My Faith & Beliefs

[Guest guest]

This is the story of a lady who had the Chiari malformation.

http://members.aol.com/_ht_a/hogle5/myhomepage/faith.html

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An argument with your spouse is a loving moment lost forever.

Mom to Bear, Wife to

My Faith & Beliefs

My Symptoms Before Surgery and My Story of Healing

Lauri Hogle’s symptoms - Intermittent

dull headaches, pain in back of neck, upper shoulders, and down spine to midback are almost constant - occasionally painfree and rejoicing in those moments!

profound fatigue - disabling and unpredictable have to lay down to get through the day

joint pain in wrists, fingers, knees

“squirts of pain” in base of neck up back of head - like electrical current “gurgling sounds” in back of head - annoying and weird! ringing in ears often

chest pain-sternum and in middle of chest-off and on (EKG nonspecific) - severe at times, takes breath away, elephant on my chest

achy muscles in thighs and upper arms, calves - like the flu

cold,clammy hands and feet - anytime air temperature changes or when slightly excited or stressed chronic sinus trouble and sore throat - allergies bad in spring too

fatigue extreme - mental “fog” off and on -can’t think clearly or talk intelligently, can’t remember things, can’t keep conversation going, have to make lists to remember if I took my meds! can’t follow recipe or handle details

vision problems - blurriness, clouding over, sometimes can’t see at all/can’t process what I’m seeing

bright light is uncomfortable - have to wear sunglasses much of the time

dizziness - sometimes vertigo with everything spinning, but usually unsteady - terrible when I move my head - feel like I’m going to fall, floor tilts like when you get new glasses prescription, feel like I’m swaying (people tell me I am swaying!) high heart rate - diagnosed with POTS 1998

sudden flareups of mouth canker sores dry, crusty rash on cheeks, eyelids, forehead, and chest-itchy, comes and goes - diagnosed as rosacea

fever of 100 or less-off and on, lasts for days

weakness in hands - dropping things again-usually r.h.

pins and needles in hands and feet off and on

hot flashes and sweaty upper lip-off and on

swollen nodules in left armpit, under left ear and left back of neck

hip pain-both sides-off and on

extreme pain in base of neck , stiff neck - off and on - take muscle relaxants sometimes so I can move my neck

extreme thirst, despite drinking constantly- easily dehydrated, many trips to hospital for IV fluids

migraine headaches - severe, vomiting, at least 24 hours to recover

everything worse right before and during period

bladder - diagnosed with mixed incontinence, other times I can’t go when I need to

colon - low motility, very constipated, symptoms of obstruction twice

swallowing funny sometimes - like I can’t get the muscles to move easily

heavy legs - hard to walk sometimes chronic nausea - not bad enough to vomit, but uncomfortable

The Healing

Imagine the joy of having your first child. Your have an epidural, give birth easily, bring your baby home, you stay up at night with her, you spend every delightful moment of your day with her, you nurse her and comfort her, your whole life changes in the new season of motherhood. You go back to being your church’s pianist and organist and direct the childrens’ choirs. Your life is filled with your baby and music. Two months later, you begin dropping things. You develop pain in your wrists, fingers, knees, back. Everything hurts all the time. You drop your baby a couple of times. And you’re SO tired - you’re tired like you’ve just had surgery or you’re OD’ing on cold medicine. All the time. You also have a sinus infection that just won’t go away. The doctors can’t figure out what’s wrong. You have many of the symptoms of lupus and MS, but tests don’t confirm that definitively. By March, instead of playing the big dedication service for the church’s new sanctuary, you are in the hospital. You can’t go on anymore. You are away from your baby for the first time for a week. The doctors still can’t figure out what’s wrong. Maybe it’s depression, they say.

You go on, somehow. It gets a little better, on different drugs. Steroids, although dangerous drugs, are the most helpful. You get pregnant again - twins! While on bedrest, you feel great! You move to Chicago because your husband gets a new job. You get back to church music and direct all the choirs, sing, and play organ and piano for the new church. The symptoms begin again full force. Except this time, the headaches start. Migraine like, violent headaches. And you’re beginning to have trouble just standing up. You can’t concentrate. Your mind is fuzzy. When you stand up, it feels like you’re going to pass out. You think, how can I live like this? I have these little kids to care for. This wonderful music ministry. The doctors? Many tests and still no answers. Well, it must be lupus - that’s the only thing it could be.

You move again. Your husband gets a call from the CEO and he wants your husband on his team. This time, you’re going home to land. Your sister and parents are fairly close, which is a blessing. Your husband works for the symphony and his Board chairman is on the Board of s Hopkins. Surely they can give you some answers. You see the head lupus person - nope, it’s not lupus. OK, what is it? You have a test that reveals all of your symptoms as they tilt you to a standing position and make you stand there, still. Oh what torture - your heart problems, your headaches, your body pain, your fatigue, the fainting feeling. It all happens instantly! They know what’s wrong. But they don’t know why.

The year goes on - more symptoms develop. You are trying to hang on, but you are dying. Your bladder and bowels no longer work correctly. You go blind out of nowhere, with little warning. Your vision is so fuzzy most of the time that you can’t drive anymore. You have about an hour a day where you can get anything done. The rest of the time, you need to be in bed. The nerve impulses to the legs begin to slow down - you can’t make your legs move. You need a walker. Stairs are frightening. Your body is falling apart. They don’t know why and the many drugs you’re taking aren’t working anymore. Your seven year old ends up having to put the frozen meals from church into the oven for dinner. The kids put themselves to bed at night. They take care of you. They barely have a Mommy anymore. Your husband is stressed out - this is so hard for him to deal with. It is a life of constant fear - if I try to cut the vegetables for a salad, standing up, will I pass out? Will it ruin the rest of my day? What can I attempt to do this minute? It is a “go with the flow” life - calendars are thrown out - you can’t plan for anything. You can’t promise you’ll be there - most likely, you’ll have to back out at the last minute. Thank God for our salvation in Jesus - you are actually looking forward to eternal life. You praise Him that there is no fear there of what is to come, just sadness for your loved ones.

The elders of your church gather on a wintery March Sunday afternoon and call upon God’s mercy. Many have prayed for your healing in the past. You have prayed constantly for healing over the seven years of pain and illness, hoping for an instant miracle. You know God is capable - He can do anything. You have searched your soul for sin, you can’t figure out why this is happening to you. Why Lord?

Three days after the elders pray, you develop a sudden high fever in the middle of the night while your husband is out of town. The next day, as you are passed out on the couch, the ambulance takes you to the hospital and you’re there for almost a week - you have tonsilitis of all things! But because of your illness, it makes everything in your body worse. You come home and drag yourself to the computer to check emails from the other sick people who have become a part of your support. There are hundreds. You delete most, too tired to care, but one catches your eye. It’s about tonsils - wow, Lord, could my tonsils be causing all this? It’s from a woman whose daugther is having surgery on her cerebellar tonsils. Huh - a part of your brain called the tonsils. You read the study she includes and you freak out! It’s about you - all of your symptoms are there! Where is her surgery? Oh Lord - you’re kidding me - s Hopkins! A new surgeon is there who can fix this. You shriek with delight and fax it all to your doctor. He freaks too and orders yet another MRI.

Two weeks later, the MRI results are normal, except for degenerative arthritis in top of spine (as always). Your heart sinks. But your doctor says, no, I’m taking this to the surgeon and let him look at it. The surgeon says, oh yes - she needs surgery. I may be able to help her.

Brain surgery - the brain is too big for my head! I always knew I was super intelligent! They needed to remove a chunk of my skull and spine to make room for my brain and allow spinal fluid to flow again. To take the pressure off spinal nerves. And praise God, as of May 28, I have been rescued from death and am in a new season of life. I am the Mommy I always wanted to be. The wife, the musician, the child of God who has the energy to praise Him now. All symptoms are completely gone, with them exception of the hives. ALL symptoms are gone. All is normal, healthy, functioning. I can go to the zoo with the kids, stand and run in the heat of summer, drive anywhere, get through a very busy day working full time and need no nap. I walk two miles a day when I make the time. I am restored and healed completely!

God knew - He planned everything. My surgery was cutting edge - only a few surgeons are doing it. This required coming to Baltimore. Having and knowing how to use the Internet. Having the connections. Being at my new church for that physical support, emotional support, and prayer support. I could not have made it through last year without my Bible study group and my beautiful sisters in Christ who cooked for me, prayed for me, cleaned my house, took my kids. He healed me. He did a miracle.

But He waited - seven years, He waited. I now know why - there are lots of reasons. Now I am able to help others I’ve met on the Internet - they’re having the surgery too and they’re being healed. If I had been instantly healed, that would not be happening. Millions of people who may be incorrectly diagnosed with fibromyalgia and chronic fatigue syndrome could be potentially fixed if they have this too! One of the most important reasons for this suffering was that spiritually, it took this to bring me to my knees and give up control of my life to the Lord. I am a workaholic, a perfectionistic, organized, be on top of everything and in control kind of person. This has changed - I count on God’s leading for my life. This has produced deep roots in me. I was just a baby tree before this, even thought I didn’t realize it.

So often, we pray and pray for things and the answer is wait or no. Let’s rest in His loving arms and KNOW that He knows what is best. He knows the big picture. He knows you so completely. He LOVES you so perfectly.

Deut 31:8 - “The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear, or be dismayed.”

28:20 - “And be sure of this - that I am with you always, even to the end of the world.”

Psalm 121:4 -”He is always watching, never sleeping, Jehovah Himself is caring for you.”

A Journal Article That Helped Me Learn

Spine, skull surgery may help many with CFIDS, FMS: Chiari malformation or squeezing of spinal cord may be common in CFIDS, fibromyalgia. By Hoh ( Hoh is editor of The CFIDS Chronicle) The CFIDS Chronicle, May/June 1999 pages 10-12 Copyright © 1999 The CFIDS Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398 (800) 44-CFIDS. Reprinted here with permission.

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For some patients with CFIDS and fibromyalgia, the crux of their problems may be all in the backs of their heads.

New research is focusing attention on neurological conditions in which the brain stem or upper portion of the spinal cord is compressed. All the signals that go from the brain to the body and vice versa must pass through this narrow passageway, just about a half an inch in diameter. When this nerve passageway is squeezed, a person can experience the same assortment of symptoms that are familiar to persons with CFIDS and fibromyalgia [see list at end of article].

The best known of these conditions is the Chiari malformation, in which the cerebellar " tonsils " (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.

Symptoms from these conditions often don't develop until adulthood, when the compression may grow more severe or may be triggered by an injury such as whip-lash, surgery that involves hyperextending the neck, or prolonged coughing. Thus, onset of symptoms may be gradual or sudden. And symptoms may vary widely according to the individual.

Sound familiar? Difficult diagnosis, vague symptoms - but there is an enormous benefit to patients when this diagnosis can be made. There is an accepted and generally effective treatment.

Treatment for these conditions is surgery to expand the space available for the brain stem and spinal cord. This is done by removing bone from the skull and/or the cervical (top seven) vertebrae. Neurosurgeons who perform the surgery report that most patients experience significant and broad improvement of symptoms, beginning almost immediately following surgery and progressing with time as the spinal cord recovers from the compression. While it is not at all clear whether surgery can relieve all the symptoms associated with CFIDS and fibromyalgia, some fibromyalgia patients who have undergone the decompression surgery have reported that their tender points completely disappeared.

" We're very hopeful that this will be the first real, viable treatment for many people, " said Rae Gleason, director of the National Fibromyalgia Research Association (NFRA) in Salem, Oregon. The NFRA is funding a $150,000 study to determine the percentage of fibromyalgia patients who have a Chiari malformation or spinal cord compression.

" The treatment is not 100%, " Gleason said. " Each person gets back a different kind of quality. Of the people I've talked to, the most dramatic improvement has been that headaches are gone. Number two, fatigue is greatly decreased, and flares seem to be limited. For some people, the irritable bowel syndrome is basically gone. So the relief comes in different ways. "

At this point, the optimism needs to be tempered with good science. " This is not yet something we can tell people to run out and do. I think we will find a high per-centage (for whom the surgery will be appropriate), but it will not be the answer for everyone, " Gleason said.

Neurosurgeon Dr. Rosner of Charlotte, N.C., found the possible connection between CFIDS/fibromyalgia and spinal cord compression in the process of diagnosing and treating a physician who was disabled by CFIDS. He agreed that it's prema-ture for patients to start seeking diagnosis and treatment from their local neurosurgeon because awareness of the possible connection between the condition (absent the actual herniation of the cerebellar tonsils) and CFIDS/fibromyalgia is still low. Research is just beginning to be published on this topic.

" We're looking at this as a subset of patients, " Dr. Rosner said. " Fibromyalgia and chronic fatigue syndrome may be many diseases, but clearly there is a big chunk of them who may be surgical (candidates). "

The Type I Chiari malformation (Type II is related to spina bifida and hydrocephalus and is found in infants) was first identified in 1891 and was considered to be rare before the development of MRI scans. Even with MRI scans, however, the diagnosis is frequently missed because of the way radiologists usually scan the neck. They're looking for herniation of the cerebellar tonsils, Dr. Rosner explained, but a spinal canal or foramen magnum that is congenitally narrow, not misshapen, would be reported as normal. Rosner said MRI scans typically do not account for the curvature of the spine and therefore make the diameter of the spinal canal appear larger than it really is. However, even MRIs that are done according to a protocol designed to find compression of the spinal cord may provide vague results. Therefore, Dr. Rosner explained that a judgment on whether to perform surgery is usually made with a combination of MRI scan and neurological testing.

Dr. Rosner believes that neurally mediated hypotension (NMH), which is associated with CFIDS, may well prove to be " a good objective marker " for cervical stenosis.

" The real diagnostic clue is anything that signals neurological impairment - abnormal reflexes, tingling in both arms or both legs, shooting pain, urinary frequency, inability to stand on one foot, ataxia (coordination problems), dropping things out of the hands, " Rosner said.

Fatigue and pain alone are not enough to suggest this condition, he said. In fact, before he became aware of CFIDS through that disabled physician, he would have dismissed someone who complained of being tired all the time. Now, he interviews the patient to find out the range of symptoms and what set them off.

" When you hyperextend the neck backward, " Dr. Rosner explained, " the spinal canal narrows. This happens in the case of whiplash in an automobile accident, extended dental work in which the head is bent back, coughing severely for an extended period of time, even something like painting a ceiling. " Interestingly, the surgery in breast implantation requires the head to be positioned backward while the patient is unconscious and unaware of any pain in the neck. At the same time, Rosner said, blood pressure and oxygen delivery to the spine and brain stem is lower.

" Most people get better (from those kinds of injury) on their own; some don't get better and they may need surgery.

In a paper expected to be published in May 1999 in the journal " Neurology " , Dr. Milhorat of the State University of New York in Brooklyn reports his experience with Chiari and related spinal compression. Of 364 Chiari patients he surveyed, nearly 60% had a prior diagnosis of fibromyalgia, 12% of chronic fatigue syndrome, 31% migraine or sinus headache, 9% multiple sclerosis and 63% psychiatric or malingering (some had more than one prior diagnosis). In another study, Dr. Rosner reported that 20% of the fibromyalgia patients he examined had cervical compression.

The University of Missouri is beginning a broad-based study of Chiari. It will attempt to characterize the wide variety of symptoms, analyze the MRI features, and define the short- and long-term out-comes following treatment. Preoperative evaluations will be tracked and compared with out-comes, which will be measured at one month, three months, one year, five years and 10 years. It appears patients in this study will be limited to those whose MRI scans reveal the classic herniated cerebellar tonsils. (See web site for more information.)

Of greatest interest to patients with CFIDS and/or fibromyalgia, however, is a study funded by the NFRA to determine the percentage of people diagnosed with fibromyalgia who also have the Chiari malformation or spinal cord compression. This study will involve 105 newly diagnosed fibromyalgia patients, 30 of whom will be matched by age and sex with 30 healthy controls. Patients will be selected at three sites - Oregon Health Sciences University, Dr. ; The University of Texas, Dr. I. Jon ; and town University, Dr. Dan Clauw. Each will be given an extensive neurological examination. MRI scans, done according to Dr. Rosner's specifications, will all be read " blind " by a radiology clinic in Charlotte.

Preliminary results should be presented and discussed in September at an NFRA research meeting. Dr. Rosner, who will chair that meeting, will present data

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Other research linking Chiari and cervical stenosis to fibromyalgia is being submitted to the American College of Rheumatology for possible presentation at its upcoming meetings.

The National Fibromyalgia Research Association raises funds for fibromyalgia research. For information, send a self-addressed, stamped envelope to P.O. Box 500, Salem, OR 97308.

SYMPTOMS:

The symptoms of Chiari or spinal cord compression may include:

Headache in the back of the head that may radiate behind the eyes and into the neck and shoulders. Disordered eye movements, vision changes. Dizziness, autonomic symptoms (orthostatic intolerance, NMH). Muscle weakness. Unsteady gait. Cold, numbness and tingling in the extremities. Chronic fatigue. Tinnitis (ringing, buzzing or watery sounds in the ears). Sleep apnea. Speech impairment. Hearing loss. Gastrointestinal problems, irritable bowel syndrome, frequent urination. Lack of gag reflex, difficulty swallowing. Symptoms are exacerbated by exertion, and especially by leaning the head backward or coughing.

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Words for Hoping and Coping

Isaiah 40:29-31: " He gives power to the tired and worn out, and strength to the weak. Even the youths shall be exhausted and the young men will all give up. But they that wait upon the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run, and not be weary; and they shall walk and not faint. "

From Psalm 92: " Every morning, tell Him 'Thank You for Your kindness' and every evening, rejoice in all His faithfulness. Sing His praises, accompanied by music from the harp and lute and lyre. Sing for joy! "

A prayer: " Deliver me, Lord, from the snare of self-pity, the lie that I'm no longer of value. Remind me that, when I'm unable to work, I can still be of use - I can pray, I can praise, I can be. "

Psalm 4:3: " The Lord hears when I call to Him. "

Psalm 9:10: " For Thou, O Lord, hast not forsaken those who seek Thee. "

Psalm 46:1: " God is our refuge and strength, a very present help in trouble. "

Psalm 43:5: " Hope in God, and wait expectantly for Him, for I shall yet praise Him, who is the help of my countenance and my God. "

Psalm 34:1,2: " I will praise the Lord no matter what happens. I will constantly speak of His glories and grace. I will boast of all His kindness to me. Let all who are discouraged take heart. "

Isaiah 43:1,2: " Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; and through the rivers, they will not overflow you. "

Jesus says in 11:28: " Come to Me, all who are weary and heavy-laden, and I will give you rest. "

If you are burdened and weary and heavy-laden, come to Jesus. He is the only way to cope with this. He is our only hope even when we are well! He will take your burden, He will provide you comfort, guidance, and a deep peace that is not humanly possible. There is no fear and there is nothing but hope with Him in your life. Look to Him for the answers and He will provide them. Read the Bible, which is God talking to you, and He will speak directly to you. He loves you and can bring you close to Him during your time of pain and suffering. Come to Him and He will give you rest. If you have never come to Him, if you feel up against a wall with heaviness in your heart, let Jesus help you. All you need to do is pray something like this: " Lord Jesus, I have not allowed my suffering to draw me to You. Instead, I have resisted You. I know my sin separates me from You. Please forgive me. I want to stop the old way of living. Help me to live a life that pleases You. I want to watch You help me work through this pain, this agony. Help me to be patient as I wait. Thank you for the difference You will make in my life. Amen. " The next step is find a church where the hurting and the sick are helped and where the Bible is taught, where Jesus is taught as Savior and Lord of our lives. You will be embraced and encouraged and find joy and peace despite your illness. Trust the One who is in control and has all the answers, even though you don't! He loves you so much.

Links to Other Sites

World Arnold Chiari Malformation Association

Chip's Chiari Page

research articles

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