had to administer IV Vancomyacin to myself several times a day for the next month. I eventually developed an allergic reaction to the drug called Red Person syndrome. I was covered from head to toe with a horrible rash and had trouble breathing. Needless to say they made me stop taking the antibiotic. Since there was no other drug that would kill this type of infection I had to hope that it had done its work. I was put on a pill form of antibiotic called Biaxin for precautionary measures.
By March I felt that I might be ready to go back to work but the story doesn't end here. A few days before I was scheduled to go back to work I started having horrible pain again in the back of my head and neck. It started out as a mild stiffness and very quickly got unbearable. It was very frightening; it felt like something was eating away at my spinal cord. I thought that the Osteomyelitis (bone infection) was back again!
I had several doctor visits and they could not find anything wrong with me. I learned a lot from the ordeal I had just been through and got very efficient at surfing the web. I took my life in my own hands now. You would think after all I had just been through they would listen to me but being a woman they very often don't take you seriously.
I discovered on the web that one of the best tests to show up a bone infection is an MRI with contrast and I insisted that they give me one immediately. They put up a fight but I was in no mood to deal with incompetence again and I won the battle and had the test. Because I did the research myself and insisted on this test, I saved my own life this time.
The MRI revealed that I had a blood clot in my brain in a very dangerous in-operable area — the left internal jugular vein. I had to make the decision to take Coumadin, which is the medical name for Warfarin (RAT POISON). This was a tough decision because if I didn't take the Coumadin I would die for sure and the Coumadin could cause a deadly brain hemorrhage as well. I chose the risk of taking the medicine.
As you can see, I made the right choice at the time but eventually my brain surgeon took me off the Coumadin after he lost a patient who bled to death from a brain hemorrhage that he couldn't save. I now take an aspirin a day and pray as my only treatment for this huge clot in my brain.
I also now suffer from several autoimmune disorders including: Hashimoto's Thyroiditis, Crest Syndrome/Scleroderma, Raynaud's, Rheumatoid Arthritis, and Fibromyalgia, which I believe were caused from my autoimmune system working so hard to fight the brain infection, that it never turned off and now is attacking the good parts of my body.
The symptoms so far are Telangiectasias — red spots all over my face, and extreme intolerance to cold caused by the Raynaud's. I have already been hospitalized again from what I thought was a heart attack but was ruled to be a result of the Crest Syndrome/Scleroderma affecting my esophagus. It seems to also be affecting my digestive tract, swelling of fingers and toes, hardening of the skin on my hands, and now possibly even my eyes.
Scleroderma is a collagen disease, which in its extreme form hardens tissues and vital organs throughout the body and eventually kills you. The worsening Rheumatoid Arthritis causes fatigue and lots of pain in the joints throughout the whole body, and Fibromyalgia causes fatigue and pain in the muscle tissues and nervous system.
I live in a city that is experiencing a critical shortage of rheumatologists and have resorted again to the Internet to find a specialist in another part of the country who may be able to consult with my doctor about my situation.
Since there is no cure for these diseases, I just live each day as if it will be my last, making the most of every second that I have.
You may be wondering why I did not sue for tons of money. I thought it best to let the New York State Medical Misconduct Board investigate, and they found my primary care physician not guilty 2 times because it was too unusual of a case to find him guilty. I am not bitter and am using the whole ordeal as a learning experience. Hatred is the worse form of disease that anyone can have and is very destructive and a waste of time and energy.
I believe with my whole heart and soul that it is very important for my story to be heard by as many people as possible especially women who are dying by the day as I write this to you because doctors do not take their medical problems seriously enough. I have heard many horror stories since this has happened to me, and people need to know that they must start taking charge of their lives and their health care. If they are too sick to do it themselves they must appoint someone they trust to be an advocate for them.
If Arnold was not there, I would be dead and if I did not take charge when I was functional I would have been dead a second time! I was saved for a reason and I believe part of it is to help others by what I have learned and hopefully save some lives in the process.
I am very grateful for the support of my family and friends without whom I may never had made it through this nightmare. What am I doing now? I used to work 40 hours a week as a computer hardware and software purchasing agent until I became a casualty of company downsizing.
I was hospitalized in the spring of 2001 for what I thought was I thought was a heart attack but was ruled to be a result of the Crest Syndrome/Scleroderma affecting my esophagus. It seems to also be affecting my digestive tract, swelling of fingers and toes, hardening of skin on my hands, and now possibly even my eyes, as a result of my worsening autoimmune disorders, which are becoming more of a challenge each day.
I have been recently diagnosed with Osteopenia of the hips, Calcinosis and Tendonitis and drying eyes. As a result of a car accident in August and my progressively worsening autoimmune disorders I also am now suffering from severe neck, spine and back pain, numbness, tingling and pain in my arms, hands and feet, headaches, major fatigue, severe nosebleeds, irritable bowels, memory loss, inability to sleep or concentrate, anxiety and severe depression.
I am now unable to work and permanently disabled with no income and since the disability process takes so long in my state, I do not know how I am going to survive.
Singing and music are the only things that bring me any joy in life these days. I recorded my first CD in the year 2000 called Timeless (https://www.frontiernet.net/~lindaf1) that is a musical commentary on the violence that has gripped our nation.
I am currently involved with a phenomenal band called The Gregory Paul Group. Their music has been an incredible inspiration to me and has become the "soundtrack" of my life.
One of my goals is to make Rochester NY a place that is recognized by the music industry so that local talent does not feel the need to leave here in order to make it in the entertainment field. We have tons of talent in this town that needs to be "discovered" by the rest of the world. I am a member of the Arts and Cultural Council of Rochester and a founding member of what is known as the Rochester Music Coalition.
I want to create a community where musicians can live and work in an environment that is supportive of their art, and where they can live comfortably off of doing what they love best, which is making music.
I am also in the process of writing a book about the things that have happened to me before and after my life changing surgery. One of the things I would love to do before I leave this world is to sing with all my musical inspirations in some way —there are too many favorites to list here—hey everyone has the right to dream right?
I have learned a lot from what happened to me and want the world to learn from my experience before I depart from it. Please share this story with your friends and family and feel free to contact me if you have any questions or comments. Thanks for your precious time to let me share this experience with you.
Email: [email protected] Story posted 7-21-01
Story updated 1-29-02
New email address posted 7-26-03
Story Artist: Shelley Ensz
Scleroderma and CREST Syndrome
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