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My MRI scans over the course of the illness were always read as normal, except indicating degenerative arthritis in the cervical area. WRONG! I was diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia in the spring of 1998 and one year later, learned the cause of all of it - chiari malformation. By that spring, I was unable to walk without a walker, unable to stand and sometimes sit without coming close to or actually fainting, experiencing hours of blindness at a time, and having trouble with my heart, colon, and bladder. It was an amazing miracle because I was diagnosed correctly in answer to intense prayer, through a source on the Internet!
When I found out about chiari and was diagnosed, I couldn't wait for the surgery! After surgery with Jon Weingart at Johns Hopkins in May, 1999, I awoke being able to see, with no dizziness, a clear thinking mind for the first time in years, and a slower heart rate. All of my symptoms, with the exception of rosacea in the skin, have disappeared and remained gone! I thank and praise God for the miracle He provided to me, my family, and thousands of others who have seen my story in the media. I hope and pray that others do not have to endure the torture of misdiagnosis and pain that I went through for those long, long years. Lauri Hogle, ACM 1, decompression surgery May 1999
I started having "cough headaches" in October 1996 (Six months after the birth of my first child.) After a month of living in denial and fear of something being very wrong with me I went to the doctor. Luckily, she ordered an MRI right away.
She called with the diagnosis of ACM and described it as "Your brain is slipping out of you head". What?!?! Thank goodness she didn't know what she was talking about! She referred my to a neurosurgeon and after a second opinion (that doctor said to live with the headaches and not have surgery) I scheduled surgery as soon as I could get it. I was decompressed Feb. 4, 1997.
The "cough headaches" were gone right away. Now I'm a proud member of the Zipperheads!
So far so good. Although, I always wondered if pregnancy and/or childbirth may have caused things to tighten and cause symptoms. Seven months ago I gave birth to my second child and haven't had any problems. If I ever start to have symptoms again I'll have the surgery in a heartbeat! Surgery is so worth living pain free!!!
Write Jodie at firstname.lastname@example.org
Jeanne Pudoff sent us this:
Five years prior to the diagnosis, I had what I thought was a comeback of migraine headaches related to peri-menapause. As my mother had migraines and I had in the past neither my doctor or I felt it was necessary to get an MRI- big mistake-. Two years ago, I was sleeping more, my energy level had dropped and I noticed being more clumsy. Again I blamed it on my age and "female" issues (I write this so other women will be willing to go for an MRI earlier than I did).
By last September I was unable to cook dinner, or even sit at the table and hold a conversation. Finally in December I had two incidents of seeing double and black out time while driving. After the first my doctors thought it was medications ( I am on anti- depressants). After the second (they changed the "causing" med), I got a cat ,scan negative, and waited to get the MRI till I arrived at the Diamond Headache Clinic. My doctor recommended to wait till then as they were more expertise in this area. I am glad I did as I am not sure a doctor in my area would have picked it up.
It was at the clinic that I was diagnosed. Though not with a sever case, 7mil on my right side, I was very sensitive to it.
I waited till 6 months after the surgery to make sure I wasn't making things up. Immediately after surgery I was no longer sensitive to light or sound the way I had been. In fact it is only now after the surgery that I realized, the light and sound sensitivity had been going on way before the headaches started 5 years ago. I am no longer falling down the stairs and when I throw things into the waste basket, more make it then do not! Mostly the headaches are GREATLY relieved, energy is back and I am able to be friend, family member and wife in full capacity these days. I am now also beginning to get off some, maybe all , my medications. I am open to any one contacting me... jpudoff@micron
My friend Melinda Weaver writes: I started having headaches soon after giving birth to my second child. My first child was delivered by C-Section, so my problems did not present themselves after that. I passed out two times (once on a roller coaster - that was a trip!), couldn't park a car in a parking spot without hitting another car or being out in the middle of the road still, couldn't close my eyes to pray without falling over in the middle of church, and many other things.
I blamed it on a really bad sinus infection, but deep in my heart I knew it was more. Finally a coworker told me she was taking me to the doctor herself if I didn't go. Luckily, my doctor sent me to a neurologist, who did a MRI that very day. He told me he would call me two - three days later if it was no big deal. He called that afternoon. I had known something was wrong when the guy doing the MRI told me that he thought he should go ahead and do my neck even though the doctor had not ordered it. He got REALLY sweet to me at that point too - he had been nice all along, but he knew something was wrong! I went to the neurosurgeon within a couple of days, and scheduled surgery for 5 weeks later. Looking back, that's the only thing I would have changed about all of this.
I wouldn't wait
that much time - I made myself, and I'm sure others around me, crazy. On
November 9, 1999, I went in for my surgery. The Sunday before that, my
church had prayed over me. That moment gave me true peace. I still cried
the morning of my surgery, not because I was scared - I knew God was with me -
but fear of the unknown. As I lay on the table with my IV dripping the
"good" stuff, my neurosurgeon came and asked me if I was ready.
I told him not really. He then told me
this surgery was totally up to me, and if I wanted out, we'd stop right there. Well, I wasn't sure if this was God speaking to me or not, so I went into some major prayer. I told God that if was not the right thing for me to get me out there. At that very moment, an anesthesiologist came to me and said the he knew that Dr. Lanford was the best and that I should quit worrying. I know this man was an answered prayer. I fell asleep almost immediately. That was right around 7:AM. I woke up enough at noon for them to tell me that I was doing great, and long enough for me to tell them to give me some drugs! At 3:PM, I woke up completely. It was just like I sat straight up from a great sleep.
I asked the nurse if it was still Tuesday, and where my husband was. She said I couldn't see him until visiting hours
at 7:PM. I cried and begged, so she snuck him in. As she was gone to
get him, I said a major prayer of thanksgiving. As soon as my prayer was
over, he walked in. We both cried, and all I could say was "I woke
up." All he could say was "You're beautiful," which after a
couple of days, I realized was SO not true! He helped me call my children (3
& 1 at the time). Their sweet voices were the best things I had ever
heard. You should have heard the shock coming from the babysitter's voice
when I said hi to her! It took me until Christmas to mostly recover.
Coming off the steroids to early, 3 different times, almost killed me, but I am
so happy now! I would do it again tomorrow. But I would never do it
without Christ on my side. Without Him, my life would not be the same,
because I would not have the healing prayers that were said for me all over the
state- making process, the surgery, or the healing. Just know this, it's
all worth it in the end!!!!
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